Byron Hyde, MD (1936-2024)
A champion for people with ME leaves behind a legacy of information.
Update May 2025: The website for Nightingale Research Foundation has been taken down - but a back up is available. See information HERE.
Original article:
It is with a heavy heart that I share the news of the recent death of Dr. Byron Hyde.
I learned about Dr. Hyde and his work very early in my illness through my subscription to the CFIDS Chronicle. I saw how he fought against the “fatigue” narrative and made clear that what we were all experiencing had been around for decades in outbreaks and what was happening with the governments and insurance agencies was harming people with ME.
One of the reasons I think Dr. Hyde had so much knowledge was that he was one of the few physicians who examined patients from earlier outbreaks.
The following is from the Nov 1993 issue of the CFIDS Chronicle’s article that covered the public meeting hosted by the Centers for Disease Control (CDC) on September 27, 1993. This meeting covered reviewing data from population and clinical studies related to the use of the chronic fatigue syndrome (CFS) case definition published by Holmes, et al. in the Annals of Internal Medicine..
The article stated the following about Dr. Hyde at the meeting:
“Drs. Simon Wessely and Ian Hickie displayed their wit and nationalism with jokes about their respective countries (England and Australia), while Dr. Byron Hyde of the Canadian Nightingale Foundation was the most critical speaker of all, attacking the composition of the panel and the views of certain panelists.”
The following quote from that same publication offered more insight into how Dr. Hyde was a fierce advocate on behalf of patients.
"I find it abhorrent that you have a person on your committee who publicly, on several occasions, to large numbers of people, has ridiculed people with chronic fatigue syndrome."
"The term[s] 'fatigue' and 'chronic fatigue' never existed in this entity until it was put into [the name] in 1988 ... the whole concept of fatigue has warped our understanding of this illness."
Thank you to Matt Lazell-Fairman for uploading copies of the CFIDS Chronicles. Learn more about that HERE.
Later I corresponded with Dr. Hyde as I sought information for myself and to write some of my articles. He was always gracious in his responses.
Nightingale Research Foundation
Dr. Hyde spent decades working to understand Myalgic Encephalomyelitis and founded the Nightingale Research Foundation (NRF).
The website describes the NRF:
“The Foundation was founded by Dr. Byron Hyde in 1988, and incorporated as a charitable organization in the same year, to explore and understand Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (M.E. and CFS) and fibromyalgia-type illnesses. Since its inception, NRF has provided technical assistance to physicians, nurses, other health care professionals and researchers, as well as information to help and encourage thousands of North Americans who are patients or have family disabled by M.E. or CFS. The Foundation is known internationally for its dedication to research and rigorous medical investigation of M.E. and CFS disabled patients throughout its history.”
Books and Interviews
His contributions to the understanding of myalgic encephalomyelitis include interviews and books.
The following are some of the books I have on hand which have helped me better understand ME.
Understanding Myalgic Encephalomyelitis is a large hard bound book. The newsletter announcing the book describes it as:
“This easy to read, hardcover, coloured, library-quality 8.5 x 22-inch (22 x 28 cm) book with sewn pages is the best and most comprehensive book ever written on M.E. and CFS containing essential advice for patients and physicians.”
It describes a few of the 22 chapters:
“1. The History of M.E./CFS from the American Civil War to the present described by multiple physicians from 1865 to the present including: - Dr. Francis Dercum, physician to the President of the USA, Woodrow Wilson, - Dr. William Osler, Canadian born co-founder of Johns Hopkins Medical School.
2. The (a) diagnosis of M.E. and CFS and (b) its historic relation to Poliomyelitis. A description of the M.E. epidemics from the world’s first major Polio epidemic in 1905.
3. The usefulness of a Segami brain map demonstrating an M.E. patient’s chronic encephalitic illness, which clearly indicates why M.E. patients have rapid long term muscle and brain exhaustion with even modest activity.
4. The 18 serious cascading illnesses that occur regularly in patients who fall ill with M.E., which have never been previously mentioned in any other book. These are illnesses, you and your physician should know about, many which can be treated. The 12 potentiators that make M.E. worse…”
Missed Diagnoses is a book I have purchased a few times as I have given some away to doctors and other patients. It covers the danger of misdiagnosing people with ME when they have something else that is often missed. I included information about this book in my article Missed Diagnosis: Confirming a diagnosis of myalgic encephalomyelitis.
The description from the Nightingale Research Foundation’s definition of ME explains his views about Chronic Fatigue Syndrome:
“Chronic Fatigue Syndrome (CFS): in our experience the diagnosis of CFS only means the investigating physicians have not thoroughly investigated the patient. We routinely find in US, Canadian and European CFS patients diagnosed by physicians in their country, a variety of missed diseases.”
The Nightingale Research Foundation Definition of Myalgic Encephalomyelitis (M.E.) is available for free download on the NRF website.
Episode 121 of ME/CFS Alert with Llewellyn King interviewing Dr. Hyde, from December 2020, covers how he came to study medicine and his encounters with people with ME. He also discusses his understanding of the connection to polio. This is an excellent video to “meet” Dr. Hyde.
I am sad that he is gone, but I am eternally grateful that he devoted so much of his life to helping people like me who live with the devastating aftermath of contracting the disease Myalgic Encephalomyelitis.
He will be missed.
Colleen
Information provided here or in comments is not to be considered medical advice
Not only a lovely tribute to Dr. Hyde, but a wealth of information. Thank-you so much for writing this, Colleen, for giving people some essential information about Dr. Hyde's very appropriate opinion of "the powers that be", and for directing people to his books, other writing, and interviews. He was, since the 1980s, one of the world's (very few) true experts on M.E.. The world and the M.E. community have lost an exceptional diagnostician and a kind and dedicated man.
Coleen I too am saddened that we have lost Dr Byron Hyde. I hope he had a peaceful passing.
I fell ill 31 years ago. It took 13 years to get a diagnosis! Even then there was absolutely no information. Luckily I found Caring For The M.E. Patient by Jodi Bassett of the Hummingbird Foundation for M.E. (2011). Lots of input from Dr Paul Cheney and Byron Hyde.
I’ve photocopied sections for GPs as I don’t have the endurance to explain/justify my Very Severe (90%) disability. They have failed to read and thus modify their attitudes.
My level of disability and refusal to get out of bed to attend a minor injuries unit which was the response of a visiting doctor when she was examining me in my bed, would have necessitated a 24 mile round trip.
I complained to the Practise and the response psychologised my refusal.
But I’m not letting them get away with it. I have escalated my complaint to the highest authority in the UK. The Parliamentary And Health Service Ombudsman.