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Welcome to The 25% M.E. Group Website
Support Group for Severe M.E. Sufferers

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Media Contacts Needed

We are trying to build up a database of media contacts for ME Awareness etc. We would particularly like contact names & email addresses.

Please send them to the group office Thanks!

 

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Diagnosis & Misdiagnosis

The adverse consequences of poor diagnostic practice are starting to make the headlines.

On the 17th of May 2014, this piece by Joanna Lane appeared in the Daily Mail:

How doctors are failing to spot the brain injury that could be behind 30,000 cases of 'chronic fatigue'
Thousands of British patients suffering from chronic pain and fatigue could be misdiagnosed with psychological problems when they unknowingly have a type of brain damage.

Those people who complain of the symptoms are not given a series of blood tests that can pinpoint the problem, meaning the true cause is not spotted. Patients are then condemned to years of misery and ineffective therapies.

The major cause of the damage is head injury. However, viruses, tumours and even animal bites can be a trigger.

The National Institute for Health and Care Excellence was considering including the condition – called post-traumatic hypopituitarism (PTHP) – in its most recent guidance to doctors on how to treat head injury. However, when the new recommendations were published in the spring, there was no mention of the problem.

Currently, patients who present with tiredness and chronic pain are often told they have chronic fatigue syndrome (CFS), or fibromyalgia, once other physical causes have been ruled out. They are offered psychotherapy, exercise and antidepressants. However, these are currently found to be ineffective in up to 70 per cent of CFS cases.

The pituitary gland is situated below the brain, behind the nasal cavity. If the pea-sized organ is damaged, it may stop producing one or more of the essential hormones, triggering the wide-ranging symptoms of hypopituitarism.

Professor Christopher Thompson, one of Britain’s foremost experts on PTHP, says: the failure to make the right diagnosis after such [head] injury means patients miss out on essential treatment. That it’s not included in the NICE guidelines [for treatment of head injury] is nonsensical.

PTHP sufferer Jill Mizenwas misdiagnosed with CFS in 2006, having suffered from pain and blood pressure problems for almost 20 years. A former BT manager, she was advised to exercise more, but found her condition worsened.

During her illness, Jill was screened for deficiency in the hormone cortisol, a characteristic of hypopituitarism. However, the test – known as the short synacthen test (SST) – produced a normal result. ‘That was when I was told I had CFS,’ she says. Yet SST misses two of out every five cases where the cause of cortisol deficiency is damage to the pituitary.

In 2007, Jill came across a magazine article about Christine Wrighton, who was incorrectly diagnosed with CFS. ‘Eventually, after huge persistence, Christine was able to pay privately for a test which the NHS would accept. This proved she had been right all along – her pituitary was faulty. Her story opened my eyes,’ says Jill. ‘Doctors believe Christine’s hypopituitarism was caused by inflammation – she suffered rheumatoid arthritis for 30 years. In 2005 she had a virus that wouldn’t go, and the fatigue started then.’ Sadly, Christine died in July 2011.

Children & Young People

 

Legislation to introduce a ‘State Guardian’ for all children and young people in Scotland is being vigorously opposed by the TYMES Trust, in view of grave concerns regarding how this is likely to impact young people with M.E.
The experience of a young person with M.E. during the pre-legislation ‘pilot’ period features in this piece by Ben Borland from the Sunday Express, 15th June 2014:

"State guardian stood by as police called to ME sufferer's home"
Oli Smith, now 19, was a high-flying student at his local high school in the Black Isle before he developed ME, or chronic fatigue syndrome, in 2008. He missed months of schooling and his parents, Bev and Bryan, begged for help. However, despite the named person scheme, the family insist they were treated with contempt.
At one stage, after Oli used a swearword to describe his deputy head teacher in a post on his blog, his state guardian supported a decision that he should be reported to the police. His parents were stunned when two officers arrived to interview Oli at home in Fortrose during his English Standard Grade exam.
The proposal to introduce a named person for every under-18 in the country was introduced as a pilot in the Highlands five years ago and has since been lauded as a “great success”. However, campaigners say this does not take into account a number of long-running complaints from families who say the policy is intrusive.
His story emerged after the Young ME Sufferers Trust announced it would be joining a legal bid to halt the Scottish Government’s state guardian plans. The charity described the policy, now law thanks to the Children and Young People (Scotland) Act, as an “oppressive, unwarranted and illegal intrusion into family life”.
Oli – now studying for a computer games degree at Abertay University – said: “It is something that is taking the control of their own lives away from young people. The named person is supposed to put the child first but my views were never listened to at any stage.” 

 

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 Noted Activist Tom Hennessy Passes Away After 25-Yr Battle with ME/CFS
Pro Health website, 12 September 2013

On Monday, September 9, 2013, Thomas Michael Hennessy Jr. passed away in Boca Raton, Florida after a 25-year battle with ME/CFS.  He was 59 years old.

Tom Hennessy’s contributions to the ME/CFS community have been enormous. He was the originator of International ME Awareness Day on May 12th, and founded the advocacy organization RESCIND (no longer online). Although he was severely ill, Tom testified eloquently, and passionately, at numerous national and international ME/CFS conferences and meetings, never failing to drive home the point that people with ME aren’t tired, but sick.

Before falling ill with ME in 1988, Tom was a successful sales and advertising executive in Marin County, California. In spite of what he described as “chronic mono” following a severe flu, Tom continued to work 12-hour days, until a final collapse left him bedridden for 18 months. He never recovered.

On April 15, 1989, Tom was asked, at the last minute, to speak at the first international CFS conference, held in San Francisco, California. In his own words, Tom gave an “in your face” speech, which stole the show. “We are SICK, often deathly ill, and we are NOT fatigued!” he said. “If you do NOTHING else today, then lock the doors, get together and knock heads and come up with an ACCURATE definition and CHANGE THE GOD DAMN NAME!”

This speech catapulted Tom into the national spotlight, and from that day forward he remained a fierce advocate for legitimizing the illness in the face of government and insurance industry attempts to minimize the devastating effects on individuals who contract ME/CFS, as well as its cost to society as a whole.

No one could have stated the case for the eradication of the demeaning name “chronic fatigue syndrome” better than Tom. In the wake of worldwide efforts to classify ME/CFS as a psychiatric illness, and of the virtual incarceration of Karina Hansen, on the heels of the recent attempt by HHS to redefine ME/CFS out of existence, in the CDC’s continuing failure to adopt an accurate case definition, in the NIH’s refusal to fund research, in the black-listing of medical professionals who seek to treat patients with ME/CFS, and in the subversion of the very agencies and organizations that are supposed to represent our interests, but instead seek to undermine us, Tom’s words still ring out loud and true:

“There are NO more excuses. Slow people need to learn by repetition, so I again say, the theme for now and the future is ‘NO MAS!’ [No More!]“

 

CFS patients feel increasingly isolated
FemaleFirst.co.uk’, 20 Sept 2013. by Taryn Davies

Sufferers of Chronic Fatigue Syndrome (CFS) are feeling increasingly isolated due to their family and friends’ lack of understanding of their condition, a study has revealed.

The study, carried out by talkhealth, one of the UK’s leading online social Health communities, revealed that a massive 70 per cent of CFS sufferers felt that their family and friends did not understand their condition and appreciate the affect it had on their lives.

Furthermore, nearly half of the respondents felt that their condition had not been taken seriously by a medical professional, adding to their feelings of isolation.

Dr Jon Rees, a spokesperson for talkhealth comments:

“Chronic fatigue syndrome is something I see surprisingly often as a GP. It is an extremely frustrating condition not only for patients who often feel that their problems are not taken seriously but also for relatives and friends who may struggle to understand a condition that has no outward signs of physical illness. Patients may also experience cynicism from some people in the medical profession including doctors, who do not recognise CFS as a true medical condition. However GPs are increasingly realising the true impact of the symptoms and are better equipped to offer support and onward referral to specialist services.

It is vital that parents receive adequate support as CFS can have a huge impact on their quality of life. They must be fully assessed for any underlying cause that can be treated, such as underactive thyroid or coeliac disease but if no cause can be identified and the symptoms are significant, referral to a specialist chronic fatigue service can often be useful.”

The condition is also known as ME, which stands for myalgic encephalomyelitis. Myalgia means muscle pain and encephalomyelitis means inflammation of the brain and spinal cord. Both CFS and ME are commonly used terms.

 

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The Telegraph (25th June 2013)
Emily didn’t 'only’ have ME

By Naomi Whittingham

Emily Collingridge fought valiantly to publicise the extreme form of ME from which she died.

Exactly a month ago today, an inquest ruled that Emily Collingridge, an ME (myalgic encephalomyelitis) sufferer, died from the side-effects of prescription drugs she was taking to alleviate her terrible pain.

Emily had an extreme form of ME, one that is little recognised by doctors and arguably neglected in the NHS. But her death in March last year, aged 30, highlights the grim reality for those afflicted by it.

Like me, Emily had suffered from ME since childhood and we were friends for many years. We were never well enough to meet, but built a strong bond through texts, emails and letters. Her small relief from her living hell was her BlackBerry. With hands twisted by spasms and eyes that struggled to focus, she painfully typed out messages to others with ME. She worked hard to improve understanding of ME and was the author of a highly acclaimed book for those severely affected.

ME affects an estimated 250,000 people in the UK, with roughly a quarter so severely affected that they are house- or bed-bound. Despite official recognition of ME as a neurological condition, many doctors and the public persist in thinking of it as “psychological”. Including ME under the banner of Chronic Fatigue Syndrome has added to the misconception of it as a form of glorified tiredness, despite the wealth of research that points to a disease with a biological origin, affecting every bodily system.

Emily Collingridge’s condition was far removed from ''fatigue". During the final years her body was racked by pain that resisted high doses of morphine: bedridden and doubly incontinent, she had to be fed by a tube. She would vomit for days at a time and suffered frequent, life-threatening infections. These are not symptoms normally associated with ME, says Dr Nigel Speight, an ME specialist in Durham who saw Emily four months before she died. “While many doctors accept the reality of moderate and severe ME, few realise that there is a rare, extreme form. No one really knows what causes the illness, but the most severe cases can be life-threatening.”

I was 12 when I developed ME, after a seemingly innocuous virus. I went from being an active girl to an invalid who needed to be spoon-fed. I was unable to speak or open my eyes. Light, sound and touch were agony to me. Now 36, I am dependent on full-time care from my mother. I spend most of the day in bed with the exception of the occasional outing in my wheelchair. Yet I consider myself fortunate because the crippling symptoms of the early days have eased enough to allow me to take pleasure in life. I can communicate through email and Facebook, and have a wide network of friends. I’m grateful for every moment that I breathe free of agony.

In contrast, Emily spent years in darkness. Yet she never lost her sense of humour. Her fierce determination was evident at every turn. “I have so many plans, so many things which I need to do that I have to find a way to keep going,” she wrote, a few months before she died.  The toll on her was huge and she frequently questioned how much longer she could endure it. “I don’t feel very brave – just somehow trying to get from one moment to the next without collapsing into panic. Or collapsing full stop, as I honestly don’t know how much more my body can take.”

In common with many others, Emily fought a dual battle: against the ravages of the illness, and medical ignorance and scepticism. She first fell ill at six, was diagnosed at 14, and became very ill in her early twenties. It is hard to believe that someone suffering dramatic bodily spasms and vomiting uncontrollably could be viewed as exaggerating the severity of their illness. However, Emily’s mother, Jane, told me that her daughter’s last admission to King’s College Hospital in London, which lasted over two months, was marked by doctors’ seeming reluctance to accept the gravity of her condition.

A spokesman for the hospital disputes Jane’s allegations: “During Emily’s stay at King’s, we did everything within our power to treat her, and provide her with the best care possible. Our doctors and nurses spent many hours with Emily, answering her questions and doing everything possible to address any concerns she had. We explored every appropriate treatment option for her, but sadly she died in 2012.”

An inquest was held following a post mortem and the cause of death was given by the coroner last month as “respiratory arrest in an individual with clinically diagnosed ME due to the side-effects of prescription drugs and aspiration of gastric contents”. The coroner acknowledged that more research was needed into ME.

Severe ME presents challenges that the NHS is ill-equipped to deal with. Sufferers are acutely sensitive to any stimulation, making the noise and bustle of a busy hospital a form of torture. Sympathetic staff will do their best to ease the agony of sensory stimulation, but there are those who continue to view these symptoms as the patient simply being difficult. Many of us have been so traumatised by being in hospital that we would risk our lives rather than consider admission.

A year before her death, Emily penned an appeal for greater awareness of the reality of living with ME, writing: “I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now – it’s like that every single day.”

Her life was claimed by an illness that, at its most severe, has been compared to Aids and terminal cancer, yet which is trivialised far too often. Right to the end, Emily had to fight against the belief that she ''only’’ had ME.

I will carry the memory of Emily’s tenacity, courage and zest for life, always. And the one hope remaining to those of us who loved her is that her suffering was not in vain; that at least one of her dreams – proper understanding and support for those with ME – will eventually become reality.

Additional reporting: Anna McLauchlin

Emily Collingridge’s book, 'Severe ME/CFS: A Guide to Living’, can be bought at http://www.severeme.info/ .

 

ProHealth.com (April 24, 2013)

You are Not Alone

By Erica Verrillo in the USA

One of the harshest punishments that CFS/ME inflicts upon its sufferers is isolation. Human beings are social animals, and we do poorly when placed in situations that remove us from contact with other people.

Isolation is not the same as loneliness. Loneliness is an emotional state, the result of feeling alone, even when other people are present. Isolation is a state of being prevented from interacting with other people. The distinction between the two terms may appear to be a fine point, but the crucial difference is that isolation is usually imposed upon us.

Of course, there are those who voluntarily remove themselves from society, but these people – recluses – usually are content with their state of separation from the world. Why? Because they have chosen it. When people don’t choose to be isolated, when it is forced upon them by circumstances beyond their control, it is unbearable. This is why solitary confinement is the ultimate punishment for inmates in prisons. It puts people in a state of complete helplessness.

The Center for Constitutional Rights considers solitary confinement to be a form of torture – a violation of the Eighth Amendment’s prohibition of “cruel and unusual punishment.” Prisoners who are placed in solitary confinement, even for a few weeks, experience “increased anxiety, nervousness, headaches, nightmares, fatigue, obsessive ruminations, confused thought processes, mood swings, depression, memory lapses, confusion, problems with impulse control, paranoia, feelings of overall deterioration, and thoughts of suicide.” These prisoners, by and large, were healthy before being placed in solitary confinement. Imagine how this type of isolation would affect a population that is ill.

People with CFS/ME don’t have to imagine the consequences of solitary confinement on an ill population. Those who are severely ill experience the torture of solitary confinement on a daily basis. The four walls of a bedroom, for months, years on end, can feel exactly like a prison cell. In effect, it is no different from a prison. Whether your jailer is the judicial system, or the unpredictability of an illness, the result is the same.

Much like prisoners in a penitentiary, people with CFS/ME feel themselves to be stigmatized, rejected by society, ignored, dismissed, unable to fit in. Even among those who can get out and about, CFS/ME is profoundly isolating. The illness is their “dirty little secret,” something they can’t talk about for fear of being labeled as “defective.” When they do dare to bring up the topic, they inevitably become objects of misplaced advice (“You should work out!”), psychologizing (“Were you abused as a child?”), false sympathy (“I’m tired, too…”), and all the other well-intentioned but ultimately distressing comments that anyone with CFS/ME dreads having to respond to. If you combine this social minefield with the physical limitations imposed by CFS/ME, and then add the very real fear that the illness will result in the loss of a job, or a spouse, or friends, the isolation becomes complete, for now it exists not just in daily life, but projects itself into the foreseeable future ... for all time.

Breaking the Chains of Isolation

According to Dan Moricoli, founder of the ME-CFS Knowledge Center, there are 24 million with CFS/ME worldwide. Other estimates place that number at a more conservative 17 million, but any way you measure it that’s a lot of people. It’s also cold comfort. Simply knowing that a lot of other people have this illness can’t help you break out of solitary confinement - or can it?

The fact that so many people are experiencing – right this very moment – exactly what you are going through is not a comfort unless you also realize that they, like you, are seeking break the bonds of isolation. They are tapping a code on the walls of their cells, hoping someone will answer. Tap back and you may find that with the right co-conspirators, you will be able to tunnel your way out of jail.

These are some of the ways people with CFS/ME have connected with one another:

Ø Support groups: Back in the days when dinosaurs roamed the earth, support groups used to meet in person. There still are support groups that have regular face-to-face meetings. But there are also a slew of groups that meet online. How do you find one? You can simply type in the words “facebook” and “chronic fatigue” into a google search. Many support groups not only have Facebook pages, but websites. State and national CFS/ME organizations also keep lists.

Ø Buddies: Having a buddy can be a real lifesaver. A CFS/ME buddy is someone who is also ill, and with whom you can compare symptoms (“I have this strange prickling feeling in my feet. Have you ever had that?”), talk about treatments (“Have you tried D-Ribose?”), commiserate ("I’m having a bad day"), or celebrate (“I’m having a good day!”), and someone with whom you can simply feel as if you don’t have to keep up appearances. Just one person who really gets it can make a huge difference. (And that person could be you!) You can often find a buddy through a support group or meet-up. But sometimes they just appear, like ports in a storm. Once you start looking for friendship, it comes knocking.

Ø Forums: There are several excellent, longstanding forums where people come to exchange ideas, talk about the latest news, chat, and generally feel welcomed into a community. ProHealth, Phoenix Rising, Hawkes’ Health, Not Crazy, ME-CFS Community, and ME/CFS Forums are among the best. Forums are great because they are organized into topics, which allows you to focus on whatever area interests you.

Ø Yahoo Groups: It is surprising how many yahoo groups there are for people with ME/CFS. If you do a google search on “Yahoo Groups”, then, once you are in the directory, type in “chronic fatigue” or “Myalgic Encephalomyelitis” in the “Find a Yahoo Group” bar, dozens of groups will pop up. Many of these groups are local, that is they are meant for people who live in a specific city or region. Yahoo groups are not just a good way to connect with people, they keep you informed about the latest news in the CFS/ME community.

Ø Meet-ups: Meet-ups are local social groups that share a common interest. Like old-fashioned support groups, meet-ups get together in person. There are 115 CFS/ME meet-ups in 8 countries.

Ø Blogs: ME/CFS Blogroll is a list of over 300 CFS/ME blogs started by Elisa, a longtime ME/CFS advocate. In her words, “It helps with the isolation - to "hear" all our voices and views and it gives me hope to find help... and to feel better, some day!” I couldn’t agree more. It is very liberating to read a blog post that expresses precisely how you feel. What’s more, you can always leave a comment, or start a blog yourself. Free expression is an excellent safety valve for the frustrations of “down time.”

Ø Helplines: Many CFS/ME organizations provide helplines. These are usually staffed by volunteers and are meant to help people with CFS/ME find support groups, local physicians who may be receptive to patients with CFS/ME, legal help for obtaining disability, and other sorts of assistance. Although much of this information can be found online, it is nice to talk to a person who is helpful and sympathetic.

A final word ...

Don’t give up on finding fellow inmates! You are not alone.

Erica Verrillo is the author of Chronic Fatigue Syndrome: A Treatment Guide ,2nd Edition. You can visit her website at http://www.cfstreatmentguide.com/.  Erica also posts regularly  at http://cfstreatment.blogspot.co.uk

 

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Sonia Poulton’s Blog
19 September 2012 9:03 PM  (Mail Online)

‘ME is no more ‘in the mind’ than Multiple Sclerosis. When is the world going to get that?’

Ever since I first wrote on the subject of Myalgic Encephalomyelitis – or to afford it a more user-friendly title, ME – earlier this year for Mail Online, I have been overwhelmed by the response from patients and their loved ones.

The over-riding message I have received has been one of gratitude. I can tell you that this is something of an unusual experience for a journalist writing for national newspapers.

These people have Facebook-ed and Tweeted me. I have received calls and e-mails. There have been forums addressing the article and pictures and cards received which outlined a sense of relief for millions of people.

Many of these voices – including some of the greatest scientific, legal and academic minds in the ME world – have echoed a collective sigh to see their illness validated in the media.

The very notion that the media, and the press in particular, can actually serve a positive purpose in society may come as a surprise. But sometimes it does. And my piece, according to the phenomenal response that greeted it, was just one of those times.

Here’s why:

For decades, people who have suffered the debilitating – and sometimes fatal – condition of ME have been forced into a type of denial.

They have been told that their illness doesn’t really exist on the scale that they claim to experience it (due, in part, to it being labelled a ‘chronic fatigue syndrome’. A highly controversial description because it creates an image of something substantially less than what ME actually is).

They have been told, repeatedly, to ‘pull themselves together’ and to ‘G.E.T. A G.R.I.P.’ (a vile acronym actually used to describe the graded exercise prescribed, wrongly, to ME patients).

In short, it is not enough for people to have to endure serious multi-system issues that can leave them bed-bound for months at a time, but they are also made to feel bad for, well, feeling bad.
What an injustice.

From the insight I have gained into the ME world, I cannot overstate the consequences of such a twilight-type existence. One in which your body responds a specific way but you are told that it isn’t actually possible. That it’s not really happening. That you are imagining it.

And that myth, of it ‘being in the mind’ has been perpetuated worldwide.  Millions of sufferers have been left in the dark to deal with their illness.  Sometimes, if they are fortunate, they will be supported by their loved ones – who are also in need of support, too – but often they are left to deal with it alone.  For those reasons, certainly, many ME patients may suffer depression but it is not the other way around – and it is deplorable to suggest it is.

It may surprise you to learn that I have detractors or, as modern parlance would have it, haters. These people troll me on the internet as if their lives depended on it.

Around about now they will be making comments like ‘get the violins out – here comes a sob story’. Well, ME is a sob story. And the way patients have been portrayed is grossly wrong and that injustice must be recognised as such.

In my experience, they are anything but cranks or victims but people who have simply waited too long to have the truth of their experience recognised.

And that, partly, arrived yesterday with the launch of the Lipkin Study, a significant multi-centre study into ME.

Chances are you may think otherwise for, as is common with any major ME announcements, there were a number of misleading reports prior to the press conference.  Subsequently, representatives from the ME society have announced their intention to pursue media outlets and seek rectification of some articles that have emerged.  In short, much of the media misunderstood the Lipkin study findings. Partly because some reports jumped-the-gun and took information from rumours and speculation rather than wait for the official announcement. But, it also occurred because the mis-information fed into already-established prejudices.

Many people, and for whatever reason, want to believe that ME is nothing more than feeling a little world-weary and tired.  It is nothing of the sort.  It is a neurological condition that savages the body.   People die from ME and millions across the world are being mistreated and misdiagnosed as a consequence of poor and hostile reporting.

Yesterday’s announcement – that ME was not a result of the XMRV virus – seemed to herald, to some, the idea that ME is not the result of any virus but is, in fact, a psychological condition.  Wrong. Wrong. Oh, and for good measure, wrong again.

Many highly-respected and learned people have compared the overall devastation of ME to illnesses including Multiple Sclerosis and even AIDS – and with good reason.  Dr. Charles Shepherd of the ME Association responded to the misleading idea that ME cannot be contracted by any virus by saying:

“There is, in fact, a great deal of robust anecdotal and research evidence to demonstrate that a number of specific infections – examples include enteroviruses, dengue fever, glandular fever, hepatitis, parvovirus, Q fever, Ross River virus – trigger ME/CFS.”

Many ME sufferers like Dr. Shepherd have little doubt that their illness was triggered by one of these viruses. The problem has been getting it recognised and appropriately treated.  This is a poor response, certainly, and even more so when you factor in that the World Health Organisation acknowledged it as a neurological condition over 30 years ago, then it becomes more than a little alarming.

But there have been powerful forces at play that have served to maintain the status quo on ME thinking, and they have proven more than a challenge to be reckoned with.  For the past 60 years, the illness has been hijacked by the psychiatric community as one of ‘theirs’. They have clutched ME to their collective bosom and have refused to release the iron-grasp on it.  This wholesale insistence of it being something that can be overcome with the right attitude has been highly detrimental to those who actually matter in this debate: the people who are suffering with it.  As a consequence, ME patients have been failed in terms of adequate treatment and significant funds are dove-tailed into Cognitive Behavioural Therapy and, even worse, Graded Exercise – which has been shown to have a detrimental impact on the health of ME patients.

The problems about treating a physical illness in a psychological manner are brilliantly explored in Angela Kennedy's ‘Authors Of Our Own Misfortune?’ which tackles the topic with some considerable aplomb.

What we are dealing with here is a systematic neglect of ME patients – and we should be under no illusion about that.  Equally, we must be sure to tackle it – medically and in the media – without hysteria or bile.

One of the reasons that ME patients are so vocal is because the mis-information of their illness has resulted in a dangerous delay of appropriate research and treatment. If that were you, would you be quiet about it? I certainly would not!  So yes, ME is a modern-day scandal. The way it has been portrayed is shocking. The Lipkin study, despite its detractors, will enable a deeper exploration of the illness and how it impacts and ravages bodies and lives.  And, to the relief of ME sufferers worldwide, that understanding cannot come a moment too soon.

‘ME is no more ‘in the mind’ than MS’

Posted on September 26, 2012 by JJ

Sonia Poulton 21 September at 06:30 (Mail Online)
Professor Simon Wessely has responded to the above article ….

Woke to find a long e-mail from Professor Simon Wessley…for those who don’t know, he is the big State cheese when it comes to ME…for many people his name represents years of their personal misery.

My recent article on ME, effectively, opposes his stance on the illness and I have been repeatedly warned that I can expect a communication from him…well it came…he says I ‘may be surprised to discover’ that he agrees with most of my article and then he goes on to detail how much of it he actually didn’t like at all.

He didn’t like me blaming psychiatry for standing in the way of research and treatment…he didn’t like that I didn’t give him credit for his ‘contribution to the debate’ and he most definitely did not like the idea that I say graded exercise is detrimental to the patient…oh no! That did not impress him at all.

He said it all in a very nice way but it doesn’t take much to pick up the true tone of how someone feels about you…anyway, he invited me to meet him for a coffee to discuss his stance further…I have pointed out to him that I am extremely busy at the moment but I will be back in touch.

The truth is this…I have done my research, and he knows it, and while as a journalist I should always be prepared to hear the other side of the story (I am) there comes a point when you know what you know and no amount of sharp words can change that…

 

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Sonia Poulton’s Blog
19 September 2012 9:03 PM  (Mail Online)

‘ME is no more ‘in the mind’ than Multiple Sclerosis. When is the world going to get that?’

Ever since I first wrote on the subject of Myalgic Encephalomyelitis – or to afford it a more user-friendly title, ME – earlier this year for Mail Online, I have been overwhelmed by the response from patients and their loved ones.

The over-riding message I have received has been one of gratitude. I can tell you that this is something of an unusual experience for a journalist writing for national newspapers.

These people have Facebook-ed and Tweeted me. I have received calls and e-mails. There have been forums addressing the article and pictures and cards received which outlined a sense of relief for millions of people.

Many of these voices – including some of the greatest scientific, legal and academic minds in the ME world – have echoed a collective sigh to see their illness validated in the media.

The very notion that the media, and the press in particular, can actually serve a positive purpose in society may come as a surprise. But sometimes it does. And my piece, according to the phenomenal response that greeted it, was just one of those times.

Here’s why:

For decades, people who have suffered the debilitating – and sometimes fatal – condition of ME have been forced into a type of denial.

They have been told that their illness doesn’t really exist on the scale that they claim to experience it (due, in part, to it being labelled a ‘chronic fatigue syndrome’. A highly controversial description because it creates an image of something substantially less than what ME actually is).

They have been told, repeatedly, to ‘pull themselves together’ and to ‘G.E.T. A G.R.I.P.’ (a vile acronym actually used to describe the graded exercise prescribed, wrongly, to ME patients).

In short, it is not enough for people to have to endure serious multi-system issues that can leave them bed-bound for months at a time, but they are also made to feel bad for, well, feeling bad.
What an injustice.

From the insight I have gained into the ME world, I cannot overstate the consequences of such a twilight-type existence. One in which your body responds a specific way but you are told that it isn’t actually possible. That it’s not really happening. That you are imagining it.

And that myth, of it ‘being in the mind’ has been perpetuated worldwide.  Millions of sufferers have been left in the dark to deal with their illness.  Sometimes, if they are fortunate, they will be supported by their loved ones – who are also in need of support, too – but often they are left to deal with it alone.  For those reasons, certainly, many ME patients may suffer depression but it is not the other way around – and it is deplorable to suggest it is.

It may surprise you to learn that I have detractors or, as modern parlance would have it, haters. These people troll me on the internet as if their lives depended on it.

Around about now they will be making comments like ‘get the violins out – here comes a sob story’. Well, ME is a sob story. And the way patients have been portrayed is grossly wrong and that injustice must be recognised as such.

In my experience, they are anything but cranks or victims but people who have simply waited too long to have the truth of their experience recognised.

And that, partly, arrived yesterday with the launch of the Lipkin Study, a significant multi-centre study into ME.

Chances are you may think otherwise for, as is common with any major ME announcements, there were a number of misleading reports prior to the press conference.  Subsequently, representatives from the ME society have announced their intention to pursue media outlets and seek rectification of some articles that have emerged.  In short, much of the media misunderstood the Lipkin study findings. Partly because some reports jumped-the-gun and took information from rumours and speculation rather than wait for the official announcement. But, it also occurred because the mis-information fed into already-established prejudices.

Many people, and for whatever reason, want to believe that ME is nothing more than feeling a little world-weary and tired.  It is nothing of the sort.  It is a neurological condition that savages the body.   People die from ME and millions across the world are being mistreated and misdiagnosed as a consequence of poor and hostile reporting.

Yesterday’s announcement – that ME was not a result of the XMRV virus – seemed to herald, to some, the idea that ME is not the result of any virus but is, in fact, a psychological condition.  Wrong. Wrong. Oh, and for good measure, wrong again.

Many highly-respected and learned people have compared the overall devastation of ME to illnesses including Multiple Sclerosis and even AIDS – and with good reason.  Dr. Charles Shepherd of the ME Association responded to the misleading idea that ME cannot be contracted by any virus by saying:

“There is, in fact, a great deal of robust anecdotal and research evidence to demonstrate that a number of specific infections – examples include enteroviruses, dengue fever, glandular fever, hepatitis, parvovirus, Q fever, Ross River virus – trigger ME/CFS.”

Many ME sufferers like Dr. Shepherd have little doubt that their illness was triggered by one of these viruses. The problem has been getting it recognised and appropriately treated.  This is a poor response, certainly, and even more so when you factor in that the World Health Organisation acknowledged it as a neurological condition over 30 years ago, then it becomes more than a little alarming.

But there have been powerful forces at play that have served to maintain the status quo on ME thinking, and they have proven more than a challenge to be reckoned with.  For the past 60 years, the illness has been hijacked by the psychiatric community as one of ‘theirs’. They have clutched ME to their collective bosom and have refused to release the iron-grasp on it.  This wholesale insistence of it being something that can be overcome with the right attitude has been highly detrimental to those who actually matter in this debate: the people who are suffering with it.  As a consequence, ME patients have been failed in terms of adequate treatment and significant funds are dove-tailed into Cognitive Behavioural Therapy and, even worse, Graded Exercise – which has been shown to have a detrimental impact on the health of ME patients.

The problems about treating a physical illness in a psychological manner are brilliantly explored in Angela Kennedy's ‘Authors Of Our Own Misfortune?’ which tackles the topic with some considerable aplomb.

What we are dealing with here is a systematic neglect of ME patients – and we should be under no illusion about that.  Equally, we must be sure to tackle it – medically and in the media – without hysteria or bile.

One of the reasons that ME patients are so vocal is because the mis-information of their illness has resulted in a dangerous delay of appropriate research and treatment. If that were you, would you be quiet about it? I certainly would not!  So yes, ME is a modern-day scandal. The way it has been portrayed is shocking. The Lipkin study, despite its detractors, will enable a deeper exploration of the illness and how it impacts and ravages bodies and lives.  And, to the relief of ME sufferers worldwide, that understanding cannot come a moment too soon.

‘ME is no more ‘in the mind’ than MS’

Posted on September 26, 2012 by JJ

Sonia Poulton 21 September at 06:30 (Mail Online)
Professor Simon Wessely has responded to the above article ….

Woke to find a long e-mail from Professor Simon Wessley…for those who don’t know, he is the big State cheese when it comes to ME…for many people his name represents years of their personal misery.

My recent article on ME, effectively, opposes his stance on the illness and I have been repeatedly warned that I can expect a communication from him…well it came…he says I ‘may be surprised to discover’ that he agrees with most of my article and then he goes on to detail how much of it he actually didn’t like at all.

He didn’t like me blaming psychiatry for standing in the way of research and treatment…he didn’t like that I didn’t give him credit for his ‘contribution to the debate’ and he most definitely did not like the idea that I say graded exercise is detrimental to the patient…oh no! That did not impress him at all.

He said it all in a very nice way but it doesn’t take much to pick up the true tone of how someone feels about you…anyway, he invited me to meet him for a coffee to discuss his stance further…I have pointed out to him that I am extremely busy at the moment but I will be back in touch.

The truth is this…I have done my research, and he knows it, and while as a journalist I should always be prepared to hear the other side of the story (I am) there comes a point when you know what you know and no amount of sharp words can change that…

 

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ME is often dismissed – but sufferers like Emily Collingridge are dying

Guardian.co.uk, 30 March 2012

by Scott Jordan Harris

 

On Sunday 18 March, Emily Collingridge, a beautiful 30-year-old activist and author, died after she was apparently no longer able to struggle against the chronic illness that had afflicted her since she was six. Major news organisations have all but ignored her death – the death of a noteworthy campaigner while suffering from the very condition she tried to persuade the world actually existed – just as they continually ignore so many important stories about the illness she had.

That illness is a neurological condition called myalgic encephalomyelitis or ME. There are many who think it is not real and many others, even within the medical profession, who think it is a psychological condition best treated with enforced exercise, which only worsens its effects. Even those doctors and lay people who acknowledge the illness often refer to it by the ridiculous name “chronic fatigue syndrome”, which is almost as damaging to ME sufferers as the symptoms we suffer.

Fatigue is what a person feels after a hard work day or an intense session at the gym. It is a gentle tiredness that makes the back ache slightly and the eyelids a little heavy. It is cured by a nap or a reviving espresso. Collingridge was beyond bedridden. She was crippled by incessant agony and dependent on morphine. She was fed through a tube and her body couldn’t cope with noise, light or movement. She was doubly incontinent and experienced periods of both blindness and paralysis.

Around a year ago, she wrote, “I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now.” She is now dead. To call the illness that savaged her “chronic fatigue syndrome” is like calling stomach cancer “chronic upset tummy”.

Remarkably, she was – in her healthier periods – able to write a book called Severe ME/CFS: A Guide to Living, which is an invaluable text for many ME sufferers. It is published by AYME, the Association for Young People with ME, of which Collingridge was a prominent member. Her most important work, though, was her appeal for adequate biomedical research into ME.

I recently wrote a piece for the website of the Chicago Sun-Times, discussing both my history of ME and my reactions to the new documentary Voices from the Shadows. For anyone who wishes to understand the agony ME can inflict, and the dangerous ignorance endured by many who have it, the film is a must-see. One of the ME sufferers it profiles is Sophia Mirza, the first person in Britain whose death was officially listed as being caused by chronic fatigue syndrome. Another is my late friend, Lynn Gilderdale, whose mother assisted in her suicide after Lynn’s condition became unendurable.

Both Mirza and Gilderdale suffered – and perhaps died – because of the unforgivable actions, and also the unforgivable inaction, of members of the medical profession. Mirza was committed to a mental institution to treat an illness that was purely physical and never recovered from the damage that did. Gilderdale, too, was referred to a psychiatrist when she needed physicians working from the results of cutting-edge studies. The question we must ask is obvious: how many young people like them, and like Collingridge, have to die before their illness is taken seriously and huge, well-focused efforts are made to cure it through properly funded biomedical research?

 

Collingridge was a great light for thousands of victims of severe ME whose lives pass in almost total darkness. It is essential that her tragedy is not overlooked. We must all understand that the cause she championed in life – the urgent need for proper recognition of, and research into, ME – is made even more urgent by her death.

 

Paisley MSP urges politicians to work together for M.E.

Paisley Daily Express, 12 April 2012
by Jeff Holmes
 
A CAMPAIGNING politician is urging fellow MSPs to back her efforts to raise awareness of a devastating illness.

 
West of Scotland MSP Mary Fee wants to turn the spotlight on Myalgic Encephalopathy, also known as ME, which is often misunderstood by members of the public who have had no experience of the condition.

 
ME is recognised by the World Health Organisation as a neurological condition and can result in muscle pain, with intense physical or mental exhaustion, relapses and specific cognitive disabilities.

 
The condition can affect people of any age, although it’s more common among those aged between 25 and 45 and is more prevalent in women than men.

 
It is estimated that more than 250,000 people in the UK suffer from ME – or Chronic Fatigue Syndrome, as it is sometimes known.

 
Now Labour woman Ms Fee has invited colleagues from all political parties to take part in ME Awareness Week 2012 by attending a special event at Holyrood on Tuesday, May 8.

 
Ms Fee is convener of the Scottish Parliament Cross Party Group on ME, which helps to bring both sufferers and those with an interest in the illness together to provide MSPs from all parties with information and expertise on issues affecting sufferers, their families and carers.

 
The ME event, which will take place in the Garden Lobby of the Scottish Parliament, will be hosted by Ms Fee and will include speeches from experts Jo Bluett and Dr Gregor Purdie.

 
Ms Fee said: “Unfortunately, there are still plenty of misconceptions surrounding ME in Britain today and we are hopeful that this event, and the awareness week in general, will help to counter these.

 “Those who suffer from ME aren’t getting the support and care they need and are under constant threat of losing their benefits due to ignorance surrounding the illness.

 
“Action for ME believes that more than half of those who suffer from the condition will end up losing their jobs due to the illness.”

 
Campaigners claim that, while scientific research has come on in leaps and bounds in other areas, due in part to government funding, ME has been left well behind.

 
Ms Fee added: “We still don’t know what causes Myalgic Encephalomyelitis nor how to cure it.

 
“I hope that this event will help highlight the work that still needs to be done regarding the condition and would ask all Paisley Daily Express readers to get in touch with their local MSP and ask them to attend the event.”

 

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Media items in Winter 2011 Newsletter

Summer is traditionally known as the ‘silly season’ for news reporting. This was never truer than in 2011, when a plethora of shallow and ill informed reporting that did nothing to promote understanding of the reality of living with ME went almost entirely unchecked.
Many newspapers and other media sources ran a story claiming that researchers working in the field of ‘ME’ had received ‘death threats’. (To the best of our knowledge the only substantiation of this that has been put forward is that several had been sent a verse of a Bob Dylan song called  ‘Masters of War’. And it wasn’t made plain when reporting that this was a song verse - it came across as direct invective.)
Even the ‘quality’ press was not immune. We responded to problematic pieces that appeared in The Guardian and The Telegraph. You can find details of the offending articles and the 25% ME Group responses - none of which were published - on the media page of the Group’s website.
Below is reproduced a dreadful article which appeared around this time in a Bedfordshire newspaper,  plus a letter of complaint sent in by a reader who doesn’t have ME but felt strongly enough to take the time to write a response.

 

ME sufferers' threats are no way to gain our sympathy

Luton on Sunday 07/08/2011 

Steve Lowe News Column

A few years ago I wrote a column suggesting ME was the new back pain.  I said it may well be genuine but is difficult to define and quantify, which made it almost impossible to treat.

I received letters from upset ME (myalgic encephalomyelitis) sufferers, and a couple of abusive missives, who thought I was saying it was not an illness at all but just a modern excuse, which is not what I was saying.

I was quite surprised by the tone of some of the letters, which made me wonder if they were protesting too much. I received no letter of complaint from back pain sufferers.

Looking at recent events, I can consider myself lucky.

Researchers into the causes of ME have been receiving death threats by those suffering the complaint.

They believe that research into possible psychological causes for the condition is an attempt to downplay their symptoms.

It is difficult to see, with the illness making many patients either bed-ridden or wheel-chair bound, how they might carry out their threats but scientists are taking them seriously. ME sufferers are mad and would be hopping mad if they could hop.

ME, also know as chronic fatigue syndrome, is allegedly caused by infections in the blood, although no-one knows quite why.

The symptoms include extreme tiredness and aching muscles and there are those – not me I hasten to add – who feel it is not a genuine illness.

Hence the annoyance leading to dire threats by some sufferers on the notion it may be psychological.

Some scientists have been intimidated and personally abused to try to get them to focus on the idea that the condition is caused by a virus rather than it being all in the head. They are angry and frustrated that all the Government funding is apparently looking only at the psychological aspect of the illness.

Some scientists have withdrawn from the research, being unused to receiving abuse from those they are trying to help.

In the days when we had a bit of money, it was known as yuppie flu, and seemed akin to a kind of burn-out.

But the patients want it proved that it is something they have caught, rather than being given it by themselves to themselves.
There is some scepticism, as there is a variant of the symptoms which seems to attack teenagers, who find it hard to get out of bed.
While back pain can be very genuine and very painful it can also be an easy way to a day off if the cricket is looking exciting and you have run out of grandparents whose funerals you need to attend.
I am sure that ME is genuine and people are really suffering.
But they do their cause little good by threatening scientists who they feel are going in the wrong direction.
Apart from anything else the scientists will stop going in any direction and leave them to their fate.
And if it is do to more with the workings of the brain than a virus, does that make it any less an illness?

Response letter of complaint by Kate John, Luton

SIR – I am writing to complain about Steve Lowe’s column “ME sufferers’ threats are no way to gain our sympathy’ published on August 7.
I would like to begin by stating that I do not have ME. I have never had ME nor has anyone in my family. Furthermore this is the first time I have ever complained about an article written in your newspaper or any other. Having read such an offensive (not to mention badly written) column however, I feel compelled to make a complaint – and am hopeful that there are many others doing the same.
I understand that there are differing medical opinions about ME and whilst it is an understandably sensitive issue to many sufferers and their families/carers, public discussion and debate are usually a healthy response to such complicated matters.
Mr Lowe states emphatically that it isn’t currently known whether ME is a disease with a psychological or physiological cause. But he then biases the entire article against ME sufferers with mentions of “yuppie flu” and “a variant…. which seems to attack teenagers, who find it hard to get out of bed”, not to mention likening sufferers to those claiming to have back pain when they want an “easy day off” and “the cricket is looking exciting”.
He also lumps all ME sufferers together, painting an entirely fictional picture of every ME sufferer in the country standing in the way of medical research and issuing death threats. If Mr Lowe has no sympathy for ME sufferers it would be far less offensive to just come out and say it. This kind of subversive and manipulative writing is what we expect from tabloid trash, not local news.
But the astonishing part of the column is the section in which Mr Lowe jokes about ME sufferers’ disabilities: “It is difficult to see, with the illness making many patients either bed-ridden or wheelchair-bound, how they might carry out their threats… ME sufferers are mad and would be hopping mad if they could hop.”
Even as I type these words I am in utter disbelief that the Luton on Sunday could print such offensive, mean-spirited jokes about people with disabilities.

I would be interested to know whether there have been other instances in which the wheelchair-bound or bed-ridden have been mocked in this way, or whether the paper has allowed this because the editor shares Mr Lowe’s (not very well-hidden) views about ME specifically.

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Media Mischief Summer 2011

Summer is traditionally known as the ‘silly season’ for news reporting. This was never truer than in July and August of 2011, when a plethora of shallow and ill informed reporting that did nothing to assist the cause of better recognition of the reality of living with ME went almost entirely unchecked.

__________

Beginning on Friday July 29th, many newspapers and other media sources ran a story claiming the ‘scientists’ working in the field of ‘ME’ had received ‘death threats’ from patients and their representatives

BBC  Radio

Radio 4 ‘Today’ programme 29th July (flagship morning news magazine):
'Vicious campaign' against ME researchers (12min.31sec)
http://news.bbc.co.uk/today/hi/today/newsid_9550000/9550992.stm
This item is also available as two separate segments:
'Malicious' harassment of ME researchers (4min.26sec)
http://news.bbc.co.uk/today/hi/today/newsid_9550000/9550947.stm


Scientists working on chronic fatigue syndrome or ME have received death threats and are being subjected to a campaign of abuse. Professor Simon Wessely of King's College London describes the threats that have been made against him.
'Frustration' over ME science (6min.38sec) Charles Shepherd
http://news.bbc.co.uk/today/hi/today/newsid_9551000/9551024.stm


A number of researchers working on Chronic Fatigue Syndrome or ME have been directly targeted in a campaign of abuse and intimidation by those angry at any association of the condition with mental illness.
Dr Charles Shepherd, medical adviser to the ME Association, said that personal intimidation was both "unacceptable" and "counter-productive". "It puts good researchers off, there's no doubt about that," he told Sarah Montague. But putting the anger "into context", Dr Shepherd explained how the medical profession had re-defined the illness to include a "wider spectrum" of conditions and triggers. "There may be a psychological input to the illness in some people... but the anger, the frustration, is the fact that all this government funding has just been going to [researching] the psychological side."
He added that until different sub-groups had been explored properly, a cure could not be found.

"I don't want to see scientists leaving the field, I want a debate with scientists... it should be conducted through the medical journals, it should be conducted through constructive criticism. Intimidation and personal abuse has no role to play in this whatsoever

 

BBC Radio 5 Live 29th July:Victoria Derbyshire interviews Dr Esther Crawley
http://www.bbc.co.uk/programmes/b012nlcv - no longer available to listen to
“A scientist researching chronic fatigue syndrome or M.E. tells us about the death threats and hate emails she's received. The abuse is being carried out by campaigners who object to any research which suggests the disease could be a mental illness.”

News Agencies
Agence France Presse (AFP) 29th July: Chronic fatigue scientists get 'death threats'
http://www.google.com/hostednews/afp/article/ALeqM5i-TTz3WhWP57ODI_RaLtFL4tpcaQ?docId=CNG.2ffb46ba6b1be5db2d6f75f4440c5c02.541

 

A NUMBER OF NEWS SOURCES PICKED UP ON THE AFP FEED
FRANCE 24 - the new 24/7 international news channel – website 29th July - British chronic fatigue scientists get 'death threats'
http://www.france24.com/en/20110729-british-chronic-fatigue-scientists-get-death-threats


The Straits Times – Singapore English Language Newspaper - 29th July: British chronic fatigue scientists get 'death threats' also used AFP source above
http://www.straitstimes.com/BreakingNews/World/Story/STIStory_696203.html


SKN Vibes – St Kitts, Windward Islands - 29th July: British chronic fatigue scientists get 'death threats'

http://www.sknvibes.com/news/newsdetails.cfm/36236

 

Newspapers
The Telegraph 29th July: ME researchers 'receive death threats from sufferers'
lhttp://www.telegraph.co.uk/health/healthnews/8669893/ME-researchers-receive-death-threats-from-sufferers.html

Daily Mail 30th July: Scientists investigating ME get 'death threats' for investigating psychological causes (Jenny Hope)
http://www.dailymail.co.uk/health/article-2020241/Scientists-investigating-ME-death-threats-investigating-psychological-causes.html#ixzz1VNh3cUdQ

The Times SOUTH AFRICA 29th July: Chronic fatigue scientists get death threats
http://www.timeslive.co.za/scitech/2011/07/29/chronic-fatigue-scientists-get-death-threats

 

COVERAGE IN ’THE TIMES’ & ‘THE SUNDAY TIMES’
The Times newspapers are not free to view, so as well as links to the papers’ website, we have posted links to sites where you can view these articles, or posted the article in full below.

The Sunday Times 31st July (Rod Liddle, commentary): Shoot the medical messenger – see if that’ll cure you
http://www.thesundaytimes.co.uk/sto/comment/columns/rodliddle/article680496.ece
The MEA have placed this article on their website (it directly attacked the MEA in a vey intemperate and quite unwarranted fashion): http://www.meassociation.org.uk/?p=7373

The Times (David Aaronovitch): Don’t take it ill, but there’s no medical utopia
http://www.thetimes.co.uk/tto/opinion/columnists/davidaaronovitch/article3114338.ece
http://www.meassociation.org.uk/?p=7504


The search for a biological answer to all our problems is a false trail. We humans are more complicated than that.
I'm not a scientist, not a doctor, not an economist, not an epidemiologist, not a statistician, not really an expert on anything, except maybe conspiracy theories. But one possible value that a gadfly like me can have is in noticing, over time, certain fashions and repetitions in thought and behaviour ˜ certain cultural tics ˜ and pointing them out. And this is the one that I have been sweltering over this hot August week.
Following the BSE crisis in the Nineties ˜ as a non-expert ˜ I watched a certain kind of populism take hold on the question of disease and medicine. I was first really aware of the turn that it had taken during the Frankenfood scare of 1998, when genetic modification became somehow an enemy of the people. GM was unnatural, untested, a product of a nexus between greedy Big Pharma and weedy, bankrolled politicians. Tom Archer heroically trashed his uncle's experimental GM crops on Radio 4, Newsnight ran reports on a doctor who might have discovered harmful effects in potatoes, HRH expressed dismay, Michael Meacher and the new Labour Government bottled it and the British GM industry was more or less destroyed.


The counterpoint was the whole foods and organic products campaign, with its suggestion that if you ate "naturally" you would be healthier than if you imbibed "cocktails" of chemicals into your body. And just a few years later the MMR scare provided some of the exact same themes. Big Pharma and the vax-happy docs, together with neglectful, unlistening governments, had effectively delivered autism to thousands of children under the guise of helping them. Again something unnatural had been put into people, and this explained the otherwise inexplicable ˜ why the incidence of autism appeared to be rising.


What was interesting here, as it had been about aspects of the anti-GM campaign, was the utter conviction of the campaigners that they saw and knew something that the authorities were denying. Added to this was the power of anecdote ˜ the authentic knowledge on the part of parents that it was the MMR jab that had been responsible, and that to deny it was to deny their experience and their pain.
MMR added to the GM scare the extra dimension of an explanation for why things were as they were. But because the stakes were much higher for MMR ˜ the real health of millions of children who might suffer from the reintroduction of measles, mumps and rubella ˜ the backlash, though slow, was powerful. Andrew Wakefield, the champion of the non-existent autism link, went, in three years, from media hero to compromised villain.


What we are talking about here is why people believe what they believe. And it brings together two recurring ideas ˜ that something comes from outside us to make us ill or unhappy, and that we can or have discovered what that something is. At which point, of course, we could act to expel it or cut it out. Added to these ideas, in recent times, is the notion that certain people wish to stop us gaining or applying this knowledge, for nefarious reasons of their own.


I was reminded of this when the discussion started last week about how difficult scientists and doctors were finding it to work in the field of chronic fatigue syndrome, as it is known in Britain, or ME (myalgic encephalomyelitis) as it used to be and still is in many countries.
It is the contention of many sufferers of these debilitating conditions (overwhelmingly women) that there is a direct but undiscovered physical cause of CFS/ME, and that lack of resource, care and commitment is what stands between them and a possible cure or prevention. The problem, as they perceive it, is that the medical profession has hung its hat on the belief that this often nebulous collection of symptoms is more likely to be a manifestation of an internal problem, located in the mind. This, to the sufferers, appears to relegate their disease "merely" to a psychosomatic condition, putting them in the same unliked group as depressives or schizophrenics.
It's not an exaggeration to say that some CFS campaigners are desperate to discover an external cause for their suffering. They reject the alleviation that psychotherapeutic treatment is shown to bring, and they continue to cling to the one, unrepeatable, American study that seemed to connect CFS to a virus, XMRV.


The anxiety that CFS campaigners show for a clear, medical, physical (and hopefully, external) explanation for their illness has a fascinating counterpoint, I think, in the Happiness Lobby. This is the collection of writers, think-tanks, philosophers and others whose überthesis is that modern society is unhappy relative to previous societies, that this happiness/ unhappiness can be detected and measured through developments in neuroscience, and that policies can be adopted to tilt us back to joy.


One of the incarnations of happyism, a few years back, was that we were witnessing a declining capacity to produce the key substance, serotonin, and that the mass taking of Prozac (preventing the suppression of serotonin) would be a major way to reclaim our rightful bonhomie. Others, more recently, have suggested that greater social equality, more mutualism, more associative behaviour ( join the PTA, go to residents' meetings, take one another's kids out on jolly romps) would make us all happier. Thus we could defeat the epidemic of depression sweeping the Anglophone world.


But hardly have we begun a proper argument about happyism than neurodeterminism has come to town. This panacea variant promises (in its more vulgar forms) to tell you which bits of the brain and which chemicals are making you feel and behave the way you do. It's the action of the amygdala, it's the presence of dopamine, it's the way our cortexes light up when we're in love.
What we're offered is another eventual explanation for all our syndromes, and now we reinvest our hopes in discovery.
But I am very sceptical that it is chemicals and brain functions that make us sad, angry, aroused or frightened. My bet is the other way round ˜ that it is the emotion that is mother to the physical reaction. For, as the psychotherapist Adam Phillips has pointed out in discussing happyism, we are complex psychological organisms: bad things can make us happy, some people like unhappiness, and happiness is idiosyncratic.


This is not an argument against endeavour, but an argument against trying to reduce everything to a state of impossible clarity and imagining that we'll solve everything. Our most intractable human problem stems from the fact that we can't go back into our infancies and be perfectly remothered. Thus utopia ˜ medical or happy ˜ is never in our grasp. Better understanding, though, may be. I'll settle for it.

The Times, 2nd August (Colin Blakemore) Disease of the brain, not the mind, has no stigma (Opinion) Reunite neurology and psychiatry and chronic fatigue extremists will stop their attacks.
One of the many delights in being chief executive of the Medical Research Council (as I was) is that you make a lot of friends when you hand out public money for research. One of the downsides is the speed with which the bonhomie dissipates for some of those who do not get grants for their pet projects.


For scientists, this process of judgment by a jury of faceless colleagues and competitors was the least worst form of rejection. More difficult to handle were medical charities and patient groups pleading for more to be spent on their areas of disease, particularly those concerned with poorly understood and untreatable conditions.
To my amazement, by far the most vocal, dare I say energetic, lobbying came from some sufferers of chronic fatigue syndrome (CFS). They complained that the MRC was not spending much on research into this condition (quite right) and that what was being done was the wrong kind of research. The pleas and, from some, the anger, were directed at what these patients saw as the failure to dignify them with the recognition of the severity of theirillness.
Let me say that I have witnessed the devastating impact of CFS (sometimescalled myalgic encephalomyelitis or ME) first-hand. A young lodger in my home in Oxford in the 1980s was struck down and transformed from anout-all-night-clubbing, studying-all- day teenager into a limp body, wiped out for months. Those were the days when CFS was often pejoratively called yuppie flu. But this girl was no yuppie; and what she had was no flu.


The problem is that we still do not know what CFS is - what exactly causes the exhaustion, muscle pain and headaches. Indeed, unlike real flu, it
almost certainly is not a single medical condition. It is probably due to a
 variety of causes masquerading under superficially similar symptoms.
 Infections, including flu, can lead to persistent fatigue that outlasts the other signs of the bug. But many cases of CFS do not seem to be precipitated by an infection.


According to the NHS, a quarter of a million people in the UK at any onetime have CFS. This is three times the number with multiple sclerosis. Thecost to the NHS is substantial. The impact on the economy is enormous; the
suffering of all those with CFS is staggering.
It is understandable, then, that groups representing CFS sufferers should be concerned that public expenditure on their condition does not match its prevalence or cost. But what is harder to accept is the attempt to dictate what sort of research should be done. Some researchers have been the victims of extreme intimidation for doing "the wrong kind of research".


Professor Simon Wessely, of King's College London, has been a particulartarget - not so much for what he did as where he did it: in a department of psychiatry. Professor Wessely gave up research on CFS ten years ago becauseof the abuse and concentrates on the problems of war veterans. "I now go toIraq and Afghanistan, where I feel a lot safer," he has said.
In a petition delivered to 10 Downing Street in 2008, 8,000 people declared:"We the undersigned petition the Prime Minister to get the health service and medical profession to accept the World Health Organisation classification of ME/CFS as an organic neurological disorder and not as a psychosocial syndrome."
I can understand the frustration of patients whose lives have been ruined by a condition for which they are offered no real explanation and little prospect of treatment. But what I cannot understand is that they would vilify and even threaten those researchers who have devoted their time and skills to trying to help.
There is a deeper message here. Nearly 30 years after the Mental Health Act the stigma attached to sickness of the mind has not been overcome. Entrenched prejudice and shame surround victims. In an NHS survey this year 16 per cent of respondents believed that one of the main causes of mental illness was lack of self-discipline and will power.
Seventeen million people in the UK have poor mental health and this accounts for a quarter of the entire economic burden of disease in this country - twice the cost of cancer.


For 2,000 years physicians did not distinguish what we would nowadays call neurology from psychiatry. It was only in the first part of the 20th century that these two disciplines separated. But much of what has been learnt of the origin of brain disease in the past 50 years points to the similarity of underlying causes. Parkinson's disease, a classical neurological condition,is due to a reduction in one particular chemical transmitter in the brain, dopamine. Schizophrenia, classical madness, is partly characterised by over-activity of nerve pathways that employ dopamine. Public sympathy is massive for victims of Parkinson's; those with schizophrenia are, bycomparison, ostracised, neglected and feared.
Perhaps, as disorders of the mind are increasingly seen to be illnesses of the brain, the stigma will retreat. The medical profession needs to give a lead: reunion of neurology and psychiatry would be a good start. But patient groups, so often the inspiration for new attitudes to disease and handicap, also have an obligation not to reinforce the stereotypes.
[ Colin Blakemore is Professor of Neuroscience at Oxford University]

The Times 6th August (Stefanie Marsh) Doctor's hate mail is sent by the people he tried to cure(Interview with Professor Simon Wessely)
http://www.thetimes.co.uk/tto/science/medicine/article3116831.ece
http://www.meassociation.org.uk/?p=7552

On-line News Sources


BBC on-line: 'Torrent of abuse' hindering ME research (Tom Fielden, Science Correspondent, Today Programme) http://www.bbc.co.uk/news/science-environment-14326514

Public Service – 29th July: ME research ''being hampered by abuse''
http://www.publicservice.co.uk/news_story.asp?id=17034
“We are the provider for all your public sector information needs. Our contributors include UK and foreign ministers, senior civil servants, experts and academics, discussing the latest initiatives and projects along with case studies and comments on Best Practice. .., we also present Public Servant Daily, a daily electronic news and information service [including] content from the acclaimed Public Servant magazine.”

Medindia – ‘Asia’s premier health portal’ - July 29: Chronic Fatigue Syndrome Researchers Get 'Death Threats' (VR Sreeraman)
http://www.medindia.net/news/Chronic-Fatigue-Syndrome-Researchers-Get-Death-Threats-88392-1.htm

Top News US – 30th July: Threats Push Chronic Fatigue Syndrome Experts to Quit Their Research (Satish Karat)
http://topnews.us/content/242178-threats-push-chronic-fatigue-syndrome-experts-quit-their-research

Top News New Zealand – 30th July: Chronic fatigue scientists getting 'death threats' (Pallavi Sharma)
http://topnews.net.nz/reports/217161-chronic-fatigue-scientists-getting-death-threats

The Economist blog – 30th July: Chronic fatigue syndrome - Head case
http://www.economist.com/blogs/babbage/2011/07/chronic-fatigue-syndrome

Visit Bulgaria – 30th July: Researchers Studying Chronic Fatigue Receive Death Threats (Anna Tomova)
http://visitbulgaria.info/17074-researchers-studying-chronic-fatigue-receive-death-threats

 

Responses


Publicservice.co.uk: The real victims of ME are those with the disease (David Allaby) http://www.publicservice.co.uk/blog_story.asp?id=308
“I will write more on my experience as a parent of an ME sufferer in Public Servant magazine.” Editor - David Allaby editor@publicservant.co.uk (01782) 711000

July 30th - Radio 5 live breakfast: ME sufferer says research should be on physical symptoms http://www.bbc.co.uk/news/health-14342161
A group of scientists working on Chronic Fatigue Syndrome, or ME, say they are being subjected to a campaign of abuse and intimidation that is hampering their work. Researchers have received death threats and been subjected to a series of complaints alleging personal and professional misconduct. Quentin Cruse has had ME for 25 years and told Radio 5 live Breakfast that more research should be on the physical symptoms.

Responses to David Aaronovich’s piece in The Times
Stephen Ralph (published on-line)
Hello there David,
I used to respect your journalism but having read your article I find yourattitude quite breathtaking. It is so easy to pick on and attack a group of patients. Those who are too severely ill to join in on the Internet will end up finding out you have attacked them in another long line of attacks from other fit and health and privileged individuals to have a mouthpiece in a reputable publication. What you have written above is in my view wholly cowardly and to be fair, in your opening salvo you admit you are not a doctor or a scientist or anyone with qualifications to support your attack.In fact, patients who have a persistence existing with ME are far more qualified than you will ever be unless of course you one day find that youare terminally ill and then you may well experience the total debility that people with ME can suffer that has been compared to end stage AIDS.
My experience and my take on ME and CFS is the following.... For 8 years I was housebound and bed bound with a diagnosis of CFS/ME until I happened to move home and changed my GP. My new GP suggested that I ought to have a fresh assessment once I had told him that I suffered from frequent painful mouth ulcers and nocturnal inflammation of my knees. I then had a battle on because there are not many specialists around this country of ours who know much about Behçet’s disease. In 2008 I was formally diagnosed as having Behçet’s disease and the treatment I am now getting has broken me out of my confinement. Over those 8 years when I was miss-diagnosed, I knew and still know of patients in the ME community who are far more severely ill than I ever was. As a retired paramedical professional - a diagnostic radiographer - my professional instinct told me that whilst there are patients out there who are in some way mentally ill, there are plenty of others - an easily abused minority - who are not mentally ill unless that is they are suffering mental
illness as a result of reading years of abuse about them in the media from doctors, psychiatrists and journalists who have never met them or known
their circumstances. I will read no more of your articles because there are far more worthwhile things I could be doing.
Sincerely, Stephen Ralph.

John Greensmith
You are too falsely modest, David, though you are wise to be aware that a little knowledge can be a very dangerous thing. Try thinking this way: If we all admit that we don't definitively know what M.E. is, why should anyone - a Psychiatrist, Journalist, for example - prefer one theory in particular, without significant research proof being required; why do some assume that, since a physical cause has not been found, the origin of M.E. must be psychiatric, rather than that there is a physical cause yet to be discovered, especially when this approach has been debunked in other illnesses like MS, whose sufferers were once treated as hysterical as M.E. patients are now and should we not be encouraged to do as much of a range of research as possible, rather than being deterred by derision and threats (which, sadly, come in this direction as well and are of no help to anyone) from straying from only the psychiatric one, which has had no impact on the number of people remaining ill over decades?

When there are, at least, two absolutely diametrically opposed views about something, aren't you the teensiest bit suspicious that, since both cannot be right, at least one faction (maybe more) has a lot to gain by holding a particular view, as a higher priority over the people they protest they are trying to help, especially when this group is saying that it is the kind of help they could do without. Look again, David. We'll give you some clues about where to dig, if you can't figure it out for yourself. You could make a name for yourself as an investigative journalist and be able to say that you are really good at one thing at least. It remains as true as ever that a little knowledge is a dangerous thing.

(Anonymous – [this was description on LocalME but if you wish to post on site I’ll seek permission to use name]


Dear David Aaranovitch
I have just read your latest contribution in the Times. You may be delighted to know that you have joined the ranks of various columnists who, perhaps unwittingly, have helped to drive another nail into the hearts of the many ME sufferers in this country (UK). My wife and I, while working in responsible positions in Canada before retirement here in Scotland, were attacked by what seemed to be a particularly nasty 'flu bug. I recovered but she did not. From that time, twenty-four years ago, I have been my wife's carer. She is sixty years old and I am a few days short of eighty. Initially she was able to participate in a limited manner in normal daily activities but has gradually been losing energy without total recharge. There were just a couple of areas in your piece that stand out to someone with a direct interest in the subject:- One, the inability to differentiate between the deeper definition of CFS and that of ME. 'CFS' is used by the British psychiatric industry to encompass both chronic fatigue patients and genuine myalgic encephalomyelitis. Seemingly unable (or unwilling) to separate these two groups, the psychatrist will proclaim ' alleviation that psychotherapeutic treatment .....' can bring, when in fact the treatment can only be applied successfully to some patients with chronic fatigue NOT myalgic encephalomyelitis. Two, you have also adopted the practice of the psychiatrists (and most of the medical profession in this country) of continuing to regard the patients of CFS and ME as one distinct entity -- greatly convenient to those skimming the surface of the facts. I do not believe in coincidence and therefore must believe that pervasive and malign influence is continually exerted upon the media by those responsible for the avoidance of the truth. Should you be willing to expand your consciousness in the serious debate I would be only too happy to provide you with more detailed information.

LocalME posting – sent to Times:
Of course there is no medical Utopia, but without biomedical research would it now be known that MS, ulcers, asthma etc were physical conditions and not 'located in the mind' as previously believed?Nevertheless, for years the government has given practically no funding to
biomedical research into ME/CFS, while pouring millions into psychiatric research. ME/CFS sufferers (including children) and their families, whose lives can be
devastated for decades, desperately want biomedical research to distinguish the various subtypes and find appropriate treatments. They should not be vilified for what, in the light of history, is surely a reasonable request.

Responses to Professor Blakemore: Letters published in ‘The Times’, 4 August 2011
http://www.meassociation.org.uk/?p=7502

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Media items in Summer 2011 Newsletter

"Got ME?

There was a serious error in your article "Got ME? Fatigued patients who go out and exercise have best hope of recovery, finds study" (Daily Mail Saturday Feb 26th).

You claimed "scientists have found that encouraging people with ME to push themselves to their limits gives the best hope of recovery." This is not what the study found or suggested. It could in fact be dangerous for ME patients to be misled by your article into thinking they should try to exercise, as a survey for the 25% ME Group for severely affected sufferers found.  In our survey 82% of respondents who had tried graded exercise deteriorated, and some of our members became severely ill because of it. The study you refer to did not at any point suggest that ME patients should "push themselves to their limits", any benefits they did find in some of the fatigued (not strictly defined ME) patients in the study were so marginal that the study seems to have been a waste of public money.

Another inaccuracy which could cause very ill ME patients distress was your claim that the retrovirus XMRV, which was discovered in ME sufferers came from a laboratory contaminant.  This is not true. What you were referring to was a study stating that laboratories studying XMRV in the future should be careful not to contaminate samples, it did not find that the completed studies had contaminated them.  The importance of hope for bedridden ME patients cannot be underestimated as some recent suicides have shown and the XMRV research you wrongly dismissed is a light at the end of a very long dark tunnel for many.

Hayley Klinger
Media Relations
25%MEGroup

 

Now doctors say M.E. is NOT caused by virus but is found in the blood

By Sophie Borland

The Daily Mail 21st June 2011

M.E. is definitely not caused by a virus despite past claims, leading scientists say.

They have ruled out a theory that the illness, also known as chronic fatigue syndrome, is triggered by little-known bugs found in blood. Two years ago researchers claimed to have made a breakthrough when they discovered a virus in blood samples of those with the condition that was not present in healthy people.

But now scientists who have looked at numerous other studies published since the discovery have dismissed the idea as 'another false claim'. M.E., which stands for myalgic encephalomyelitis, affects 250,000 Britons and is slightly more common in women than men.

Symptoms include extreme tiredness and muscle ache, and those severely affected spend most of the day in bed or are confined to a wheelchair. Experts do not know what causes it. The condition was once dismissed as 'yuppie flu', and sceptical doctors thought it was all in the mind.

In 2009 U.S. researchers discovered a little-known virus called XMRV in blood samples in nearly 70 per cent of sufferers. It was not found in the vast majority of healthy people.

But writing in The Lancet, disease experts Dr Frank van Kuppevald and Jos van der Meer said recent findings 'raise huge scepticism' about the idea that M.E. is caused by a virus. And they added that three new pieces of research 'provide the nail in the coffin'.

'Sadly, we have to conclude that the world has witnessed another false claim that gave new hope to patients with chronic fatigue syndrome, who are desperately seeking a cause for their suffering,' the scientists from the University of Nijmegen in the Netherlands concluded.

M.E. usually develops in the early 20s to mid-40s but teenagers can also be affected.

There is no cure so patients are given treatments including painkillers for muscle ache and behavioural therapy and exercise therapy for fatigue.

They are often advised to avoid alcohol, caffeine, sugar and sweeteners in case they make symptoms worse.

Although scientists do not know exactly what causes M.E., they believe it may be triggered by a combination of factors such as exhaustion, a traumatic event and an infection which weakens the immune system.

Experts also believe there may be a genetic link, with some families more prone than others.

Surveys have suggested that three quarters of M.E. sufferers have lost their job because of the condition and 2 per cent cannot leave their homes.

But it was only properly recognised as a medical condition in 2002, when the then chief medical officer Sir Liam Donaldson classified it as a 'debilitating and distressing condition'.

In 2005, a study by University College London found the physical symptoms of the disease were often exacerbated by psychological ones.

The condition is notoriously difficult to diagnose, and doctors usually classify it as sudden tiredness lasting more than six months that is not explained by another illness, exercise or hard work.

 

Spanish study concludes that CBT and GET fails to improve, and can worsen, the health of CFS/ME sufferers

Reproduced from Clwyd ME Support Group Newsletter Spring 2011

There has been another study in Spain which has just found very different results. Below is a comparison of the two studies reported in the International Association for CFS/ME

Letter to the Editor: Comment of the results of the PACE trial

The results of the PACE trial in terms of treatment efficiacy for both Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) are extremely modest to say the least and certainly not by any stretch of the imagination remotely curative – a decrease in fatigue score (range 0-33) at 52 weeks of 3.4 and 3.2 points respectively, and an increase in physical function score (range 0-100) of 7.1 and 9.4 points for each treatment respectively, compared with standard medical care. (1)

This despite the adoption of the Oxford criteria, which are so broad that they clearly fail to exclude patients with primary psychiatric diagnosis in the absence of physical symptoms. (2)

Conversely the results of another large scale evaluation of the efficacy of both CBT and GET conducted in Spain and published earlier this year demonstrated that after 12 months, intervention with CBT and GET not only failed to improve health-related quality of life HRQL scores but led to worse SF-36 physical function and bodily pain scores in the group receiving these treatments compared with standard medical care alone. (3)

It is of interest that two such similar studies both utilising comparable timescales, interventions and measures of outcome should produce such discrepant and diametrically opposed results.

Even if we take the results of the PACE trial at face value, of the 3158 patients presenting with fatigue at specialist Chronic Fatigue Syndrome clinics for potential inclusion in the PACE trial, only 641 were eventually selected for inclusion in the study. This means that 4 out of every 5 potential participants were excluded. This is remarkable – given the obvious delay between primary outpatient appointment and specialist hospital CFS clinic attendance most if not all would naturally meet Oxford criteria in the absence of major psychosis, organic brain disease and substance abuse. How only 1 in 5 of these were eventually selected for inclusion in the study and the exact criteria for such exclusion leading to such an unusual/unrepresentative ME/CFS sample are questions that must warrant further investigation.

David Sampson, BSc (Hons), MSc, MBPsychS

[1] White et al. (2011) Comparision of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. The Lancet, Published online February 18, 2011 DOI: 10.1016/S0140-6736(11)60096

[2] Sampson D.P. (2010) Close Analysis of a Large Published Trial Into Fatigue Syndromes and Mood Disorders That Occur After Documented Viral Infection. Bulletin of the IACFS/ME, Vol 18, Suuse 2, Summer 2010

[3] Núñez M Fernández –Solá J, Fernandez-Huerta JM, Godás-Sieso T, gomez-Gil E. (2011) Health-related quality of life in patients with chronic fatigue syndrome: group cognitive behavioural therapy and graded exercise versus usual treatment. A randomised controlled trial with 1 year of follow-up. Clinical Rheumatology. 2011 Jan 15. (E-publication ahead of print)

Bulletin of the IACFS/ME. 2011;18(4):107-108. © 2011 IACFS/ME

Full details can be found at:

http://www.iacfsme.org/BULLETINWINTER2011/Winter2011SampsonLetterRePACETrial/tabid/455/default.aspx

 

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Media items in Winter 2010 Newsletter

Chronic fatigue syndrome may be caused by virus, Scottish researchers find
The Daily Record, September 8th 2010
By Lachlan Mackinnon

CHRONIC fatigue syndrome may be caused by a virus, a study of children has suggested.

Scots scientists found problems in the white blood cells of kids with the illness - also known as myalgic encephalomyelitis. This suggests the children were fighting an infection, Dundee University experts found.

Professor Jill Belch said: "Some people suggest ME is a disease of the mind and here we are showing it is a disease of the body."

Around 150,000 Brits - including 15,000 children - have ME. It causes extreme exhaustion, particularly after physical or mental activity.

Twenty-five ME sufferers aged seven to 14 were assessed along with 23 healthy children. Tests found levels of free radicals - molecules which can damage cells, tissues and organs - were higher in the ME patients' blood.

They also had a greater number of white blood cells, called neutrophils, at the end of their life cycle - confirming the body's fight against infection.

Previous studies in adults also suggested ME is caused by a virus but research has proved inconclusive.

Professor Belch, of Ninewells hospital, said: "The blood changes suggest chronic inflammation. It's showing an abnormality we might be able to devise a treatment for."

Dr Neil Abbot, of ME Research UK, who funded the study with The Young ME Sufferers (Tymes) Trust, said: "Although the cause of ME is unknown, more than half of patients say it started with an infection.

The study undoubtedly adds greater scientific weight to the existence of a condition which, sadly, many still fail to acknowledge in spite of its severity."

Jane Colby, from Tymes Trust, added: "The medical profession must now take the consequences of ME in children seriously and research into treatment must be given a high priority."

 

ME patients face UK ban on donating blood
By Michelle Roberts
Health reporter, BBC News

Donated blood is screened for common infections. Patients with ME will no longer be able to donate blood in the UK under new safety guidelines.

Officials say the ban, starting on 1 November, is designed to protect the health of people with ME - also known as chronic fatigue syndrome. But the ME Association says the move is motivated by concerns that the illness may be caused by a virus similar to HIV that can be passed on via blood.

Prior to the ban ME patients could give blood provided they were in remission. But the cyclical "relapsing-remitting" nature of this chronic condition means people can become ill again.

NHS Blood and Transplant says the ban is "a precaution to protect the donor's safety by ensuring their condition is not made worse by donating blood". They say the move brings ME blood donation policy into line with other relapsing conditions or neurological conditions of unknown or uncertain origin, such as multiple sclerosis and Parkinson's Disease.

But the ME Association believes there is another reason for the ban - to protect blood recipients from a potentially blood-borne illness. “In the current state of uncertainty about a possible viral link a ban is a perfectly sensible measure to take in case it is caused by a retrovirus” Dr Charles Shepherd, Medical adviser to the ME Association. Although they agree with the ban, they say the public should be made aware of all of the reasons for it.

Experts do not know what causes ME.

But US scientists recently linked the condition to a retrovirus - known as XMRV - after finding it in the blood of many patients.

The Whittemore Peterson Institute team found XMRV (xenotropic murine leukemia virus-related virus) in 67% of ME patients compared to under 4% of the general population.

However since the 2009 discovery, published in the journal Science, other research teams, including experts in the UK, have failed to demonstrate such a link.

A spokeswoman from NHS Blood and Transplant said: "Currently there is no epidemiological evidence of a link between XMRV and CFS in the UK."

Although the evidence is patchy, the ME Association say it is enough to advise caution and recommend a ban on blood donations from ME patients.

The American Association of Blood Banks put in place a similar blood ban in June of this year as an interim measure until the true risk of transfusion transmission of XMRV is known.

The ME Association's medical advisor, Dr Charles Shepherd, said this was a well-judged approach. "In the current state of uncertainty about a possible viral link a ban is a perfectly sensible measure to take in case it is caused by a retrovirus. He said the UK ban should not leave a big gap in the blood donor pool. "Although people with ME often want to donate blood, they make up a small number of the many thousands of donations the NHS receives each year."

Seven thousand units of blood a day are needed to meet the demand of NHS Blood and Transplant alone.

The ME donor ban applies across all four of the UK's Blood Services.

The following websites have some of the best experts in the field with up-to-date information and biomedical research into the condition :
www.meresearch.org.uk
www.meassociation.org.uk
www.25megroup.org

 

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Media Items in Summer Newsletter 2010

Guardian Letters page
By Professor Malcolm Hooper
May 2010
The Editor
The growing understanding of ME shown in the recent article (The trouble with ME 14/05/10) by your medical correspondent, Sarah Boseley, is most welcome. However, there are a number of significant errors and omissions in the article.
ME is Myalgic Encephalomyelitis, which signifies muscle pain with inflammation of the brain and spinal cord (inflammation has been shown to occur, in three recent UK post-mortems) and the disorder has been classified by the WHO as a neurological disorder since 1969. The correct terminology is NOT myalgic encephalopathy, which is not classified and is a much less specific clinical term. The alternative term Chronic Fatigue Syndrome, CFS, was introduced in 1988. Its use is restricted by the WHO to ICD-10 G93.3 and excluded from use elsewhere, particularly in somatoform, fatigue, chronic fatigue, and fatigue syndromes which are classified at F48.0. The similarities in these words used in F48.0 and in G93.3 have led to much confusion, and some deception, by those seeking to reclassify ME as a somatoform disorder.


The identification of people with ME relies on accurate terminology and case definition which are essential for well designed research studies. The CDC-Fukuda 1994 definition has been shown to be non-specific, whilst the 1991 Oxford definition developed and favoured by certain influential  psychiatrists who work for the medical insurance industry, excludes neurological conditions. Studies with such heterogeneous cohorts of patients cannot provide any meaningful data for interpretation. The current Medical Research Council PACE Trial on "CFS/ME" is seriously flawed in this way since it uses the Oxford definition which embraces all states of "medically unexplained fatigue" but by definition excludes those with ME, a situation that defies logic.


The 2003 Canadian Criteria were produced by very experienced clinicians who, between them have diagnosed and treated over 20,000 patients with ME. They provide comprehensive clinical signs associated with ME, from which any competent physician should be able to make a diagnosis with the use of appropriate investigative tests many of which are restricted or proscribed in the UK by NICE. Although the recent judicial review did find against the ME plaintiffs, the decision is the subject of a legal challenge due to the alleged failure of due legal process.
The undeclared vested interest of doctors associated with insurance companies was critically exposed in the report by senior Parliamentarians chaired by Dr Ian Gibson which exposed the severe difficulties experienced by patients with ME when they seek benefits and support. This is not conspiracy theory or paranoia but a daily reality for many patients,  families and carers.
Over many years it has been demonstrated that numerous viruses are associated with ME, the most common being enteroviruses with herpes viruses (glandular fever etc) coming second.


People do die from the illness (Jason et al. Health Care for Women International 2006:27:615-626). The tragic story of Sophia Mirza, who died aged 32 from ME, has been published, together with her medical records. These demonstrate the ideological commitment of some clinicians to the somatoform model of the illness and the ignorance and inhumanity of some members of the medical profession, including sectioning of a very sick woman and accusations, in this and other cases, of MSBP (Munschausen's syndrome by proxy) with parents having only limited access to their children or even banned from any contact.


The offer of only behavioural modification and incremental aerobic exercise (CBT and GET, upon which the payment of benefits is contingent), which are management techniques and in no way curative, as allegedly effective treatments for people with a severe neurological disorder is unethical, and a betrayal of doctor's Hippocratic oath. Many surveys by ME charities, including the 25% ME Group for the Severely Affected that represents the most severely ill have shown that CBT has no lasting value and that GET is positively harmful. The most severely affected are almost totally excluded from any research studies since they are housebound or bedbound.


The recent discovery in the US of the retrovirus, XMRV, in ME/CFS patients emphasises the urgent need for biomedical studies. The acclamation of the three subsequent studies that failed to find XMRV by those who subscribe to the behavioural model of ME (which did not attempt to replicate the US study) serve merely as vehicles to discredit any suggestion that ME/CFS is a serious organic disease.


Following the demonstrated association of a retrovirus with ME/CFS, the Canadian and New Zealand governments have banned patients with ME from serving as blood donors. This accords with the current UK position that  people with ME must refrain from donating blood.
If Sarah Boseley attends the forthcoming Invest in ME conference on 24th May at 1, Birdcage Walk, Westminster, she will hear international experts addressing most of the above topics. She will be one of the few medical journalists who appear willing to listen and learn in order to understand more fully the complexities of the chronic multi-system illness that is ME. I look forward to meeting her there.

South Wales Echo
Health Matters: Simple steps will help with those tired old excuses
It was shocking enough that you included ME in your article about feeling tired, ‘Health Matters: Simple steps will help with those tired old excuses’ when ME is actually a serious organic illness, not just tiredness.  More worryingly, you then included ME sufferers in your advice to exercise for 30 minutes three times a week.  This advice is dangerous and if ME sufferers attempt it they could end up totally bedridden like many members of the 25% ME Group.  If you just feel tired it might be good to exercise, but if you have ME you will suffer from post-exertional malaise, a response to exercise which makes you ill.  Many of our members have been made very much more ill by following advice to increase activity inappropriately. There are over 4000 medical studies available documenting the immune system abnormalities, neurological problems, endocrine, cardiac and vascular involvement in ME, it is not about feeling tired, it is about being very ill.
25% ME Group

Observer, 31 January 2010
The Sure Cure
Kathryn Flett felt it was OK to pass judgement on people suffering from ME due to a brief encounter with what she calls a "tedious, debilitating...illness".  (The Sure Cure Observer 31 January 2010)  Her illness may or may not have been ME, but she is talking about something very different to the suffering endured by members of the 25% ME Group.  


We take great exception to being told my Ms Flett that sufferers should take more responsibility for their recoveries.  We are incredulous that anyone could go into print with such an ill-informed opinion.  Biomedical research has demonstrated serious biological abnormalities in ME patients, and whilst maybe in Ms Fletts case there was a psychological component to her illness, this is not so with the majority of severe ME sufferers.


One of our members was Lynn Gilderdale and I hope no-one would consider describing her illness as tedious or as psychological.  Our members are severely affected and have been for many many years, all are housebound and most confined to bed by the extent of their illness.  We were hoping for a new understanding of ME now that the stories of sufferers such as Lynn and Sophia Mirza who both lost their lives to this illness have been told.  Ms Flett has instead only contributed to the misunderstanding and misinformation about ME that has plagued us for so long.
25%MEGroup


The Guardian, Tuesday 2 February 2010
Dr Crippen
Dr Crippen stated in an article about assisted suicide, that ME is "a condition that many doctors only recognise as an inappropriately named psychiatric illness". 
Members of the 25% ME Group would like to know if it is actually still the case that doctors are ignorant of the studies showing serious immunological, neurological, endocrinological and cardiac abnormalities in ME

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Media Items in Winter Newsletter 09

Has science found the cause of ME?
Breakthrough offers hope to millions of sufferers around the world

By Steve Connor, Science Editor

Friday, 9 October 2009

Scientists say they have made a dramatic breakthrough in understanding the cause of chronic fatigue syndrome – a debilitating condition affecting 250,000 people in Britain which for decades has defied a rational medical explanation.

The researchers have discovered a strong link between chronic fatigue syndrome, which is sometimes known as ME or myalgic encephalomyelitis, and an obscure retrovirus related to a group of viruses found to infect mice.

Although the published data falls short of proving a definitive cause-and-effect, one of the scientists behind the study said last night that she was confident that further unpublished data she had gathered over the past few weeks implicated the retrovirus as an important and perhaps sole cause of the condition.

Chronic fatigue syndrome has blighted the lives of an estimated 17 million people worldwide because its symptoms, long-term tiredness and aching limbs, do not go away with sleep or rest. Famous sufferers have included the author and yachtswoman Clare Francis, the film director Lord Puttnam, the pop singer Suzanne Shaw and the Labour politician Yvette Cooper, who has made a full recovery.

The condition initially generated much controversy in the 1980s, when it was known as "yuppie flu", because some medical authorities even doubted whether it was a genuine physical illness. In the absence of a proven cause, many scientists have questioned whether there could ever be one reason behind so many different symptoms, so the latest research showing a strong link to a single virus has generated intense excitement among experts.

The study, published in the journal Science, shows that the virus, called murine leukaemia virus-related virus (XMRV), was found in 68 of 101 patients from around the US with chronic fatigue syndrome. This compared with just eight of 218 healthy "controls" drawn at random from the same parts of the US, the scientists said.

But the senior author of the study, Judy Mikovits, director of research at the Whittemore Peterson Institute in Reno, Nevada, said further blood tests have revealed that more than 95 per cent of patients with the syndrome have antibodies to the virus – indicating they have been infected with XMRV, which can lie dormant within a patient's DNA. "With those numbers, I would say, yes we've found the cause of chronic fatigue syndrome. We also have data showing that the virus attacks the human immune system," said Dr Mikovits. She is testing a further 500 blood samples gathered from chronic fatigue patients diagnosed in London. "The same percentages are holding up," she said.

If the findings are replicated by other groups and the XMRV virus is accepted as a cause of chronic fatigue syndrome then it could be possible to treat patients with antivirals, just like treating HIV, or to develop a vaccine against the virus to protect people from developing the condition, said Dr Mikovits.
"We now have compelling proof that a retrovirus named XMRV is present in more than two-thirds of patient samples with chronic fatigue syndrome. This finding could be a major step in the discovery of vital treatment options for millions of patients," she said.

The genetic structure of the XMRV virus indicates that it has evolved from a similar virus found in wild field mice. Dr Mikovits suggested it could have jumped the "species barrier" from mouse to man like many other human viruses, such as HIV, another retrovirus, which is thought to have infected humans from monkeys or apes.

XMRV was originally found in men suffering from prostate cancer and it was this discovery that led Dr Mikovits and her collaborators at the US National Institutes of Health to test blood samples stored from patients with chronic fatigue syndrome. "The discovery of XMRV in two major diseases, prostate cancer and now chronic fatigue syndrome, is very exciting. If cause-and-effect is established, there would be a new opportunity for prevention and treatment of these diseases," said Professor Robert Silverman, of the Cleveland Clinic in Ohio, who worked on the fatigue syndrome study.

However, other researchers emphasised that the numbers published so far are too small to conclude anything about the cause of chronic fatigue syndrome. "It's spectacular but needs replication. And I hope that no one is thinking of prescribing anti-retrovirals on the basis of this," said Simon Wessely, professor of psychological medicine at King's College London. "It's very preliminary and there no evidence to say this is relevant to the vast majority of people in the UK with the condition."

 

Letters from our Media Relations Rep, Hayley Klinger

To The Independent:
For patients in the 25% ME Group, many of whom are bedbound, most of whom are housebound and all of whom have suffered from the neglect you refer to in your leading article (Chronic neglect, Independent, 9 October 2009) the discovery of the XMRV retrovirus gives many reasons for optimism. Not only could this research lead to treatment but maybe this maligned group of patients will now receive the medical services, benefits and dare I suggest compassion afforded to other illnesses?  Maybe the characterising of ME as a lifestyle choice of the world-weary or fatigued will stop and the reality of this devastating illness be acknowledged? Could the tone of your leader be a sign that things have changed already, and that ME is now being recognised as the dreadfully serious, disabling illness it actually is?

To New Scientist:
Whilst ME patients are delighted to read of the new retrovirus which could be the cause of their devastating and disabling illness,(Chronic fatigue syndrome linked to 'cancer virus', New Scientist, 8 October 2009), it is disheartening that the media is still going to the psychiatric profession for soundbites on the subject.  If the discovery proves anything, surely it is to highlight how totally inappropriate it has been to have had psychiatry involved in the study and treatment of ME for so long. 

To The Netdoctor Website:
The 25% ME Group is a charity representing severely ill ME patients, many of whom have been totally bedridden for many years, some of whom are tube fed and dependent on carers and others who are lucky enough to be able to leave home occasionally in a wheelchair.

We would much appreciate a revision of your advice on the website with regard to ME especially the section with regard to CBT and illness beliefs.  

The XMRV retrovirus has been found in 67% of ME patients as opposed to under 4% of the general population.  An ME sufferer with XMRV is not an appropriate patient to advise to use CBT techniques to convince themselves their illness is not real, and I am sure you would not suggest this to HIV patients.

The trouble with assuming that medically unexplained means that symptoms are psychological ignores the rather obvious fact that it actually just means they are as yet unexplained, and to extrapolate from this that therefore illness is merely in the beliefs of the patient is not just bad science but is seriously damaging to some very ill people.  This assumption has been proved wrong repeatedly notably in MS, TB, epilepsy, ulcers and Polio and now ME - when science proves psychology wrong, it is time to retract incorrect statements and admit the mistake.

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Media Items in Summer Newsletter 09

Daily Mail, 16/12/08

By Mark Anstead

On first impression, former model Suzi Walker leads a charmed life. She lives is a luxury £2million home in Surrey with her daughter and boyfriend and in January gave birth to another daughter.

But for the past 10 years, Suzi has been struggling with CFS, also known as ME, a condition affecting 250,000 people in the UK and for which there is no cure.

Suzi’s symptoms first emerged after giving birth to her first daughter a decade ago, and over the next seven years her life was marked by pain and fatigue. Frequently exhausted, she couldn’t look after her daughter or accept any modelling assignments. The strain of dealing with the condition contributed to the breakdown of her marriage in 2006.

Having tried every treatment available, from acupuncture to vitamin supplements, it has only been in the past 2 years that she has regained any semblance of a normal life, helped, she says, by her GP’s advice to manage her energy and pace herself.

She still suffers frequent relapses – “but I’m lucky because I have now made an almost complete recovery,” she says. “There are many ME sufferers who don’t get better, but a few years ago I noticed my condition was improving. My doctor recommended rest and only gentle exercise and I suppose it has worked.

ME was first documented in the 1930s, but was considered controversial because of its wide variety of symptoms and lack of obvious cause. Symptoms can include exhaustion, sleep disturbances, sore throat, headaches, pain in the muscles and joints and concentration difficulties.

Some ME patients find their condition improves over time as did Dame Kelly Holmes who developed it in 2001, but went on to win double gold at the 2004 Olympics.

But in other cases it can be permanently debilitating, as with Lynn Gilderdale who died last week after being bedridden for 17 years, unable to talk or eat by herself.

For a long time ME was dismissed as psychological. However, as understanding about the body’s immune system developed, it’s now accepted there are physiological causes – it is thought to be triggered by bacterial or viral infection, depression and stress. Opinion is sharply divided over whether there is a psychological link.

ME was officially recognised as an illness in 2002. Although Suzi wasn’t diagnosed until 2001, 3 years after its onset, she says she knew her condition wasn’t in her mind.

If you met me at any time in the seven years after it started you wouldn’t have recognised me.” She says. “I was exhausted, depressed and often couldn’t even lift my arms. I used to try to get up each day, but if I managed to I would only have to lie down on the sofa again. Anything involving effort, such as shopping, my mum had to do it.

Suzi’s problems began when she suffered convulsions during her labour with her daughter in 1998. She had eclampsia, a dangerous form of high blood pressure and spent five days in intensive care. Back home, her energy levels hadn’t improved after three weeks. Her GP diagnosed glandular fever, which could have triggered the ME.

It was as if my body never had time to recover,” says Suzi. “ My doctor said I had nearly died from the eclampsia and that must have lowered my defences so I caught a viral infection. My glands came up, I had a sore throat and I felt very unwell. That’s still exactly how I feel whenever I have a relapse.

Three years after the onset of her symptoms Suzi was referred to a specialist at King’s College Hospital in London who reviewed her case and diagnosed her with ME....

Sadly there is still a lot of ignorance about this condition. Some patients are told to exercise because their GP thinks the problem is in their mind, but in my experience that only makes things worse. If a patient has been ill less than a year and is trying to shake it off, rest can really help.

Under NICE (National Institute for Health and Clinical Excellence) guidelines, doctors are advised that the best way to manage ME is through exercise and cognitive behavioural therapy (CBT) – helping change patients’ attitudes towards how they feel.  However, this is highly controversial as it suggests the condition is psychological, and many ME sufferers and some experts are furious that NICE has ignored evidence that ME is physiological....

Suzi adds: “I want everyone to know that having ME can really destroy your life. There needs to be more money poured into research because we still don’t understand this condition and it’s ridiculous there is still a stigma attached to it. We need to find a cure.

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The Medical Research Council: a case to answer?

Reproduced from ME Research UK article featured in their Summer Newsletter 08

In May 2003, the Medical Research Council (MRC) announced its “research strategy for CFS/ME”, widely welcomed as the first formal research strategy for the illness. It listed a number of strategic themes of particular importance (case definition, epidemiology, pathophysiology, interventions, health service research, research capacity and the value of lay participation). Subsequent initiatives by the MRC included the issue of a notice highlighting CFS/ME as a current strategic priority (2003), a CFS/ME workshop (2003), and a “Joint Action for ME” workshop (2006).

So, what research has since been funded? Well, at least five separate studies (see below) costing at least £3,180,900 have been supported. From the bald titles, it is impossible to determine what each involves, but it seems that three fall far short of being definitive (one is for “indirect support”, one is for a “CFS-like illness”, and one is simply a feasibility study, albeit an expensive one), while the remaining two are randomised clinical trials (RCTs) of psychosocial strategies.

From details published in the National Research Register (before it ceased publication in October 2007), we know that the largest (PACE) trial is a four-arm RCT comparing cognitive-behavioural therapy (CBT), graded exercise therapy (GET), adaptive pacing and “usual medical care” alone. As its blurb explained, “CBT will be based on the illness model of fear avoidance… GET… on the illness model of deconditioning and exercise avoidance”.

The FINE trial, by contrast, offers severely affected patients supportive listening, GP “treatment as usual”, or a nurse-led self-help approach which includes elements of CBT and GET delivered in the patient’s home (four 90-minute sessions, with six 30-minute phone conversations over 18 weeks), with a qualitative interview to explore “patient views on illness causation, beliefs about chronic fatigue… and previous experience of treatment and doctor–patient relationships”.

In total, approximately 91% of the total grant-spend on ME/CFS in five years has gone on trials of non-specific management and coping strategies. It is important to point out, however, that neither of these trials is actually worthless; in an ideal world in which £100 million had been invested over five years in ME/CFS research, a 3% spend on assessing the usefulness of various coping strategies, such as CBT, relaxation or meditation, might have been acceptable. The point at issue is that most of the MRC’s inadequate grant-spend has gone on this aspect at the expense of truly biomedical research, the reverse of the situation in other illnesses such as multiple sclerosis or rheumatoid arthritis. Even the dogs in the street would think this record dismal.

Thanks to the Freedom of Information Act, and the stalwart patients who have repeatedly requested information, we have a (fuzzy) picture of the research projects which the MRC has NOT funded to June 2008. They seem to total at least 33 (see the table below), some biomedical and targeted at pathophysiology. It is unlikely that these 33 applications were so badly written that they could be rejected (since some were from established researchers with a track record in this and other fields, as our personal communications have established). So, was their scientific basis less sound than, say, the “pragmatic rehabilitation” of the FINE trial, supported by RCT data on ambulant patients but only a case report on the non-ambulatory patients of particular interest?

There are three main schools of thought about what has gone on. First, that within the MRC the biopsychosocial model of ME/CFS is the current paradigm, leading referees and committee members to be chosen, probably unwittingly, to deliver a particular outcome (since psychosocial aspects colour the perception of the illness across the board, this would be no surprise). Second, that the MRC is simply a large stolid bureaucracy for which ME/CFS biomedical research has very low priority indeed given the other demand on its resources (£1.3 billion in 2008 for all types of research on all illnesses). Third, that something even more fishy is going on.

In the summer of 2008, an answer to a parliamentary written question revealed that the MRC is to constitute a CFS/ME multi-disciplinary panel. If this is a genuine attempt to kick-start biomedical investigation rather than a public relations exercise, the mystery panel’s first act could be to discover whether or not the MRC has a case to answer over the non-funding of biomedical research since 2003.

CFS/ME projects currently funded by the MRC:

(Sources: MRC website; Hansard, written answers)

· Two large clinical trials of new approaches to treating CFS/ME:
Ø PACE (Pacing, Activity and Cognitive Behaviour Therapy: a Randomised Evaluation, £2,076,363) [Prof. PD White, Psychological Medicine, Queen Mary and Westfield College
Ø FINE (Fatigue Intervention by Nurses Evaluation, £824,129) [Dr AJ Wearden, Psychological Science, Uni. of Manchester]
· A preliminary epidemiological project to test the feasibility of identifying the risk factors for persistent symptoms of fatigue and abdominal and widespread pain (£118,263) [Prof. F Creed, Psychological Medicine, University of Manchester]
· An epidemiological study to assess ethnic variations of the prevalence of a CFS-like illness, associations with potential risk factors, and coping behaviours (£162,145) [Prof. K Bhui, Cultural Psychiatry and Epidemiolgy, Queen Mary and Westfield College]
· Indirect support through a trial exploring the management of patients with persistent unexplained symptoms [Specifics unknown]
· One project was mentioned in Hansard (12th June 2008) but is not on the MRC website: General and specific risk markers and preventive factors for chronic fatigue and irritable bowel syndromes (£367,000) [Dr C Clark, Centre for Psychiatry, Barts and The London School of Medicine]

 

Experts debunk CBT “myth”

Article taken from Anxiety UK

The idea that Cognitive Behavioural Therapy (CBT) is more effective than other types of talking treatments is a myth, some experts have said.  Unlike some other talking therapies, CBT focuses on “here and now” problems and difficulties rather than delving into the past.  It also looks at changing how somebody thinks and their behaviour.

Researchers who recently attended a conference at the University of East Anglia (UEA) said it was commonly believed that CBT was superior to other methods.  But this could be because there are more published studies on CBT than any other therapy, they argued.

CBT has not been proved to be better than other therapies and such perceptions could mislead the public and harm patient care.

In a joint statement, Professors Mick Cooper and Robert Elliott, from the University of Strathclyde, Willian B Stiles, from Miami University, and Art Bohart, from Saybrook Graduate School in San Francisco, said; “The Government, the public and even many health officials have been sold a version of the scientific evidence that is not based in fact, but is instead based on a logical error.
This is how it works. One, more academic researchers subscribe to a CBT approach than any other. Two, these researchers get more research grants and publish more studies on the effectiveness of CBT. Three, this greater number of studies is used to imply that CBT is more effective.

Although CBT advocates rarely make this claim so boldly, their continual emphasis on the amount of evidence is misunderstood by the public, other health care workers, and Government officials, a misunderstanding that they allow to stand without correction.

The result is a widespread belief that no one takes responsibility for.  In other words, a myth.”

The experts said the belief has “direct negative consequences for other well-developed  psychotherapies, such as person-centred  and psychodynamic, which have smaller evidence bases than CBT.”

They added: “These approaches are themselves supported by substantial, although smaller, bodies of research.”

The scientists said a meta-analysis of more than 80 studies revealed that person-centred and psychodynamic therapies were just as effective as other forms, including CBT.

“In view of these and other data, it is scientifically irresponsible to continue to imply and act as though CBTs are more effective, as has been done in justifying the expenditure of £173m to train CBT therapists throughout England.

Such claims harm the public by restricting patient choice and discourage some psychologically distressed people from seeking treatment.”

Prof Cooper, Patron of Anxiety UK said studies suggested that it was not the therapy chosen but the client’s level of motivation, participation and ability that made a difference.  “After that, the key ingredient seems to be the quality of the therapeutic relationship, with  warm, understanding, trustworthy therapists having the best results.”

Prof Bohart added: “There is evidence that some clients prefer an approach such as counselling where the focus is on helping you explore and understand yourself.

In contrast, other clients prefer an approach where the therapist takes the lead in teaching you particular cognitive and behavioural skills, such as how to think. Since both work about equally well it is important that both be available to the public.”

A spokesperson for the Dept of Health said: “We are looking to improve our primary care interventions – that is why we launched a major new programme designed to help transform the lives of thousands of people with depression and anxiety disorders earlier this year. This will train an extra 3,600 Psychological Therapists and offer greater access to Cognitive Behavioural Therapies.

It is also crucial that a range of options are available to best suit the patient. For many people, prescribed medication is a successful treatment but psychological therapies have proved to be as effective as drugs in tackling these common mental health problems and are often more effective in the longer term.

The Improving Access to Psychological Therapies programme, which aims to improve individual’s well-being, satisfaction and choice, has already captured the imagination of Primary Care Trusts up and down the country and is transforming the lives of thousands of people with depression and anxiety disorders in the areas that have been involved so far.”

 

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Media Items in June Newsletter 08

Jan 08 To The Times

Dr Copperfield again writes of his frustration with his patients "Why doctors hate skiing injuries.  Dr Copperfield: inside the mind of an Essex GP"  The Times January 19.

Whilst I am sure some GPs will sympathise with Dr Copperfield who feels forced to see patients he considers unworthy of his very important time, I am equally sure that many will feel disappointed that he is prepared to publicly admit to the kind of contempt and scorn for patients that is usually reserved for doctor's blogs or medical conferences.

Whilst he criticises media-created syndromes Dr Copperfield appears to accept the myth of Chronic Fatigue Syndrome (CFS) quite easily, in fact he has called such patients "pond life" in the past.  CFS is a myth of huge proportions and if Dr Copperfield wishes to be such a cynic maybe he should be questioning the myth that ME is fatigue when ME sufferers complain of distressing neurological and immunological symptoms, not of fatigue.

The CFS myth has taken a genuine neurological illness (ME) and re-defined it as fatigue by renaming it CFS/ME, creating an ill-defined and easily ridiculed illness which includes seriously ill ME patients alongside virtually anyone with fatigue.   This is similar in effect to re-naming lung cancer Chronic Cough Syndrome and including sufferers alongside those with nervous, allergic and virally caused coughs.

Maybe instead of writing articles complaining about his patients Dr Copperfield would find it more worthy of a doctor's time to visit some of the members of the 25% ME Group, most of whom are so ill that they are totally bedridden and could not speak on the phone long enough to book a skiing trip never mind actually go on one.

Hayley Klinger
Media Relations
25%MEGroup

Debilitating ME in the Genesrather than in the Mind?

By Daniel Bates,  Daily Mail

The debilitating disease ME could be in the genes, scientists say.  They found that patients with myalgic encephalomyelitis shared certain genetic characteristics.

At the same time, other research suggests that those predisposed to the condition develop it once it is triggered by a bacterial illness.

At present, there is no test or cure for ME – also known as chronic fatigue syndrome or “yuppie flu” – which affects about 15,000 Britons or one in 200.

Symptoms include extreme exhaustion, sleep disturbances, memory and concentration difficulties, a sore throat, headaches and pain in muscles and joints.

In its most extreme form, it can leave sufferers – who include Dame Kelly Holmes and Emily Wilcox, the daughter of television presenter Esther Rantzen – bedridden and can even be fatal.

However, because the disease’s symptoms are so similar to flu and vary between patients, doctors are able to diagnose it only after ruling out every possible cause. Researchers from St George’s University of London claim they have now discovered 88 genetic differences between sufferers.  They say this has allowed them to divide patients into seven types, according to the severity of their symptoms.  It means a blood test could soon be developed to help diagnose the disease.

Dr Jonathan Kerr, who led the study, told delegates at the Wellcome Trust Conference Centre in Cambridge: “We must now determine what these sub-types represent, as they appear to be biologically meaningful, and discover their natural history and possibilities for treatment.

The meeting was organised by ME Research UK and the Irish ME Trust to discuss the latest advances in identifying the biological origins of the disease.

Other research announced at the conference suggested possible treatments for the disease. An American study claimed that weekly injections of immune adjuvant, which regulates the way the immune system works, could help reduce symptoms for many sufferers.

Australian research also found some ME patients had their illnesses triggered by Q Fever or Flinders Island Spotted Fever, which are caused by bacteria.

Despite the severity of the disease’s symptoms, however, questions still persist over whether it is “all in the mind

According to the World Health Organisation, ME is a neurological condition and a 2002 report from Liam Donaldson, Chief Medical Officer for England, recognised it as a debilitating condition for the first time.  But treatments are almost exclusively based on the psychological aspects of the illness.

In 2005, a study by University College London found the physical symptoms of the disease were often exacerbated by the psychological ones. Sceptics claimed it proved the illness was “all in the mind”.

 

Letter to Daily Telegraph
London (21 March 2008)

This article is taken from the Edmesh Newsletter Issue 64

Your article this week on Gene research in Myalgic Encephalomyelitis by Dr Jonathan Kerr in St George’s hospital was a breath of fresh air in the stale atmosphere of UK government funded research. Myalgic Encephalomyelitis and Chronic Fatigue Syndrome are commonly referred to as ME and CFS.

In 1955 D Melvin Ramsay reviewed a cohort of young doctors and nurses in the Royal Free Hospital in London and published a report relating to their massive debilitating fatigue. Over the years it has been shown to be a physical disease.

The cause is obscure, this obscurity has been masterfully used by psychiatrists to claim that the disease is a manifestation of a psychiatric condition, leading to an imagined problem. What arrogance!

The esteemed Royal Society of Medicine (RSM) plays to this theme by running a conference next month on ME/CFS. The speakers are swelling mainly on psychiatry, rather peculiar for a Society of Medicine.  Most of the estimated 190,000 patients in the UK who suffer from this disease are appalled. A large number of them have applied for a demonstration permit outside the RSM to bring this wrongful thrust to the nation’s and RSM’s attention.

The following week, May 6th, a conference in ME/CFS will take place at Cambridge University where the latest methods of diagnosis and treatment will be defined.  Dr Kerr will speak on the Genome in ME/CFS.  Dr Klimas, a noted researcher and clinician in Miami Floride, will speak on new developments and diagnostic methods and I will speak on the methods of treatment both in the UK and the USA.

As far as I know the RSM has not noted these physical aspects and has not altered its agenda in the April conference.

The government, through NICE, continues to waste money on proven bad methods of treatment, based on forced exercise therapy which, in a large number of cases, cause relapse.  Research on the physical basis of the disease has to be funded by private foundations, CFS Research Foundation, ME Research UK and patient money. Surely, by now, the Government should be embarrassed.

Derek Enlander, MD, M.R.C.S., L.R.C.P.

New York

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Media items from Issue 24

Daily Record
Letter: Your View –
Nothing Funny About Sick Jibe
Br Dr John H. Greensmith


My suspicion that Ricky Gervais's apology to ME sufferers was hollow after he made an offensive joke about them was
confirmed when he repeated it on the Fame tour he will bring to Glasgow and Edinburgh at the end of the month.

His comment that "there are not so many people in Africa with the 'I just can't be bothered disease' because they have more pressing issues to deal with" was worringly similar to one used in ITV sitcom Benidorm earlier this year "ME, is that the one where you can't be ar**dto do owt?"

ITV were so inundated with complaints when the latter comment was screened that they apologised in the TV Times magazine (March 3).

Yet, as with Gervais, they are now repeating the series – and the offence.

Both comments are incorrect but, like mud, they stick when repeated.

It can't be a sincere apology if you repeat the insult.

This is not about the inability of ME sufferers to take a joke.

If the public perception is that ME is "just a bit of tiredness" and that sufferers are malingerers who need to get off their backsides, they have a very wrong impression.

This devastating, disabling illness wrecks many lives.

Such "jokes" may also affect the priority for research and, in turn, hamper progress towards understanding the physical cause of this illness and finding treatments.

And that's not funny at all.

Sufferer issues test case threat
By Haydn Lewis 8th August 2007

Janis Thomson, who is challenging City of York Council over its charging policy
A WOMAN suffering from ME is taking legal action which could see City of York Council's entire care charging policy rendered illegal.
Janis Thomson, 46, of Victoria Way, Huntington, York, is to challenge the authority over its charging policy for adult social services after her monthly bills shot up by 72 per cent from £82.40 to £141.44.

janice24
If Ms Thomson wins her case it could affect 1,300 people in York who are on disability benefits and get disability-related council expenditure.
Ridley & Hall, Ms Thomson's solicitors, claim the council's policy is unlawful because there has been a failure to take account of guidance issued by the Department of Health.
They say the policy is unlawful because although York takes into account a person's disability benefits, it does not assess disability related expenditure as the law requires.
Ms Thomson, who has severe ME - also known as chronic fatigue syndrome - is confined to bed and dependant on a package of care from City of York Council's housing and adult social services department.
Her charges were increased when the council revised its charging policy for non-residential care services in April 2007.
Ridley & Hall solicitors have sent a letter threatening legal proceedings to the council. The council now has two weeks to respond.
If the council does not do what is requested, judicial review proceedings can be issued at the High Court in London.
The court has the power to declare the council's policy unlawful.
If the policy is declared unlawful, it is likely that the council will have to assess the disability related expenditure of all service users in York. It is not yet known how many people that might affect.

 

James Wilson, a solicitor at Ridley & Hall, said: "The guidance is perfectly clear. Local authorities cannot count disability benefits as income unless they have assessed the additional costs a person has due to their disability.

"I find it difficult to believe that City of York Council has approved the current policy without realising that it would breach central Government guidance."

Ms Thomson said: "The first I knew the policy had been changed was when I received a letter telling me that the council were increasing my contributions. The council never told me that it was under a duty to assess my disability- related expenditure.

"When the council does assess my disability related expenditure, my financial contribution will be much lower. There will be many people in York affected by the increase."
A council spokeswoman said: "City of York Council has now received the letter and will be responding directly to Ms Thompson's solicitors.

"The policy was decided following consultation and consideration of alternative approaches and is one that we believe takes into account disability-related expenditure for all customers and allows for consideration of additional expenditure or hardship if required."

Disability Now Sept 07

ME Charity “Don’t research behaviour”


A charity representing people with myalgic encephalomyelitis (ME) has called on the MRC to stop funding research into behavioural causes of ME.

The 25% ME Group, which represents those most severely affected by the condition, says the MRC should fund research into the medical roots of the condition instead.

A spokesman for the group, Simon Lawrence, said: “If the funding available for cancer research was all directed at how cancer patients think and feel about their disease instead of the physiology of the illness, there would be an outcry.”

The Countess of Mar, who is a patron of the group, said: “Over the last decade, many millions of pounds have been squandered on research which has totally failed to find cause, relief or cure for this painful, demoralising and socially unaccepted physical illness.”

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from Summer 07 newsletter


Daily Mail Letters

I am delighted Emily Wilcox is feeling better after many years with ME, and grateful to Esther Rantzen for her honest description of what life is like for those affected. However it is slightly optimistic of her to assume that lightning therapy has cured Emily.

Some ME patients experience periods of relative remission and it is easy to ascribe these to the treatment being tried at the time, I have read other articles by Emily about finding a cure for her ME but they were not about lightning therapy, and as Esther points out she relapsed later on.

Sadly the truth is that ME is not treatable by psychological therapy of any kind. Over 4000 studies worldwide have found serious immunological, neurological, endocrinological and cardiac abnormalities in ME patients and these just do not respond to changing the way you think! To put it bluntly if psychological therapy cures you, you either did not have ME in the first place or you were due for a remission around the time you started therapy.

The 25% ME Group is a charity representing the interests of severely ill ME patients, many of whom are totally bedridden, some of whom are tube fed and dependent on carers and others who are lucky enough to be able to leave home in a wheelchair occasionally.

For any Daily Mail readers with ME who find that lightning therapy lightened only their bank accounts, we provide support and information but sadly not a cure.

Hayley Klinger,
25% ME Group

Daily Mail (Letters)
16/1/07

My 50 year old niece suffers from ME (chronic fatigue syndrome) and is so weak, she spends most of her time lying on her bed in a semi-darkened room.

Her condition is such that she is unable to read, write, watch TV, answer the telephone and cannot stand noise of any sort. She exists in a small bungalow entirely on her own, being told there is no NHS funding to help people of her age and in her condition.

Her elderly mother did her best to look after her until she died of osteoporosis and old age a few years ago, since when I have been helping her.

I applied to the social services recently for help for her and myself. This was refused, and I was told that as I was my niece's only relative, she was my responsibility. I am 86 and suffer from high blood pressure and cholesterol, failing memory and recently lost the sight of my left eye.

As the Government gives away hundreds of millions of pounds of taxpayers money to foreign countries, could it not be persuaded to give some to the people who over many years have contributed to the well-being of this country?

 

Aberdeen Press and Journal 15/3/07

New Scheme Transforms Depressed Mum’s Life
Lorna Paterson

As a charity representing severe ME sufferers, we read with concern the article by Lorna Paterson about the return to work of Janice Christie. Whilst everyone will be delighted that Janice has returned to work and also to full health, it is very important to point out that she most definitely did not have ME as stated in the article. She was diagnosed with depression which can cause chronic fatigue, and maybe a job was just what she needed for this.

ME on the other hand is a serious neurological illness classified alongside MS and motor neurone disease and according to a leading ME specialist ".. is one of the most disabling diseases that I care for exceeding HIV disease except for the terminal stages". If you can shrug off ME and recover by taking up employment then you just did not have it and an article claiming that it is possible to do this is damaging to the bedridden, wheelchair using, severely ill ME sufferers we represent.

We would like the serious nature of ME clarified as this article gives a very distorted picture. We would like to point out that very few of our members would be capable of getting out of bed, dressed, washed and downstairs ready for work and that none of them would be capable of then actually getting to work, never mind doing the job itself. The horrible reality of ME is that although there is a lot of research showing how ill we are, there is no cure – and going back to work remains just a longed for luxury along with holidays, parties and shopping.

Hayley Klinger, 25% Group Media Rep

 

Crewe Chronicle

Letter by Hayley Klinger, Media Relations 25% ME Group to Crewe Chronicle about their recent article on reverse therapy.
"There is a worrying trend of reports about people who claim that they have been cured of ME by a number of 'alternative' treatments, including Reverse Therapy. Often the article goes on to advertise the fact that they now sell this treatment themselves. In the case of John Aitken, "Therapy gave me my life back" (Chronicle March 28th), he was diagnosed with Chronic Fatigue Syndrome (CFS) which is a name given to many different illnesses involving 'unexplained fatigue' and he himself says he did not fit any textbook diagnosis.

Unexplained fatigue is caused by and could probably be 'cured' by many things – healing, praying, exercise, cognitive behaviour and even reverse therapy. ME on the other hand is a term used by medical experts around the world for a complex multi-system illness that devastates the lives of patients and cannot be cured. Hundreds of studies worldwide have found serious immunological, neurological, endocrinological and cardiac abnormalities in ME patients and these just do not respond to changing the way you think! To put it bluntly if psychological therapy cures you, you did not have ME.

The 25% ME Group is a charity representing the interests of severely ill ME patients, many of whom are totally bedridden, some of whom are tube fed and dependent on carers and others who are lucky enough to be able to leave home in a wheelchair occasionally. It has been a hard struggle to get ME recognised as the devastating illness it really is and articles like this trivialise the severity of the illness by implying it is easily cured with a few therapy sessions. Sadly it is not and these articles raise false hopes in very sick people who have spent decades trying every treatment proclaimed as a cure usually by people who never had ME in the first place.

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December 06 Newsletter

Response from the 25% ME GROUP; leading charity for the severely affected sufferer, to the NICE draft guidelines on CFS/ME

We are extremely concerned about these draft guidelines from NICE and the proposal that the; “Key priorities for implementation are cognitive behavioural therapy (CBT) and Graded Exercise Therapy (GET).

It is stated in the draft document that: “…the therapies of first choice should be CBT or GET because there is good evidence of benefit.”

This is only true for a small number of people suffering from chronic fatigue and it is not representative of people suffering from Mylagic Encephalomyelitis, especially the severely affected sufferer.

To date, all patient reporting compiled by the ME charities has clearly shown that these therapies have been unhelpful or even caused harm in a significant number of sufferers. This is true for ME patients right across the spectrum of the disease. Indeed, from one of our own surveys, entitled Severely Affected Analysis Report, compiled in March 2004, it was found that, "…of the 39% of our members who had actually used Graded Exercise Therapy, a shocking 82% reported that their condition was made worse by this treatment. On the basis of our members’ experiences we question whether GET is an appropriate approach for patients with ME. It is worth noting that some patients were not severely affected before trying GET. Thus, it is not only people with severe ME who may be adversely affected by this form of treatment."

Also further findings from the Report referred to above showed that a massive 95% of our members found GET to be an unhelpful form of treatment for their condition and similar figures were noted for CBT, with a massive 93% who found this form of treatment unhelpful for their condition. We therefore question why these forms of treatment are still being considered as suitable for ME patients.

The other obvious and serious flaw in this draft document is the omission of the neurological nature of the condition as laid out by the World Health Organisation (ICD 10 G:93.3) and the British Government.

We would urge all NICE stake holders and their patient representatives to respond to this CFS/ME draft consultation document, highlighting their concerns in a constructive and forthright manner.

Recognition of the true nature and seriousness of Myalgic Encephalomyelitis is essential in the final NICE CFS/ME Guidelines

 

ME Verdict Seen As A Milestone
The Argus Newspaper Publication
By Charles Whitney

A coroner's decision to record chronic fatigue syndrome as a cause of death has been hailed as groundbreaking by campaigners.

It is the first time the illness has been given as an official cause of death in the UK.

Brighton and Hove coroner Veronica Hamilton-Deeley recorded Sophia Mirza's death as caused by "acute renal failure as a result of chronic fatigue syndrome."

Sufferers of chronic fatigue syndrome (CFS), commonly known as ME – Myalgic encephalomyelitis – complain doctors fail to take the illness seriously.

Campaign groups such as Invest in ME and the ME Association say that the coroner's verdict proves the illness is a neurological condition.

Art graduate Sophia, 32, suffered with CFS for six years before she died in November last year.

The condition affects the immune and central nervous system and is characterised by debilitating chronic fatigue.

Her illness meant she became extremely sensitive to light and noise and could only lie in a darkened room in her high-rise flat in the city.

Her mother, Criona Wilson, 63, of Brighton, said: "She lived in solitary confinement for five years. The windows in her flat were completely blacked out. She could only lie on her right side day and night and she couldn't stand any sort of noise."

She said a psychiatrist took such a text-book approach to her daughter's illness that he sectioned her in a mental hospital for two weeks.

Mrs Wilson said: "It's treated in this country as a mental illness. Sophia was as sharp as a razor blade and yet they sectioned her."

Evidence given by doctors to the coroner showed Sophia's spinal cord was inflamed, with 75 per cent of the sensory cells showing significant abnormalities, indicating a physical manifestation of CFS.

Dr Charles Shepherd, medical advisor to the ME Association, said: "The neuro-pathologist examined the spinal cord and found inflammation of the nervous system. You can't put that down to psychosis. It's a very important finding. Her symptoms were put down to being all in the mind. That's a very disturbing aspect of this case."

In the Eighties, ME was known derisively as "yuppie flu" for its tendency to be diagnosed in young professionals.

Dr Shepherd said "It's an illness that's got to be taken seriously and not dismissed as a trivial 'tired all the time' syndrome."

Sue Waddle, chair of Invest in ME, said the verdict on Sophia could have a positive outcome be encouraging the Government to fund research.

She said: "There isn't any funding for research. Consequently there are many people confined to miserable lives because there is no medical treatment."

Mrs Wilson said: "I would like to think other families won't have to suffer as we have. I would like to think this will make a difference."


Family Struck by Mystery Illness

The Standard, 22nd June 06

Thirty-seven years ago, the World Health Organisation classified a range of symptoms – which became known as "Yuppy Flu" – as a physical illness. Yet still today UK sufferers of ME – Myalgic Encephalomyelitis – are often treated with contempt by doctors.

This serious, long-term neurological condition affects around 200,000 people in the UK but sufferers are no nearer to finding a cause or cure. Lesley Innes talks to an Ely mother whose daughter has been robbed of the chance of a normal life because of the illness.

As a toddler Laura Judd lacked the energy to keep up with her playmates. But despite repeated visits to the doctor, her mother, Lesley, could find no reason for her young daughter's lack of stamina.

Once Laura started school she began complaining of a range of symptoms – sort throat, fatigue, sleep disturbance and intolerance to light – and gradually began missing more and more lessons.

Hospital tests followed but still the doctors were baffled as to the cause of Laura's problems.

A chest virus followed when she was 11 and although she recovered, her health went steadily downhill.

When she was 14, despite feeling ill, she begged her mother to allow her to go on a school climbing trip. "As the coach arrived back, all the children jumped off and ran up to their mothers to tell them about the wonderful time they had," said Lesley. "Finally Laura came from the back of the bus and it was as much as she could do to walk. That was the last time she went to school."

Finally, after years of searching, a chance discussion at work led occupational therapist, Lesley, to a Cambridge-based doctor who diagnosed Laura's condition as ME.

"I had heard of the illness," said Lesley, "but I hadn't realised it came on like this. I thought a person, who hadn't recovered properly from flu, developed ME and then it was a gradual recovery."

Despite the diagnosis, Laura's condition continued to deteriorate and she became confined to bed at her home in Prickwillow.

Sometimes at her worst, she was too ill to feed herself, clean her teeth or even talk.

That was 12 years ago and now, at the age of 26, Laura is still confined to her room.

She has been robbed of a normal childhood, an education, the chance to be a carefree teenager and make plans for her future.

Laura and her mother have missed out on a normal mother and daughter relationship – the chance to go shopping together, share an evening at the cinema and disagree over Laura's choice of boyfriends.

Although her condition has improved slightly and she can watch television and use her computer, Laura has a poor quality of life.

She is dependent on her parents and Lesley has given up her job to be a 24-hour carer for her only child.

"It gets tough sometimes," said Lesley. "It's not easy. Laura says she's lucky to have her mum and dad and that we have enough money to afford to try different treatments. But other times she is in absolute despair. It's a state of alert helplessness. We live a little bit day-by-day. We don't lead a normal life. Laura doesn't have friends come to visit because she can't cope with the stimulation. She has been ill for so long.

Since the doctor who diagnosed Laura retired, there is no-one in Cambridge particularly interested. There are doctors in other parts of the country but Laura is too ill to travel. So it's a Catch 22 situation."

"If we knew what we were fighting we might be able to fight it. But we don't know the beginning or the end."

Despite thousands of people suffering from ME, the only research into the disease is being carried out with the help of private donations.

"There are still a lot of doctors who won't accept that it is a physical illness," added Lesley.

"The Government has paid psychiatrists to set up graded exercises for patients. But this is not what is needed and doesn't help. What is needed is money for bio-medical research to try to find out what causes this illness and perhaps find a cure.

"I worry about the future and what will happen when I become too old or too decrepit to look after Laura."

 

Disability Now – Health Matters
Nov 06

"Extreme Concern" Over New ME Guidance

Campaigners have heavily criticised new draft guidelines from a government advice body on how to treat ME and chronic fatigue syndrome (CFS).

The draft guidance from the National Institute for Health and Clinical Excellence (NICE) suggests that two behavioural treatments should be the "therapies of first choice".

But the 25% ME Group said it was "extremely concerned" about parts of the guidance, which will apply to the NHS in England and Wales, while Action for ME said it was "very concerned".

The 25% ME Group, which represents those most severely affected by ME, said its own surveys showed the two therapies, cognitive behavioural therapy (CBT) and graded exercise therapy (GET), "have been unhelpful or even caused harm in a significant number" of people with the condition.

Dr Charles Shepherd, medical advisor to the ME Association, said there were "grave concerns" about the guidelines, which were based on "a very small number of research papers".

He said: "Where some may benefit from CBT or GET there are plenty of other people who will not."

Dr Shepherd said it would cost about £180million to pay for CBT or GET for the estimated 180,000 people with mild or moderate forms of the condition, and there were not enough cognitive therapists to provide the treatment.

He added: "There is very little in this document that we actually like."

A public consultation will last until 24 November.


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Media Items in  June Newsletter 06

Letters to the Editor, Disability Now

June 2006

After reading your news focus on the use of the Human Rights Act (DN, May, page 18) I thought readers should hear my story.

In 2000, my occupational therapy department decided I needed a profile bed with carer-lifting so my carers could give me bed-baths.  My physio also thought this was a good idea as I am unable to leave my bed and have had back pain from being propped up with pillows and slipping.  As I was sleeping in a double bed with my husband, I asked for a double bed.  This was refused as the authority would only pay for a single bed. We offered to pay for the other half of the bed, but this was refused and stalemate ensued for 18 months, with letters passing back and forth.

I took advice from the Disability Law Centre, which advised mentioning Article 8 of the Act – the right to private and family life. My advisor also told me to mention we had offered to pay for the bed, so the authority would have no legal defence.

I sent these comments and said I would wait three weeks for a reply. If unfavourable, I would take them to court.  Within three hours the authority had discovered enough money to buy the whole of my double profile bed, which was installed in December 2001.  It has made a phenomenal difference to my life.

If something similar happened in future, I would have no hesitation in using the Act again.

Sue Firth, Halifax

 

ME Research Call

Disability now - Health News (June 2006)

By Priya Kotecha

Disability campaigners have called on the government to plough greater resources into finding a treatment for ME, following claims of misdiagnosis and mistreatment by the NHS.

The 25% ME Group, which represents people with the most severe forms of the condition, accused the government of "wasting millions on inappropriate treatment" by using psychological therapies such as cognitive behavioural therapy to help treat patients with ME.

The group said: "The government has chosen to pour many millions of pounds worth of public money into funding psychologically-based treatments and management strategy therapies, which simply do not work for ME patients and indeed can cause more harm to ME sufferers.

The national support group claims 95 per cent of its members who had tried such therapies reported a worsening of their symptoms.

Instead, it is calling for the government to redirect resources into researching the physical causes of the illness, which they say is currently being funded through private donations

Action for ME, another ME charity, said psychological therapies can help "as a coping strategy to manage the illness", but reinforced calls for "fully funded biomedical research.

A spokeswoman for the Department of Health said: "It is for clinicians to decide how best to treat their patients.

She said the government had invested £8.5 million in Chronic Fatigue Syndrome/ME services via the Medical Research Council (MRC).

The MRC said it would fund proposals which had an "alternative approach" but that nothing of sufficient quality had yet been proposed.

 

ME Research Focus is Flawed

Eastern Daily Press, 5th April 2006

By Greg Crowhurst

I have spent 12 years caring for my wife, who has severe ME, and even though each day is a day of indescribable agony, I am greatly distressed by the news of a £503,000 lottery grant to UEA for ME/Chronic Fatigue Syndrome research, to be led by the charity Action for ME.

I believe Action for ME has "sold out" to the powerful British psychiatric lobby, which pursues a discredited policy of behavioural intervention and graded exercise therapy.There is not one published paper, as opposed to opinion, proving that ME/CFS is a psychiatric condition, while more than 2000 papers have been published internationally proving that ME/CFS is a neurological, physical illness and that graded exercise especially is dangerous to sufferers.

This research is bad news for sufferers, it looks like being a waste of scarce money that could be better spent on physical research and it will simply condemn sufferers like my wife to even more years of agony.

This research has nothing to offer the ME community. What is desperately needed is physical research to find a cure. Not ne penny of government funding has yet been committed to this.

 

Daily Mail, 16th May 06

By Jerome Burne

A drug used to treat herpes infections has produced a dramatic improvement in patients severely affected by ME, or chronic fatigue syndrome.

Sufferers who for years had been unable to leave their homes now report being able to resume normal life. 

This is a remarkable result for a treatment for this complex and controversial disorder that is thought to affect as many as 240,000 people in Britain and for which there is no cure.

The results, reported at a scientific conference earlier this month by Professor Jose Montoya of Stanford University in California, involved 12 patients who had been given the powerful drug, valganciclovir, which targets the human herpes virus (HHV-6). Nine of the patients experienced a great improvement.

One of Montoya's cases was onetime champion figure skater Donna Flowers, now aged 50 and working as a physiotherapist, who lives in California's Silicon Valley.

Two years ago, I was spending 14 hours a day in bed and my brain was so fogged I couldn't write a letter," she says. "I wasn't functioning at all. I'd been diagnosed with chronic fatigue, but the doctors didn't have anything to offer. I had to employ a full-time nanny just to look after my three-year old twins.

However, she is now back at work, treating young Olympic hopefuls, the nanny has gone and she's just started ballet lessons.

When Donna came to see us, her energy levels were around 10 per cent of what she considered normal," says Montoya. "Today, she is functioning at 90 per cent."

One patient who could barely walk around the block is now cycling three hours a day, while another who could not even get down the stairs to breakfast is now up every day at 7am.

The professor reported his findings at a conference on the HHV-6 virus, which was held in Barcelona earlier this month. While it's well known that some patients with CFS have signs of various viral infections, this is the first time that treating one of the viruses has been shown to be so effective.

"I was amazed by the results," Says Montoya, who runs the infectious diseases clinic at Stanford. "Donna was sent to me because high levels of another virus (Epstein Barr) had been detected in her system.

I found high levels of HHV-6 virus as well, so I treated her with valganciclovir to bring down her viral load.

I'd hoped it might help a bit, but I didn't expect the results to be anything like as dramatic. It was pure serendipity."

Valganciclovir is licensed to treat HHV-6 infections of the eye, which can affect transplant or cancer patients with severely weakened immune systems.

HHV-6 is not the same as the herpes virus responsible for cold sores. Most commonly, it causes roseola infantum in children, who get a fever and a rash.

I have treated hundreds of immune compromised patients with the drug, so I am very familiar with it," says Montoya. "It can have serious side-effects so you have to monitor patients very carefully. But so far none of the CFS/ME patients have reacted badly to it."

All the experts agree that a lot more research will have to be done before valganciclovir can be widely used as a treatment.

There is a long history of linking CFS/ME with some sort of viral infection," says Charles Shepherd, a medical advisor to the charity Action for ME.

"About 75 per cent of cases begin with an infection which the patient never properly recovers from, so it is quite likely infectious agents lurk in the body. While the role of HHV-6 is certainly plausible, we will have to wait for a larger trial that is properly controlled."

Montoya agrees. "These were individual cases and it is always possible the results were due to a placebo effect," he says.

However, that is unlikely because we saw a worsening of each patient's condition around week three to four of the treatment, probably when infected cells were dying off. After that came the improvement. 

That is not a pattern you get with placebos. But we don't know yet why the drug makes such a difference."

The possibility that valganciclovir could eventually provide an effective treatment for some cases of CFS is just part of a wider picture. Over the past year, genetic research has provided a new understanding of the disease that could eventually lead to new therapies.

For years, the conventional view has been that there is no known cause, no way to diagnose it and no effective treatment 

Some doctors and health workers believe it is the result of social and psychological factors – and best treated with psychotherapy and exercise.

Now it is becoming clear these patients have "a disturbance in their body's natural way of dealing with infection," says Malcolm Hooper, Emeritus Professor of Medicinal Chemistry at the University of Sunderland.

Anti-viral drugs such as valganciclovir may be allowing it to re-set itself."

Hooper was one of the speakers at a conference in London for ME Awareness Day on Friday. Another speaker was Dr Jonathan Kerr of St George's Medical School in London, who recently published groundbreaking work on the links between genes and CFS/ME.

We've found that the genes in patients' white blood cells – a key part of the immune system – are switched on and off in an abnormal fashion," he says.

The hope is that a relatively old drug, called interferon beta, can help to restore the balance. A controlled trial is planned.

What researchers such as Kerr find disheartening is that there seems to be little official support for this biological-based research in Britain. The bulk of the funding has gone to the psychological approach.

But many hope a parliamentary inquiry looking at the progress of CFS/ME research will find that research involving genes, viruses and the immune system would benefit patients.

Help ME

Daily Record (Letters Section) 11th May 06

Dr John Greensmith, Bristol

As this is ME Awareness Week, I'd like to point out that some sufferers who are reasonably mobile are frustrated, when out and about, by folk saying "you always look fine when I see you".

ght will tell you that when you do not see them it is because they are not well enough to come out.

Many chronic, even terminal illnesses such as cancer have no outward signs yet do not provoke such disbelief.

The more severely affected people are with ME, the more invisible they become.

One brave lady prepared to break this culture is Linda Crowhurst.

Her 12-year struggle – and call for funding for research into ME – can be followed on www.25megroup.org.

She represents 30,000 to 40,000 folk who are housebound or rarely go out

 

Have they found a cure for ME?

Wandsworth Borough News

By Saxon East

A Tooting-based doctor is giving hope to ME sufferers after discovering a potential cause and treatment for the mysterious illness.

Dr Jonathan Kerr, who leads a four-strong team based at St George's Hospital, believes ME sufferers have white blood cells that behave abnormally when triggered by an outside virus, such as Epstein-Barr.

This leads to symptoms such as fatigue – ME is often referred to as chronic fatigue syndrome – weakness, headaches and disrupted sleep.

Many doctors have dismissed ME as a psychological illness, to the despair of sufferers, but Dr Kerr's research could lead to a diagnostic test and treatment.

Dr Kerr said: "We first need to work out how ME is caused and that is what we are doing. We can then use that information for a treatment.

"We have our first experimental drug planned for this year. It is a known drug but we will be using it for a different purpose."

The drug, interferon, is currently used for multiple sclerosis patients.

Dr Kerr will be giving talks in Ireland and London during ME Awareness Week which starts next Sunday, May 7.

Explaining his devotion to research, Dr Kerr said:"The reason we have taken it up is because ME is an unknown area and research is very badly needed.

"We are disappointed that it has been dismissed as being all in the mind.

"For this reason we are taking it on."

Tony Golding, from Network Mesh, a support group for ME Sufferers in Wandsworth and across London, praised the work of Dr Kerr's team. Mr Golding said: "There is plenty of evidence that there are differencesin both the brains and the blood of people with ME. But the question is what to do about it.

Of course, any research and possible treatment is good. ME is an illness that affects at least 150,000 people in this country."

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Letters that appeared in December 05 Newsletter

Story about one of our members that appeared in the Daily Mail

Trapped in bed for 14 years with chronic fatigue

http://www.dailymail.co.uk/pages/live/articles/health/healthmain.html?in_article_id=393915&in_page_id=1774


By GILL SWAIN, Daily Mail 07:46am 4th July 2006

She can't swallow. She can't speak. She's in constant pain. Yet some doctors say Lynn's illness is all in the mind. Read her story and you'll never be flippant about 'yuppie flu' again:
For years many doctors dismissed ME, also known as Chronic Fatigue Syndrome, as 'yuppie flu'. But last month a coroner gave ME as the official cause of death for the first time in the UK - raising hope among campaigners that the condition is about to be taken seriously at last.

Here, Kay Gilderdale tells GILL SWAIN the heartrending story of her daughter, Lynn, 28, who was struck down by the illness 14 years ago...

The soft cotton curtains are permanently drawn to cut out the summer glare. On the bed in the gloom lies a beautiful young woman with skin so pale it is almost translucent. She is stretched out flat on a sheepskin to prevent bedsores, her head resting on a towel. There is a tube down her nose delivering liquid food, and an intravenous line pumping drugs straight into her chest.

Her name is Lynn Gilderdale, she is 28 years old and this has been her life for 14 years. Apart from stays in hospital when she develops an infection, Lynn never leaves her bed in the small bedroom at the back of her mother's bungalow in the village of Stonegate, East Sussex.

Her legs are paralysed and without feeling, she cannot sit up without passing out and her neck is too weak to support her head. She has lost more than half the bone density in her spine and went through the menopause at the age of 20. She is in constant pain. She cannot swallow. She cannot speak. Her mother Kay, who cares for her, has not heard her daughter's voice since she fell silent in August 1992.

Lynn is suffering from ME - Myalgic Encephalomyelitis - once sneeringly dubbed 'yuppie flu' and suspected of being a psychological affliction that struck mostly people who couldn't cope with the stresses of modern life. Anyone who ever thought that way would find a visit to Lynn a deeply shocking and humbling experience. 'It's like she's in limbo,' says Kay, 52. 'If someone dies, you mourn them, then you get to a stage where you know that person is gone and you move on. But Lynn is neither one nor the other.

'She is stuck in that room, not dead, but not alive properly. If I didn't believe, and she didn't believe, that one day she would get better then I don't think it would be right for her to go on suffering like this for a whole lifespan of 70 or 80 years.'

It is estimated that a quarter of the 240,000 ME victims in the UK suffer severe symptoms such as paralysis and the inability to speak or swallow for months or years, and there are probably several hundred as terribly ill as Lynn. Dr Anne MacIntyre, who wrote one of the first self-help books for ME sufferers and has known Lynn since 1993, says: 'At one time Lynn was so sick she recognised nobody, not even her parents. It is absolutely dreadful. These cases are mostly of people who fell ill in their teens, but they are hidden because no one ever sees them.

'They are too ill to get to a clinic and they are cared for at home by parents or other family. Their GPs have mostly given up on them because no one really knows what is going on with this illness.' Though only able to turn her head weakly from side to side and move her arms, Lynn's strength of character is unmistakeable. She expresses herself through a sign language that she has developed with Kay, and smiles and makes jokes whenever she can. Kay invites people into her daughter's small room, which is cluttered with soft toys, to meet her and take to encourage more research to find a cure.

To describe the pain she is in, Lynn makes stabbing gestures and points to the left side of her chest, sweeps her hand across her forehead to indicate herpersistent headache and twists her hands around each other to represent the churning agony in her stomach.

Asked if she is fed up with being like this, she looks both angry and exasperated and holds her thumb and forefinger emphatically an inch apart, meaning: 'Just a bit!' She is very sad, she indicates, but never depressed. I am not brave, I have no choice but to be hopeful, otherwise I would just give up,' her mother translates.

The family's ordeal has been made worse by the fact that, because there is no diagnostic test which can detect the cause of ME's symptoms, many people - including doctors and nurses - persist in believing it is self-induced. But Lynn was a lively, intelligent, popular teenager who enjoyed a happy life with her family. 'We didn't realise how happy until we lost it,' says Kay.

With her mother, older brother Steve and father Richard, a former police inspector who now works for the force as a civilian, Lynn would go sailing and on family cycle rides.

She played the piano and clarinet, won prizes for ballet, and loved swimming and going to the youth club with her friends. Then in November 1991, when she was 14, she had a TB vaccination and immediately felt unwell. Lynn struggled in to school the next day but was sent home and never returned.

Lynn developed flu, bronchitis, tonsillitis and glandular fever, one after the other. 'By February she was really very ill and we were beginning to realise itwasn't just normal bugs,' says Kay.

'Her legs would give way, her memory was getting very poor, she was having awful pains all over her body and a constant, dreadful sore throat and she would oftenfaint.'

Because of her weak legs, she had to start using a wheelchair, then the top half of her body became floppy. By May 1992, ME had been diagnosed and Lynn was bedridden, had difficulty swallowing, couldn't recognise people and her voice had reduced to a whisper.

Frequently, she would fall unconscious while every muscle twisted in violent spasms. 'That first year was so terrible, when we knew she was extremely ill but the tests didn't show anything,' says Kay. 'The first paediatrician we saw said: "It's OK, you've got a fashionable illness. It will go away in time."

'With every other disease you get kindness and sympathy, but though Lynn was very frightened and we were desperate for help, all we got was accusations that she was pretending. It was hugely upsetting.'

Cruel, if well-meaning, experiments were conducted on her in hospital to 'force her to admit she was making it up. Nurses left her unattended for hours in the theory that she would get up to use the bathroom. This had humiliating results.

'Making it up'

Doctors once administered a 'truth drug' and questioned her over whether she was being abused at home. There was a suggestion Lynn had school phobia and Kay once overheard a nurse speculating that it was Munchausen's Syndrome by Proxy - whena mother induces symptoms in a child to draw attention to herself.

'One consultant was convinced Lynn was orchestrating her spasms at certain times of day so they took away her clock, the radio and TV and the nurses lied to her about the time. She still had the attacks at the same times.

'They abused her verbally, calling her a "silly little girl", saying "Of course you can do it" and telling her to fetch things herself. Sometimes she was in such pain and felt so terribly ill she would ask us: "What is going to happen to me?" But we had no answers for her, and neither did the doctors.'

Medical opinion now mostly concurs that ME is caused by a virus, but there is still no treatment for it besides controlling the symptoms.

At first, however, Kay was advised to make Lynn stick to a timetable of study, rest, socialising and exercise. So she would make Lynn walk down the road evenwhen she felt weak - then had to half-carry her back when her legs gave way.

Kay had trained as an auxiliary nurse and it made sense to her at the time to keep Lynn moving. Now she bitterly regrets it, as she is convinced it caused Lynn more harm.

Softly-spoken and mild-mannered, Irish-born Kay is determined to stay positive, but she had to struggle to come to terms what she saw as her own role in Lynn's suffering. 'I don't beat myself up about it any more because that would be a waste of energy and I need every atom to cope,' she says.

Nine months after she fell ill, Lynn could move no part of her body except her little finger, could not speak and had to be fed through a tube. But Kay and Richard made the courageous decision to take her home.

'They said if we did, there was a risk she would die, but we felt there was a greater risk if she stayed in hospital and didn't get the peace and care she needed.

'For two or three years afterwards she would wake up screaming from nightmares of things that happened to her in hospital. She is still scared of doctors and nurses and I won't have anything to do with anyone who doesn't believe in ME.'

Kay left her job in accounting to look after Lynn and has never left her side for more than two days. Her marriage broke up - she says not because of Lynn's illness but unrelated problems. However, Richard still helps care for his daughter.

Lynn's brother Steve did well at school despite his family life disintegrating and now works in IT and is due to become a father in August.

Kay was only 37 when Lynn fell ill. But for her, too, normal life came to an end then. She has a carer in twice a week so she can go shopping and see people.

'I don't resent what it has done to my life but I do resent whatever has made her so ill. It's been heartbreaking to watch my child lose her faculties one by one.

'It is still very hard for me to see mothers and daughters together or groups ofteenagers dressed up and laughing or to hear a family in the garden having abarbecue with children running around.

'If I lived somewhere like a high-rise flat, I don't think I could have coped. And at least I can walk in my garden.'

Every birthday and Christmas has been sad as the years have passed with noimprovement, though Kay tries to make them special. 'For her 18th, I wrapped 18 little presents and put them in a biscuit tin which I iced and put candles on. Lynn said it was a lovely cake but she couldn't eat it, then I showed her what it really was.'

In her late teens, Lynn's body stopped producing oestrogen and she was diagnosed with premature ovarian failure. She has been on HRT ever since, but the lack o hormones contributed to her severe osteoporosis. She is on 24-hour pain control, plus drugs to prevent sickness and spasms.

Light and noise

Lynn is hyper-sensitive to light and noise and for years could not bear to watch television or listen to music. Now she has forgotten how to read. She has a hamster with which she plays in the afternoons and she watches the darting movements of the tropical fish in a large tank beside her bed.

She loves make-up and jewellery and choosing presents from mail-order catalogues. At her strongest she can make cards for friends. But she suffered a knock back in October. Her lung was punctured while she was having her Hickman line - a semi-permanent catheter through which she receives medication - replaced and she is now sleeping nearly 15 hours a day.

Asked what she would like to do if she recovered, Lynn signals that she just wants to do normal things. And she folds her arms together in a rocking motion to indicate her yearning for a baby.

'She has always loved children and I've told her there are many ways to have a baby even if you can't give birth yourself,' says Kay. 'But I am really hoping that once the virus which caused her ME has finally burned itself out, everything else will start working again.

'People do get better, even those as ill as Lynn. Every time I read of such a case I am pleased for them, but I can't help wondering when it will be her turn.

'If she could come out of that room, it wouldn't matter where we went. It would be enough just to feel the air on our faces, see the sky, be part of the world. Lynn tells me she feels it is all out there, waiting for her to step back into.

'It is not that she doesn't want to. She wants to so much. Who would choose to lie in bed and be injected with drugs so many times your veins collapse over the life she had as an active teenager?

'We need to find the cause'

'Yet the Government is putting money into treatments such as graded exercise and cognitive behaviour therapy - which don't help those most severely affected by ME - rather than into research to find the cause.

'Until a cure is found, the thing which would make the biggest difference to our lives would be for everyone to realise it is a real and terrible illness.

'But a lot of people still say to me they thought ME was "just tiredness". And people like Lynn are still being told: "Pull yourself together." '

For information and advice for anyone severely affected by ME contact The 25 Per Cent Group on 01292 318611, www.25megroup.org, or Action for ME on 0845 123 2314, www.afme.org.uk/

 

Replies to the above article

PERMISSION TO FORWARD, REPOST, OR USE IN NEWSLETTERS.

Good letter Sue. May we use it on mefreeforall.org even if they don't have the good sense to? Here's my effort for the paper, so that's 2 on the desk we know about
apart from
the online responses.

*Daily Mail Letters

*Severe M.E. sufferer* Lynn Gilderdale* courageously and selflessly invited /The Daily Mail/ into a world few would otherwise see and *Gill Swain* didn't miss a drop of up-to-date information that will be news to some M.E. sufferers, as well as an education for your readers who have no experience with M.E. (/Trapped in her bed for 14 years, Daily Mail, 4 July 2006/) If we do not yet know the cause of M.E., we can say what it is not and where it is most likely to be found: There is no greater incidence of psychiatric history amongst people with M.E. than in the general population. The postmortem evidence from Sophia Mirza, the first death due to M.E., reinforces the view that Myalgic Encepalomyelitis is a neurological illness with an, as yet, unknown physical cause, as categorised by the World Health Organisation.
Yet the Government, with the support of the major M.E. charities, has already invested £11.5 million in illness management programmes using cognitive behaviour therapy, developed for psychiatric illnesses and graded exercise, which leaves many more feeling worse after it than it helps, sometimes irrecoverably so in a wheelchair and seeks yet more to run them. But it has given nothing to the more promising genetic research programme of Dr Jonathan Kerr, which has to rely on charity.

Yours sincerely

drjohngreensmith@mefreeforall.org

Reply to article (online) about our member Lynn Gilderdale that had her
story in the Daily Mail

Regards
Simon Lawrence

"As the leading support charity for the severely affected ME sufferer, we would like to offer our support and thanks to GILL SWAIN, who had this article published in the Daily Mail
Lynn has been a member of our support Group for many years and her story is very similar to many of our members. Many have been neglected by the medical profession and in some cases abused by them. It is ridiculous that in this day and age that the people who we should trust to look after our medical needs, are in some cases actually doing harm! Charities like ours are always trying to compact the psychological attitude that is prevalent in medical circles about this disease The World Health Organisation and many other researchers have said for decades that this is a serious neurological disease. Many call for urgent research to find out the cause(s) of the disease, but this is being hampered by miss-information from certain Government Medical Advisors (mainly psychiatrists). This should now change!"

25% ME Group
21 Church Street
Troon
Ayrshire
KA10 6HT

Click here to email us
Click here to visit our web site

www.25megroup.org

Dear Editor,

I commend Kay Gilderdale for having the courage to speak out about the awful reality of her daughter, Lynne's, life with ME.

ME affects not only the patient but the whole family. It becomes impossible to eat together, visit family and friends together or to take holidays. Sometimes it is even impossible to speak to one another. Unfortunately Lynne's suffering is far from unique. There are around 60,000 severely affected sufferers lying hidden away in their bedrooms largely ignored by the medical profession. I attended the inquest last month into the death of Sophia Mirza at which ME was recorded as the cause of death. Sophia had been taken from her home against her will and sectioned under the Mental Health Act by psychiatrists who believed that ME is a "non-illness" perpetuated by "faulty illness beliefs."
The Inquest heard evidence from a Neurologist that inflammation was found in the ganglia of Sophia's spinal chord. He said, "Dorsal root ganglionitis is
a pathological condition... It lies more in the realms of neurology than psychiatry, in my opinion."

The scientific evidence for a bio-medical cause of ME is overwhelming yet a significant minority of doctors persist in their assertion that it is psychological. Many victims suffer multi-organ damage. I would like these psychiatrists to explain how a "psychological" illness could cause inflammation in a spinal chord and extreme neurological symptoms in thousands of ME sufferers.

Since the inquest our charity, Invest In ME, has been contacted by many people from all over the world to say that their loved ones also died from ME. They also suffered disbelief from doctors.

As ME is five times more prevalent that HIV/AIDS I would urge the Department of Health and the Medical Research Council to urgently look at funding bio-medical research into this devastating illness before more lives are lost.

My daughter has lost all her teenage years to ME. I (and thousands of other parents like me) am in a similar position to Kay Gilderdale.

I never want to find myself in the same situation as Sophia's mother.

Regards,

Sue Waddle

Subject: Love of writing made it plain sailing for Clare" [Francis], The Weekly News, 1 October 2005.

Anyone suffering fromME will be happy to hear of someone who has it mildly enough to 'get on with their life in spite of it.' (Love of writing made it plain sailing for Clare, The Weekly News, 1 October 2005).

However it should be made clear that this is not always possible and that this is not the choice of the individual, but determined by how severely you have the illness.

The 25%ME Group represents the people with ME who are so severely affected thatmany of us are totally bedridden and wholly dependent on carers for the basic functions of daily living, others of us are lucky enough to be able to leave home in a wheelchair occasionally. None of us are this ill because we are somehow failing to control the illness, this is how ill we are after trying everything possible and taking into account what works for us.

Hayley Klinger
25%MEGroup

enquiry@25megroup.org
www.25megroup.org
21 Church Street
Troon
Ayrshire
KA10 6HT
 

 

ME, Royal Free Disease and a psychiatric obsession

The debate about whether the outbreak at the Royal Free was ME is sadly relevant today as the psychiatric profession still attempt to convince doctors that ME is not a physical disease but a state of mind.

The 300 plus studies worldwide which have found serious immunological, neurological, endocrinological and cardiac abnormalities in ME patients have recently been added to by research finding genetic abnormalities. The psychiatrists never refer to this available medical literature but obsessively attempt to find the cause of ME in the personality of patients; initially we were 'yuppies' or type A high achievers, then when this picture did not fit the epidemiological research we became malingerers attempting to avoid work and the stress of everyday life. When this did not quite work either we became people who felt genuinely ill, but weren't!

The disgrace of taking a seriously ill group of people and constructing psychological theories about why they are ill was bad enough back when the Royal Free was closed, but it is still going on in the face of significant medical research proving it irrelevant.

The 25%MEGroup represents the interests of severely ill ME patients, many of whom are so ill that they are totally bedridden, some of whom are wholly dependent on carers for the basic functions of daily living and others who are lucky enough to be able to leave home in a wheelchair occasionally. To be so ill and to be faced with a medical profession that thinks ME issomehow psychological has been devastating for thousands of sufferers.

Maybe the latest genetic studies will finally silence the psychiatric lobby who have been so peculiarly intent on persuading doctors and the media that nothing much is wrong with such extremely ill patients.

Hayley Klinger

Media Relations
25%MEGroup
www.25megroup.org

enquiry@25megroup.org

 

http://news.bbc.co.uk/1/hi/health/4084631.stm - BBC News report

Re: Taking a shower left me exhausted
Jane Elliot BBC News Health Reporter

This article about the recovery of Saphira van den Dam from chronic fatigue syndrome with the help of psychotherapy highlights the problem with using the name chronic fatigue syndrome for almost any illness which involves unexplained fatigue.

Many people reading this will assume that CFS and ME are the same thing as they have become interchangeable when used by the media and the psychiatric profession. ME specialists however know that the critical distinction is that ME is classified as a serious neurological illness alongside MS and Motor neurone disease by the world Health Organisation as ICD-10, 93.3, whilst chronic fatigue states are classified as mental health disorders.

If you are intending to show that patients suffering from fatigue can benefit from CBT or any other psychological therapy, it is vital to point out that you are not talking about ME. Your article was clearly aimed at ME sufferers alongside related links about ME but ME patients could be made seriously ill by participating in the sort of therapy which helped Saphira, such as doing more each day, or doing things when she felt unwell.

As a rule of thumb, if psychological therapy helps you recover, you did not have ME, in the same way that cancer cannot be cured by psychiatry, nor can ME.

Hayley Klinger

www.25megroup.org

Capital clinic gives hope to ME sufferers - Ruth Armstrong, Health Reporter

(Edinburgh Evening News, Wednesday, 17 March, 2004)

The Times (July 21, page 3) http://www.timesonline.co.uk/article/0,,2-1702267,00.html 

Re: 'Yuppie flu' may not be all in the mind - it might be in the genes

Sir
Your article reports that genetic abnormalities have been found in the blood of ME patients which is yet another study to add to a huge body of research proving that ME is a physical and not psychological illness. Unfortunately the cartoon accompanying your article portrays ME sufferers as indistinguishable from those who would 'rather be watching the cricket' creating the impression that ME is a lifestyle choice for vaguely tired individuals.

The reality is somewhat different. The 25%MEGroup represents the interests of severely ill ME patients, many of whom are so ill that they are totally bedridden, some of whom are wholly dependent on carers for the basic functions of daily living and others who are lucky enough to be able to leave home in a wheelchair occasionally. None of us feel fatigued, we are all very ill and a vast amount of research demonstrates the immune/endocrine/neurological and cardiac abnormalities which cause such an extreme level of sickness.

To be so ill and to be faced with a medical profession that thinks ME is somehow psychological has been devastating for thousands of sufferers. Maybe the latest genetic studies will finally silence the psychiatric lobby who have been so peculiarly intent on ignoring the available medical literature and who seem to be on a mission to persuade doctors and the media that nothing much is wrong with such extremely ill patients.

Hayley Klinger
Media Relations

www.25megroup.org

 

Another Reply

Capital clinic gives hope to ME sufferers - Ruth Armstrong, Health Reporter

(Edinburgh Evening News, Wednesday, 17 March, 2004)

The Times (July 21, page 3) http://www.timesonline.co.uk/article/0,,2-1702267,00.html 

It has been expressed in another reply that a ”national specialist M.E. centres are desperately required is not in dispute.  It is the kind of treatment they offer that is highly controversial, hotly contested and which causes great anxiety”

The study that is being proposed is not only a complete waste of public money, but it is also short sighted.

We have patient reporting to show that such ‘treatments’ as Cognitive Behaviour therapy and Graded Exercise Therapy, are unhelpful and even make patients suffering from ME worse.

On the ‘treatment’ GET, it was reported that of those who tried this ‘treatment’ (39%), 82% were made worse. CBT had a similar result.

I am particularly concerned that those who are controlling the purse strings are listening to the wrong ‘experts’, something that has already come unstuck in the recent past.

Treating this physiological disease with psychological methods is a medical mistake, we should be promoting biomedical research along the lines that is being done by MERGE – a Scottish Research group in Perth.

People with Myalgic Encephalomyelitis, already feel let down by the lack of services and proper research into this devastating disease that has wrecked so many lives, lets be serious about helping these people with real research studies into the causes and hopefully find treatments that will relieve the suffering that so many have to endure

Simon Lawrence

25% ME GROUP – support for severe ME sufferers

enquiry@25megroup.org

Scotsman Publications Ltd

Regent Court

76 West Regent Stree

Glasgow G2

9th January 2004

Dear Sir

Response from the 25% ME Group (Support Group for severe ME Sufferers) to Simon Wessely’s letter to the Scotsman (“Research goes on”) 5th January 2004

As a patient-led support organisation for severe sufferers of Myalgic Encephalomyelitis (ME), we wish to applaud Margaret Cook’s article which appeared in the Scotsman on 6th Oct 2003 for its forthright honesty in reporting what the patients, carers and families of those suffering with ME had to say about how the illness affects them and how they feel they have been treated (and mistreated) by some parts of the medical profession.

Although Wessely, in his response states that “The evidence shows that the average family doctor is now more understanding and sympathetic to sufferers than before”, from many patients’ experiences, this is actually often not the case, even following the publication of the Chief Medical Officer’s Report on CFS/ME and similar publications.

We feel, it is astonishing that in the 21st Century the burden remains on the patient to fight to achieve true recognition for the illness that they are suffering from, whatever illness that may be! It seems apparent to us that the medical profession (although saying they are listening to patients) may actually be interpreting what is being said by the patient to their own ends and then dictating forms of “treatment” and “services” for them. At best, they are lumping ME together with other Chronic Fatigue Syndromes and wrongly applying those treatments that may indeed work with some CFS patients but which will not (in the majority of cases) actually be of any benefit to those suffering from ME.

Wessely, in his response in the Scotsman on 5th January, states “I have been saying for 15 years that this is a real illness, based on my experiences listening to over one thousand patients…” However, based upon a transcript of a lecture given by Wessely on 12th May 1994 at the 9th Eliot Slater Memorial Lecture, which has also been highlighted in a separate response to the Scotsman, it is quite evident that he did not always hold such views when he stated at said lecture, “I’m going to talk not about an illness, but about an idea” and further stated that “I will argue that ME is simply a belief, the belief that one has an illness called ME.” This along with many other publications by Wessely et al over the past 15 years, clearly indicates that he does not hold ME to be a real and distinct neurological condition, as accepted by the World Health Organisation ICD10 G 93.3, but rather refers to ME as an “hysterical” condition which merits treatment on a “purely” psychological basis.

He also (along with some other of his fellow researchers) continues to confuse and distort the differences between CFS (Chronic Fatigue Syndrome) and ME. Therefore, rather than dealing with ME as a distinct neurological condition, instead continues to apply to it the umbrella term of CFS (which is a collective term for all types of fatigue conditions, many with a probable underlying psychological basis).

As pointed out by Wessely in his response, it certainly is “a scandal” that there are no, or very few services available for ME sufferers (especially for those who are severely affected by the disease). However, we found it extremely offensive that he chose to express the fact that he and his team in South London had set up a “service” in order to treat CFS and ME sufferers. Unfortunately, the “treatments” currently offered by such “services” to patients with ME, are ones that have clearly been shown by past and present patient reporting (such reports having been ignored by certain elements of the medical profession) to be the most harmful forms of treatment to ME sufferers, especially those who are moderately or severely affected by the illness.

 Many such sufferers who have in the past undertaken these forms of “treatment” whilst they were moderately affected, have since joined our Support Group (for the Severely Affected) because, as a result of such treatments, they have now become wheelchair, house or even bed-bound! Feedback received from our membership, many of whom have used GET (Graded Exercise Therapy) in the past, indicates that 83% were made worse by this treatment and the figures for CBT (Cognitive Behaviour Therapy) were very similar.

Another patient organisation also reported large numbers of ME sufferers being made worse by such forms of treatment.  It therefore seems incredulous that public funds (in the amount of 2.6 million) have been made available in order to test these “treatments” further, despite very disappointing outcomes with regard to previous research studies and patient reporting. Wessely also states “There are now evidence based treatments available, whilst they don’t cure, do make a difference”. This flies in the face of the above and many other research papers showing that this is simply not the case.

In terms of research, we don’t want just “any research” as stated by Wessely in his response. Indeed, we feel the research that is being conducted at present is not the most effective for ME sufferers.  Previous research studies, some of which have been available since the middle of the last century, clearly outline the physical and biological abnormalities caused by this disease. We already have research units like MERGE in Perth, Scotland, and the CFS Research Foundation in England, that are carrying out significant scientific research studies but they are not receiving the public funding required to further such work, but rather we have millions being spent on psychological-based approaches which, in the end, will not unravel the underlying cause of the condition. (This is akin to a sticking plaster being applied to a broken leg!)

From Wessely’s final paragraph, it is quite apparent that he still wishes to denigrate those suffering from ME (even though he expressed in his response that he listens to patients) when he referred to the sufferers and carers who spoke to Dr Cook at the Scottish Cross Party Meeting as “activists” rather than patients who are forced to fight for true recognition of their condition and the suffering that they endure daily, not only caused by the disease itself, but also by the demonization of the condition by certain elements of the medical profession.

It has been expressed in some quarters (even by one of the leading ME support organisations) that such “activists” are actually hindering and demonising doctors such as Wessely and his colleagues, but it should always be remembered that it is the sufferer who has experience of living with this condition and the problems that entails, and it is not the clinician who must endure the stigmatisation which still accompanies this disease.

Yours faithfully

Simon Lawrence

enquiry@25megroup.org

"Telegraph UK Student health special: beware of first-term burn-out

To compare a severely disabling neuro/immuno/endocrine illness to student burn-out is absolutely unacceptable.

Mr Britton made a  comment saying; "there's a thin line between student ennui and full-blown ME". And there seems to be a collation between fatigue and the neurological condition (ME) within this article.

ME patients have struggled to have the severity of the illness recognised in the face of ignorance and prejudice, much of which is based on the assumption that ME is something to do with fatigue.  As research has finally proved how ill we actually are it is shocking to see  the confusion  caused by some points in this article

To be seriously ill and not taken seriously is not just frustrating, degrading and humiliating, more prosaically it leads to lack of medical care, lack of treatment, lack of funds for research and decades in bed too ill to take part in the life we used to have. 

Hayley Klinger

Media Relations

www.25megroup.org

enquiry@25megroup.org

21 Church Street

Ayrshire

KA10 6HT

 

To:letters@guardian.co.uk

Subject: What the This Life generation did next G2 12/09

Amy Jenkins has made a damaging mistake when she identifies ME purely because of its acronym as an eponymous illness of a self obsessed generation. (What the This Life generation did next G2 12/09)

She would not include MS or Motor Neurone disease so lightly, yet ME is recognised by the World Health Organisation in the same category as these devastating illnesses.

The outdated idea of ME as a lifestyle choice for vaguely tired individuals has been totally discredited by a vast amount of research demonstrating the immune/endocrine/neurological and cardiac abnormalities which cause a devastating level of sickness.

The 25%MEGroup represents the interests of severely ill ME patients, many of whom are so ill that they are totally bedridden, some of whom are wholly dependent on carers for the basic functions of daily living and others who are lucky enough to be able to leave home in a wheelchair occasionally. The reality of ME is that patients are seriously ill and still not taken seriously by the media.

Before resorting to prejudicial stereotypes Amy Jenkins should be aware of the medical literature and read some case histories as I am pretty sure they will shame her into pausing before taking another casual swipe at a group of extremely ill people.

Hayley Klinger
Media Relations
25%MEGroup

enquiry@25megroup.org
www.25megroup.org
21 Church Street
Troon
Ayrshire
KA10 6HT

http://www.telegraph.co.uk/health/main.jhtml?xml=/health/2005/08/22/hreverse22.xml&sSheet=/health/2005/08/24/ixhmain.html



Sir

Your article about the recovery of Christina Hopkinson from chronic fatigue syndrome with the help of reverse therapy highlights a problem that ME sufferers have faced in their fight to have the disease taken seriously.

You have confused chronic fatigue syndrom (CFS) and ME and assumed they ar the same illness. The critical distinction is that ME is classified as a serious neurological illness alongside MS and Motor neurone disease by the world Health Organisation as ICD-10, 93.3, whilst chronic fatigue states are classified as mental health disorders. This would explain why talking therapies can help some patients with a diagnosis of chronic fatigue butcannot and do not cure ME.

The 25%MEGroup represents the interests of severely ill ME patients, many of whom are so ill that they are totally bedridden, some of whom are wholly dependent on carers for the basic functions of daily living and others who are lucky enough to be able to leave home in a wheelchair occasionally. None of us feel fatigued. We are all very ill and a vast amount of research demonstrates the immune/endocrine/neurological and cardiac abnormalities which cause such an extreme level of sickness.
To be so ill and to be faced with a media and medical profession that cannot shake the thought that ME is somehow psychological has been devastating for thousands of sufferers, and has resulted in us being denied treatment, research and benefits.

Your article about Christina has unfortunately contributed to the totally discredited view that ME is a trivial fatiguing illness which could be fixed if only sufferers would look into their personalities. The reality is that if you recover by changing the way you think, you did not have ME in the first place.

Hayley Klinger
Media Relations
25%MEGroup

enquiry@25megroup.org

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From Summer 06 newsletter

Have they found a cure for ME?
Wandsworth Borough News
By Saxon East

A Tooting-based doctor is giving hope to ME sufferers after discovering a potential cause and treatment for the mysterious illness.

Dr Jonathan Kerr, who leads a four-strong team based at St George's Hospital, believes ME sufferers have white blood cells that behave abnormally when triggered by an outside virus, such as Epstein-Barr.

This leads to symptoms such as fatigue – ME is often referred to as chronic fatigue syndrome – weakness, headaches and disrupted sleep.

Many doctors have dismissed ME as a psychological illness, to the despair of sufferers, but Dr Kerr's research could lead to a diagnostic test and treatment.

Dr Kerr said: "We first need to work out how ME is caused and that is what we are doing. We can then use that information for a treatment.

"We have our first experimental drug planned for this year. It is a known drug but we will be using it for a different purpose."

The drug, interferon, is currently used for multiple sclerosis patients.

Dr Kerr will be giving talks in Ireland and London during ME Awareness Week which starts next Sunday, May 7.

Explaining his devotion to research, Dr Kerr said: "The reason we have taken it up is because ME is an unknown area and research is very badly needed.

"We are disappointed that it has been dismissed as being all in the mind.

"For this reason we are taking it on."

Tony Golding, from Network Mesh, a support group for ME Sufferers in Wandsworth and across London, praised the work of Dr Kerr's team. Mr Golding said: "There is plenty of evidence that there are differences in both the brains and the blood of people with ME. But the question is what to do about it.

"Of course, any research and possible treatment is good. ME is an illness that affects at least 150,000 people in this country."

Help ME
Daily Record (Letters Section) 11th May 06
Dr John Greensmith, Bristol

As this is ME Awareness Week, I'd like to point out that some sufferers who are reasonably mobile are frustrated, when out and about, by folk saying "you always look fine when I see you".

A moment's thought will tell you that when you do not see them it is because they are not well enough to come out.

Many chronic, even terminal illnesses such as cancer have no outward signs yet do not provoke such disbelief.

The more severely affected people are with ME, the more invisible they become.

One brave lady prepared to break this culture is Linda Crowhurst.

Her 12-year struggle – and call for funding for research into ME – can be followed on www.25megroup.org.

She represents 30,000 to 40,000 folk who are housebound or rarely go out.

Daily Mail, 16th May 06
By Jerome Burne

A drug used to treat herpes infections has produced a dramatic improvement in patients severely affected by ME, or chronic fatigue syndrome.
Sufferers who for years had been unable to leave their homes now report being able to resume normal life.

This is a remarkable result for a treatment for this complex and controversial disorder that is thought to affect as many as 240,000 people in Britain and for which there is no cure.
The results, reported at a scientific conference earlier this month by Professor Jose Montoya of Stanford University in California, involved 12 patients who had been given the powerful drug, valganciclovir, which targets the human herpes virus (HHV-6). Nine of the patients experienced a great improvement.

One of Montoya's cases was onetime champion figure skater Donna Flowers, now aged 50 and working as a physiotherapist, who lives in California's Silicon Valley.

"Two years ago, I was spending 14 hours a day in bed and my brain was so fogged I couldn't write a letter," she says. "I wasn't functioning at all. I'd been diagnosed with chronic fatigue, but the doctors didn't have anything to offer. I had to employ a full-time nanny just to look after my three-year old twins.

However, she is now back at work, treating young Olympic hopefuls, the nanny has gone and she's just started ballet lessons.

"When Donna came to see us, her energy levels were around 10 per cent of what she considered normal," says Montoya. "Today, she is functioning at 90 per cent."

One patient who could barely walk around the block is now cycling three hours a day, while another who could not even get down the stairs to breakfast is now up every day at 7am.

The professor reported his findings at a conference on the HHV-6 virus, which was held in Barcelona earlier this month.

While it's well known that some patients with CFS have signs of various viral infections, this is the first time that treating one of the viruses has been shown to be so effective.

"I was amazed by the results," Says Montoya, who runs the infectious diseases clinic at Stanford. "Donna was sent to me because high levels of another virus (Epstein Barr) had been detected in her system.

"I found high levels of HHV-6 virus as well, so I treated her with valganciclovir to bring down her viral load.

"I'd hoped it might help a bit, but I didn't expect the results to be anything like as dramatic. It was pure serendipity."

Valganciclovir is licensed to treat HHV-6 infections of the eye, which can affect transplant or cancer patients with severely weakened immune systems.

HHV-6 is not the same as the herpes virus responsible for cold sores. Most commonly, it causes roseola infantum in children, who get a fever and a rash.
"I have treated hundreds of immune compromised patients with the drug, so I am very familiar with it," says Montoya. "It can have serious side-effects so you have to monitor patients very carefully. But so far none of the CFS/ME patients have reacted badly to it."
All the experts agree that a lot more research will have to be done before valganciclovir can be widely used as a treatment.

"There is a long history of linking CFS/ME with some sort of viral infection," says Charles Shepherd, a medical advisor to the charity Action for ME.

"About 75 per cent of cases begin with an infection which the patient never properly recovers from, so it is quite likely infectious agents lurk in the body. While the role of HHV-6 is certainly plausible, we will have to wait for a larger trial that is properly controlled."

Montoya agrees. "These were individual cases and it is always possible the results were due to a placebo effect," he says.

"However, that is unlikely because we saw a worsening of each patient's condition around week three to four of the treatment, probably when infected cells were dying off. After that came the improvement.

"That is not a pattern you get with placebos. But we don't know yet why the drug makes such a difference."

The possibility that valganciclovir could eventually provide an effective treatment for some cases of CFS is just part of a wider picture. Over the past year, genetic research has provided a new understanding of the disease that could eventually lead to new therapies.

For years, the conventional view has been that there is no known cause, no way to diagnose it and no effective treatment.

Some doctors and health workers believe it is the result of social and psychological factors – and best treated with psychotherapy and exercise.

Now it is becoming clear these patients have "a disturbance in their body's natural way of dealing with infection," says Malcolm Hooper, Emeritus Professor of Medicinal Chemistry at the University of Sunderland.

"Anti-viral drugs such as valganciclovir may be allowing it to re-set itself."

Hooper was one of the speakers at a conference in London for ME Awareness Day on Friday. Another speaker was Dr Jonathan Kerr of St George's Medical School in London, who recently published groundbreaking work on the links between genes and CFS/ME.

"We've found that the genes in patients' white blood cells – a key part of the immune system – are switched on and off in an abnormal fashion," he says.
The hope is that a relatively old drug, called interferon beta, can help to restore the balance. A controlled trial is planned.

What researchers such as Kerr find disheartening is that there seems to be little official support for this biological-based research in Britain. The bulk of the funding has gone to the psychological approach.

But many hope a parliamentary inquiry looking at the progress of CFS/ME research will find that research involving genes, viruses and the immune system would benefit patients.

ME Research Focus is Flawed
Eastern Daily Press, 5th April 2006
By Greg Crowhurst

I have spent 12 years caring for my wife, who has severe ME, and even though each day is a day of indescribable agony, I am greatly distressed by the news of a £503,000 lottery grant to UEA for ME/Chronic Fatigue Syndrome research, to be led by the charity Action for ME.

I believe Action for ME has "sold out" to the powerful British psychiatric lobby, which pursues a discredited policy of behavioural intervention and graded exercise therapy.

There is not one published paper, as opposed to opinion, proving that ME/CFS is a psychiatric condition, while more than 2000 papers have been published internationally proving that ME/CFS is a neurological, physical illness and that graded exercise especially is dangerous to sufferers.

This research is bad news for sufferers, it looks like being a waste of scarce money that could be better spent on physical research and it will simply condemn sufferers like my wife to even more years of agony.

This research has nothing to offer the ME community. What is desperately needed is physical research to find a cure. Not one penny of government funding has yet been committed to this.

ME Research Call
Disability now - Health News (June 2006)
By Priya Kotecha

Disability campaigners have called on the government to plough greater resources into finding a treatment for ME, following claims of misdiagnosis and mistreatment by the NHS.

The 25% ME Group, which represents people with the most severe forms of the condition, accused the government of "wasting millions on inappropriate treatment" by using psychological therapies such as cognitive behavioural therapy to help treat patients with ME.

The group said: "The government has chosen to pour many millions of pounds worth of public money into funding psychologically-based treatments and management strategy therapies, which simply do not work for ME patients and indeed can cause more harm to ME sufferers."
The national support group claims 95 per cent of its members who had tried such therapies reported a worsening of their symptoms.

Instead, it is calling for the government to redirect resources into researching the physical causes of the illness, which they say is currently being funded through private donations.

Action for ME, another ME charity, said psychological therapies can help "as a coping strategy to manage the illness", but reinforced calls for "fully funded biomedical research."

A spokeswoman for the Department of Health said: "It is for clinicians to decide how best to treat their patients."

She said the government had invested £8.5 million in Chronic Fatigue Syndrome/ME services via the Medical Research Council (MRC).

The MRC said it would fund proposals which had an "alternative approach" but that nothing of sufficient quality had yet been proposed.

Letters to the Editor, Disability Now
June 2006

After reading your news focus on the use of the Human Rights Act (DN, May, page 18) I thought readers should hear my story.

In 2000, my occupational therapy department decided I needed a profile bed with carer-lifting so my carers could give me bed-baths. My physio also thought this was a good idea as I am unable to leave my bed and have had back pain from being propped up with pillows and slipping. As I was sleeping in a double bed with my husband, I asked for a double bed. This was refused as the authority would only pay for a single bed. We offered to pay for the other half of the bed, but this was refused and stalemate ensued for 18 months, with letters passing back and forth.

I took advice from the Disability Law Centre, which advised mentioning Article 8 of the Act – the right to private and family life. My advisor also told me to mention we had offered to pay for the bed, so the authority would have no legal defence.

I sent these comments and said I would wait three weeks for a reply. If unfavourable, I would take them to court. Within three hours the authority had discovered enough money to buy the whole of my double profile bed, which was installed in December 2001. It has made a phenomenal difference to my life.

If something similar happened in future, I would have no hesitation in using the Act again.

Sue Firth, Halifax

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From newsletter 20

Article from Troon Times media20_pic
19th July 05, By Nan McFarlane

“Windfall Cash”
The recently opened office of the 25% ME Advocacy Association, in Church Street, have been informed they are to receive a cash windfall of £14,000 this month.

The office, the only one in Scotland, was opened in the spring with the help of £145,000 of lottery money. The advocacy group has been set up with two full-time staff to assist and support the 25% of ME patients who are severely disabled with the disease.
A fundraising group down south have organised a number of initiatives, that include parachute jumps and flying stints to raise the cash. Scotland’s food giant Baxter’s Food have raised much needed cash for the group as well and representatives will travel to the town at the end of the month to meet up with the fundraising group from England.

The staff at the office were pleased to hear they were in line for a cash windfall and are to accept the cheque on July 27.

Ayrshire Advertiser

Ian Walker of Ladbrokes hands over the cheque to Mr and Mrs Mitchell, parents of member Fiona Mitchell.

Alloa’s Ladbrokes branch gave charity a helping hand by donating over £1000.

The betting shop’s assistant manager Ian Walker was delighted to hand over two cheques to the Lochies Inclusion Support group and the 25% ME Group, after customers made suggestions as to which local charities should receive cash, raised through various promotions and competitions.

The ME Group, which was presented with £500, was nominated by a Ladbrokes customer whose daughter suffers from the condition.

Shop manager, Paul Menzies, told the Advertiser, “It’s great to be able to see where the money is going, especially when there is a connection to the local community.”

Chronic Fatigue Is Not
All In The Mind

New Scientist, 23 July 05
Article by Rowan Hooper

At long last, we are beginning to get to grips with chronic fatigue syndrome. Differences in gene expression have been found in the immune cells of people with the disease, a discovery that could lead to a blood test for the disorder and perhaps even to drugs for treating it.

The symptoms of chronic fatigue syndrome have been compared to those of a really bad hangover: extreme weakness, inability to think straight, disrupted sleep and headache. But unlike a hangover, the symptoms linger for years, devastating people’s lives.

While nobody doubts CFS exists, just about every aspect of it is controversial. Some say it is the same as Myalgic Encephalomyelitis, or ME; others disagree. Many specialists are convinced it does have a biological basis, but pinning down physical abnormalities common to all patients has proved tough. People with CFS have often received little sympathy from doctors who dismiss it as “all in the mind”.

Now Jonathan Kerr’s team, which is moving to St George’s University of London, has compared levels of gene expression in the white blood cells of 25 healthy individuals with those in 25 patients diagnosed as having CFS according to strict criteria. The researchers found differences in 35 of the 9522 genes they analysed using DNS chip technology. The few similar studies done in the past have produced conflicting results, so the team double-checked their results using a more accurate method called real-time PCR. That confirmed that 15 of the genes were up to four times as active in people with CFS, while one gene was less active. The results will appear in the Journal of Clinical Pathology next month.
Kerr is repeating the study in 1000 CFS patients and healthy controls, this time looking at 47,000 gene products. So far, the larger study backs up the earlier results, he told New Scientist.

If Kerr really has succeeded where many have failed, and identified clear physical changes in people with CFS, the lingering opinion that it is “all in the mind” could finally be laid to rest. “This exciting new work shows that some aspects of this complex illness may be understandable in molecular terms, and that CFS is not a ‘made up’ illness,” says Russell Lane, a neurologist at Charing Cross Hospital in London.

It should also be possible to develop a blood test for CFS. The team has already discovered differences in blood proteins related to the changes in gene expression.

Kerr hopes the work might even lead to treatments. “We have shown that a significant part of the pathogenesis resides in the white blood cells and in their activity,” he says, “It will open the door to development of pharmacological interventions.”

Several of the genes identified by the team in CFS play important roles in mitochondria, the power factories of our cells. “The involvement of such genes does seem to fit with the fact that these patients lack energy and suffer from fatigue,” Kerr says.

One of these gene products, EIF4G1, is involved in protein production in mitochondria. It is hijacked by some viruses, so cells may compensate by ramping up gene expression. “I am excited by the paper,” says Basant Puri, a CFS expert at Hammersmith Hospital in London. “The group’s finding of upregulation of EIF4G1 is consistent with subclinical persistent viral infection.”

This fits in with the idea that CFS is sometimes triggered by viruses such as Epstein-Barr, Q fever, enteroviruses and parvovirus B19. “CFS often begins with a flu-like illness which never goes away,” Kerr says.

Of the other genes whose expression varies in CFS patients some are involved in regulating the activity of the immune system. Others play important roles in nerve cells, including a gene called NTE, which codes for an enzyme affected by organophosphates and nerve gases.

Love of Writing Made it Plain
Sailing for Clare [Francis]
Response to Article in The Weekly News, 1 October 2005

Anyone suffering from ME will be happy to hear of someone who has it mildly enough to “get on with their life in spite of it”. (‘Love of writing made it plain sailing for Clare’, The Weekly News, 1 October 2005).

However it should be made clear that this is not always possible and that this is not the choice of the individual, but determined by how severely you have the illness.

The 25%ME Group represents the people with ME who are so severely affected that many of us are totally bedridden and wholly dependent on carers for the basic functions of daily living, others of us are lucky enough to be able to leave home in a wheelchair occasionally. None of us are this ill because we are somehow failing to control the illness, this is how ill we are after trying everything possible and taking into account what works for us.
 
Hayley Klinger
25% ME Group Media Relations

 

ME, Royal Free Disease and a Psychiatric Obsession

The debate about whether the outbreak at the Royal Free was ME is sadly relevant today as the psychiatric profession still attempt to convince doctors that ME is not a physical disease but a state of mind.
The 300 plus studies worldwide which have found serious immunological, neurological, endocrinological and cardiac abnormalities in ME patients have recently been added to by research finding genetic abnormalities. The psychiatrists never refer to this available medical literature but obsessively attempt to find the cause of ME in the personality of patients; initially we were 'yuppies' or type A high achievers, then when this picture did not fit the epidemiological research we became malingerers attempting to avoid work and the stress of everyday life. When this did not quite work either we became people who felt genuinely ill, but weren't!

The disgrace of taking a seriously ill group of people and constructing psychological theories about why they are ill was bad enough back when the Royal Free was closed, but it is still going on in the face of significant medical research proving it irrelevant.

The 25% ME Group represents the interests of severely ill ME patients, many of whom are so ill that they are totally bedridden, some of whom are wholly dependent on carers for the basic functions of daily living and others who are lucky enough to be able to leave home in a wheelchair occasionally. To be so ill and to be faced with a medical profession that thinks ME is somehow psychological has been devastating for thousands of sufferers.
 
Maybe the latest genetic studies will finally silence the psychiatric lobby who have been so peculiarly intent on persuading doctors and the media that nothing much is wrong with such extremely ill patients.

Hayley Klinger
25% ME Group Media Relations

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