Dr Hyde has released 2 chapters of this new book which has been delayed as per editing and finishing details which you can find here:
The following is a summary of the book.
The Clinical Diagnosis of M.E. Item 1: Who Falls Ill with M.E.?
There has been considerable discussion concerning that approximately 80% of patients who fall ill with Myalgic Encephalomyelitis are females. There has been less talk about who falls ill. In my experience of investigating well over 1000 M.E. patients over the past thirty years, among adult patients are included:
* a disproportionately large number of, nurses, physicians, psychologists, social workers and other health care workers, particularly women.
* teachers, often those with students with hand, foot and mouth disease (an enteroviral disease) and other undiagnosed entero-viral infections.
* post-pubertal students who consistently burn the candle at both ends, living exhausting life styles and who tend to be in constant contact with infectious disease.
* professional women who are often working well past exhaustion and are essentially doing two jobs, particularly if they have school children at home–and the children are in contact with other enterovirus-carrying school students.
The preponderance of teachers and health care workers are female, with added home duties often including children. If the teachers have a prior autoimmune intolerance, due either to history or non-stop exhausting work plus home duties that run down their immune systems they may be more illness intolerant. Tus it is understandable that up to 80% of M.E. patients are women. Also, I have the opinion
women may tend to be more bound by rules, one of which is to receive all appropriate immunizations.
Immunization certainly protects patients from the targeted diseases, but not against other infections occurring at the same time as they receive immunizations. In my experience prevalence of M.E. among professions also depends upon the catchment area. Government towns, for example, have a large number of bureaucratic workers. Chronic Fatigue Syndrome patients do not necessarily demonstrate the same occupational characteristics. I believe their numbers generally lean to a more male than female distribution, but CFS also includes professions, with work and activities that are male-oriented.
During the 1990s many patients still had a relative, parent or grandparent, uncle, or cousin who had experienced poliomyelitis. Despite the fear it generated, unlike tuberculosis at its apex, polio was not that common. It caused me to wonder whether patients with Myalgic Encephalomyelitis have a genetic sensitivity to enteroviruses.
Dr. Alberto Marinacci, who had taken charge of the 1934 Los Angeles County General Hospital staff and had himself fallen ill with M.E. during the epidemic, but who had recovered, told me the way to encourage the onset of M.E. was to give a series of immunizations to an exhausted health care worker or teacher, who was leaving the next day on a holiday, where they would be in contact with crowds in a bus or plane and, due to the immunization, had a short term compromised immune system. No one going on a holiday by plane or bus, particularly to a third world country, where they are likely to contact novel infectious elements, should receive any immunization, unless it is 30 days prior to departure. (See the British Government publication in The Lancet in 1956.1 ). For physicians who don’t believe this association, the 1956 Lancet journal is essential reading.
If these 2 chapters are any indication, then this book is jammed packed with much information based on science and experience.
As shown in this book, M.E. and polio are both the result of micro-vascular injuries, (probably autoimmune and inflammatory), which damages essential neurological systems. Both are enteroviral injuries but the essential polio injury is to the vascular system of the brain stem and spinal cord, with a secondary injury to the brain as shown on the cover of this book.
M.E. and paralytic polio are in some ways mirror images. M.E. is the result of an injury to specific areas of the vascular system of the brain and cerebellum, and probably also a secondary vascular injury to the spinal cord. Except for location, this is not unlike paralytic polio where there is a vascular injury, primarily to the spinal cord and secondary injury to the brain. In other words, M.E. could be considered a form of non -paralytic poliomyelitis, as illustrated on the cover. M.E. appears to be the same as what was once referred to as missed poliomyelitis. M.E. occurred together with the early paralytic polio epidemics.
The Onset Phase of M.E. Early Confirmation of M.E. :
- Only during the first phase, as in polio or acute flaccid paralysis, is proof of enteroviral infection easily documented by raising titres or recovery of the actual virus.
- Positive oligoclonal banding may be documented if the lumbar puncture is done in the frst week of illness. Oligoclonal banding demonstrates and is consistent with neuronal injury in the anterior temporal lobe. 60 Understanding Myalgic Encephalomyelitis, The New Polio & The Chronic Fatigue Syndromes
- Abnormal brain SPECT scan can be observed in the frst day of the clinical disease and these SPECT changes remain chronically present as seen on Segami oasis SPECT software.
Note: “Only in this early phase is there a reasonable chance of potential remedial action. It is very important that physicians recognize M.E. during the first phase, because it may be the only time treatment may abort the second and chronic phase. Unfortunately, enteroviral titres are no longer available or covered by the health plans in many provinces and various American states. This is major bureaucratic stupidity, leading to a failure to categorize both M.E. and the New Polio (Acute Flaccid Paralysis) patients in North America and Europe. Since no effective treatment has ever been developed to stop or alter the vasculitis in either poliomyelitis or M.E. the only partially effective treatment is total bed rest, as suggested by Silas Weir Mitchell in the 1870s. Governments should support significant research in initial vascular treatment for polio and M.E, and research in general enteroviral immunization.” The onset phase can last up to a week.
M.E.’s Second or Chronic Phase Note: In the chronic forms of M.E. described below, one of the physician’s major roles, if they cannot significantly assist the patient, is above all to protect the patient from the avarice of the insurance industry by assisting the patient in obtaining their disability pension. Patients or physicians may become aware of the symptoms.
14 Cascading Manifestations of M.E.: In addition to the persistence of chronic findings – particularly (a) the persisting rapid decay of intellectual and cognitive stamina, (b) the loss of physical stamina (endurance) following modest physical, intellectual or emotional activity, and (c) the unusually slow recovery following physical, intellectual or emotional exertion –any of the following abnormalities,
(which may indicate a CNS deregulatory injury), can be anticipated to develop in M.E. patients. I include only the most frequently observed relatively common findings.
Multiple social injuries, marital discord and separation, suicide and poverty from patients exhaustingly searching for a cure or a knowledgeable physician.
The causes are (a) incessant hope that an alternative medicine will help, unfortunately a few are dangerous and few are more than Band-Aid helpful, (b) incessant and expensive search for a physician who will promise recovery, (c) social disruption due to insurance companies that refuse or resist paying patients’ disability insurance pension, and (d) insurance companies that do not allow partially recovered
patients to return to work part-time and receive partial compensation. They then, often want the patient to return to full time work or resign. If at all possible such work accommodation should be made to these patients. Most M.E. patients don’t wish to be excluded from a normal work life.
Sectioning: This is a cruel technique employed by the authorities and some physicians in the UK. Sectioning refers to the separation of M.E. children from their parents and their incarceration in psychiatric institutes or hospitals, where they were often placed in a PACE trial on psychiatric medications since it is falsely assumed these patients are psychiatric patients. Deaths have been associated. Years ago, Dr. Michael Cohen, Pediatrician of Tarzana, near Los Angeles, believed some of the street children he had seen were simply abandoned M.E. children.
Twenty-five to thirty-five years after falling ill, as if chronic M.E. illness was not bad enough, approximately a fifth of all M.E. patients have a worsening of their clinical disease. This condition is best described by Gareth Williams, Emeritus Professor of Medicine at Bristol University, in his extremely well researched book on polio, Paralyzed With Fear. Williams is actually describing post-polio-syndrome (PPS); however, this is exactly what is happening to one in five of my older M.E. patients.
I could not better describe the condition occurring in some older M.E. patients than in the following description, extracted from Dr. Gareth Williams’ book,
Paralysed With Fear (page 35). His description of post polio syndrome is identical to that of post-M.E. Syndrome. Williams describes it as follows:
“The cardinal features of PPS are the new onset of muscular weakness, pain and fatigue, together with physical and mental tiredness affecting the whole body. Sometimes there is deep burning pain and tenderness over tendons and other “trigger points”. A flu-like exhaustion can be permanent and debilitating. Symptoms usually develop insidiously and are often made worse by exertion. The diagnosis rests solely on the patient’s account of his or her symptoms and can be contentious. There are no distinguishing physical signs, nor any laboratory tests, which can distinguish these changes. Since two of the symptoms, anxiety and disturbed sleep, are common in older people they are often dismissed. The impact of PPS is highly variable, as is the way it is perceived by the medical profession. Some authorities dismiss PPS as an indolent condition. This view might not be shared by the many who coped well for 20-30 years after falling ill, but who now can no longer climb the stairs, or run their homes.
” The Reputed CFS PACE Treatment: There can be no treatment for Chronic Fatigue Syndrome in any patient without first discovering the cause of the disability obscured by the term CFS. As repeatedly mentioned, there are multiple totally different pathological causes of CFS, therefore potentially multiple totally different treatments depending on the cause of the patient symptoms, a few of which are
Reading Michael Sharpe, Kim Goldsmith and Trudie Chalder’s publication: The PACE trial of Treatments for Chronic Fatigue Syndrome, one would believe PACE is an accepted treatment of CFS . Their publication begins with the following statement, and I quote:
“Chronic Fatigue Syndrome (CFS) is a chronic disabling illness…”
In this statement, the authors shy away from calling CFS either a disease or a syndrome. Yet CFS is not a disease, not really a syndrome either because CFS clearly represents what is probably well over 100 pathologies or diseases. If the treatment were as banal as a sugar tablet, it wouldn’t be so bad. However, at the patient’s insistence, I placed one of the senior Nursing Directors in Ottawa, whose physicians had her diagnosed CFS, into the equivalent of a PACE trial for GET, or graded exercise therapy. I didn’t believe in this so I hospitalized her in the excellent Ottawa Rehabilitation Hospital for a month and let the specialists
perform this “patient insisted” service. This graded exercise not only resulted in a disaster, but she had walked into the hospital and came home in an ambulance and ended up for subsequent years in total bed and house confinement. I and her physicians exacerbated her already severe injury by agreeing to her request. My experience with CBT, Cognitive Behavior Therapy has been equally disastrous. Insurance companies regularly send patients with “CFS” for such combined treatment. The result in every one of my patients subjected to this treatment is they are made, not only worse, but when they are forced to leave the program, the insurance companies then stop paying their client their disability pension. The Insurance Company rational: Non-compliance with the treatment programme. I wonder if insurance companies either intentionally or unintentionally “salt the mine,” by placing a minor or non-illness patient in a PACE program who then miraculously gets better.
Advanced orders are now being accepted through the Nightingale Research Foundation website, http://www.nightingale.ca
The Nightingale Definition of Myalgic Encephalomyelitis (M.E.)download for free
The Terrible Tale of Amy Brown
This story is about a lovely nine year old schoolgirl who lives with her family in an amazing andsometimes turbulent country called England. It once had one of the best public health systems in theworld. It is still a country full of good and kind people and great physicians, but sometimes physiciansare too busy and miss important illnesses. This is such a story. Down load for free
The Clinical and Scientific Basis of Myalgic Encephalomyelitis-
Edited by Byron Hyde, M.D. -Nightingale Research Foundation, Ottawa, Canada
with editorial and conceptual advice from Paul Levine, M.D., NIH, Bethesda, Maryland, USA and Jay Goldstein, M.D., Chronic Fatigue Syndrome Institute, USA,
- Published by Nightingale Research Foundation simultaneously in Canada and the USA, 1992.
Missed Diagnoses -Dr. Hyde’s 2010 book, “Missed Diagnoses” is available either in printed format, or electronic format via download.
I saw Unrest with equal measures of hope and trepidation – would it reflect our journey with Very Severe ME? This is what I hoped for more than anything. The film is good in many ways, as well as raising awareness and educating it’s a call to action and has helped many M.E. patients feel heard for perhaps the 1st time ever but my feeling on leaving the screening was one of aloneness and isolation. The reason for this was that most people seem to think that this is a film that features the most severe. I had voiced my concerns prior to seeing the film in an M.E. group and been assured by someone that had viewed it that the film showed all levels of ME but focused on the Severe and Very Severe patients with ME. This raised my hopes but also added to the sense of isolation I felt on leaving the screening. Whilst I understand the film cannot represent everyone and every symptom, it represents Severe ME not Very Severe ME. So my fear is that people even within the ME community will think this is as bad as it can be (and I really don’t mean to scare anyone) but this leaves the most vulnerable, most invisible Very Severe patients unheard and unseen. The film showed people with glasses on some of the time, curtains drawn sometimes but mostly open, ear plugs in some of the time, noise was loud both in the room and outside the room. There were often lots of people in a room too. I was looking forward to seeing Whitney in the film as I am aware he is Very Severe but in my opinion the film failed to convey this. I have read from items his father has wrote that he has movement hypersensitivity and the number of people in his room has to be limited but in the film there were 5 other people in the room, maybe there was a specific reason for filming it this way but I felt it lost the impact of this very severe symptom. There was also no explanation of what TPN feeding is so the general viewer would not understand how serious this is and that it is not the same as tube feeding. TPN is intra- venous feeding and a last resort. Tube feeding via an NG or PEG(J) would be used for someone with swallowing problems , TPN feeding is necessary when the gastro intestinal tract is not working, it requires preparation in a surgically sterile environment making a hospital out of your home, it is high risk via a vein to the heart and at risk of serious infection and sepsis. There were also a lot of details left out about Karina Hansen so if you didn’t already know her story it wouldn’t have the impact it should. Again I do understand time constraints and the limits to including everything. The information Nancy Klimas gives is brilliant as was all the medical information, history and the feminism aspect that has never really been covered before and is so important. But overall I didn’t think it had the impact of Voices from the Shadows or Jens Ted Talk which I thought was fantastic. Heartbreakingly it also appeared to put all deaths down to suicide with a list of names but no explanation given as to how they died. There was no mention of Sophia Mirza on the list or the fact that ME was cited as cause of death on her death certificate following her post mortem. I’m trying to focus on the positive I can take from it and there are many positives in that it is making a massive impact, raising awareness and doing it all at a time that seems to be just right. I get it’s Jens personal story and the love between her and Omar shines brightly and is beautiful. The scene where Omar tries to lift Jen from her wheelchair and she is in such pain was very moving and reflected how a crash can happen and the helplessness felt by carers and loved ones. I get that the film cannot cover every- thing but it really hit home to me that most people have no idea about Very Severe ME even sadly when they think they do. It is a world away from Severe ME and surely the danger here is that if we think this film shows the Very Severe then the Very Severe will continue to be even more vulnerable, neglected and disbelieved. The Very Severely affected are the invisible amongst the hidden. So please if I may I would like to show a snapshot of what it is like to be
Very Severely affected.
My beautiful daughter Merryn died on 23rd May 2017 aged 21. Prior to becoming ill aged 15 with the Epstein Barr virus she was an outgoing, laughing, hugging bundle of energy and fun. She did not commit suicide and the irony is she wouldn’t have been physically able to even if she had wanted to which thankfully and amazingly she didn’t. She was totally bed bound and had to lie flat at all times, even a slight incline in her bed was impossible. She lay in a dark room always – light caused her extreme pain and worsening of symptoms. She had hyperacusis (noise hypersensitivity) and noise had to be controlled in her room, within our house and outside the house – if this was beyond our control ear plugs and industrial strength ear-defenders had to be worn however these caused their own problems. Noise would cause her extreme pain and myoclonic seizures. Her skin was hypersensitive to touch and even the gentlest touch could cause agony. I could stroke her cheek and head and sometimes hold her hand. We had a special sign for a cuddle as I was unable to cuddle her anymore. A scene in the film showing a family member drumming on a patient’s stomach made us all gasp and cringe. She could only tolerate one person in her room at a time due to movement hypersensitivity which would cause con- fusion and increased pain. Even pictures on her wall and items in her room could cause confusion so had to be kept to a minimum. When the district nurses came to change her syringe drivers she had to have an eye mask on. She was in severe pain always despite being under the care of our local hospice at home and on 3 syringe drivers delivering extremely high doses of pain relief anti sickness and neuropathic medication 24hrs a day. Her hospice doctor said she had never witnessed such suffering and felt so helpless. She could not swallow and had Intestinal Failure necessitating intravenous feeding via TPN 24hrs per day. This involves having a Hickman line inserted through the chest to the heart to deliver nutrition intravenously. As detailed previously this type of feeding is high risk with complications of severe infection, sepsis and if used in the long term liver failure. It is an absolute last resort to prevent death by malnutrition for patients who cannot take food orally or via their digestive system. And pain, pain and more pain, paralysis and isolation, never the simple joy of food, drink or conversation, never being able to give or receive a cuddle, never seeing the sun or feeling a gentle breeze on your skin just pain and darkness and repeat.
Yet still hope, hope that one day there will be change and I do believe this film is part of that change. I hope I don’t sound negative or critical as we need this film out there and Jennifer Brea has been amazing in doing it but please, please remember the most vulnerable, most invisible, the Very Severe, I know they represent the smallest group within the ME population but what other illness gives the least attention to the worst affected?
Gail McPartland lives in Ayrshire and has been a 25% ME Group member for many years. Code 998 is her debut novel.
In an anti-semitic, homophobic society, Doctor Nadette Eichmann plans to flee Berlin with her Jewish lover, Ariella Ish-Shalom. Unknown to them, Nadette’s fiancé, Kaarl Bergmann, an SS Leader whose job is to capture and incarcerate homosexuals, is on their tail.
Riddled with jealousy, Kaarl uses his duty to the Führer as an excuse to punish his fiancée and sends his beloved for rehabilitation. As a Code 998 prisoner, Kaarl believes she can be cured of her homosexuality and will crave to return to him.
Is Nadette strong enough to survive or will she succumb and become Kaarl’s Nazi housewife?
ISBN – 978-1-910130-12-4
Retail Price – £9.99
Published by yolkpublishing.co.uk
Buy here – http://yolkpublishing.co.uk/catalogue/
Marion Michell’s beautiful collection of textlings – carefully crafted and tightly focused prose – is illustrated with her own artwork. The writing in this prose collection surges off the page giving glimpses of a life bent out of shape by M.E. and P.O.T.S., debilitating and little understood diseases. Her words sizzle with the suppressed energy of an adventurous spirit.
Tom Shakespeare, Professor of Disability at Norwich writes: “In the tradition of Fernando Pessoa and William Soutar, Marion Michell writes from her bed and takes us on journeys with language which leave us enriched. Concision may be forced on her, but it generates memorable distillation of the experience of illness, which will be familiar to anyone who has endured a health problem.”
Available on Kindle £5.95 or Paperback £8.99
(scroll down – 8th on the list at time of writing)
I find aging with chronic illness to be a very strange experience, especially when that chronic illness is the much maligned, misunderstood, misinterpreted Myalgic Encephalomyelitis.
Large swaths of time disappear into an empty, nothing existence, where time appears to have stopped altogether, the only experience being pain and isolation from everyone and everything, even yourself, whilst at the same time, finding it has simultaneously jumped or leap- frogged over most major events without even a smile of recognition or suitable celebration.
No contact possible, the family gatherings mount up and fall over with neglect and you are no longer thought of or expected to participate. Visits, become painfully impossible, dialogue then becomes one-sided. You have nothing to tell except excruciating agony and a disappeared life, so tiny by comparison that the normal person simply would not know how to exist within it, so small the experience, so inadequate the celebrations when seen from worldly view.
You try to cling on to who you were, to talk as if you know about things, as the years go by and they diminish into unreality, a life once lived becomes bizarrely unrecognisable to life lived now.
So many things lost. No social life. No children. No holidays. No careers. Little money. Little status. So many hopes and dreams let go of, not possible at first, still not possible 25 years on and so you learn to adjust, to see the world differently, to hope in goodness rather than specifics. You become disconnected from the outside. You are filled from the inside, if you are filled at all.
You learn to live in smaller spaces, in new ways, you focus on the moment, for any other moment beyond now is unpredictable, unreliable, uncontrollable. And when the next moment comes, it is still mostly empty of all possibility. And yet you carry on, holding on for better moments, new ways forward, hope an elusive star that shines, at intervals, to guide you forward.
There is a deep sadness about the passing of time, that cannot be comforted away, for it is lost, even to memory, for the mind-blanking spaces of paralysis destroy everything in sight.
And so the 25 years of our marriage – which should be and still are – an amazing celebration, have to be celebrated in a totally alien way to most.
For despite the horror, the torment, the despair, the torture experienced again and again, and all that living with Very Severe ME throws at us, still, for us at least, their is a solidity, a continuity, a flow of love, that beats all illness, that transcends all suffering, a constancy of commitment beyond the impossible, where most would have walked away and given up with the sheer impossibility of most moments, yet we have stayed together and amazingly continued to love each other, finding meaning within our lives, forging a way forward, despite the negation, the neglect, the downright harm done by some and the almost complete dearth of medical integrity that is required yet rarely found in this particularly medically ignored disease.
And so when it comes to our Silver Wedding, we look back together, unable to share our celebration with others, unable to have a party, unable to go out to a pub or a restaurant or a cafe or to go anywhere at all, to have a special meal.
Yet we hold on to each other on that most special of days and we find a depth of meaning in the simplest things that we have shared together – moments when we have clung on and survived the most desperate of experiences.
So many memories of beloved garden birds who have become our friends; the robins, the doves, the blue tits, the great tits and the blackbirds, who have graced our lives down many years, so many precious moments with our two much loved Corgis, one now sadly gone, greatly missed, both who have loved us and blessed us beyond imagining, awards won, videos made showing the truth of this devastating neurological disease, proud as anything of all the numerous things Greg has done for us all down the years, especially speaking up at the Gibson Inquiry in Parliament, publishing books, articles, creating websites, developing the MOMENT Approach, to try and keep people safe, always committed to truth and integrity – no small feat as an unwaged carer, caring for his tortured wife.
We feel proud of all the things we have had to fight for and all the times we have won.
Our hearts shine when we look at our garden, grown from nothing, one plant at a time, over many years, when we think of the huge pleasure, from the smallest thing: seeing a ladybird snuggling in a Hollyhock bud, holding our breath while a baby robin jumped on my foot, feeling the wind in my face, easing the never-ending pain for one tiny moment, no centimeter of my body, pain-free, focusing on the pure, elegant beauty, of a single rose, opening to the bluest sky above it, waiting, then finally seeing the tiny sheaths of grass emerging as they push through the soil, growing our own lawn from scratch.
The triumph of Greg baking me a sugar-free, dairy-free, hydrolysed oil-free, amazingly delicious, gluten-free cake, a hand held, a look of love, a candle lit every year at 3pm, a prayer said; all these things are a great strength, holding me against unimaginable pain, so many intolerable moments held in love, triumphing purely because of that love.
A marriage vow stronger than iron. That indeed is something incredible to celebrate!