M.E. Definition Booklet, September 2011, by Dr Byron Hyde (PDF format)
This document is an excellent and timely antidote to the scientifically unsupportable ICC.
This is the latest unhelpful CFS redefinition being endlessly promoted by 'ME/CFS' advocates.
Dr Hyde's new booklet is highly recommended by HFME.
A few quotes:
'At the first meeting on the 27th of October 2005, the Chairman
of the Joint Committee, Dr Ian Gibson, asked me to prepare a
report and definition that might assist the committee in its further
deliberations. The following are my original recommendation.
Dr Bruce Carruthers, who chaired the 2003 Canadian Clinical
Case Definition for M.E./CFS, was also present when I gave this
definition. I strongly disagreed with Dr Caruthers in the merging
the definitions of M.E. and CFS since on the basis of the physical
total body assessment of both M.E. and CFS patients; these two
names represent two entirely different spectrums of illnesses.
The present 2011 definition is confined to the defining of Myalgic
Encephalomyelitis (M.E.). The term CFS is mentioned from time
to time to clarify differences.
It is increasingly obvious that too much importance was being
placed upon the definitions of Chronic Fatigue Syndrome
(CFS), and not enough upon the actual disease, Myalgic
Encephalomyelitis (M.E.). These two illness spectrums are not
the same and should not be considered to be the same. Nor is
there any doubt in my mind that the various definitions of CFS
actively impede physicians’ ability to make a rapid and rational
diagnosis as well as a scientific confirmation of any testable
illness. Such is not true of M.E. where a rapid and rational
diagnosis can be made that can be confirmed by laboratory and
other technological testing.'
'In my 27-year investigation of M.E. and CFS patients, I can
state with clarity that there is less psychiatric disease among
M.E. or CFS patients than in the general public.'
'Garbage Bag Disease: Unfortunately, many physicians appear to be
using CFS as a convenient garbage bag disease, simply telling patients
whom they have no time to investigate, “Oh, you have Chronic Fatigue
Syndrome”. It is most unfortunate that the Americans, who have now
promoted the idea that CFS is the same as M.E., have only compounded
the disaster. Due to this garbage bag phenomena mentality many CFS
patients are never properly investigated for serious disease and most
CFS patients have significant and often times treatable pathologies.'
Click here to download a copy of Dr Hyde's 2011 slides from his Ottawa talk (Powerpoint format).
Click here to download a copy of Dr Hyde's 2011 slides from his Women's College talk (Powerpoint format).
Dr Hyde and his wife at a conference, 2011
(Photo courtesy of Yanna Vivant)
Click here to purchase Dr Hyde's latest book on M.E. on the Lulu website.
In 1984, Dr. Hyde began the full-time study of the disease process known as Myalgic Encephalomyelitis. He has worked exclusively with M.E. patients since 1985. In 1988, Dr. Hyde organized an association and founded The Nightingale Research Foundation, dedicated to the study of Myalgic Encephalomyelitis.
HFME press release: International M.E. expert disputes that 'CFS' XMRV retrovirus claim has relevance to M.E. patients, September 7th 2010.
The Nightingale Definition of Myalgic Encephalomyelitis (M.E.) by Dr Byron Hyde 2006
Since the Nightingale Research Foundation's publication in 1992 of its textbook, The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, there has been a tendency by some individuals and organizations to assume that M.E. and CFS are the same illness. Over the course of two International Association of Chronic Fatigue Syndrome (IACFS, formerly the American Association of CFS) conferences, there have been suggestions that the name CFS be changed to M.E., while retaining the CFS definitions as a basis for such change. This does not seem to me to be a useful initiative: it would simply add credence to the mistaken assumption that M.E. and CFS represent the same disease processes. They do not.
M.E. is a clearly defined disease process. CFS by definition has always been a syndrome
At one of the meetings held to determine the 1994 U.S. Centers for Disease Control and Prevention (CDC) definition of CFS, in response to my question from the floor, Dr. Keiji Fukuda stated that numerous M.E. epidemics he cited the Los Angeles County Hospital epidemic of 1934, the Akureyri outbreak of 1947-48 and the 1955-58 Royal Free Hospitals epidemics-- were definitely not CFS epidemics. Dr. Fukuda was correct.
The Psychiatric Label
Unfortunately many physicians and some senior persons in governments, including Great Britain, Norway and to a lesser degree the USA and Canada treat CFS as a psychiatric illness. This view has been arrived by some physician's readings of the CFS definitions from CDC. Indeed, despite clear signals in the 1994 CDC definition that CFS is not a psychiatric disease, each of the CDC definitions and their addenda referring to CFS remain open to interpretation as a psychiatric rather than a physical illness. This is not a view to which I subscribe. It is the CFS definitions themselves that give rise to this inaccuracy. Consider the following:
(a) What other physical disease definitions essentially state that if you discover the patient has any physical injury or disease, then the patient does not have the illness CFS? In other words if you have CFS then it does not result in or cause any major illness. What else could CFS then be but any number of various psychiatric, social, hysterical or mendacious phenomena?
(b) The various CDC administrations dealing with the subject have clearly stated that CFS is a physical, not a psychiatric disease. However, is there any other definition of any physical disease that is not provable by scientific and clinical tests? Only psychiatric diseases are not clearly verifiable by physical and technological tests.
(c) What other physical disease definition requires a six month waiting period before the illness can be diagnosed? Any physician knows that to treat a disease adequately you have to be able to define the disease at its onset and treat it immediately in order to prevent chronic complications from arising. There are simply no other disease definitions that have ever been assembled similar to the CFS definitions.
I believe it essential to define clearly Myalgic Encephalomyelitis. That is what the Nightingale definition of M.E. sets out to do
*HIGHLY RECOMMENDED* This paper by Dr Hyde, and the two other papers below are probably the three most important papers on M.E. available. They are absolutely essential reading for everyone with any interest in Myalgic Encephalomyelitis (or 'CFS').
A New and Simple Definition of Myalgic Encephalomyelitis and a New Simple Definition of Chronic Fatigue Syndrome & A Brief History of Myalgic Encephalomyelitis & An Irreverent History of Chronic Fatigue Syndrome by Dr Byron Hyde MD 2006
'Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis (M.E.). It is not. Though CFS is based upon a typical M.E. epidemic, in my opinion it has always been a confused and distorted view of reality. The invention of Chronic Fatigue Syndrome has to be one of the most curious cases of inventive American scientific imperialism that one could imagine. It is my opinion that the CDC 1988 definition of CFS describes a non-existing chimera based upon inexperienced individuals who lack any historical knowledge of this disease process. The CDC definition is not a disease process.'
The Complexities of Diagnosis by Dr Byron Hyde 2003
(Taken from: Handbook of Chronic Fatigue Syndrome by Leonard A. Jason, Patricia A. Fennell and Renée R. Taylor)
The physician and patient alike should remember that CFS is not a disease. It is a chronic fatigue state as described in four definitions starting with that published by Dr. Gary Holmes of the CDC and others in 1988 (Holmes, Kaplan, Gantz, et al., 1988; Holmes, Kaplan, Schonberger, et .al., 1988). The definition created by Lloyd, Hickie, Boughton, Spencer, and Wakefield (1990) is also widely used in Australia. There are two subsequent definitions. The Oxford definition of 1991 (Sharpe et al., 1991) and the 1994 NIH/CDC definitions (Fukuda et al., 1994) are basically, with a few modifications, copies of the first definition. Where the one essential characteristic of ME is acquired CNS dysfunction, that of CFS is primarily chronic fatigue. By assumption, this CFS fatigue can be acquired abruptly or gradually. Secondary symptoms and signs were then added to this primary fatigue anomaly. None of these secondary symptoms is individually essential for the definition and few are scientifically testable. Despite the list of signs and symptoms and test exclusions in these definitions, patients who conform to any of these four CFS definitions may still have an undiagnosed major illness, certain of which are potentially treatable.
Although the authors of these definitions have repeatedly stated that they are defining a syndrome and not a specific disease, patient, physician, and insurer alike have tended to treat this syndrome as a specific disease or illness, with at times a potentially specific treatment and a specific outcome. This has resulted in much confusion, and many physicians are now diagnosing CFS as though it were a specific illness. They either refer the patient to pharmaceutical, psychiatric, psychological, or social treatment or simply say, "You have CFS and nothing can be done about it."
[On the differences between ME and CFS]
Understanding M.E. and CFS by Dr. Byron Hyde, 2006
'The physician and patient alike should remember that CFS is not a disease. It is a chronic fatigue state where the one essential characteristic of M.E. is acquired Central Nervous System (CNS) dysfunction, that of CFS is primarily chronic fatigue.'
Abstract : At the 1998 M.E. /CFS conference in Australia, both Myalgic Encephalomyelitis and Chronic Fatigue Syndrome were used to describe a chronic illness. This paper is a discussion on the similarities and differences in these two terms that may lead to scientific difficulties. The author suggests that the definitional criteria and epidemic history of Myalgic Encephalomyelitis (M.E.) and the inclusion criteria are significantly different from the CDC definitions and history. The three typical phases of M.E. are discussed. A brief review of some of the known deaths in phase 2 of M.E. are also mentioned.
Three Babuska Clusters of Enteroviral-Associated Myalgic Encephalomyelitis by Byron Hyde MD
Although physicians associated with Nightingale have been studying both M.E. and CFS patients since 1984, it was only in 1995 that we began to include in the investigation of each new Nightingale M.E. patient, an evaluation by PCR for chronic persisting enteroviral infection. The material employed was frozen blood serum that was evaluated by the research team of the viral laboratory of Ruchill Hospital in Glasgow. These patients were re-evaluated approximately once or twice a year for a period of three years. Blood serum from control patients of similar age and sex were submitted with serum from M.E. patients. Blood from other patients with various autoimmune diseases or neurological illnesses were also submitted along with our samples. The names were changed in repeat samples. The serum received at Ruchill Hospital was divided into reserves and two blinded samples of this serum were investigated by PCR in different laboratories. Only when each sample source was found to be positive for the same enteroviral code was the serum accepted as having a specific circulating enterovirus.
[This article is now unavailable]
Clinical Features of M.E./CFS by Byron Hyde MD.
I will call for the recognition of M.E. as a more distinct clinical entity than CFS. I will also note that CDC as described by the CDC and the UK and Australian groups is actually a more diverse disease spectrum associated by a common group of symptoms but often with vastly different etiology, physical findings and clinical outcome.
[This article is now unavailable]
Information on Hepatitis B Immunization by Byron Hyde MD
The vast majority of patients who receive Hepatitis B immunization have no negative side effects. However, a large number of these patients do not seroconvert after three inoculations with the hepatitis immunization. In simple terms, these individuals are not protected from wild hepatitis B but think they are. To my knowledge no study has been published giving the percentage of seroconversion failure
[This article is now unavailable]
Summary notes and post request from Lajla Mark & LK Woodruff. NEW from the pre-eminent ME authority and author of 'the Bible', the book: "The Clinical and Scientific Basis of Myalgic Encephalomyelitis" - 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, 1992. Published by Nightingale Research Foundation simultaneously in Canada and the USA, 1992
MINUTES OF THE GROUP ON SCIENTIFIC RESEARCH INTO M.E. HELD 3:30PM - 5:00PM ON WEDNESDAY THE 10TH OF MAY, 2006 AT THE HOUSE OF COMMONS
NOTE: Dr. Byron Hyde's full Oral Hearing presentation can be viewed at: http://www.erythos.com/gibsonenquiry/Docs/Oral2Minutes.doc
Presentation 2: The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
- Responder, Dr Byron Hyde, Chairman of the Nightingale Research Foundation.
Dr. Byron Hyde opened by illustrating the medical history of the illness and the terrible problems patients have faced with the various definitions. In his view, the GDG is currently suffering because of these problems. He noted that this situation might benefit from a 'physiologist', who could better understand and track the physical aspects of the condition. However, Dr. Hyde went on to add that there are few good physiologists who do not work for the pharmaceutical industry, which causes a conflict of interest.
He illustrated the hands-on experience of several physicians in the UK, which could be of extreme benefit in looking at the illness. He further pointed out that the UK has the best technologists and access to both PEP and SPECT scanners, to aid in diagnosing ME. Dr Hyde specifically referred to 'world class' research being undertaken in Perth on the illness.
In reference to the GDG, Dr. Hyde believes an Ombudsman could form a greater understanding of the actions of the private insurance industry in relation to ME/CFS - a problem area that he believes is too often overlooked.
The subject is broad and the publics' and even physicians' understanding of it is still very limited. Dr. Hyde highlighted that he, too, felt he was part of the problem regarding names, terms and definitions - when he put the terms ME and CFS together in his (1992) textbook.
Regarding the illness ME: According to Dr. Hyde, the usual incubation period of the triggering illness is 4-7 days. He further explained that the second and third phases of ME ~differ~ from the onset illness. He explained that these phases usually become apparent within 1-4 weeks after the initial infectious triggering illness.
The illness seems to have a common acute onset of symptoms that include a change in brain function and pain often accompanied with headaches and muscle weakness. The sufferer can also show cognitive and emotional symptoms such as memory dysfunction and anxiety, which are made worse by physical, sensory, environmental, emotional, social or economic stresses.
Lord Turnberg asked how Dr. Hyde knew that there was a 4-7 days incubation period of the triggering illness. In response. Dr. Hyde referred him to the published research he has authored.
Dr. Hyde highlighted that ME, in his opinion, is a type of epidemic. He stated that this was first documented in Los Angeles in 1934, and that there have been over 60 similar, but often less known, epidemics documented in the United States, New Zealand, Iceland and Greece.
Dr. Hyde said that his research of acute sufferers has found a virus that resembles in many ways a Polio virus, certainly in the same family. He also illustrated that in the past epidemics of ME have taken place concurrently with Polio epidemics.
He further explained how in 1994 frozen blood serum from both ME and CFS patients (who had approached Nightingale) was evaluated by the research team of the viral laboratory of Ruchill Hospital in Glasgow for chronic persisting enteroviral infection. Follow-up assessments of these patients were conducted one or two times a year, for three years.
The research team looked at a total of 100 cases. Of this group, approximately 40 were acute sufferers. Of those 40 sufferers who had acute onset, only 10 people were identified as having a variant of ECHo 25. In 80 of the group of 100 sufferers tested there was no evidence of a viral presence. Patients with a positive enterovirus confirmation had their serum resubmitted over a period of three years, when possible.
Ian Gibson noted that many have jumped on the viral cause in recent years, but asked how it was that Dr. Hyde was sure that what he was seeing was not association, but actual cause.
In response, Dr. Hyde noted that to, ensure the accuracy of their work, blood serum from control patients was also included from patients of similar age and social group, as well as those with autoimmune diseases and neurological illness. Of the 10 people for whom it was established had a viral infection, this group was followed closely for a five-year period before the group's research work was closed.
With regard to the definition of ME, Dr. Hyde noted that the Centers for Disease Control (CDC) had labelled the illness Chronic Fatigue Syndrome, which refers to the Fukada, et al, criteria for CFS. Dr. Hyde illustrated that given the research he has outlined:
- ME and CFS are not the same illness. And
- In his opinion, CFS in reality is any chronic disease causing fatigue.
Dr. Hyde associated the huge difficulties in looking at the viral nature of ME as similar to the problems faced in finding the Polio virus in living people. However, he stressed that with PCR today, we can overcome these problems that previously were impossible to overcome.
He also stressed the importance of work being undertaken into the physical aspects of ME, in Scotland, and as opposed to that being done in the United States, and previous work undertaken in Oxford. Dr. Hyde based the shape of work in the UK in defining ME as biomedical, versus the USA efforts in looking at a psychiatric or psychological model. In his opinion, the Oxford and CDC (Fukada, et al) criterias are terrible.
Lord Turnberg asked what treatment protocols Byron Hyde would prefer to see in place as to those currently being developed or used. In response, Dr.Hyde said that it is vital that ~graded onset versus acute onset~~, as well as clusters, be looked at as separate groups. He pointed to the need for full blood tests of patients to be taken. There also needs to be the full use of the current technology and technologists available to ~separate~ ME and CFS patients, as again:
CFS is not ME.
Further, Dr. Hyde illustrated the importance of isolating subgroups in treatment where brain dysfunction affects adrenals. He pointed to the dangers of treatments such as CBT and GET with regard to this group, with exercise/exertion worsening their condition. He finds the work at Dundee is very interesting in this respect.
The Countess of Mar asked whether Dr. Hyde meant ME Research UK (formerly MERGE) and the current work at Dundee University. He confirmed this.
"We are finding that first, about 25% of patients have a Polio-like virus and second, you can measure all of them using a SPECT scan showing brain dysfunction in different parts of the brain. You can actually look at the functioning of the individual brain cells, and in groups, using this equipment. Unless we have confirmation from a SPECT scan - it is not ME."
Richard Taylor noted that this was incredibly important as what Dr. Hyde was saying is:
that there is an effective test to undertake that can confirm whether or not people have ME.
Lord Turnberg noted that by using this method, almost all of the patients tested by Dr. Hyde will have what he terms CFS, and not ME, and asked what would happen to them.
He also asked if it is possible and independently verifiable that this was something Dr. Hyde believed could be developed into a test which could be nationally implemented. Dr. Hyde replied that his methods were radical, however there was no doubt in his mind that you could take a group of patients and perform total cardiac, brain & ultra violet scans - and separate those suffering from ME from those with CFS. He noted the comprehensive nature of his testing methods and his convictions. He explained how his first visit with a patient, as part of the diagnosis process, is for one day and a half (versus less than a half an hour with most consulting Dr.s). This is then followed by an extended 18-month period, during which time a SPECT scan and other testings are done.
He additionally noted evidence that, of 240 cases looked at, 10 cases of thyroid cancers have been identified. [This compares to an average rate of 5 per 100,000 people.] All found thyroid complications were type 3 (of 1-4) and he pointed to a huge group he is finding with a volume of thyroid of 13-23 cubic.
Richard Taylor and Ian Gibson both requested that Byron Hyde send more published information on this and other illustrations of his diagnosis and testing procedures.
The Grub Street Interview Dr. Byron Hyde and the Nightingale Foundation by Melissa Yue (Introduction by Stacey Chillemi)
This interview is a real mixed bag. The introduction is terrible. Beyond terrible. Supposedly the aim of the article is to bust some of the most harmful 'CFS' myths and myths about M.E. and 'CFS' being the same yet the introduction especially, is pure 'CFS' drivel that could have come directly from the CDC. In fact, some of it DID come direct from the CDC!
It is extremely ignorant and offensive that M.E. is referred to as being merely one of the illnesses that is similar to 'CFS.' This statement is ridicolous. The interviewers need very much to do some basic M.E. research, including reading some of the papers produced by Dr Hyde himself. This low quality level of accompanying information is unacceptable, particularly when linked with Dr Hyde.
On the positive side, the way Dr Hyde expresses his love and admiration for his children is wonderful, and says so much about the kind of man he is. We need more like him in the field of M.E., and also just generally out in the world. More people should be as gutsy, compassionate, ethical and uncompromising on the facts.
The Clinical and Scientific Basis of Myalgic Encephalomyelitis details of the book by Dr Byron Hyde
See below for further details.
The Clinical and Scientific Basis of Myalgic Encephalomyelitis Edited by Dr Byron Hyde, Nightingale Research Foundation, Ottawa, Canada
This book provides, in one superb 75-chapter source, an up-to-date, comprehensive account of current knowledge concerning the history, epidemiology, children with M.E., investigation, virology, immunology, muscle pathology, host response, food intolerance, brain mapping, neurophysiology, neuropsychology, psychiatry, sleep dysfunction, fibromyalgia syndrome, treatment and management.
This is an essential reference book for medical, government and public library reference rooms. This text is a unique vehicle for researchers, physicians and other health education and government officials, and is easily understandable by the general public interested in M.E.
All funds from this text will be used both to promote research and to assist in greater understanding of M.E, and a charitable donation tax receipt will accompany the book.
See the Review of this book for more information and for purchasing details.
If you buy only one M.E. book make it this one!
This book is essential reading for doctors and patients alike, and those interested in M.E. as well as those interested in 'CFS' or that have been misdiagnosed as 'CFS.'
(As this book explains, there is no such distinct disease as 'CFS' - and every diagnosis of 'CFS' is a MISdiagnosis.)
The Nightingale Definition of Myalgic Encephalomyelitis paper in particular cannot be recommended highly enough.
Finally this is a modern and TESTABLE definition of Myalgic Encephalomyelitis, created by the world's leading and most experienced M.E. expert, Dr Byron Hyde. This is NOT a redefinition of CFS but is instead a pure M.E. definition.
It draws on the long history of M.E., collates the evidence from each of the world's leading M.E. experts (past and present) and combines this with details of the most modern medical tests. This definition also rightly gives no importance at all to the bogus notion of mere `fatigue' having any importance in the diagnosis/definition - unlike each of the `CFS' definitions, including unfortunately the Canadian `ME/CFS' definition which just mixes in a few M.E. facts with what is still primarily a `CFS' redefinition.
'The Complexities of Diagnosis' is also very, very good overall and is also recommended.
Buy this book, and an extra copy for your doctor.
We need a hundred Dr Hyde's! Things are getting worse and worse for M.E. patients worldwide, sadly.
The second edition of this book is now available from Lulu.
Note that the book Missed Diagnoses: Myalgic Encephalomyelitis & Chronic Fatigue Syndrome contains a copy of The Complexities of Diagnosis plus The Nightingale Definition of M.E. and the second edition also contains a further new paper on M.E. (a chapter from a recent book)