The Hummingbirds' Foundation for M.E.

The Hummingbirds' Foundation for M.E. (HFME) is fighting for the recognition of M.E.,
and for patients to be accorded the same basic human rights as those with similar
disabling and potentially fatal neurological diseases such as M.S.

Problems with the use of 'ME/CFS' by M.E. advocates

Problems with the use of 'ME/CFS' by M.E. advocates This paper looks at why it is not in our best interests as M.E. patients and advocates to use or support the use of 'ME/CFS.'

See the Downloads section below to download this paper in Word or PDF format. A summarised 3 page version of this text is also available to be donloaded.

A 'Relevant quotes by other M.E. advocates and experts' section is also available below.

Problems with the use of 'ME/CFS' by M.E. advocates

Copyright © Jodi Bassett March 2008. This version updated December 2011. From www.hfme.org                                                 

Myalgic Encephalomyelitis (M.E.) is a debilitating neurological disease. In recognition of the overwhelming amount of compelling scientific evidence available, M.E. was formally classified as an organic neurological (CNS) disease in the World Health Organisation's International Classification of Diseases (ICD) in 1969. M.E. is classified in the current WHO ICD with the neurological code G.93.3.

M.E. has several unique features but is also similar in a number of significant ways to diseases such as multiple sclerosis, Lupus and poliomyelitis (polio). In some cases M.E. is fatal.

M.E. is a distinct, acute onset, organic, scientifically measurable and testable neurological disease. 'CFS' in contrast, is not a distinct disease. The 'CFS' definitions describe no distinct patient group, so a diagnosis of 'CFS' is merely a wastebasket diagnosis; it simply means that the patient has a gradual onset fatigue syndrome which is sometimes due to a missed major psychological or non-psychological disease. Every diagnosis of 'CFS' is a misdiagnosis. 'CFS' doesn't exist.

The use of the mixed term 'ME/CFS' by some former M.E. advocates (and others) makes no sense at all, but is unfortunately becoming very common.

Many of those M.E. advocates who use the term 'ME/CFS' agree that the distinct neurological disease M.E. and the artificial disease category of 'CFS' are NOT the same. But they also say things like; 'ME/CFS is a serious disorder which occurs in epidemic and sporadic forms, is initiated by a virus (most likely an enterovirus), difficult to diagnose, and is defined by severe fatigue or malaise...' which incorrectly implies that the name and definition of 'CFS' is synonymous with authentic M.E. and lumps together defining elements of these two very different entities.

'ME/CFS' advocates often scorn the Wessely school's use of the term 'CFS/ME' and complain that 'ME/CFS' and 'CFS/ME' are not the same thing. Sometimes the term M.E. is put into brackets next to the term 'CFS' which implies again that 'CFS' is just another name for M.E. and that research done under the name and definition of 'CFS' is relevant to M.E. patients.

If you read an article that contained such contradictory uses of terminology about any other illness (for example a migraine advocate who wanted to point out that migraines and headaches were not the same but used the term 'migraines/headaches' throughout) what would you make of it? You'd probably think that the two entities really were just the same and perhaps that one patient group merely preferred a different or more serious sounding term. None of the points being made about how different the two entities were would sink in at all. How could they?

You can't argue that M.E. and 'CFS' are not the same, and then use the term 'ME/CFS' (or 'ME-CFS' or 'CFS/ME') and expect to be taken seriously. Using these terms contradicts whatever else you say about M.E. and 'CFS' not being the same.

That 'ME/CFS' is confusing and illogical is only the start of the problem however. Why are so many former M.E. advocates starting to support 'ME/CFS'? Why have some advocates and advocacy and research groups who fought so hard against these mixed terms initially, now started using them; when all the problems with the use of these terms remain unchanged since they were first proposed? Why are so many of us in the M.E. community accepting this illogical use of terminology by those meant to be resolving these very problems?

 

Why is 'ME/CFS' being used so much more often?

Sometimes it is just about playing both sides and keeping the maximum number of people happy. These mixed terms are accepted by much propaganda supporting 'CFS' researchers and advocacy groups, by people misdiagnosed with 'CFS' who don't have M.E., and by some genuine neurological M.E. patients. So supporting these vague mixed terms makes an advocate or advocate group popular with the largest possible number of patients and patient groups (and funding bodies). But is that really a good enough reason to work against the best interests of the patient groups they claim to be advocating for? What about putting science, ethics and patient welfare first?

None of the justifications made by individual advocates or advocacy groups for using the term 'ME/CFS' hold up. These are some of the most common;

1. The claim that we have to use the term 'CFS' (and 'ME/CFS') because some of the research which may possibly involve a number of M.E. patients has been done under the name 'CFS', is unreasonable.

Of course we should reference such research if it is relevant, but this could very easily be done by writing a short explanation of the confusion between M.E. and 'CFS' and why a small amount of the research done under the name 'CFS' does relate to some extent M.E. and including this in each article or piece of research. This is the type of basic information that, even without the terminology issues, we need to prioritise anyway.

2. The claim that the term 'ME/CFS' enables those M.E. patients misdiagnosed with 'CFS' to be able to find information about M.E. doesn't hold up to scrutiny.

Again, this is an important function of advocacy groups, but it is misleading to suggest that this can only be done by compromising the terminology we use. It could be done so simply with a short explanation at the top of the page where the term M.E. is first used and included in full at the bottom of the page. This way you would avoid confusing patients and reinforcing the myths about M.E. and about 'CFS.'

3. The claim that 'ME/CFS' is a temporary term, that eventually the 'CFS' part will be dropped, and that our only chance for change is gradual change, is false.

This strategy has been tried for the last 20 years and it has failed. Trusting that if we compromise the terminology now we will be rewarded ultimately is just fanciful.

4. The claim that we have to use this term because it is used in the 2003 Canadian 'ME/CFS' definition is also flawed.

Specific parts of that paper are relevant to M.E. to some extent and may be worth supporting, but this is not a pure M.E. definition. It is at best a mix of M.E. and 'CFS' and does not select a 100% M.E. patient group. As with the updated version of this criteria known as the ICC, for each good part of the Canadian paper there are also several biased and scientifically questionable parts. Overall both of these documents strongly suggest that M.E. and 'CFS' are the same and that M.E. is defined by 'medically unexplained fatigue.' They reinforce some of the most harmful myths about M.E. Parts of the Canadian 'ME/CFS' definition may deserve our qualified support, but it certainly does not justify the widespread use of the term 'ME/CFS' by M.E. advocates.

 

'ME/CFS' just doesn't make sense. For every problem 'ME/CFS' supposedly solves, it creates many more.

 

So who does benefit from Myalgic Encephalomyelitis being mixed with 'CFS'?

That is the real question we should all be asking. The answer is that powerful financial vested interest groups such as the medical insurance industry, the vaccine industry and the government are saving themselves millions of dollars through this obfuscation. (See the paper; 'Who benefits from 'CFS' and 'ME/CFS'?' for more information). The groups that benefit from 'ME/CFS' are the same groups that benefited from the creation of 'CFS.'

Many of the most harmful government reports in the UK, Australia and the Netherlands, which talk about patients as mildly ill malingerers who could easily recover from their 'fatigue' often use terms such as 'CFS/ME' or 'ME/CFS' in the titles and throughout and very often mix in some of the facts about M.E. with bogus information about 'CFS'. This means all the important conclusions about aetiology, psychological status, improvement of symptoms, response to treatments and recovery rates are drawn largely or entirely from non-M.E. patient groups.

The terms 'ME/CFS' and 'CFS/ME' let these groups have it both ways. They can continue with their unscientific and unethical 'CFS' obfuscation agenda, and they get to do so with far less opposition from the patients they may be harming.

  • Because a small proportion of the legitimate symptoms of M.E. are often listed in papers and studies, along with information on 'CFS,' it is easy for these groups to argue that the entire paper/study relates to M.E. as well as 'CFS.' This perpetuates the false impression that M.E. can be improved by exercise and that it is caused by stress, etc., conclusions which could never be reached if there were actually M.E. patients involved in the study.
  • So long as a study uses the term 'ME/CFS' and talks about physical findings, it is accepted by many in the M.E. community as involving M.E. patients, even if patients have been selected merely because they qualify for a 'CFS' diagnosis (i.e. on the basis of 'fatigue').
  • The fact that a small part of a paper relates to M.E. is enough to mislead some sufferers and advocates into thinking that at least it mentions some of the real facts of M.E. so it's a step in the right direction, so they offer less opposition for a mixed M.E. and 'CFS' paper than they would for an entirely 'CFS' based one. This is despite the fact that the bottom line of these papers remains unchanged and that yet again the result will be mistreatment and neglect for M.E. patients.

This is why articles and studies which mix together facts about M.E. and 'CFS' are potentially more dangerous than pure 'CFS' ones. Not only will 'ME/CFS' not help, it can make things so much worse for us all. It will make it harder than ever to separate M.E. from the vague mess of 'CFS' and for those diagnosed with 'CFS' to be given a correct diagnosis and appropriate treatment.

The 'ME/CFS' concept is confusing, illogical, and reinforces the same misinformation at the root of our problem: that M.E. and 'CFS' are the same. It benefits the same vested interest groups which benefit from the term 'CFS'. It suggests that 'CFS' is a disease and validates research in that field at the expense of M.E. Ultimately, it lessens the impact of legitimate facts about M.E. and cuts it off from its 80 year history, previous case studies, research and definition, and its correct WHO classification. Likewise, it harms those diagnosed with 'CFS' who don't have M.E. and cannot benefit from M.E. research.

 

What can Myalgic Encephalomyelitis advocates learn from how other diseases have gained recognition?

At one time, AIDS was called "Gay Related Immune Deficiency Syndrome' or GRIDS. Using the term 'ME/CFS' now is as short-sighted as it would have been for HIV activists to call AIDS 'AIDS/GRIDS.' Or if multiple sclerosis advocates had pushed for the acceptance of 'MS/Hysterical paralysis' instead of just MS, or if Down syndrome advocates had accepted a term like 'Down syndrome/Mongoloidism' instead of fighting to have the offensive term 'Mongoloid' dropped completely. Pushing now for the so-called 'compromise' of 'ME/CFS' is just as unwise, and even more counter-productive.

This is because our problem isn't just that the term 'CFS' is offensive and inaccurate. The real issue is that the term 'CFS' is inextricably linked with definitions which are in no way M.E. definitions. They define a completely different, unrelated, vague and heterogeneous patient group.

If advocacy groups for illness like AIDS, M.S. and Down's Syndrome had not chosen to fight hard for what was scientifically correct, instead of settling for an inaccurate hybrid of terms, who knows how much this may have held patient groups back, or for how many years or decades positive outcomes may have been delayed because of it.

Successful patient advocacy groups/campaigns have achieved success in the past through a determination to fight for what is scientifically and ethically right, refusing to compromise themselves and their integrity. We have to do the same if we want the same type of success.

 

This isn't just about terminology, it is about definitions

The terminology is often used interchangeably, incorrectly and confusingly. But the definitions of M.E. and 'CFS' are very different and distinct, and it is the definitions of each of these terms which is of primary importance.

It should not be assumed that when the term 'ME/CFS' is used, it refers to authentic Myalgic Encephalomyelitis as per renowned M.E. researchers A. Melvin Ramsay, Elizabeth Dowsett and Byron Hyde, etc. and that it is the long history of M.E. and M.E. outbreaks that is being referred to. This is most often not the case. Nor should it be assumed that 'ME/CFS' research involves M.E. patients. People with a vast array of authentic but unrelated (non-M.E.) physical illnesses are all commonly misdiagnosed with 'CFS.

When people use the term 'ME/CFS' it should set alarm bells ringing for you. Be very wary that they haven't also compromised the definition of M.E., confused the known scientific facts about M.E., and included people with Fibromyalgia, various post-viral fatigue syndromes or Lyme disease as 'ME/CFS' patients. Most often when the term 'ME/CFS' is used, the text refers to a bizarre mix of facts relating to both M.E. and 'CFS', or instead purely facts relating to any of the various bogus 'CFS' definitions.

Information which uses the term M.E. but which ignores the known scientific facts on M.E. and instead embraces descriptions and definitions of 'CFS' or 'ME/CFS' should also set your alarm bells ringing. The term M.E. is of course only correct when it is applied to facts relating to an M.E. patient group. (The Canadian ME/CFS Criteria and the updated ICC are not definitions of M.E. but redefinitions of 'CFS.' )

 

Conclusion

The term and concept of 'ME/CFS' just doesn't make sense. Why weaken our position so much for no good reason? - Make no mistake, the facts about M.E., and its history, are a far more compelling true story than any wishy-washy, tales advocating the false disease category of 'CFS' or 'ME/CFS.'

We must be far more critical about the information we accept as scientifically sound, relevant to us, and in our best interests. The fact that an article might mention some facts about M.E. along with a lot of 'CFS' propaganda, or use the term 'ME/CFS' or 'CFS/ME' is not good enough. It isn't even a step in the right direction. It's a step backwards.

Many supporters of 'ME/CFS' have a tie to the vested interest groups involved, while others are clearly motivated by their own personal interests, or by concerns over funding from financial stakeholders. Undoubtedly, some M.E. patients are simply too ill and disabled to do more than very basic reading or to engage in critical thinking and so have been persuaded to support 'ME/CFS' by other advocates they've trusted to steer them in the right direction.

You can help those with M.E. (and those diagnosed with CFS that do not have M.E.) by thinking about it logically. Don't use 'ME/CFS' and mix the M.E. and 'CFS' definitions just because others do. If you open your mind and look at the problem logically you can help our fight for justice and recognition.

It is time that we fought for the abandonment of the disease category of 'CFS' and the recognition of authentic Myalgic Encephalomyelitis in name, definition and World Health Organisation classification, without compromise.

 

More information:

 

Acknowledgements

Thank you to all those M.E. advocates who offered valuable criticism and suggestions as I was writing this paper. In particular, a big thank you to Lesley Ben. Thank you to Emma Searle for editing this paper.

Relevant video: The 'ME/CFS' concept is unhelpful

Relevant video: What is M.E.? (1 page version)

Relevant quotes

‘Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis (M.E.). It is not. The CDC definition is not a disease process. It is (a) a partial mix of infectious mononucleosis /glandular fever, (b) a mix of some of the least important aspects of M.E. and (c) what amounts to a possibly unintended psychiatric slant to an epidemic and endemic disease process of major importance.’ Dr Byron Hyde 2006

‘Any disease process that has major criteria, of excluding all other disease processes, is simply not a disease at all; it doesn't exist. The CFS definitions were written in such a manner that CFS becomes like a desert mirage: The closer you approach, the faster it disappears.’ Dr Byron Hyde 2006

‘Thirty years ago when a patient presented to a hospital clinic with unexplained fatigue, any medical school physician would search for an occult malignancy, cardiac or other organ disease, or chronic infection. The concept that there is an entity called chronic fatigue syndrome has totally altered that essential medical guideline. Patients are now being diagnosed with CFS as though it were a disease. It is not. It is a patchwork of symptoms that could mean anything’ Dr Byron Hyde 2003

The current confusion over the name in the US is that CFS, the fabricated condition that somehow became officially synonymous with the real disease Myalgic Encephalomyelitis, is to be cunningly renamed Myalgic Encephalopathy. The problem is that both names share the initials ME, and since Myalgic Encephalopathy will retain the terribly misleading CFS criteria this name is nothing more than a clever diversion to draw our attention away from the real issues. John Anderson, M.E. advocate

The entire concept of a "New Name" is wrong. There is no need for a "new name" for an "old falsehood". There already IS a correct name, Myalgic Encephalomyelitis with a correct ICD code. We need the correct name and the proper definition, not a new face on an old lie that still functions to obscure and deny the reality of Myalgic Encephalomyelitis. We need to educate ourselves, families, doctors, social service people, politicians, journalists, etc about the existing disease Myalgic Encephalomyelitis. Not fall into yet another ploy of those who have hidden the truth. M. Beck, M.E. patient since 1983

Now this question may sound very odd, but consider: How would you Disguise a Disease ? I doubt there could be too many ways . . . But if that were your intent, Let's see, where would you start -- Camouflage! First declare it is a New illness. (Brilliant!) Declare that there is no epidemic! (Tremendous) Spread the word it is not serious. (Spectacular!!!) Create a smokescreen by using a vague definition so that you can mix in many non-cases, and thus claim it is very hard to identify; then… Cover your tracks! Give the Disguised Disease a variety of New names. (Yes, a trivial absurd name, splendid!) Disassociate it from its previous established name, research, case studies, descriptions and diagnostic ICD classification. (Fantastic) Lets see what else could we do to disguise a disease… Create Confusion! We could tell Drs that this disease is "mysterious" and that there is no need to investigate, "Don't do any testing" (you won't find anything) It’s a Mystery... Cesar Quintero, M.E. advocate

A recent editorial states: "'ME' has historically been used to describe 'Myalgic Encephalomyelitis' (nervous system inflammation involving muscle pain) - a term that does not accurately describe the disease process in all patients." That misses the crucial point that they have been studying broadly defined CFS patients and not strictly defined ME patients - this false assertion can only be a calculated gamble that patients will fall for such propaganda!

The experts who first named the disease Myalgic Encephalomyelitis some 50 years ago did so based on all the evidence at the time including autopsies which demonstrated inflammation of the spinal cord, and this has been confirmed again as recently as 2006 in a horrifying case of medical neglect and psychiatric abuse in the UK, while in the US an autopsy on a young man revealed viral inflammation of the heart! How many more lives will it take? Why do politics dictate medical inquiry?

ME does not need renaming - it must be reinstated as the only medically justified term for the disease at this time - and CFS must be abandoned if respect and funding are the priority. Myalgic Encephalomyelitis has officially existed for 50 years and together with its previous name Atypical Poliomyelitis provides a continuous historical record of the illness spanning a staggering 70 year period. The only other justified change at this point would be to remove the word "benign" from the WHO-ICD, and the public rightfully alerted to this most pertinent fact. John Anderson, M.E. advocate

If these so-called ME organisations lack unity and agreement on so many of the basic facts including the historically correct name, how can we expect governments to take them seriously? Too many of these groups are operating under various names such as CFS, CFIDS, or CFS/ME [or ME/CFS] and using the outdated and unscientific Fukuda et al definitions and varying descriptions of the CFS invention that do not describe the serious neurological and multiple system disease ME, which clearly is a notifiable pandemic.
     This is a serious public health issue, patients are suffering and dying without appropriate medical treatment, and more will succumb to this disease while the organisations that are supposed to be advocating for us can't even agree on the scientifically verifiable facts - Myalgic Encephalomyelitis is a clearly defined and diagnostically testable disease with a history of epidemic contagion, while CFS was a cleverly designed illness construct to hide the ME pandemic. John Anderson, M.E. advocate

Here are some pretty obvious things that need to STOP happening:
. STOP taking Reeves and the Wessely School seriously.
. STOP including anything to do with psychological, psychosocial, primary affective, somatic, mood disorder, or depression, etc.
. STOP using the terms 'CFS' CFIDS, CFS/ME, ME/CFS and chronic fatigue (cf).
. STOP lumping together ME, CFS, MCS, IBS, FM....
. STOP focusing on FATIGUE!!!
. STOP saying ME is caused by Epstein Barr, CMV, HHV6A. The incubation periods make that impossible.
. STOP saying people diagnosed with any of the above became ill suddenly and have any/all of the bodily systems damage that people with ME do. This is simply not true.
Here's a new game plan we can all START today:
. START recognizing ME!!!! It's been on the books for decades!
. START using the term ME when referring to those who meet the critieria for it (i.e., patients whose illness started with a 'sudden onset viral event' that started in the BRAIN -- hence the WHO's G93.3, Neurogenic classification--and then quickly moved to the CNS, and then throughout the body.)
. START demanding peer-reviewed articles in widely known and accepted publications.|
. START listening to, reading, and working with Dr. Byron Hyde. He understands the illness far better than any other individual, due to years and years of hands-on time with actual ME patients.
. START dedicating adequate resources to ME studies.
. START a national/worldwide database to start tracking this illness and gathering relevant data.
. START doing BIOMEDICAL research on these patients.
. START understanding that people with ME: DO NOT RECOVER! They suffer horribly for years, and then die.
LK Woodruff, M.E. advocate

For 20+ years they have obfuscated to an extreme extent. How can the masses keep falling for their bunk? ME has been documented for many, many years. It's been classified--differently--by the WHO since 1969. Those who have it are horrifically ill and suffering horribly. They die. They are not just 'fatigued' for a variety of reasons. Everyone needs to stop worrying about being polite, and start asking: WHY ARE THESE PATENTS BEING IGNORED, while the focus remains on those 'fatigued' ....
     I don't care if those diagnosed with 'CFS' (Fukada, et al) want to keep Reeves/CDC/CAA playing around with 'fatigue' issues... But it is decades past time for some highly qualified and impeccably scientific researchers to get serious about ME and move forward from the work of Dowsett, Ramsey, Hyde and more..... I will not stop until they do, or until I breathe my last breath. And unfortunately, in the existing climate, the latter will most likely occur first. And I find that to be unconscionable and criminal. LK Woodruff, M.E. advocate

Far too many Drs, researchers and even (often self-claimed) experts are continuing to lump ME, a neurogenic illness classified by the WHO under G93.3, with 'CFS' (Fukada, et al), which is based on 'fatigue' and is referred to as 'ill-defined', etc. Understanding the significant differences is not difficult, when one is familiar with ME and knows what to look for. PLEASE do all that you can to rectify this untennable situation!! Please share this information--and all that I have previously sent you--with others and implement a workable plan, collaboratively. Too many years have been wasted already...too many lives already lost. YOU can do this, if you just decide to. LK Woodruff, M.E. advocate

Modern technology has now served to confirm and to detail the meticulous clinical and scientific observations made about ME before 1988! We can rest assured that this serious disability can arise (like polio) from an initially trivial infection which has epidemic and pandemic potential but we need to give further thought to any name change. We should, instead, be making maximum use of modern and effective means of diagnosis, prevention and management. Dr Elizabeth Dowsett (on the use of the term ‘Myalgic Encephalopathy’)

ME has already been called the ‘Disease of a Thousand Names’, yet, in the Spring of 2001, one of the ME Charities has just applied to the Charities Commission for another change. This time, it is from Myalgic Encephalomyelitis to Myalgic Encephalopathy, that is: from muscle pain accompanied by inflammation of the brain and spinal cord to muscle pain and damage to the brain and spinal cord of unknown origin. This clumsy euphemism will not only bloom less sweetly than it’s predecessors but does not fit the facts. Moreover, this change will not benefit research nor relieve the confusion and disbelief which blocks access to standard medical care for these patients. Dr Elizabeth Dowsett (on the use of the term ‘Myalgic Encephalopathy’)

To the very few physicians still practicing today who began seeing patients with this illness some 40 years ago and who have continued to record and publish their clinical findings throughout, the current enthusiasm for renaming and reassigning this serious disability to subgroups of putative and vague "fatigue" entities, must appear more of a marketing exercise than a rational basis for essential international research. It was not always so unnecessarily complicated! Dr Elizabeth Dowsett

Following successful immunisation against poliomyelitis in the early 1960s and the removal of 3 strains of polio virus from general circulation in the countries concerned, the related non-polio enteroviruses rapidly filled the vacancy. By 1961, the prevalence of diseases (such as viral meningitis) caused by these agents soared to new heights. In the mid 1980s, the incidence of ME had increased by some seven times in Canada and the UK, while in the USA a major outbreak at Lake Tahoe (wrongly ascribed at first to a herpes virus) led to calls for a new name and new definition for the disease, more descriptive of herpes infection. This definition based on "fatigue" (a symptom common to hundreds of diseases and to normal life, but not a distinguishing feature of myalgic encephalomyelitis) was designed to facilitate research funded by the manufacturers of new anti-herpes drugs. Dr Elizabeth Dowsett

"There are actually 30 well documented causes of ‘chronic fatigue’. To say that ME is a ‘subset’ of CFS is just as ridiculous as to say it is a ‘subset’ of diabetes or Japanese B encephalitis or one of the manifestly absurd psychiatric diagnosis, such as, ‘personality disorder’ or ‘somatisation’. ME is a systemic disease (initiated by a virus infection) with multi system involvement characterised by central nervous system dysfunction which causes a breakdown in bodily homoeostasis (The brain can no longer receive, store or act upon information which enables it to control vital body functions, cognitive, hormonal, cardiovascular, autonomic and sensory nerve communication, digestive, visual auditory balance, appreciation of space, shape etc). It has an UNIQUE Neuro-hormonal profile" Dr Elizabeth Dowsett

‘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.’ Dr Byron Hyde

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." Dr Byron Hyde

M.E. appears to be in this same family of diseases as paralytic polio and MS. M.E. is definitely less fulminant than MS but more generalized. M.E. is less fulminant but more generalized than poliomyelitis. This relationship of M.E.-like illness to poliomyelitis is not new and is of course the reason that Alexander Gilliam, in his analysis of the Los Angeles County General Hospital M.E. epidemic in 1934, called M.E. atypical poliomyelitis. Dr Byron Hyde

Under epidemic and primary M.E. there is no consensus as to the viral or infectious cause. Much of this lack of consensus may be due to the non-separation of acute onset from gradual onset patients. Primary M.E. is always an acute onset illness. Doctors A. Gilliam, A. Melvin Ramsay and Elizabeth Dowsett, John Richardson of Newcastle-upon-Tyne, W.H. Lyle, Elizabeth Bell of Ruckhill Hospital, James Mowbray of St Mary’s and Peter Behan all believed that the majority of primary M.E. patients fell ill following exposure to an enterovirus (Poliovirus, ECHO, Coxsackie and the numbered viruses are the significant viruses in this group). I share this belief. In my tests in Ruckhill Hospital in Glasgow, I found confirmation of enteroviral infection only in acute onset patients and not in any gradual onset [ie. CFS] patients. Few physicians realize that almost all cases of poliovirus recovered from poliomyelitis victims came from cadavers. At the very least, these enteroviruses must be recovered from patients during their onset illness and this has rarely been done. An exception is in the case of the Newton-le-Willows Lancashire epidemic where Dr. W. H. Lyle’s investigation recovered ECHO enterovirus. Enteroviruses are one of the most likely causes of M.E. If this belief is correct, M.E. could be vanquished by simply adding essential enteroviral genetic material from these enteroviruses to complement polio immunization. Dr Byron Hyde

Psychiatric treatment is very useful and essential for psychiatric patients. Primary M.E. patients are simply not psychiatric patients. Unfortunately, it is not only psychiatrist physicians that have made themselves the tools of insurance companies. Dr Byron Hyde

All definitions which wear the 'f' word (ie. fatigue) in their name are not M.E. nor neurological. They are definitions of fatigue conditions. And when these definitions were written it was not neurological M.E. which they were attempting to define. The Committee for Justice and Recognition of Myalgic Encephalomyelitis

When CFS Holmes et al. 1988 was written - the condition which they were trying to define was Chronic Epstein Barr Virus. The principal symptom was 'fatigue'. It is interesting to note that those who were familiar with M.E. on the committee refused to sign off on this definition - as they pointed out that it was not a definition of M.E. The Committee for Justice and Recognition of Myalgic Encephalomyelitis

With the rapid development of technology and access to international publication, the UK retained its reputation as a leading centre of M.E. research and remained able to report clinical studies backed up by molecular biology, brain imaging, sophisticated hormonal and other biochemical studies. At this point, with sound evidence of an infective cause, the way in which such infection is spread and the pathogenisis of the disease, why were we urged to adopt the "fatigue definitions" inflicted upon M.E. sufferers by USA scientists? Dr Elizabeth Dowsett

"Myalgic Encephalopathy is not the same as Myalgic Encephalomyelitis. Encephalopathy can mean 'brain abnormal state' and this meaning would therefore endorse treatments such as CBT and GET - which do not work in those with neurological M.E. (which meets the Ramsay criteria). This change of name to 'opathy' can therefore be seen to endorse psychological therapies as treatment." The Committee for Justice and Recognition of Myalgic Encephalomyelitis

"The crucial differentiation between ME and postviral fatigue syndromes lies in the striking variability of the symptoms not only in the course of a day but often within the hour. This variability of the intensity of the symptoms is not found in post viral fatigue states" Dr Melvin Ramsay

Criticism of the name, Myalgic Encephalomyelitis: The reason why these physicians were so sure that they were dealing with an inflammatory illness of the brain is that they examined patients in both epidemic and endemic situations with this curious diffuse brain injury. In the epidemic situation with patients falling acutely ill and in some cases dying, autopsies were performed and the diffuse inflammatory brain changes are on record.
     Recently an M.E. patient's spine has been examined in the UK and the inflammatory nature was also discovered. Myalgic Encephalitis is a diffuse inflammatory injury of the capillaries at the level of the basement membrane of the brain. It makes no sense to rename the horse and call it Myalgic Encephalopathy. All brain pathologies involving brain tissue are encephalopathies. Let us stop fussing around and get back to the real problem and that is investigating the patients, segregating them into sub-type injuries and working on the treatment of these children and adults.
     Were these epidemics that I have spoken about cases of Myalgic Encephalomyelitis? They were. I have personally visited all of these cases except for the Cumberland epidemic and Wallis left us such a good description of that epidemic that there can be no doubt. I have personally gone to Los Angeles and examined patients from the Los Angeles epidemic. I have gone to Iceland and examined patients from the Akureyri epidemic. I have examined patients from the Royal Free Hospital epidemics, from the Newcastle sporadic illnesses. Many are the same or similar and many of them had been rejected or shunned because they were not true poliomyelitis. However they were all cases of Myalgic Encephalomyelitis. Dr Hyde

By 1986 HHV6 was already known to have an incubation period of 9 days due to human experimentation when the actual virus was injected into several children. See (Gorbac, Second Edition, Infectious Diseases, page 1335). When acquired by random infection, the incubation period of HHV6 Roseola was more like 12 days. So once again anyone with access to a library or a computer would have soon dispelled any view that HHV6 was a cause of M.E. epidemics where the incubation was approximately 7 days or less. Is it possible that Steven Strauss and the other intelligentsia of the National Institute of Health (NIH) in Bethesda and CDC in Atlanta and elsewhere didn't have access to libraries and the Internet? Maybe we should start a public request to ask for donations for them. Dr Hyde

Associating the Lake Tahoe epidemic with Epstein Barr Syndrome was frankly ridiculous and you will see why almost immediately. Anyone who realizes that infectious mononucleosis is caused by the herpes family virus, Epstein Barr Virus (EBV), and that the incubation period of this illness is approximately 40 days, should have realized that you simply cannot have a rapidly spreading viral epidemic with a virus with a latent period of 40 days. Neither Dr Straus nor Dr Holmes, senior government physicians, should have fallen into such a trap. They only had to go to the excellent CDC library to realize that rather than spending half a million dollars or so on a publication that they should have known would not have incriminated EBV. Yet this epidemic somehow spread the myth that this illness was caused by EBV. Such is the perseverance of error. Dr Hyde

Myalgic Encephalomyelitis is different form all other illnesses and as is very clearly pointed out above, M.E. is different from all the definitions of CFS. Concerned that there may be attempts to confuse ME with other conditions, in 1989 Dr. Ramsay wrote a concise statement to clarify that M.E. is distinct and identifiable and is not to be confused with other forms of debility or flu or fatigue or post flu.
     As we know, ME has many, many, many symptoms but Dr Ramsay presents this statement to clarify how ME is different from all other conditions, and a definite case can be recognized clinically by a triad of particular muscle, brain and circulatory dysfunctions that are characteristic.
     We are indebted to Dr Ramsay, an outstanding infectious disease specialist who devoted much effort to the investigation of our disease from the time that he was confronted with the epidemic at the London hospitals in the 1950’s. Dr Ramsay is the recognized authority in ME, established upon his direct personal involvement in the investigation of the epidemics, research and scientific studies and the examination and treatment of individual patients for over 30 years. Dr. Ramsay’s fame and standing are no accident and we can see that his descriptions of what make this disease unique are accurate and Ramsay’s M.E. is the same disease we have today.
     It is clear that attempts at confusion and name changes would serve to obscure its history and also its origins. So we must never forget Ramsay. The worldwide epidemic we have today is the same disease that Ramsay encountered many years ago. The Committee for Justice and the Recognition of M.E.

Dr Melvin Ramsay and others further defined the illness, and Myalgic Encephalomyelitis became the recognized term for this neurologic infectious disease. A number of distinguished doctors continued to study and report on ME outbreaks, including Wallis, Acheson, Richardson, Parish, Henderson, Shelokov, Dowsett, Ryll, Behan, and Hyde. Their writings have brought us a wealth of information about Myalgic Encephalomyelitis, and a continuous historical record of our disease over many decades. Perhaps most impressive among them, Dr Richardson could attest that the cases he saw in the year 2000 have the same disease as patients that he and Dr Ramsay encountered in the 1950s: the neurological disease defined as Myalgic Encephalomyelitis. The Committee for Justice and the Recognition of M.E.

The BOTTOM LINE is that NONE of us who have ME are willing to sit back and allow our illness to continue to be highjacked by patients 'fatigued' for a myriad of reasons (Lyme, thyroid, mono, depression, Q-fever, or whatever).
The FACTS
The Terms,
The Defintions,
The Criterias
ALL must be adhered to. Doing anything less is just plain sloppy and indicates a level of ignorance that must be rectified immediately, before even more damage is done to the patients.
     This ridiculous and preposterous and and ~relatively new within the last several years~ (since the creation of the 2003 ME/CFS Canadian Criteria) 'blending' and 'lumping' of 2 entirely DIFFERENT THINGS is just a continuation of the games being played by vested interests, who exist to keep the disability numbers LOW.
     We ALL need to move beyond that crazy mixed notion and START DEMANDING CORRECT ILLNESS IDENTIFICATION, followed closely by rigid, strict, precise, well-planned and well-coordinated LARGE SCALE scientific research efforts on EACH illness seperately.
     Any unwillingness to do so is just another sign of illness obfuscation done by those who benefit from keeping the truth hidden. And that would not be the patients, now would it??????
Think carefully.
Think clearly.
Think fully.
Use logic.
DEMAND BETTER. And stop this foolishness and nonsense once and for all.
Because YOUR lives and health depend upon it. And remember this, too:
Studies done on mixed patient groups only produces mixed results (data). And that makes the data irrelevant. It's a waste of time, money and effort. It helps no one. Which is exactly what the past 20 years have been all about. LK Woodruff, M.E. advocate

Please, all of you, go through these various criterias - compare them, look at what the focus of each is, note the exclusions, and pay attention to whom the authors of each are. Then determine which one fits you. -->If you don't fit any of them precisely (close doesn't count), and you don't fit the ME criteria, then you and your doctor(s) need to go back to the drawing board to figure out specifically and definitively what illness you actually do have. You owe it to yourselves to get to the truth. LK Woodruff, M.E. advocate

‘Dr. Manu's note that preceded his CV and explained his views on ME, left me wondering what qualified him to pass an opinion at all. Not that he actually referred to ME. He prefers the title, chronic fatigue syndrome ( CFS) - a condition, concocted by self-serving members of his profession and a condition which bears no resemblance to Myalgic Encephalomyelitis (ME). This issue is not about a concocted disorder, the definition of which is determined by conflicts of interest and nothing else. It is about a scientifically proven, and a WHO accepted physical disease that is both life-destroying and life-taking.’ Gurli Bagnall, M.E. advocate

'At one time, sick people recuperated or convalesced. Now according to a group of megalomaniacal brain-washers and self-elected "law-makers", they are expected to rehabilitate along with murderers, rapists and thieves. The law which states that a person can only be sectioned if he is a danger to himself and/or others, has been swept aside by the above mentioned self-serving monsters masquerading as doctors. Many will dismiss this as fanciful rubbish. After all, we live in civilized societies where such things could never happen. Unfortunately, they can and they do. It happened to the recently deceased [M.E. patient] Sophia Mirza.' Gurli Bagnall, M.E. advocate

  • the illness ALREADY HAS a name - myalgic encephalomyelitis
  • the illness already has a definition (Dr. Byron Hyde, Nightingale Definition of M.E., 2006)
  • any other name (and definition) distances the illness from original research (Ramsey, Richardson, Dowsett)
  • 'CFS' is meaningless, denies the biomedical reality of the illness, denigrates patients as psychologically ill and discredits their claims for medical treatment and welfare benefits
  • the above consequences were just what the CDC intended in creating 'CFS' (i.e. intended to discredit the illness and evade financial responsibility for the ill)
  • combining 'ME' with 'CFS' makes the composite term meaningless
  • the 'ME' part is meaningless if it means 'ME-opathy' (no such thing)
  • the 'ME' part cannot stand for two terms at once - this is sloppy and will breed more confusion
    Lesley, M.E. advocate

GENETICS AND M.E. by Gurli Bagnall 'If science is to follow this line of inquiry, then let it be honest with realistic terms of reference. As it stands, it could well be another route to the psychiatric dustbin. In fact, with the endorsement of people like Simon Wessely, it is a certainty.’

It will be up to those countries using the name CFS or ME/CFS, to get the CFS and ME mess sorted out and distinctly separate CFS from ME - and also distinctly separate the diseases and conditions covered by the CFS umbrella term from each other. Because of the worldwide confusion about ME and CFS amongst physicians and health authorities - and patients for that matter - it is of vital significance to clarify and emphazise the difference between these two. We need a new era where correct medical information about what ME is - and certainly is not - is highly needed. Lajla Mark, M.E. advocate

Research workers must be encouraged and appropriately funded to work in this field. However they should first be directed to papers published before 1988, the time at which all specialised experience about poliomyelitis and associated infections seem to have vanished mysteriously! Dr Elizabeth Dowsett

Myalgic encephalomyelitis is a common disability but frequently misinterpreted. Amongst 6,000 patients referred for general microbiological diagnosis between 1975 and 1987, 420 cases were recognized. This illness is distinguished from a variety of other post-viral states by an unique clinical and epidemiological pattern characteristic of enteroviral infection. Prompt recognition and advice to avoid over-exertion is mandatory. Dr Dowsett and Dr Ramsay

'The physician and patient alike should remember that CFS is not a disease. It is a chronic fatigue state. The one essential characteristic of M.E. is acquired Central Nervous System (CNS) dysfunction, that of CFS is primarily chronic fatigue.' Dr Byron Hyde

A one-page summary of the facts of M.E.

Copyright © Jodi Bassett, January 2009. This version updated May 2009. From www.hfme.org                            

  • Myalgic Encephalomyelitis is a disabling neurological disease that is very similar to multiple sclerosis (M.S.) and poliomyelitis (polio). Earlier names for M.E. were ‘atypical multiple sclerosis’ and ‘atypical polio.’

  • Myalgic Encephalomyelitis is a neurological disease characterised by scientifically measurable post-encephalitic damage to the brain stem. This is always damaged in M.E., hence the name M.E. The term M.E. was coined in 1956 and means: My = muscle, Algic = pain, Encephalo = brain, Mye = spinal cord, Itis = inflammation.  This neurological damage has been confirmed in autopsies of M.E. patients.

  • Myalgic Encephalomyelitis has been recognised by the World Health Organisation’s International Classification of Diseases since 1969 as a distinct organic neurological disease.

  • Myalgic Encephalomyelitis is primarily neurological, but also involves cognitive, cardiac, cardiovascular, immunological, endocrinological, metabolic, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. M.E. affects all vital bodily systems and causes an inability to maintain bodily homeostasis. More than 64 individual symptoms of M.E. have been scientifically documented.

  • Myalgic Encephalomyelitis is an acute (sudden) onset, infectious neurological disease caused by a virus (a virus with a 4-7 day incubation period). M.E. occurs in epidemics as well as sporadically and over 60 M.E. outbreaks have been recorded worldwide since 1934. There is ample evidence that M.E. is caused by the same type of virus that causes polio; an enterovirus.

  • Myalgic Encephalomyelitis can be more disabling than MS or polio, and many other serious diseases. M.E. is one of the most disabling diseases there is. More than 30% of M.E. patients are housebound, wheelchair-reliant and/or bedbound and are severely limited with even basic movement and communication.

  • Why are Myalgic Encephalomyelitis patients so severely and uniquely disabled? For a person to stay alive, the heart must pump a certain base-level amount of blood. Every time a person is active, this increases the amount of blood the heart needs to pump. Every movement made or second spent upright, every word spoken, every thought thought, every word read or noise heard requires that more blood must be pumped by the heart.
         However, the hearts of M.E. patients only pump barely pump enough blood for them to stay alive. Their circulating blood volume is reduced by up to 50%. Thus M.E. patients are severely limited in physical, cognitive and orthostatic (being upright) exertion and sensory input.
         This problem of reduced circulating blood volume, leading to cardiac insufficiency, is why every brief period spent walking or sitting, every conversation and every exposure to light or noise can affect M.E. patients so profoundly. Seemingly minor 'activities' can cause significantly increased symptom severity and/or disability (often with a 48-72 hour delay in onset), prolonged relapse lasting months, years or longer, permanent bodily damage (eg. heart damage or organ failure), disease progression or death.
         If activity levels exceed cardiac output by even 1%, death occurs. Thus the activity levels of M.E. patients must remain strictly within the limits of their reduced cardiac output just in order for them to stay alive.
         M.E. patients who are able to rest appropriately and avoid severe or prolonged overexertion have repeatedly been shown to have the most positive long-term prognosis.

  • Myalgic Encephalomyelitis is a testable and scientifically measurable disease with several unique features that is not difficult to diagnose (within just a few weeks of onset) using a series of objective tests (eg. MRI and SPECT brain scans). Abnormalities are also visible on physical exam in M.E.

  • Myalgic Encephalomyelitis is a long-term/lifelong neurological disease hat affects more than a million adults and children worldwide. In some cases M.E. is fatal. (Causes of death in M.E. include heart failure.)

For more information, and to read a fully-referenced version of this text compiled using information from the world’s leading M.E. experts, please see: What is M.E.? Extra extended version. Permission is given for this unedited document to be freely redistributed. Please redistribute this text widely.

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The book 'Caring For The M.E. Patient' by Jodi Bassett includes a Foreword by international M.E. expert Dr Byron Hyde.

He writes:

"There is so much false information that is picked up and disseminated it is near impossible to hold one’s head above the water and sift through this morass of misinformation. Any attempt to seek the truth is always a major difficulty. Somehow, Jodi Bassett and Hummingbird have managed to plow through this field of weeds."

"This is a book that deserves being read, not only by patients and physicians with an interest in M.E. but the bureaucrats in the USA Centers for Disease Control who have done so much damage to the understanding of M.E. I recommend her book to all and wish it every best success."

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