Meet our Patron and Advisors

Patron, Dr Byron Hyde
 
Dr Bryon Hyde is 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.

About our Founder, Dr. Byron Hyde

Dr. Byron Marshall Hyde studied pre-medicine in the Faculty of Medicine, University of Toronto followed by a degree in Chemistry and Nutrition in 1961. His first medical employment was as an immunological research chemist at the Roscoe B. Jackson Laboratory, Bar Harbor, Maine - a leading world laboratory in immunological & transplantation research. He then became Chief Technician in charge of the Electron Microscope Laboratory at the Hospital for Sick Children in Toronto.
Dr. Hyde returned to the University of Ottawa and graduated from the Faculty of Medicine in 1966. After an internship at Montreal’s Hotel Dieu and residency at the St. Justine Paediatric Hospital and the Ottawa Civic Hospital, he opened a family practice in Ottawa that continued until 1984 when he started the full time study of post infectious Myalgic Encephalomyelitis. For five years he had travelled extensively around the world investigating the epidemics of M.E. in the USA, the UK, Australia, New Zealand and Iceland and spent the next several years being instructed by previous researchers of these epidemics. Only then did he start to investigate patients who had M.E.
In order to widen resources to investigate these patients, in 1988, he founded the Nightingale Research Foundation, obtaining charitable organization status in the same year. Nightingale is dedicated to explore, understand and treat the patients disabled with Myalgic Encephalomyelitis, Chronic Fatigue Syndrome (M.E. and CFS), fibromyalgia-type illnesses and post-immunization injuries. In its early years, Nightingale became a critical vehicle providing technical assistance to other medical practitioners and researchers worldwide and outreach and informative publications to help and encourage thousands of North Americans who were patients or had family members disabled by M.E. or CFS. See About Us  for more on Nightingale’s early initiatives.
In the 1980s, little physician or patient-based research existed into these poorly understood illnesses. At that time few North American physicians were unaware of the excellent UK diagnostic criteria and clinical definitions of M.E. In the UK, the excellent work of many of the early M.E. physicians had come to a virtual standstill and there was an increasing attack on both the old and new M.E. physicians by many psychiatrists and a general lack of knowledge by the physicians. In Canada, medical research had no appreciable funds to unravel the enigma of these illnesses and government cutbacks only added to the difficulty of finding funds for investigation of M.E. and CFS patients. Nevertheless, Dr Hyde, with the help of a dedicated band of volunteers and physicians, set out to change this situation that was causing even greater injury to the already disabled M.E. patients. Thanks to the assistance of many medical practitioners and scientists, investigational research slowly advanced until by 1998, Dr Hyde was able to diagnose the cause of the M.E. and CFS type illnesses in 90% of the patients who came to his office for investigation.
As he expanded his knowledge of this group of diseases, he collected critical comparative data for Nightingale’s patient research database. Consequently, in 1990, in collaboration with Dr. Richardson and the Newcastle Research Group in the UK, the funds were raised to organize and convene the First World Symposium on M.E. and CFS at Cambridge University in the UK. Dr. Hyde went on to collaborate with over 100 experts to edit and publish in 1992 the 725-page 1992 encyclopaedic textbook, The Clinical and Scientific Basis of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome, the first comprehensive and authoritative medical reference book on M.E. and CFS still widely cited by researchers internationally.
Initially, many physicians were not aware of the fact that many children fall ill with M.E. and CFS-like diseases. Dr Hyde still spends considerable time assisting children and students with M.E. and CFS. In part, due to this interest, Dr. Hyde noted that acute onset M.E and CFS patients had similar SPECT brain scan topography to children he had examined with acquired autistic type injury. In 1989, he made this statement to a San Francisco medical symposium that included Dr. Michael Goldberg, a paediatrician from Tarzana, California who had noticed a similar spectrum of brain changes in his autistic children patients. Dr. Goldberg started the Neuro-Immune Dysfunction Syndromes (NIDS) association with Dr. Hyde as one of the founding board members. This joint pioneering work with children afflicted with this youth-robbing illness spectrum established a world-wide friendship network of doctors interested in collaborating in this field of autistic and acquired brain dysfunction research.
Dr Hyde re-grouped Nightingale and focused its efforts in 1995 on collaborative research with like-minded medical practitioners and researchers internationally and on its publishing activities. Today, Nightingale’s priorities are individual patient-based research with total body / brain investigation of M.E. and CFS patients as well as the development of a sophisticated database to consolidate these findings for analysis and publication. The uniqueness of his work is in its emphasis on total body mapping of all systems and organs so that he can understand the nature and complexity of the M.E. and CFS patients’ illnesses. He is one of the few physicians worldwide whose practice has consisted solely of the investigation of M.E. and CFS patients since 1984.
Dr. Hyde is also active in individual case M.E. and CFS research, providing advice on legal and medical research issues in order to provide moral and scientific support for the small but growing number of leading edge M.E. and CFS diagnostic initiatives. Today, he probably manages more detailed data base information in this area of inquiry than any other researcher in North America as a result of his investigations into acute onset and gradual onset central nervous system dysfunction associated with fatigue and pain syndrome. Depending on adequate funding, it is planned to update this database composed of input from over 3,000 patients, and publish various epidemiological studies of this population as well as other publications and journals of interest to the CFS and M.E. community. Recently, this detailed patient investigational work has demonstrated new factors: the high rate of thyroid malignancy that exists in patients who initially fell ill with chronic fatigue syndrome. Thyroid cancer exists in only 1 per 100,000 of the general public, yet 6000 per 100,000 M.E. and CFS patients. These results have been accepted for publication in a leading nuclear medicine journal and will be made available on the Nightingale website.
Nightingale has a new database program that has been generously funded by its patients and their families. It is at the heart of a second level of clinical research based on all of Dr Hyde’s investigational patients. For many of these patients, this investigative data covers over 20 years and is proving to be one of the best M.E. and CFS longitudinal databases in existence. In addition to the thyroid pathologies noted above, these data have already begun to yield discoveries not found elsewhere. Dr. Hyde believes that the vast majority of the gradual onset group of CFS patients was misdiagnosed and many have subsequently been found to be suffering from major organ or system pathologies that had not been identified by primary care physicians or subsequent specialists.
Dr. Hyde continues to practice medicine in Ottawa. He has published a number of medical, poetry and prose works. He is engaged to the lovely Lone Due Petersen and is blessed with an extended family of four children, seven grandchildren. Then there is his Lucerner Niederlaufhund, the family dog whose name is Atimus, and the small Bengal cat called Maus, previously known as Josephine. 

Betty Dowsett: MBChB, Dip Bact: Medical Advisor

Dr. E. G. Dowsett is Honorary Consultant Microbiologist to the Basildon and Thurrock Hospitals NHS Trust

Dr Dowsett has been working with ME suffereers and organisations for 40 years and is well respeacted throughout the world for her expertise and compassion

She says; "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"

Dr Nigel Speight MA, MB, B Chir, FRCP, FRCPCH, DCH in additional to Dr Betty Dowsett, who remains our Honorary Medical Advisor.

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 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 Vance Spence: Scientific Advisor

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 your MCS Scientific Advisor

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.

Best wishes
Malcolm Hooper