Quotes from the unusual life of Dr. Byron Hyde

[Pyrrhus]

I thought I would start a thread to collect quotes from the life of Dr. Byron Hyde, who has had a front-row seat to some of the most important events that have occurred in the field of ME/CFS:

On the Akureyri outbreak:

In the 1940’s there was in the city of Akureyri, on the north shore of Iceland, facing the Arctic Ocean, a Polio/M.E. epidemic that began in the local boarding school. [...] When I went to Iceland to examine these patients in the late 1980s, the injured were still significantly disabled and that was 40 years after the epidemic. Yet the patients told me again and again, they lived in shame due to being constantly mocked by their colleagues as inventing their disability.

On the Royal Free outbreak:

In the 1950 Royal Free Hospital Polio/M.E. epidemic in London England, 292 physicians and health care workers fell ill with M.E. during the concurrent polio epidemic. Dr. A. Melvin Ramsay, one of my early M.E. teachers, who was in charge of the epidemic, not only accepted that this was a parallel injury associated with the polio epidemic, but followed his patients for years, caring for the doctors and nurses who had fallen chronically ill with M.E. He and his team were able to demonstrate significant EEG brain changes and multiple other physical findings.

On McEvedy and Beard's paper calling the Royal Free outbreak "hysteria":

McEvedy was working on his MA at Magdalen College, Oxford when he initially gained recognition by publishing a thesis based upon two reputed instances of mass hysteria that occurred in two primary schools in the United Kingdom. [...] I did succeed in speaking to the head mistress of the second school. Even though it was well over ten years since the McEvedy incident she was still quite angry with him. She recalled the incident in great detail. She said that Dr. McEvedy had never been to the school, had never examined any of the children and that his thesis was a work of total imagination. [...] Over three visits to England I interviewed Dr. Ramsay on each occasion concerning the McEvedy thesis and publications. Dr Ramsay stated that Dr. McEvedy had never seen a single patient from the Royal Free epidemics. [...] Dr. Ramsay stated that Dr. McEvedy was given permission by medical records to look at some of the charts and after a few hours he left never to return. McEvedy then wrote up his thesis for which he obtained his PhD. [...] I then decided to seek out Dr. McEvedy and find out how he came to his conclusions that were so different from any evidence that I was able to uncover to date. [...] I bought a reasonably expensive bottle as a gift and then went to see him. He was at home in his small 1890s row house in a west-end London suburb. [...] I asked Dr. McEvedy did he have any records concerning the two schools he had reputedly visited? He said he did not. "Why had he written up the Free Hospital epidemics as hysteria without any careful exploration of the basis of his thesis?", I asked. His reply was devastating. He said, "It was an easy PhD, why not."

On the Incline Village outbreak:

In Canada, as soon as we heard news of the Incline Village, Lake Tahoe epidemic, we knew it was caused by one or more of several enteroviruses causing the pan-epidemic across North America. We were seeing in Canada what had spread across all of the USA. We knew because the findings we were seeing in Canada exactly mimicked the US patients we were also seeing. They too demonstrated marked enteroviral titres from the Michigan and NYS patients. The major difference was that the Americans were obsessed first with Epstein-Barr Virus, then one herpes virus, then another herpes virus...

On the CDC meeting that invented the term "Chronic Fatigue Syndrome":

Fast-forward to April 1987 and the First International Symposium on Immunology and Pathogenesis of Persistent Virus Infections held in Atlanta Georgia. This was a symposium hosted by the CDC and Dr Carlos Lopez. At this meeting Dr Gary Holmes gave out his new paper, "A cluster of patients with a chronic mononucleosis-like syndrome," that had just been published in JAMA. (See Holmes, Kaplan, Stewart et al: JAMA 1987:287:2297-2302) The publication essentially stated that Epstein Barr Virus was not the apparent cause of this illness in the 130 patients from which they took blood samples. But they weren't sure and suggested that further study be done. Stephen Straus who was apparently the NIH chief behind the Lake Tahoe investigation was sitting beside me at this symposium. When Dr Holmes gave both Dr Straus and myself the paper, Dr Straus, in a monologue to him, reacted very negatively, stating that the patients had tricked him. I was amazed. [...] At the termination of this meeting Dr Gary Holmes called a committee to discuss the creation of a definition for this 1984 Lake Tahoe Raggedy Anne Illness that had appeared sporadically and in clusters in many areas of the United States and Canada. Approximately 25 people showed up for the meeting. Included in this 25 physicians and scientists were Dr Alexis Shelokov, Dr J. Gordon Parish and myself. [...] It was obvious that most of the assembly associated this epidemic disease with Epstein-Barr Virus and infectious mononucleosis, what the British refer to as glandular fever. It was immediately apparent that the consensus was going to be hijacked by this majority. Dr Shelokov and Dr Parish decided that this meeting was going nowhere and so decided to leave before it terminated. I followed them. [...] It was a wise choice for me in terms of acquiring knowledge but it was a bad choice for the three of us in that, had we stayed, we might have influenced the definition that was to appear in 1988.

On Simon Wessely's influence with the insurance industry:

Several years ago I was lecturing in British Columbia. Dr [Simon] Wessely was speaking and he gave a thoroughly enjoyable lecture on M.E. and CFS. He had the hundreds of staff physicians laughing themselves silly over the invented griefs of the M.E. and CFS patients who, according to Dr. Wessely had no physical illness what so ever but a lot of misguided imagination. I was appalled at his sheer effectiveness, the amazing control he had over the minds of the staid physicians. [...] His message was very clear and very simple. If I can paraphrase him: “M.E. and CFS are non-existent illnesses with no pathology what-so-ever. There is no reason why they all cannot return to work tomorrow." The next morning I left by car with my crew and arrived in Kelowna British Columbia that afternoon. We were staying at a patient’s house who had severe M.E. with dysautonomia and was for all purposes bedridden or house-bound most of the day. That morning she had received a phone call from her insurance company in Toronto. (Toronto is approximately 2742 miles from Vancouver). The insurance call was as follows and again I paraphrase: “Physicians at a University of British Columbia University have demonstrated that there is no pathological or physiological basis for M.E. or CFS. Your disability benefits have been stopped as of this month. You will have to pay back the funds we have sent you previously. We will contact you shortly with the exact amount you owe us”. That night I spoke to several patients or their spouses came up to me and told me they had received the same message. They were in understandable fear. [...] I understand that it was also the insurance industry who paid for Dr Wessely’s trip to Vancouver.

REFERENCES:
[1] Hyde, Byron (2019). The Return of Polio to the USA. Kindle.
[2] Hyde, Byron (May 12, 2006). "A new and simple definition of Myalgic Encephalomyelitis and a new simple definition of Chronic Fatigue Syndrome & A Brief History of Myalgic Encephalomyelitis and an Irreverent History of Chronic Fatigue Syndrome" (PDF). Irish ME Trust.
[3] https://www.goodreads.com/author/quotes/4785079.Byron_Hyde

 

[Rufous McKinney]

Cloud Atlas:

"I will not tolerate criminal abuse".

Repeat.

 

[Pyrrhus]

I found two more quotes:

On Edward Shorter's early attempts to label ME/CFS as hysteria:

In Great Britain, Professor Behan and many of the British physicians and researchers refer to M.E./CFS as Post-Viral Fatigue Syndrome, implying that this illness starts with and is the result of an infectious disease process. Yet, individuals such as historian Edward Shorter write books that equate M.E./CFS with hysteria, suggesting that this disease process is no more than a psychosomatic illness, a somatization, the modern equivalent of the self-flagellating hysterics of the middle ages. How can such a dichotomy exist amongst supposedly intelligent individuals? Dr. Shorter answered the question very well when I interviewed him on a Toronto television programme. "You have just written a book that discusses M.E./CFS patients. How many M.E./CFS patients have you actually seen?" I asked. "Why none, of course, I am an historian," he replied.

On Dr. Hyde's recent efforts to investigate the PACE trial:

I have written to Dr. Sharpe in order to go to his place of work in England and question him. He does not reply, or should I say: He doesn’t comply? I am informed that Dr. Sharpe works for the insurance industry. I cannot confirm or deny this statement because he won’t answer my communication.

...before we had David Tuller, we had Byron Hyde!

REFERENCES:
[1] Hyde, Byron (1992). The Clinical and Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue Syndrome. Nightingale Research Foundation.
[2] Hyde, Byron (in press, 2020). Understanding Myalgic Encephalomyelitis. Nightingale Research Foundation.

 

[Pyrrhus]

Oh, and I also came across this quote, which I found unusual as I had never heard of anyone investigating the history of M.E. this far back in history:

The origins of M.E. are ancient. A disease complex that may have been M.E. was described in 1900 B.C. and is partially preserved in a papyrus fragment from that date. It is obvious that the origins of this text were considerably older. A complete copy of that information exists in the papyrus Ebers and is dated circa 1400 B.C. Much of the mythology of M.E. was incorporated into western medicine at the time of Hippocrates in the fourth century B.C. and later taken up by Galen in the second century A.D. Galen, in fact, was one of the first to suggest that the disease complex known today as M.E. was related to physical disease and not hysteria. His view was not heeded.

REFERENCE:
[1] Hyde, Byron (1992). The Clinical and Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue Syndrome. Nightingale Research Foundation.

 

[Rufous McKinney]

Oh, and I also came across this quote, which I found unusual as I had never heard of anyone investigating the history of M.E. this far back in history:

that is interesting...I'd like to see what they actually described....wonder if this can be found.

 

[Rufous McKinney]

I had never heard of anyone investigating the history of M.E. this far back in history:

So I found this Lancet write up on Galen and his Patients- to be rather interesting!

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)61240-3/fulltext

And of all the unique views that must have existed in Roman times to account for why someone is sick, I found this one statement to be- well frankly QUITE a COINCIDENCE- symbolically speaking.

"Some problems were for Galen purely emotional in origin: one patient worried obsessively that the mythical Atlas would grow tired or sick and drop the sky, crushing the earth."

And our version of Atlas (atlas vertebrae is holding up our heads)...seems to be having ISSUES there- with this Atlas.....CCI, mechanical basis, yada yada. Our heads may drop from the sky, and crush the earth!

 

[Pyrrhus]

that is interesting...I'd like to see what they actually described....wonder if this can be found.

I looked into it briefly and I was surprised at how advanced ancient Egyptian medicine was. But translating their descriptions of disease into modern terms is not always possible.

If you're really adventurous, here are two translations of the Ebers Papyrus:

(1930) https://web.archive.org/web/2013092...go.edu/books/bryan_the_papyrus_ebers_1930.pdf

(1987) https://openlibrary.org/books/OL2177445M/The_Ebers_papyrus

 

[Rufous McKinney]

If you're really adventurous, here are two translations of the Ebers Papyrus:

I sped-read-thru- the 1930's document. Very cool Thats entirely fascinating reading!

Puzzled by milk of the sycamore....I must further determine what the heck is that.

 

[Dechi]

...before we had David Tuller, we had Byron Hyde!

Dr Hyde has done so much for ME patients all over the world, thank you for bringing up a little of the incredible knowledge he has of this disease !

 

[Pyrrhus]

For anyone who wants to learn more about Byron Hyde's work, here's a good page to check out:

https://me-pedia.org/wiki/Byron_Hyde

 

[Pyrrhus]

Interview with Dr. Byron Hyde:

 

[WantedAlive]

“Physicians at a University of British Columbia University have demonstrated that there is no pathological or physiological basis for M.E. or CFS. Your disability benefits have been stopped as of this month. You will have to pay back the funds we have sent you previously. We will contact you shortly with the exact amount you owe us”.

This is shocking, I had no idea he influenced so much distress on patients. Someone should've rounded up a class action lawsuit against Simon Wessely for the distress he caused. Not only would this have brought an investigation into what known biological abnormalities were known about at the time and swept under the carpet, but also had the likes of Wessely hauled over the hot coals. I guess its not too late, he should be shaking in his boots.

 

[lenora]

Galen was certainly a man ahead of his time...putting the patient first. Imagine a being a teen and knowing that's the average life span. Diseases were rife and it's amazing that any progress has been made when one considers the beginning of trying to help the ill.

Lake Tahoe....the epidemic that I was caught up in. Yes I'll readily agree that precious time and effort was spent on the name of this illness, although I always thought it was Dr. Peterson (?) who actually named it.

We've certainly seen this illness (post-viral something or other) cycle in and out of history over the years. Why we tolerate people who can't even produce research is confusing and stops worthwhile research into this problem. Yours, Lenora.

 

[halcyon]

Lake Tahoe....the epidemic that I was caught up in. Yes I'll readily agree that precious time and effort was spent on the name of this illness, although I always thought it was Dr. Peterson (?) who actually named it.

I had always heard that the colloquial term used locally for the disease, before it did the Chronic Epstein Barr virus syndrome -> CFIDS -> CFS shuffle over the coming years, was Raggedy Ann syndrome.

 

[lenora]

Hi @halcyon....Yes, the Raggedy Ann Syndrome was certainly used, as was the Yuppie Flu (that did great harm to anyone affected...and for that we can thank a well known magazine and the accompanying article. I do believe that was one of the reasons we weren't taken seriously in the beginning...The Yuppie Flu).

We had a lot of different names within a short period of time and that certainly didn't help us. Made us look like fools even. Yours, Lenora

 

[Pyrrhus]

Moderator note: 10 posts were moved to the following thread:

Any Ampligen updates?

 

[heapsreal]

This is shocking, I had no idea he influenced so much distress on patients. Someone should've rounded up a class action lawsuit against Simon Wessely for the distress he caused. Not only would this have brought an investigation into what known biological abnormalities were known about at the time and swept under the carpet, but also had the likes of Wessely hauled over the hot coals. I guess its not too late, he should be shaking in his boots.

Isn't it ridiculous that a psychologist can rule out neurological inflammation, immune dysfunction and chronic infections by talking to someone. I recall an article where someone mentioned the low nk function findings in mecfs, his reply was that its not important and to ignore this as it just prolongs the false illness beliefs.
Has he made any comments on Long Covid yet?

 

[lenora]

Hello @heapsreal.....I haven't read any comments about Long Haul Syndrome that are detrimental, but we're in the early days still.

I watched an interesting 20/20 review of an illness called P.A.N.D.A.S. that can affect a very small number of children a few days after taking an antibiotic to treat strep throat.

What was especially interesting about this is the no. of personality changes that affected these children...all were different and bizarre (to say the least). Doctors knew nothing about it, and yet it affected the blood barrier of the brain.....and only two pediatric neurologists in the U.S. recognize and treat it....with different drugs and outcomes.

One doctor in particular is very much against this diagnosis and feels that these children would have developed the same problems anyway.....things like tics, seizures, horrible personality changes, OCD....things of that nature.

I believe this presentation was made in 2018 and I'm sure you can find it on youtube. The interesting thing is that is causes brain inflammation which dovetails with many of our symptoms. The problem can still reoccur, which again is like ours. Any infection should be taken seriously if immediate changes occur. Yours, Lenora.

NOTE: @Pyrrhus, feel free to move this anywhere you have to in order to maintain the proper topic. Thx. L.

 

[woozy]

View attachment 44138
I thought I would start a thread to collect quotes from the life of Dr. Byron Hyde, who has had a front-row seat to some of the most important events that have occurred in the field of ME/CFS:

On the Akureyri outbreak:


On the Royal Free outbreak:


On McEvedy and Beard's paper calling the Royal Free outbreak "hysteria":


On the Incline Village outbreak:


On the CDC meeting that invented the term "Chronic Fatigue Syndrome":


On Simon Wessely's influence with the insurance industry:



REFERENCES:
[1] Hyde, Byron (2019). The Return of Polio to the USA. Kindle.
[2] Hyde, Byron (May 12, 2006). "A new and simple definition of Myalgic Encephalomyelitis and a new simple definition of Chronic Fatigue Syndrome & A Brief History of Myalgic Encephalomyelitis and an Irreverent History of Chronic Fatigue Syndrome" (PDF). Irish ME Trust.
[3] https://www.goodreads.com/author/quotes/4785079.Byron_Hyde

I had an email from Prof Simone Wessely and he says Byron is a nice chap but thinks he is wrong. LOL