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.

An important note:

Before reading the research/advocacy information given in the links below, please be aware of the following facts:

1. Myalgic Encephalomyelitis and ‘Chronic Fatigue Syndrome’ are not synonymous terms. The overwhelming majority of research on ‘CFS’ or ‘CFIDS’ or ‘ME/CFS’ or ‘CFS/ME’ or ‘ICD-CFS’ does not involve M.E. patients and is not relevant in any way to M.E. patients. If the M.E. community were to reject all ‘CFS’ labelled research as ‘only relating to ‘CFS’ patients’ (including research which describes those abnormalities/characteristics unique to M.E. patients), however, this would seem to support the myth that ‘CFS’ is just a ‘watered down’ definition of M.E. and that M.E. and ‘CFS’ are virtually the same thing and share many characteristics.

A very small number of ‘CFS’ studies refer in part to people with M.E. but it may not always be clear which parts refer to M.E. The
A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy paper is recommended reading and includes a checklist to help readers assess the relevance of individual ‘CFS’ studies to M.E. (if any) and explains some of the problems with this heterogeneous and skewed research.

In future, it is essential that M.E. research again be conducted using only M.E. defined patients and using only the term M.E. The bogus, financially-motivated disease category of ‘CFS’ must be abandoned.

2. The research referred to on this website varies considerably in quality. Some is of a high scientific standard and relates wholly to M.E. and uses the correct terminology. Other studies are included which may only have partial or minor possible relevance to M.E., use unscientific terms/concepts such as ‘CFS,’ ‘ME/CFS,’ ‘CFS/ME,’ ‘CFIDS’ or Myalgic ‘Encephalopathy’ and also include a significant amount of misinformation. Before reading this research it is also essential that the reader be aware of the most commonly used ‘CFS’ propaganda, as explained in A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy and in more detail in Putting research and articles on Myalgic Encephalomyelitis into context.

On the name Myalgic Encephalomyelitis

*O* ME and CFS, the Definitions from the committee for the Justice and Recognition of Myalgic Encephalomyelitis.

"Myalgic Encephalopathy is not the same as Myalgic Encephalomyelitis. None of the contemporaries of Ramsay, such as Dowsett and Richardson, who have been asked to comment on the appropriateness of a change from ME'itis to ME'opathy have found ME'opathy an acceptable explanation. Myalgia means muscle pain. Encephalo - means brain, myelitis has two meaningss, some say it refers to inflammation of the spinal chord, others to inflammation of the myelin, the covering of the brain. Both are physical descriptions. Opathy, on the other hand means pathology - which can mean 'the science or origin, nature, and courses of diseases', but another meaning is 'any abnormal state: social pathology' (Delbridge 1998). Hence 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 ME (which meets the Ramsay criteria). This change of name to 'opathy' can therefore be seen to endorse psychological therapies as treatment.

Muscle pain brain myelin inflammation is not the same as muscle pain brain abnormal state. And the neurological damage which is evident in ME can be explained by myelin inflammation but it cannot be explained by 'brain abnormal state'. Evidence for brain damage has been found in the research of persons such as Casse et al. (2001), Poser (1992) and others. And there is often confusion with MS by persons in the medical profession - where there is myelin damage."


Problems with the so-called "Fair name" campaign: Why it is in the best interests of all patient groups involved to reject and strongly oppose this misleading and counter-productive proposal to rename ‘CFS’ as ‘ME/CFS’

At first glance the idea that the name ‘CFS’ is the cause of so much harm and misunderstanding seems so obvious as to not even merit further discussion. It seems so logical that one of the first things that patients given this diagnosis must do is campaign hard to have the name ‘CFS’ changed to something far more serious sounding and more appropriate.

But the problem is that it only appears that way if you don’t have all, or indeed ANY, of the facts. When you finally do, you quickly become aware of what a sham the idea of renaming ‘CFS’ really is and how it will make things so much WORSE for all the different patient groups involved.

Please read this information on the US so-called ‘Fair Name’ campaign carefully. Don’t let yourself be the unwitting tool of unethical insurance companies through ignorance!

====None of the justifications made by individual advocates or advocacy groups for using the term ‘ME/CFS’ hold up. For example, the claim that we have to use this term because it is used in the 2003 Canadian ‘ME/CFS’ definition is bogus. Specific parts of the paper are relevant to M.E. to some extent and worth supporting by M.E. patients, but it is at best a mix of M.E. and ‘CFS’ and does not select a 100% M.E. patient group, or any other homogenous group. Yet again it selects a vague mix of unrelated patient groups. For each scientifically valid part of the paper there is also another scientifically questionable and psychologically biased part, and overall it also strongly suggests incorrectly that M.E. and ‘CFS’ are the same which is the entire problem!

(It should also be noted that in some ways this definition is even more dangerous than the ‘CFS’ definitions, which were not M.E. definitions at all. This mixed ‘ME/CFS’ definition has unfortunately made many patients misdiagnosed with ‘CFS’ who have post-viral fatigue syndromes or Lyme disease etc. mistakenly think they have M.E., or think they have something called ‘ME/CFS’ which – like ‘CFS’ – doesn’t actually exist.)

  • For more information see Problems with the use of 'ME/CFS' by M.E. advocates.  It should also be pointed out that the so-called ‘Fair name’ campaign makes no claim about adopting the Canadian ‘ME/CFS’ criteria, and instead supports the use of the disastrous CDC ‘CFS’ criteria.

Then there are the equally unconvincing reasons given for using ‘ME/CFS’ by the US so-called ‘Fair name’ campaign involving Rich Carson/ImmuneSupport/Prohealth, the IACFS, and others. The ‘Fair name’ site says:

In August, 2006, we launched a serious effort to bring more validity to CFS, to give it a name that more closely reflects the severity of the condition. Toward this end, eight of the most highly regarded CFS experts in the world came together and formed a Name Change Advisory Board. In January, 2007, they discussed recommendations for this new name, finally deciding on ME/CFS. 1)  ME/CFS is medically and diagnostically correct, reflecting the science of this illness, giving it the credibility it deserves. 2)  Used as an umbrella term, ME/CFS will satisfy those who wish to use Myalgic Encephalopathy, and those who prefer Myalgic Encephalomyelitis. 3)  ME/CFS maintains "CFS," avoiding problems with insurance or disability claims.

 

Let’s look at these claims by one.

1. “ME/CFS is medically and diagnostically correct, reflecting the science of this illness, giving it the credibility it deserves.”

This claim is just ridiculous. The term M.E. is medically and diagnostically correct, but it is clearly only correct when it is applied to people who actually have M.E. and fit this very distinct and unique description and definition of a well-defined scientifically measurable neurological disease. As Professor Malcolm Hooper explains:

The term Myalgic Encephalomyelitis has been included by the World Health Organisation (WHO) in their International Classification of Diseases (ICD), since 1969. The current version ICD-10 lists M.E. under G.93.3 - neurological conditions. It cannot be emphasised too strongly that this recognition emerged from meticulous clinical observation and examination (2006, [Online]).

The term Myalgic Encephalomyelitis is only correct and credible when applied to the right illness in just the same way that the term Multiple Sclerosis is ‘medically and diagnostically correct’ but only when it is used to refer to actual MS patients. To say a term is ‘medically correct’ but then to apply it incorrectly to a completely different patient group or groups, is just the worst sort of slippery and dishonest political trickery.

Patients with Lupus cannot simply decide that they would prefer to use the name ‘Diabetes.’ Patients with MS have no right to decide that they would prefer the term ‘Parkinson’s.’ Medical terms have specific meanings, and patient groups cannot pick new names for themselves in an unscientific and random fashion – nor unethically try to take for themselves names which have already been taken for decades by well-defined patient groups. The vast majority of patients misdiagnosed with ‘CFS’ – an estimated 75% at least – do not have M.E., and so have no right to use the term M.E. or any variation thereof any more than they do to use terms such as ‘cancer’ or ‘Diabetes.’ There is also nothing to be gained for this heterogeneous patient group by the use of such inaccurate and inappropriate terms, and much to be lost.

The term ‘CFS’ is not correct to describe patients with the neurological disease M.E. or any other distinct patient group. As explained previously, there is no such distinct disease as ‘CFS’ as described by any of the ‘CFS’ definitions and so ‘CFS’ can only ever be a misdiagnosis. It doesn’t exist. Whatever you want to call it, the bogus disease category of ‘CFS’ is as far from being ‘medically correct’ as it is possible to be.

The two terms describe completely different entities and cannot both be correct.

The idea that every patient who qualifies for a ‘CFS’ misdiagnosis should now be labelled as a M.E. or ‘ME/CFS’ patient is utterly devoid of any scientific legitimacy. It is also grossly unethical and illogical – and harmful to EVERY patient group involved. Putting M.E. together with ‘CFS’ doesn’t add to the credibility of ‘CFS’ – it just strips M.E. of credibility and scientific legitimacy – which indeed seems to be the entire point of the exercise.

 

2. “Used as an umbrella term, ME/CFS will satisfy those who wish to use Myalgic Encephalopathy, and those who prefer Myalgic Encephalomyelitis.”

The M.E. part of ‘ME/CFS’ cannot refer to two terms at once.  It shows medical disrespect to think an acronym can work that way. This is clearly a calculated attempt to be inclusive, and to make the largest possible number of groups happy – including vested interest groups, clearly – but it makes the acronym meaningless.  To have an acronym stand for two very different entities is sloppy and can only breed more confusion. The last thing any of us needs is yet another vague and ill-defined umbrella term that can be (and will be) manipulated by vested interest groups for their benefit and to our detriment!

Myalgic Encephalomyelitis is characterised by post encephalitic damage to the brain stem; a nerve centre through which many spinal nerve tracts connect with higher centres in the brain in order to control all vital bodily functions. This is always damaged in M.E. – hence the name Myalgic Encephalomyelitis. The name and definition of the infectious neurological disorder Myalgic Encephalomyelitis has a 50 year history, and is backed up by an enormous amount of solid scientific evidence (including evidence obtained from the autopsies of M.E. fatalities). Myalgic Encephalomyelitis has been classified correctly as a neurological disorder in the World Health Organisations International Classification of Diseases since 1969. ME’itis existed as a discrete neurological entity many decades before ‘CFS’ was even created.

‘Myalgic Encephalopathy’ is a made-up term that was created only after the disastrous ‘CFS’ definitions. The term ME’opathy was created in the UK, for reasons involving politics and vested interests rather than science. The claimed scientific justifications for the creation and use of this made-up name are bogus. ME’opathy is linked to no specific definition and no specific patient group. The term was not created through a careful examination of the evidence or because of any specific research findings. There is no scientific evidence behind ME’opathy whatsoever and (as is appropriate) this term has no WHO ICD classification. In practical terms, ME’opathy is merely another name for the bogus disease category of ‘CFS.’ It is a made-up term that could be taken to mean anything and so is just as meaningless and as harmful as ‘CFS’ is.

Do not be fooled by the merely superficial similarity of these terms – Myalgic Encephalomyelitis is not at all the same thing as ‘Myalgic Encephalopathy.’ Patients with authentic M.E. do have the damage to the brain referred to in the name Myalgic Encephalomyelitis, however this damage is of course not found in patients suffering various types of chronic fatigue illnesses which are commonly misdiagnosed as ‘CFS.’ Legitimate M.E. experts, advocates and researchers do not support the name change from Myalgic Encephalomyelitis to ‘Myalgic Encephalopathy.’ Patient advocates Margaret Williams and Eileen Marshall write:

Despite the relentless financial, psychosocial and political engineering that seems to underpin the current determination to remove the term "myalgic encephalomyelitis" (M.E.) from the medical lexicon (where, based on accurate published evidence of the nature of the disorder, it has resided for the last half century), the present proponents of its demise have failed to produce any evidence-base to support their clamour for its removal and its replacement by the less specific term "myalgic encephalopathy" (2004a, [Online])

The Committee for Justice and Recognition of Myalgic Encephalomyelitis explain:

Myalgia means muscle pain. Encephalo - means brain, myelitis has two meanings, some say it refers to inflammation of the spinal chord, others to inflammation of the myelin, the covering of the brain. Both are physical descriptions. Opathy, on the other hand means pathology - which can mean 'the science or origin, nature, and courses of diseases', but another meaning is 'any abnormal state: social pathology' (Delbridge 1998). Hence 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. Muscle pain brain myelin inflammation is not the same as muscle pain brain abnormal state.
    
The neurological damage which is evident in M.E. can be explained by myelin inflammation but it cannot be explained by 'brain abnormal state'. Evidence for brain damage has been found in the research of persons such as Casse et al. (2001), Poser (1992) and others, and there is often confusion with MS by persons in the medical profession – where there is myelin damage ([2007, [Online]). (It should also be pointed out that of course the psychological approach also does not work in many of those patients misdiagnosed with ‘CFS’ who do NOT have M.E.)

If you have a look at who supports ME’itis and who supports ME’opathy it is very easy to see who really benefits from ME’opathy, and it isn’t the patients. ME’opathy is supported by all our worst abusers and by the most harmful propaganda producing and supporting patient groups. Support for this term is red flag that lets you know a group is not to be trusted. It really is that simple. (The same may be said for support of this bogus ‘Fair name’ campaign. Neither this campaign nor the term ME’opathy are supported by any legitimate advocates.)

The use of the meaningless term ‘Myalgic Encephalopathy’ is a dishonest attempt to divest Myalgic Encephalomyelitis of the legitimacy and protection of its correct WHO classification. The term ‘Myalgic Encephalopathy’ is a political creation with no scientific validity, just as ‘CFS’ is. It is a trap, a trick. This loss of the correct WHO classification through a name change is something that patient groups MUST do everything in their power to stop these vested interest groups achieving if they wish to stop the already severe abuse and mistreatment becoming even more entrenched and legitimised. As Professor Malcolm Hooper explains:

There have been persistent and frequently covert attempts by these [vested interest] psychiatrists to subvert the international classification of this disorder, with destructive consequences for those affected. Correct classification does matter because it impacts on correct referral to an appropriate specialist, correct investigations, correct diagnosis, correct management and / or treatment, correct State benefit support [and] correct insurance policy payments (2003a, [Online]) (Hooper & Marshall 2005a, [Online]).

  • For more information on the name Myalgic Encephalomyelitis (and the political motivations behind terms such as ME’opathy) see: On the name ME'itis. Note also that there is also no agreed definition for the terms ‘ME/CFS’ or ‘CFS/ME.’ Some groups claim that when the term ‘ME/CFS’ is used this refers to patients who fit the Canadian criteria for ‘ME/CFS’ but this is simply not true as a vast number of patients and patients groups etc. use the term ‘ME/CFS’ to refer simply to ‘CFS’ or even to ‘chronic fatigue’ or ‘fatigue.’


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.'

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It seems like using ‘ME/CFS’ is really just about popularity, very often, sadly. That it is just about playing both (or all) sides and so keeping the maximum number of people superficially happy generally, and superficially happy with the individual advocate or group. These mixed terms are accepted by many propaganda supporting ‘CFS’ researchers and ‘advocacy’ groups, by people misdiagnosed with ‘CFS’ who don’t have M.E. as well as 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) etc. But is that really a good enough reason to work against the best interests of the patient group (or groups) they claim to be advocating for? (Is our own mere popularity really what should be our main priority as advocates? What about truth? What about not compromising on the FACTS? What about putting ethics and patient welfare FIRST, before your own personal interests or the interests of your group? What on earth is the POINT otherwise??)

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 so ‘ME/CFS’) because some of the recent research (at least partly) involving M.E. patients has been done under the name ‘CFS’ is bogus.

Of course we should reference such research that is relevant, but this could very easily be done by writing a short explanation of the confusion between M.E. and ‘CFS’ (and why some research done under the name ‘CFS’ does relate at least in part to M.E. but why the vast majority does not and that M.E. and ‘CFS’ should not be considered synonymous terms and that the ‘CFS’ definitions do not define M.E. and that M.E. is neither ‘medically unexplained’ nor defined by mere ‘fatigue’) and including this in each article or piece of research. This is the type of vital basic information that even without the terminology issues, we need to get out there as a first priority anyway. To say this notification has to be done with the terminology itself is ridiculous. Yes the term ‘ME/CFS’ lets you claim some of the relevant to M.E. ‘CFS’ research, but you also blindly claim the other 95% (or more) of ‘CFS’ research which isn’t relevant to M.E. and which directly harms M.E. patients (etc.). You imply incorrectly that M.E. and ‘CFS’ are the same, and so on, which is a major cause of our entire problem.

 

2.     The claim that ‘ME/CFS’ is about getting those M.E. patients misdiagnosed with ‘CFS’ to be able to find information about M.E. also doesn’t hold up to scrutiny.

Again, yes, this is something that it is very important that we do, but it is misleading to suggest that this can only be done using the main terminology we use. It could be done so simply and so much more clearly with a short explanation (a few carefully written paragraphs) which is briefly referred to at the top of the page where you first use the term M.E. and included in full at the bottom of the page (or included in full at the top of the page) and repeated as much as necessary. This way you would also avoid giving patients misdiagnosed with ‘CFS’ who DON’T have M.E., the mistaken (and harmful) idea that they do have M.E. and that M.E. and ‘CFS’ are the same, and so on. You’d avoid reinforcing any of the myths about M.E. and ‘CFS.’

 

3.     The claim that ‘ME/CFS’ is a temporary term, and that eventually the ‘CFS’ part will just drop off and our only chance for change is gradual change is false.

This exact strategy has been tried and tried again for the last 20 years and it has failed totally. We are worse off now than 20 years ago, if anything. Trusting that if we compromise ourselves now (by mixing M.E. and ‘CFS’) that we will be rewarded with something that we want to happen but which harms the interests of the vested interest group involved – without any type of force being exerted on our part – is just fanciful, unfortunately. These groups are never going to willingly admit the truth about M.E. when doing so means they lose millions or even BILLIONS of dollars (as well as having to admit that they have acted dishonestly and criminally).

 

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

Yes, specific parts of the paper are relevant to M.E. to some extent and 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. For each good part of the paper there is also another scientifically questionable and psychologically biased part, and overall it also strongly suggests incorrectly that M.E. and ‘CFS’ are the same and that M.E. is defined by ‘medically unexplained fatigue’ and so on. It reinforces some of the most harmful myths about M.E. Yes parts of it deserve our qualified support, but it certainly does not justify the widespread use of the term ‘ME/CFS’ by M.E. advocates.

(It should also be noted that in some ways this definition is even more dangerous than the ‘CFS’ definitions, which were not M.E. definitions at all. This mixed ‘ME/CFS’ definition has unfortunately made many patients misdiagnosed with ‘CFS’ mistakenly think they have M.E. (or think they have something called ‘ME/CFS’ which doesn’t actually exist). It also leaves the door wide open for research to be done on non-M.E. patient groups, which can then be more convincingly incorrectly said to relate to M.E. patients. Something we need to keep in mind.)

 

‘ME/CFS’ just doesn’t make sense. The reasons given for supporting ‘ME/CFS’ by those pushing so hard for its use seem to be just excuses, not reasons. The real reasons remain obscured, which is of real concern. For every problem ‘ME/CFS’ supposedly solves, it creates many more far worse problems, and these same primary problems can all be solved so simply in other ways that have NO HUGE DOWNSIDES!


*O*O* The Nightingale Definition of Myalgic Encephalomyelitis (M.E.) by Dr Byron Hyde 2006


*O*O* 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

‘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.’

Where are our priorities?

Myalgic Encephalomyelitis 1955-1957: The term was jointly invented by Dr A Melvin Ramsay who coined this name in relation to the Royal Free Hospital epidemics that occurred in London from 1955 to 1957 and by Dr John Richardson who observed the same type of illness in his rural practice in Newcastle-upon- Tyne area during the same period. It was obvious to the physicians at the Royal Free Hospitals and in Newcastle-upon- Tyne that they were dealing with the consequences of an epidemic and endemic infectious disease. It was at this same epidemic period that Dr Wallis described the Cumberland Epidemic as Encephalomyelitis of Unknown Origin. It is difficult to imagine that these three physicians and their associates got the name wrong. They were dealing with an encephalomyelitis. What does this term signify?

Myalgic Encephalomyelitis: is a simple term that translates into English in the following manner:

• My = muscle

• Algic = pain

• Encephalo = brain

• Mye = spinal cord

• Itis = inflammation

Myelitis: In part the name myelitis was a logical association with the illness poliomyelitis that in 1955 was being tamed by the Jonah Salk Poliomyelitis Immunization.

Criticism of the name, Myalgic Encephalomyelitis: The critics of this term have had no problem with the Myalgic part referring to muscle pain.

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.

Inflammation is often associated with increased sedimentation rate, fever, inflammatory blood cells but these are not usually seen in paralytic poliomyelitis and yet no one doubts that this is in part an inflammation of the capillaries supplying the anterior horn cells.

Circa 1996, an autopsy was performed on a woman with Myalgic Encephalomyelitis in Newcastle-upon- Tyne by Dr John Richardson and the brain tissue examined by Dr. James Mobray at St Mary's Paddington. This woman had a history of typical Myalgic

Encephalomyelitis, was well known by Dr Richardson and accidentally died when her car fell off the side of the pier into the North Atlantic, the cold water preserving the brain tissue. Dr Mowbray was able to demonstrate an autoimmune inflammatory injury at the capillary level of the brain and basement membrane, the area that separates the capillaries from the neurons and brain tissue. In effect the same juxtaposition as in poliomyelitis but in this case in the brain and not in the spinal cord. (Poliovirus also injures the sub cortical areas of the brain.)

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.

So what did we know about M.E. by 1958?

Myalgic Encephalomyelitis (M.E.) could be categorized as follows:

1. M.E. follows a contagious epidemic and endemic infectious disease,

2. M.E. represented a diffuse Central Nervous and in some cases a Peripheral Nervous System Injury in which different organs and different systems were also sometimes involved.

3. M.E. is an illness that follows an infection, probably viral in nature, but different epidemics appear to have been the result of different neurotropic diseases. Some were definitely ECHO and some were other enteroviruses but most were never categorized. (When we studied 100 cases, 40 acute onset and 60 gradual onset cases we found no suggestion of enteroviruses in the gradual onset and only 10 of the 40 acute onset cases were recoverable enteroviruses. Two of the 10 were post-transfusion and 8 of the acute onset were post infectious.) The cause in 90 % of the cases remained a mystery.

4. The incubation period from time of contact with the infection until the appearance of the illness is approximately 4-7 days,

5. In its epidemic form M.E. was most commonly seen in (a) Health Care Workers, (b) children and older students in residential schools, nurses residences and hospitals, (c) in military barracks where students or soldiers were housed in close proximity further supporting the belief in its infectious nature.

6. Although M.E. was not caused by poliovirus in the Akureyri epidemic, infection with M.E. somehow protected the patients from the polio epidemic that swept though Iceland in the 1950s. Polioviruses represent three of approximately 100 different enteroviruses. This was the reason why many in the UK believed that some of these epidemics were probably caused by a less lethal non-polio form of enteroviruses such as ECHO, Coxsackie, the numbered and new enteroviruses.


*O* What is ME? What is CFS? Information for Clinicians & Lawyers by Eileen Marshall, Margaret Williams & Professor Malcolm Hooper, 2001

Evidence of abnormalities in ME

Despite beliefs and assertions to the contrary, in ME there is evidence of inflammation of the central nervous system (CNS); that is what helps to differentiate ME from other forms of CFS. There are many references in the medical literature to inflammation of the CNS in ME and in ICD-CFS (37),(38),(39),(40),(41),(42) but such CNS inflammation is not found in all variants of CFS. It is incorrect to deny the existence of CNS inflammation in ME / ICD-CFS. In some cases of ME, as in multiple sclerosis, there is evidence of oligoclonal bands in the cerebrospinal fluid. (43),(44).  It is accepted by the most experienced ME clinicians that some degree of encephalitis has occurred both in patients with ME and in those with post-polio syndrome: the areas chiefly affected include the upper spinal motor and sensory nerve roots and the spinal nerve networks traversing the adjacent brain stem (which is always damaged). (45).  In nearly every patient there are signs of disease of the central nervous system. (46).  Recent research continues to support neurological involvement. (47),(48),(49),(50),(51),(52),(53)


Smoke and Mirrors by Jodi Bassett

This paper looks at the lack of evidence (and financial and political motivations) behind the 'behavioural' model of M.E. and outlines a strategy for the resolution of the confusion caused by the 'CFS' disease category

'The disease category ‘CFS’ must be abandoned completely

Patients with fatigue (and other symptoms) caused by a variety of different illnesses need to be diagnosed correctly with these illnesses if they are to have any chance of recovery; not given a meaningless Oxford or Fukuda ‘CFS’ misdiagnosis. (Some of the conditions commonly misdiagnosed as ‘CFS’ are very well defined and well-known illnesses and very treatable – but ONLY once they have been correctly diagnosed). Patients with M.E. need this same opportunity. Each of the patient groups involved must be correctly diagnosed and then treated as appropriate based on legitimate and unbiased science involving the SAME patient group. Dr Byron Hyde MD explains that doctors must return to the age-old medical principals of correct diagnosis (a) careful history, (b) detailed physical examination and (c) appropriate investigation. (2006, [Online])

The name Myalgic Encephalomyelitis must be fully restored (to the exclusion of all others) and the WHO classification of M.E. must be accepted and adhered to in all official documentations and government policy. There were sound medical reasons for the creation of the name in 1956, and for the classification of the illness by the WHO in 1969; neither of which has changed in the interim. Professor Malcolm Hooper explains: The term myalgic encephalomyelitis (means muscle pain, my-algic, with inflammation of the brain and spinal cord, encephalo-myel-itis, brain spinal cord inflammation) was first coined by Ramsay and Richardson and has been included by the World Health Organisation (WHO) in their International Classification of Diseases (ICD), since 1969. The currently version ICD-10 lists ME under G.93.3 - neurological conditions. It cannot be emphasised too strongly that this recognition emerged from meticulous clinical observation and examination. (Hooper 2006, [online])'


Myalgic Encephalomyelitis (ME): a review with emphasis on key findings in biomedical research by Professor Hooper 2006, printed in the BMJ

‘Undoubtedly the perverse use of chronic fatigue syndrome, to impose a psychiatric definition for ME/CFS by allying it to fatigue syndromes, has delayed research, the discovery of effective treatment(s), and care and support for those suffering from this illness

I would propose that the use of CFS should now be abandoned and that, following the Minister of Health’s assurances, the WHO definition is now accepted and used in all official documentations. The excellent work on the biological aspects of ME, already carried out by several leading research groups, now requires significant funding.’


*O* MEitis. A slender string to our bow by Gurli Bagnall

"From a scientific point of view, "opothy" does not hold water."


*O* Are Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Synonymous Terms? by Byron Hyde MD

Byron M. Hyde, M.D. Presented at 1998 International ME Conference, Sydney

A Record of Myalgic Encephalomyelitis Epidemics: A basic factor about ME throughout its history is that it does occur in epidemics. This fundamental aspect is essential. This fact conveys, among other things, the infectious and contagious nature of our disease. These characteristics of our disease are strictly avoided by the health agencies. It could be said that a strategic aspect of the health agency policies has been to conceal the history of ME.

An important chapter in the Encyclopaedia of Myalgic Encephalomyelitis contains a very fundamental disclosure of ME by documenting the outbreaks from 1934 to 1990. This chapter is the result of work carried out over many years by Drs. Acheson, Henderson, Shelokov and Parish. We are profoundly grateful to these doctors and their vigilance over the years to evaluate and keep track of these outbreaks.

"It is thus important that those that attempt to define any disease or illness to have long term clinical experience with patients with this illness. There is simply no place for the bureaucrat in defining illness. All definition of epidemic or infectious illness must be based upon persistent clinical examination of the afflicted patient, an understanding and exploration of the environmental factors producing that illness, and pathophysiological examination of tissue from those patients. For similar reasons, I believe that the inclusion of psychiatrists in the defining of an epidemic and obviously disease of infectious origin, simply muddies the water for any serious understanding of that disease. The UK definition of CFS was developed by a panel of physicians who were primarily psychiatrists, with few if any clinicians who had ever looked at an epidemic of CFS. A serious attempt must be made to look at epidemic disease as and where that disease starts. This has not been done by those who have defined CFS in the USA nor in the United Kingdom and this factor alone is probably the single greatest reason why we know so little about CFS today that we did not know in 1984."

Myalgic Encephalomyelitis (M.E.) This is a term used to describe an epidemic and sporadic disease process that is associated with a chronic debilitating illness of children and adults. Variants of this term M.E. were first used following a series of repeating epidemics starting in May 1955 in the Royal Free Hospital in London England. New outbreaks of this illness continued until 1958 in various London area hospitals. M.E. and these epidemics are well described by A. Melvin Ramsay in his book Myalgic Encephalomyelitis and Post-Viral Fatigue States.

Dr. A. Melvin Ramsay followed many of those who fell chronically ill during this 1955-1958 epidemic period for up to 34 years, until he died in 1989. This type of epidemic continuity proved to be quite characteristic of the M.E. epidemics that occurred in Akureyri in 1947-1949, in the Royal Free epidemics and in the North American epidemic period that extended from 1984 to 1988 (In 1983 in New Zealand where this pan-epidemic may have originated. All of these epidemics occurred in the late summer and autumn, decreasing in winter, with a new small peak of new female cases at Christmas in the Northern Hemisphere. The numbers of new cases would then rapidly fall off as the winter months progressed, only to reappear in the late summer again.

Monthly pattern of onset of new M.E./CFS illness. This M.E. type of epidemic that was first observed and documented in detail in the summer of 1934, Los Angeles County General Hospital Epidemic by Dr. Alexander (Sandy) Gilliam, is not uncommon. Over 60 similar but often less known epidemics have been documented by Dr. J. Gordon Parish.

These epidemics have been associated with certain particular characteristics. Onset can be at any season but most frequently occurs in summer or autumn. There appears to be a high prevalence of epidemics or clusters in schools, hospitals and institutions involving hospital staff. The usual incubation period of the triggering illness is 4-6 days. The second and third phases of the illness are usually always different in nature from the onset illness and usually become apparent within 1-4 weeks.’


MEitis or MEopathy? By Ciaran Farrel

"The name change "MEitis - MEopathy is all a matter of politics."


*O* Note on the term "Myalgic Encephalomyelitis" By Eileen Marshall and Margaret Williams

"Despite the relentless financial, psychosocial and political engineering that seems to underpin the current determination to remove the term "myalgic encephalomyelitis" (ME) from the medical lexicon (where, based on accurate published evidence of the nature of the disorder, it has resided for the last half century), the present proponents of its demise have failed to produce any evidence-base to support their clamour for its removal and its replacement by the less specific term "myalgic encephalopathy".

Such intentional dilution of terminology is puzzling, since it is clearly not the case (as they proclaim in support of their favoured term) that there is no published evidence of inflammation of the central nervous system (CNS) in ME / ICD-CFS --- see for example "Prevalence in the Cerebrospinal Fluid of the Following Infectious Agents in a Cohort of 12 CFS Subjects: Human Herpres Virus-6 and 8, Chlamydia Species, Mycoplasma Species, EBV, CMV and Coxsackievirus" Susan Levine MD. JCFS 2001:9 (1-2):41-51 The abstract states:

"Over the last decade a wide variety of infectious agents has been associated with the chronic fatigue syndrome (CFS) as potential etiologies for this disorder by researchers from all over the world. Many of these agents are neurotrophic and have been linked previously to other diseases involving the central nervous system (CNS). Because patients with CFS manifest a wide range of symptoms involving the CNS as shown by abnormalities on brain MRIs, SPECT scans of the brain and results of tilt-table testing, we sought to determine the prevalence of HHV-6, HHV-8, EBV, CMV, Mycoplasma species, Chlamydia species and Coxsackie virus in the spinal fluid of a group of patients with CFS. We found evidence of HHV-8, Chlamydia species, CMV and Coxsackie virus. Attempts were made to correlate the clinical presentations of each of these patients, especially the neurological examinations and the results of objective testing of the CNS, with the particular infectious agent isolated. It was also surprising to obtain such a relatively high yield of infectious agents on cell free specimens of spinal fluid that had not been centrifuged"."


*O* The Terminology of ME & CFS by Professor Malcolm Hooper (undated)

The term BENIGN MYALGIC ENCEPHALOMYELITIS was first introduced in the UK in 1956 by a former Chief Medical Officer (Sir Donald Acheson) and not by Dr Melvin Ramsay as is sometimes claimed. The word "benign" was used because it was thought at the time that the disorder was not fatal (as poliomyelitis could be, with which it had some similarity), but it was quickly realised by clinicians that ME was not a "benign" condition, as it has such high morbidity (ie. such a lot of suffering and ill-health), so by 1988 clinicians had stopped using the word "benign" and referred to it as ME, the first to do so being Dr Ramsay.


Unfortunately, it was decided by the pathologists that 'CFS is the modern name for M.E.' and so the term CFS was used for the inquest instead of the correct name of M.E. But despite that, this inquest shows very clearly that the name Myalgic Encephalomyelitis IS correct (as opposed to 'CFS' or Myalgic 'Encephalopathy') because there is clear evidence of inflammation of the spinal cord as well as that Myalgic Encephalomyelitis is a debilitating neurological illness which can sometimes be fatal.

Today, 13th June 2005, the inquest into the death of Sophia Mirza was held in Brighton Coroners Court, England. The cause of death was stated as 'acute renal failure as a result of CFS' The pathologist also said - 'ME describes inflammation of the spinal chord and muscles. My work supports the inflammation theory. There was inflammation in the basal root ganglia.'

*O* Inquest Implications by Eileen Marshall and Margaret Williams, 16 June 2006 [On the inquest into the death or Sophia Mirza.]


Dr Bruce Carruthers Damning Comments on the use of the term Myalgic 'EncephalOPATHY' in place of the term Myalgic Encephalomyelitis By Kevin short

"About your request for my thoughts on encephalopathy- The Politics around this are horrendous, and the motive for any name change would seem to have less than the good of mankind at heart. I would not favour any kind of name change, since -itis is well established in the name ME, and there is no good reason for changing it, since -opathy would not reduce our state of ignorance re ME but serve to further confuse everyone-  perhaps that is one of the motives behind the suggestion."

[Dr Bruce Carruthers, April 2005.  Quoted with permission from a private email to Kevin Short of /M.E. Support /*/*Norfolk** **UK*/*].

*I do not think I can add anything more devastating to the alleged rationale for individuals/charities using this term. It must surely now be incumbent upon such individuals/charities to justify how they can possibly be representing the best interests of M.E. sufferers when they are substituting the dubious, unrecognised and damaging name '...opathy' for one ('...itis') which is endorsed by the WHO and eminent physicians like Bruce Carruthers. Readers might also wish to examine other questional actions of such individuals/charities claiming - falsely in my view - to represent the interests of Myalgic EncephalomyELITIS (ICD-10 G93.3) sufferers.


Comments on the Name Change Proposal  from the ME society of America

The M.E. Society holds that studying any disease under "fatigue" is a priori inaccurate. There is no such disease as fatigue. It is a mere symptom of many diseases and a normal physiological state of healthy persons. Labeling a severe disease as "fatigue" was a government invention meant to obscure reality and lump the sick and the not sick together, and fatigue has grown into an industry that has been utterly destructive to patients. Monied disability insurers are one force behind this destructive Fatigue Industrial Complex, which has virtually taken over, even among the well meaning. Researchers in journal articles often lump and discuss the neurological condition ME/CFS with the label of "chronic fatigue" by placing "chronic fatigue" in titles of articles on even such topics as dysautonomia and orthostatic intolerance. This must stop.


SCIENCE or SEMANTICS? By Margaret Williams

"In spite of some overlap, FM and ME/CFS do not represent the same syndrome."


The power of labels By William A. Silverman


*O*Prevalence in the Cerebrospinal Fluid of the Following Infectious Agents in a Cohort of 12 CFS Subjects: Human Herpres Virus-6 and 8, Chlamydia Species, Myco[plasma Species, EBV, CMV and Coxsackievirus" Susan Levine MD. JCFS 2001:9 (1-2):41-51

Over the last decade a wide variety of infectious agents has been associated with the chronic fatigue syndrome (CFS) as potential etiologies for this disorder by researchers from all over the world. Many of these agents are neurotrophic and have been linked previously to other diseases involving the central nervous system (CNS). Because patients with CFS manifest a wide range of symptoms involving the CNS as shown by abnormalities on brain MRIs, SPECT scans of the brain and results of tilt-table testing, we sought to determine the prevalence of HHV-6, HHV-8, EBV, CMV, Mycoplasma species, Chlamydia species and Coxsackie virus in the spinal fluid of a group of patients with CFS. We found evidence of HHV-8, Chlamydia species, CMV and Coxsackie virus. Attempts were made to correlate the clinical presentations of each of these patients, especially the neurological examinations and the results of objective testing of the CNS, with the particular infectious agent isolated. It was also surprising to obtain such a relatively high yield of infectious agents on cell free specimens of spinal fluid that had not been centrifuged.


Further spinal fluid/Protemics research:

"Towards the accurate diagnosis of Gulf War Illness" (Proteomics research into GWI, FMS and CFS in cerebrospinal fluid)

Spinal fluid abnormalities in patients with chronic fatigue syndrome  Natelson BH, Weaver SA, Tseng CL, Ottenweller JE.CFS Cooperative Research Center and Department of Neurosciences, University of Medicine and Dentistry of New Jersey-New Jersey Medical School, Newark, New Jersey, USA. bhn@njneuromed.org

A clinical description of a disease resembling poliomyelitis seen in Adelaide". Pellew RAA. Medical Journal of Australia 1955;42;480-482

"A chronic illness characterized by fatigue, neurologic and immunologic disorders". D Buchwald, PR Cheney, DA Ablashi, RC Gallo, AL Komaroff et al. Ann Intern Med 1992:116:103-113

"Detection of intracranial abnormalities in patients with chronic fatigue syndrome". RE Schwartz et al. Am J Roentgeneology 1994:162:935-941

"A 56 year old woman with CFS". AL Lomaroff. JAMA 1997: 278:14:1179-1184

"Encephalomyelitis resembling benign myalgic encephalomyelitis".AGB Innes. Lancet 1970: 969-971

Neuromuscular Abnormalities in Patients with Chronic Fatigue Syndrome. Carolyn L. Warner, Reid R. Heffner, D Cookfair. In.. The Clinical & Scientific Basis of ME / CFS. ed.. B.M. Hyde J Goldstein, P Levine. pub. The Nightingale Research Foundation, Ottawa 1992

The Differential Diagnosis between Multiple Sclerosis and Chronic Fatigue Postviral Syndrome. Charles M. Poser. ibid

Polio Encephalitis and the Brain Generator Model of Post Viral Fatigue. Bruno RL et al Journal of Chronic Fatigue Syndrome. 1996:2: (2,3):5 27

A new clinical entity? Editorial: Lancet 26 May 1956

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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."

Paperback $18.95
Hardcover $22.95