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Problems with the use of 'ME/CFS' by M.E. advocates 
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Problems with the use of the term 'ME/CFS' - Summary
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Copyright © by Jodi Bassett, March 2008
Taken from www.ahummingbirdsguide.com
Myalgic Encephalomyelitis (M.E.) is a debilitating neurological disease which was formally classified as an organic neurological (CNS) disease in the World Health Organisation’s International Classification of Diseases in 1969 with the code G.93.3.
M.E. is a distinct, scientifically measurable and testable, acute onset, organic neurological disease. ‘CFS’ in contrast, is not a distinct disease. The man-made financially motivated ‘CFS’ definitions describe no distinct patient group. ‘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 far more common.
Many of those M.E. advocates who use the term ‘ME/CFS,’ say, (correctly!) that the distinct neurological disease M.E. and the man-made bogus disease category of ‘CFS’ are NOT the same. But they then often 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), and is defined by severe fatigue...’ etc. which incorrectly imply that the name and definition of ‘CFS’ is synonymous with authentic M.E.
‘ME/CFS’ advocates often (bizarrely) pour scorn on the Wessely school’s use of the term ‘CFS/ME’ and complain about how ridiculous it is that anyone could think that ‘ME/CFS’ and ‘CFS/ME’ were the same thing. You also sometimes read comments like; ‘This recent (M.E.) CFS study showed that patients had....’ which implies again, that ‘CFS’ is just another name for M.E.
It’s crazy! You just 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 or to get the points across that we desperately need to. Using these terms CONTRADICTS whatever else you say about M.E. and ‘CFS’ not being the same. It makes what you are saying completely nonsensical and illogical.
That’s only the start of the problem however.
Why is ‘ME/CFS’ being used so much more often?
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 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?
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;
- 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 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.).
- 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 with a short explanation included in each text. 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.
- 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. 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.
- 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. It reinforces some of the most harmful myths about M.E. It does not justify the use of ‘ME/CFS’ by genuine M.E. advocates.
For every problem ‘ME/CFS’ supposedly solves, it creates many more far worse problems, and these same primary problems can all be solved simply in other ways that have NO HUGE DOWNSIDES!
So who does benefit from Myalgic Encephalomyelitis being mixed with ‘CFS’?
That is the real question we should all be asking. The answer of course is, yet again, powerful financial vested interest groups such as the medical insurance industry, the vaccine industry, the government and others who are directly saving themselves millions or even billions of dollars through this ‘CFS’ and ‘ME/CFS’ obfuscation.
It is hardly a coincidence that Professor Simon Wessely – the most powerful and influential of the group of doctors who have made themselves the tools of insurance companies – is the person credited with inventing the mixed term ‘CFS/ME.’ The mixing of M.E. and ‘CFS’ in this way serves vested interest groups well. This is why so many of the very worst government reports (and so on) in the UK, Australia and the Netherlands which talk about patients as if they were mildly ill malingerers who could easily improve if not recover from their ‘fatigue’ if only they could be convinced to try CBT or GET, and so on, (a) often use terms such as ‘CFS/ME’ or ‘ME/CFS’ in the titles and throughout and (b) very often mix in some of the facts about M.E. (ie. symptoms, history, severity/disability etc.) with bogus information about ‘CFS’ while of course the entirety of the all important CONCLUSIONS given (ie. aetiology, psychological status, improvement of symptoms, response to treatments and recovery rates) are drawn exclusively from non-M.E. ‘CFS’ patient groups.
‘ME/CFS’ and ‘CFS/ME’ lets these groups have it both ways. They get to continue happily with their unscientific and unethical ‘CFS’ obfuscation agenda, and they get to do so with far less opposition from the patients they’re harming, or even with the support of some of these patient groups. This is why articles and studies which mix together facts about M.E. and ‘CFS’ are even more dangerous and harmful in many ways than pure ‘CFS’ ones.
The ‘ME/CFS’ concept: (a) is confusing, (b) is illogical, (c) strongly reinforces the same misinformation which is the cause of our problem (ie. that M.E. and ‘CFS’ are the same), (d) benefits the interests of the same vested interest groups which benefit from ‘CFS’ in the exact same way, (e) reinforces the position of vested interest groups that ‘CFS’ is a real disease and that their bogus ‘CFS’ work/research is scientifically valid, (f) does nothing to counter the real problems which are the definitions of ‘CFS’ and the involvement of vested interest groups in what should be a purely scientific discussion, (g) greatly reduces the credibility of M.E. by aligning it with the bogus disease category of ‘CFS,’ (h) lessens the impact of the legitimate facts about M.E., (i) can work to cut M.E. off from its 70 year history, previous case studies, research and definition, and its correct WHO classification and so on; just as ‘CFS’ does, (j) harms M.E. patients and those misdiagnosed with ‘CFS’ who don’t have M.E. in the same way ‘CFS’ does, and (k) holds back the fight for justice and recognition of authentic neurological Myalgic Encephalomyelitis immeasurably.
The mixing of M.E. and ‘CFS’ was invented by these vested interest groups and it is a tool they use to good effect and as much as possible. Clearly, legitimate M.E. advocates using THE SAME TWISTED AND OBSFUCATING STRATEGY is not a good idea and is only going to further their interests instead of ours.
What can M.E. advocates learn from how other diseases have gained recognition and justice finally?
Us using ‘ME/CFS’ now is as short-sighted as it would have been for HIV and AIDS activists years ago, when the name was "Gay Related Immune Deficiency Syndrome’ or GRIDS, to have pushed for the acceptance of ‘HIV/GRIDS’ or ‘AIDS/GRIDS.’ Or if multiple sclerosis advocates had pushed for the acceptance of MS/Hysterical paralysis years ago instead of just MS. People pushing now for the so-called ‘compromise’ of ‘ME/CFS’ is just the same – just as unwise – except that ‘ME/CFS’ is far, far worse.
This is because our problem isn’t just that the term ‘CFS’ is offensive and inaccurate but that the term ‘CFS’ is inextricably linked, and synonymous with the DEFINITIONS of ‘CFS’ and that this fictional ‘CFS’ disease construct is, along with the unethical involvement of groups with financial vested interests in what should be a purely scientific discussion, the cause of our entire problem!
If the aforementioned groups had not chosen to fight hard for what was scientifically correct and right, instead of settling for the same sort of unnecessary hijacking of reality that ‘ME/CFS’ advocates are suggesting… then who knows how much this may have held these patient groups back, or for how many years or decades their positive outcomes may have been delayed because of it?
Successful advocacy campaigns have achieved success in the past through guts, determination, a willingness to fight for the facts and what is scientifically right, refusing to compromise (or sell) 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. Having said that, very often, advocates that have compromised with the terminology have also compromised and warped the definition of M.E. too. So very often, where there’s smoke there’s fire!
When people use the term ‘ME/CFS’ it should set alarm bells ringing for you to be very wary that they haven’t also ‘compromised’ and warped the definition of M.E. and the known scientific facts about M.E. and that they don’t now consider people with Fibromyalgia, various post-viral fatigue syndromes or Lyme disease as ‘ME/CFS’ patients or as so-called ‘ME/CFS sub-groups’ or support any other of the ‘CFS’ myths as relating to M.E. 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.
(The same applies to the terms ‘CFS/ME,’ ‘CFIDS’ ‘and Myalgic ‘Encephalopathy’ etc.)
In conclusion…
‘ME/CFS’ just doesn’t make sense. Why weaken our position so much for no good reason? – because make no mistake, the unadulterated facts about M.E. (the outbreaks of M.E. and the links to polio outbreaks (and the polio vaccine), how much we know about M.E. and how much we knew even before 1988, who is behind ‘CFS’ and why, and all the needless deaths and abuse knowingly caused by the ‘CFS’ scam) are a far more compelling true story than any wishy-washy and contradictory tales defending ‘CFS’ or ‘ME/CFS.’
We have to learn to see past the SUPERFICIAL and be far more critical about which information (and advocates and groups) we accept as being scientifically sound, relevant to us, and in our best interests too. The fact that an article might merely mention some facts about M.E. along with a lot of ‘CFS’ propaganda, or say that ‘CFS’ or ‘ME/CFS’ is ‘real’ or ‘is not psychological’ or merely mention some physical abnormalities or implicate various viruses in some way, or use the term ‘ME/CFS’ or ‘CFS/ME’ is nowhere near good enough. It isn’t at all even a step in the right direction. (Most of the very worst articles and reports do many or even all of these things!)
Many supporters of ‘ME/CFS’ have a tie to the big vested interest groups involved, while others are motivated by their own vested personal interests. Undoubtedly, some M.E. patients are simply too severely ill and disabled to do more than very basic reading or to engage in any type of critical thinking and so have been persuaded to support ‘ME/CFS’ by other advocates they’ve trusted to steer them in the right direction – and have had that trust cruelly abused. There are no doubt many different reasons for the rise in ‘ME/CFS.’ But regardless of the different motivations, the results will be just the same unfortunately. That’s the problem.
If you open your mind and forget for a minute about how commonly ‘ME/CFS’ is used and about all the justifications you’ve been given for it – and look at it logically – it really is hard to come to any other conclusion than that ‘ME/CFS’ can only impede our fight for justice and recognition.
The time for hoping for non-confrontational gradual change, compromising ourselves for our abusers and trying endlessly to work within the completely bogus ‘CFS’ framework ON THEIR TERMS has to be over. 20 years is enough. There has been more than enough needless death and abuse. The definition of INSANITY is doing the same thing over and over and expecting a different result…
It is time that we fought for authentic Myalgic Encephalomyelitis in name, definition and World Health Organization classification, without compromise. It is also time we all fought for the bogus financially motivated disease category of ‘CFS’ to be completely abandoned – without compromise – for the sake of every patient group involved; M.E. patients and all those misdiagnosed with ‘CFS’ who do not have M.E. alike.
Let’s do exactly what these vested interest groups are hoping we WON’T do!
A final plea: It is never to late for YOU to abandon ‘ME/CFS’ and to start fighting for M.E. in name and definition. We need you fighting hard and strong for M.E., yesterday! Any type of blame etc. for the past is irrelevant and unhelpful. What matters is now, and stopping things becoming even worse. The need is so urgent.
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Relevant quotes by M.E. experts and advocates
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‘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 M.D. 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 M.D. 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 M.D. 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
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 M.D.
To see more quotes, see the full-length version of this text.
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