Dr Bryon Hyde is a leading physician and researcher specialising in Myalgic Encephalomyelitis (ME) and has worked exclusively with ME patients since 1985.
He is the founder and chairman of the Nightingale Research Foundation which is dedicated to explore, understand and treat patients disabled with ME and is at the forefront of the struggle to draw a clear distinction between ME and the current definitions of Chronic Fatigue Syndrome. In 1992 he published the medical reference book still used by researchers internationally “The Clinical and Scientific Basis of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome”.
Dr Bryon Hyde is an outspoken critic of the role psychiatry has played in ME. His entreaty that “Psychiatrists should not ever be placed in charge of diagnosis and treatment of M.E. patients” is one we fully support.
Dr Bryron Hyde has been instrumental in bringing about recognition of ME as a serious illness and we feel he fully represents the interests and aims of the 25% ME Group. We are proud to have him as our Patron. Read More
Resume of Dr Nigel Speight
I was born in India and lived there until I was 10, my father having been a missionary doctor there for 15 years. I went to secondary school at Merchant Taylors’ School, Crosby (Merseyside). I qualified in 1966 from Cambridge and University College Hospital, did junior jobs in London and then spent 4 very happy years teaching at the new medical school in Dar es Salaam, Tanzania. On my return to the UK I decided to change from Adult Medicine to Paediatrics (a decision I never regretted), and did my paediatric training in Newcastle. In 1982 I became a consultant and took up my post in Durham, where I worked happily for the next 25 years. I developed special interests in childhood asthma, food intolerance, Child Abuse and Neglect, emotional and behavioural problems and ADHD.
I Co-authored the ICC (International Consensus Criteria) prime
I retired in 2007 but remain active and am doing locum posts for several months a year.
My interest in ME developed early, from around 1984. Like Dr Alan Franklin, I was consulted by a young girl in a wheelchair who announced that she had ME. I confessed to knowing nothing about it but promised to look into it. Shortly after this, one of our local GPs invited Dr Dowsett to lecture in Durham and hearing her describing the clinical features so clearly was a pivotal moment for me. Subsequently I attended meetings and heard Alan Franklin and Dr David Bell speak on ME in children.
Over the next 20 years I was to see over 500 cases nationwide. Most of these were in my own area and region but I was also called in for second opinions around the country, usually for severe cases. I have also given numerous lectures to medical audiences around the country, and also in Scotland, Northern Ireland and the Isle of Man.
The most distressing cases I have encountered were those in which families were being subjected to Child Protection proceedings. This was usually due to the failure of the local doctors to officially diagnose ME, or for them to diagnose it but to imply it wasn’t a real ie organic condition. This left the families open to alternative explanations such as neglect, emotional abuse or Munchausen Syndrome by Proxy. I was involved in >20 of these cases around the country and am proud to have been instrumental in reversing the proceedings in all but a small handful. However one of my former patients who is now 24 is being abused by the system in this way even now, and I have been unable to protect him. In 2002 I was invited to lecture in Sydney at the Alison Hunter Memorial conference on my experiences on this front.
I have performed research on ME in the form of a follow-up study of 49 consecutive paediatric cases. I have recently submitted this for publication.
After attending a conference in Leicester in 2007, I have become very interested in the issue of Lyme Disease as a cause for ME. My last and most severe case of ME in Durham has made a total recovery, and I had treated her for 2 years with antibiotics.
I served on the Chief Medical Officer’s Working Party which reported in 2002, and also the College of Paediatrics Guidelines group. I was not involved in drawing up the NICE (or not so NICE) Guidelines! I gave evidence to the Gibson Inquiry and on three occasions have talked to the ME interest group at the Scottish Parliament.
I am currently Paediatric Adviser to the MEA and TYMES Trust, and for many years was the paediatric adviser to both AYME and Action for ME. After many years of happy association with AYME our paths diverged and I recently resigned as their Patron.
I am married with 4 children, and 4 grandchildren. Among other hobbies, I enjoy cycle expeditions and have within the last few years cycled in Ecuador, Cuba, Jordan, and South India. In 2007 I cycled from Land’s End to John of Groats, and have just done half the distance in the opposite direction.
Dr. William Weir is a retired infectious disease consultant based in Harley Street, London. He has always had an interest in the immunology of infectious disease and ME/CFS in particular. He is a consistent advocate of properly conducted scientific studies of the condition. From 1998 to 2002, he assisted the U.K. government’s CFS/ME Working Group, which produced a comprehensive advisory report for the U.K. Chief Medical Officer, Sir Liam Donaldson. He is an Honorary Fellow of Doctors with ME. Along with Honorary Fellow Dr. Nigel Speight, Dr. Weir recently produced a paper entitled “ME/CFS: Past, Present and Future,” in which they reflect upon the history and controversy surrounding ME/CFS. He recently gave a detailed interview to Phoenix Rising regarding Science in the Age of Dogma. He has co-authored a paper on malnutrition in severe and very severely afflicted patients, ‘Life-Threatening Malnutrition in very Severe ME’ and is developing an interest in the field of Long Covid research; it is highly likely that this will turn out to be a variant of ME/CFS with the same underlying pathological basis.
I have been a social worker and manager in local authority social care for most of my working life. This has encompassed both children‘s and adult services, including mental health, but with a particular focus on disabled children.In 2000 I served on the children’s group of the Chief Medical Officers Working Group on ME/CFS on behalf of the ADSS (Association of Directors of Social Services). Since then I have acted as social work adviser to the Young ME Sufferers Trust (TYMES), assisting with cases where families of children with ME become involved with Children’s social care often as a consequence of safeguarding issues being raised . I have also provided advice to the 25% ME Group in situations where members are encountering particular difficulty with adult social care. For several years now I have represented the 25% Group at meetings of Forward ME, the umbrella campaigning group for ME charities, becoming involved in the campaign to press NICE to rewrite their guideline, When they finally agreed to do so I applied to be the social worker on the guideline development committee which has kept me occupied for the past three years!
Dr. E. G. Dowsett was Honorary Consultant Microbiologist to the Basildon and Thurrock Hospitals NHS Trust
Dr Dowsett had been working with ME suffereers and organisations for 40 years and is well respeacted throughout the world for her expertise and compassion.and we really appreciated all her works and efforts on behalf of sufferers while she was alive and which she did at her own expence
She said; “Few people would dispute that ME (Myalgic encephalomyelitis), an illness which blights the hopes and aspirations of all sufferers, especially the young, is denied equal treatment in respect of diagnostic facilities, medical coverage and welfare provision. Comparable chronic and unpredictably disabling neurological conditions, for example Multiple Sclerosis, which was formerly ascribed to “hysteria” and similarly neglected, now receive government recognition, facilities within the NHS”
Vance was instrumental in the founding and launching of ME Research UK. A graduate of the Universities of London and Dundee, he was a Principal Clinical Scientist responsible for vascular services and research and, in 1997, he rejoined the University of Dundee Medical School as Honorary Senior Research Fellow in the Department of Medicine, with the objective of stimulating research into the causes of ME.
Dr Spence’s background:
A graduate of the Universities of London and Dundee, Dr Vance Spence was a Principal Clinical Scientist responsible for vascular services and research.
After contracting ME in 1980, he was forced to take early retirement from his NHS post after 8 years of progressively worsening symptoms. But, in 1997, he rejoined the University of Dundee Medical School as Honorary Senior Research Fellow in the Department of Medicine, with the objective of stimulating research into the causes of ME. In 2000, he was instrumental in the founding and launching of MERGE, the ME biomedical research charity.
When it comes to research into the condition. Dr Spence believes that the severely affected people with ME are doubly disadvantaged: not only is this illness under-researched compared with other chronic conditions, but the most severely ill group of patients is under-represented in what little research is done. In fact, very few studies exist, and all define “severe illness” in different ways, complicating interpretation of the findings.
And specific laboratory-based or experimental studies on severe sufferers are as rare as hens’ teeth.
ME Research UK and the 25% ME Group have close working links, and will be working hand in glove in the months and years to come to ensure that the cause of ME and specific biomedical treatments are found. This is no easy task, but we are determined to see it through”
Advisor on MCS Matters Malcolm Hooper Ph.D.,B.Pharm.,C.Chem.,MRIC Emeritus Professor of Medicinal Chemistry
I am happy to serve as MCS Scientific Advisor to 25% ME group charity. The only charity (set up over 20 years ago) that focuses specifically on the needs of those most severely affected by ME
I have recently critically reviewed the recent BMJ BEST PRACTICE DOCUMENT- many of my comments were ignored .
I have also published on the internet numerous articles, many with Margaret Williams, from 1986-2018 which have been catalogued at http://www.margaretwilliams.me
In 1997 I became involved with the veterans from the first Gulf war, 1990-1, and the illness they suffered now known as Gulf War Syndrome, GWS. GWS is also called the ME of the Military by some commentators and there is considerable overlap in the extensive and intensive symptoms that they describe. I first spoke about GWS to Dr John Richardson’s ME Research Group and became drawn into the world of ME to discover new and disturbing areas of suffering, abandonment by conventional medicine, and heroic persistence in mutual support and the search for understanding, diagnosis, treatment, and hope for the future.
A further development was an involvement with organophosphate, OP, poisoned farmers since OPs were widely used in the Gulf. The nerve agent sarin, extensively released over the battlefield, and pyridostigmine bromide, used as an experimental prophylactic treatment for nerve agent poisoning, both attack the same enzyme systems as OPs delivering a ‘triple whammy’ to the personnel in the battlefield.
The emergence of multiple chemical sensitivity among many ME and OP sufferers drew me into this area of controversy.
My overwhelming experience from all these encounters has been the duplicity, deviousness and downright untruths propagated by officialdom when asked to address these multiple symptom, multi-system and multi-organ illnesses whose biological basis is only now beginning to emerge. I have been asked to lecture and write on all these issues as an independent scientist and I deeply regret the way political attitudes are currently distorting the science and abusing sick people. Things must change and integrity must be our watchword.
My background in drug design and development and degrees from the Faculty of Medicine in the University of London provided me with a sound foundation for engaging with all these issues and my Christian commitment has enabled me to ‘hang in there’, take on the wider aspects of politics as well as the science. I have discovered many friends and come to admire and respect great courage shown by those who suffer from these illnesses. I am married to Mary, over 46 years, with 2 sons and 1 daughter, and 5 grandchildren. I rejoice in their support and encouragement.