Why it is in the best interests of all patient groups involved to reject and strongly oppose this misleading and counter-productive US proposal to rename ‘CFS’ as ‘ME/CFS’
Copyright © by Jodi Bassett* May 2008 taken from www.ahummingbirdsguide.com
Many of the patients given a diagnosis of Chronic Fatigue Syndrome (CFS) are very physically ill. 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 get your hands on even the most basic factually accurate information about ‘CFS’(and Myalgic Encephalomyelitis) that is NOT created by financial stakeholders or those who have been bought or misinformed by these same vested interest groups, 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.
This proposed ‘CFS’ to ‘ME/CFS’ name change is just another time-wasting diversion that these vested interest groups are hoping we will fall for, nothing more. It does nothing to deal with any of the real issues.
Don’t let yourself be the unwitting tool of unethical insurance companies through ignorance!
Background information; What is Myalgic Encephalomyelitis? What is ‘CFS’?
Myalgic Encephalomyelitis (M.E.) is a debilitating neurological disease initiated by a virus; an enterovirus. M.E. occurs in both epidemic and sporadic forms, over 60 outbreaks of M.E. have been recorded worldwide since 1934. 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). M.E. is a chronic/lifelong disease and in some cases M.E. is fatal.
M.E. has existed for centuries and was referred to with various different names (eg. Atypical polio), until the name Myalgic Encephalomyelitis was coined in 1956 in the UK. The term was invented jointly by Dr A Melvin Ramsay who coined this name in relation to the Royal Free Hospital epidemics that occurred in London in 1955 - 1957 and by Dr John Richardson who observed the same type of illness in his rural practice in the Newcastle-upon-Tyne area during the same period. It was obvious to these physicians that they were dealing with the consequences of an epidemic and endemic infectious neurological disease (Hyde 1998, [Online]) (Hyde 2006, [Online]). As M.E. expert Dr Byron Hyde MD writes:
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 (2006, [Online]).
In 1957, the Wallis description of M.E. was created. In 1959 Sir Donald Acheson (a former UK Chief Medical Officer) conducted a major review of M.E. In 1962 the distinguished neurologist Lord Brain included M.E. in the standard textbook of neurology. 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 in 1969 with the code G.93.3. In 1978 the Royal Society of Medicine held a symposium on Myalgic Encephalomyelitis at which M.E. was accepted as a distinct entity. The Ramsay case description of M.E. was published in 1981 (Hooper et al. 2001, [Online]).
The recorded medical history of M.E. as a debilitating organic neurological illness affecting children and adults is substantial; it spans over 70 years and has been published in prestigious peer-reviewed journals all over the world.
A review of early M.E. outbreaks found that clinical symptoms were consistent in over sixty recorded epidemics spread all over the world. It has also been confirmed that the epidemic cases of M.E., and the sporadic cases of M.E. each represented the same illness – and that modern day M.E. patients are also suffering with this same illness which was first documented in the 1930s. The damage to the brain indicted by the name ‘Myalgic Encephalomyelitis’ also continues to be documented in modern cases of M.E.
In short, Myalgic Encephalomyelitis is a well-documented, severely disabling, scientifically measurable and verifiable, acute onset, potentially fatal, distinct organic neurological disease initiated by a virus and linked in several significant ways to polio (Hyde 2006, [Online]) (Dowsett 1999a, [Online]) (Hyde 1998, [Online]) (Dowsett n.d.a, [Online]) (Hooper 2003a, [Online]) (Dowsett 2001b, [Online]).
‘CFS’ in contrast, is not a distinct disease.
Despite the fact that the new name and definition of CFS were created in a response to an outbreak of what was unmistakably M.E., this new name and definition did not describe the known signs, symptoms, history and pathology of M.E. It described a disease process which did not, and could not exist. As M.E. expert Dr Byron Hyde MD explains:
Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis. It is not. 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. 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. 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 and the more problematic it becomes (2006, [Online]).
The man-made financially motivated ‘CFS’ definitions describe no distinct patient group and so a diagnosis of ‘CFS’ is merely a wastebasket diagnosis; a misdiagnosis. What a diagnosis of ‘CFS’ actually means is that the patient has a gradual onset fatigue syndrome which is usually due to a missed major disease. i.e. the patient has:
a. Missed cardiac disease, b. Missed malignancy, c. Missed vascular disease, d. Missed brain lesion either of a vascular or space occupying lesion, e. Missed test positive rheumatologic disease, f. Missed test negative rheumatologic disease, g. Missed endocrine disease, h. Missed physiological disease, i. Missed genetic disease, j. Missed chronic infectious disease, k. Missed pharmacological or immunization induced disease, l. Missed social disease, m. Missed drug use disease or habituation, n. Missed dietary dysfunction diseases, o. Missed psychiatric disease. (Hyde 2006, [Online])
M.E. and ‘CFS’ are not the same. The two entities could not be more different.
M.E. is a well-defined distinct organic neurological disease which has exited for centuries. ‘CFS’ is a fictional and financially motivated man-made disease category, a scientific fraud, which defines exactly nothing. The suggestion that the mixed term ‘ME/CFS’ become the new name for ‘CFS’ makes no logical or scientific sense.
That this suggestion is scientifically inaccurate, misleading and illogical is only the start of the problem however.
So why is ‘ME/CFS’ being used more often?
Generally speaking, it seems like using ‘ME/CFS’ is just about popularity, very often, unfortunately. 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 creating and supporting ‘CFS’ researchers and ‘advocacy’ groups, by some well-meaning but misinformed people misdiagnosed with ‘CFS’ who don’t have M.E. as well as by some 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 it is really hard to see what the POINT is, of being a popular and/or well-funded ‘advocacy’ group (or individual) if what you are doing is harming the patient groups you claim to represent by catering primarily for the financial and legal well-being of big business or government.
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 MEitis. 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.’
3. "ME/CFS maintains "CFS," avoiding problems with insurance or disability claims."
This claim is outrageous. It is the bogus disease category of ‘CFS’ itself that was designed primarily to cause problems with insurance and disability claims, and it almost always succeeds!
‘CFS’ makes getting disability almost impossible, as there are no tests whatsoever that can be used to prove the existence of ‘CFS’ and because there is also so much ‘information’ available about how easily and successfully ‘CFS’ can be managed or even cured. The CDC (and all other) ‘CFS’ definitions define ‘CFS’ as a psychological illness – which many health insurance policies explicitly exclude. (This is the reason for the psychological bias of ‘CFS’– to evade or greatly limit insurance payouts. It is successful in evading /limiting claims all over the world.)
Several US M.E. advocates have explained that in the USA the disease name ‘CFS’ does not positively affect how a person gets or keeps disability. ‘CFS’ is not what is called ‘a listed impairment’ in the US Social Security System as illnesses like multiple sclerosis, Lupus and stroke, etc. are. There are no guidelines for assessment with ‘CFS.’ No one is judged ‘disabled’ for either Social Security or private insurance purposes ‘because they have CFS.’ Rather, the decision is made based upon ‘functional impairment.’ In other words, how do the symptoms that you experience affect your ability to perform and function? No matter WHAT we call the disease or condition, the symptoms and impairment of a particular individual DO NOT CHANGE because of a name change.
The question of continuity of a claim could also easily be addressed if a patient formerly misdiagnosed with ‘CFS’ were later properly re-diagnosed with M.E., or indeed cancer, or any other illness.
This is a specious argument, which aims to instil fear in patients that they might lose their disability so had better go along with the retention of ‘CFS’ in any new name. It’s just dishonest scaremongering.
This proposal just doesn’t make sense. The reasons given for supporting this name change by those pushing so hard for its acceptance seem to be just excuses, not reasons; this is of real concern. The supposed reasons given for it are illogical, misleading, and scientifically and historically incorrect. The whole campaign is misleading, dishonest and grossly unethical. This campaign clearly does not have concerns for patient welfare, ethics or scientific validity at its core.
So who does benefit from the ‘ME/CFS’ name change?
Whose interests does a ‘ME/CFS’ renaming primarily serve? 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 obfuscation. The groups that benefit from ‘ME/CFS’ are the same groups that benefited from the creation of ‘CFS.’
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’ into ‘CFS/ME’ and/or ‘ME/CFS’ 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. (i.e. symptoms, history, severity/disability etc.) with bogus information about ‘CFS’ while of course the entirety of the all important CONCLUSIONS given (i.e. aetiology, psychological status, improvement of symptoms, response to treatments and recovery rates) are drawn exclusively from non-M.E. patient groups, and from the most mildly affected physically and the most primarily psychologically ill members of these groups.
‘ME/CFS’ and ‘CFS/ME’ lets these vested interest 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 patients and patient groups.
This is why ‘ME/CFS’ articles and studies are even more dangerous in many ways than pure ‘psychological CFS’ ones. The issue is not that ‘ME/CFS’ just isn’t a very good solution that will not do much good, as many have been arguing. There is so much more than that at stake here. Not only will ‘ME/CFS’ not help, it can and will make things so much worse for us all. It will bury the truth about M.E. even deeper by hiding it in plain sight and make it harder than ever for anyone to separate M.E. out from the vague mess of ‘CFS’ or for those misdiagnosed as ‘CFS’ to be given a correct diagnosis and their basic right to appropriate treatment.
The ‘ME/CFS’ concept:
(a) is confusing
(b) is illogical,
(c) strongly reinforces the same misinformation which is the cause of our problem (i.e. that M.E. and ‘CFS’ are the same and that ‘CFS’ actually exists),
(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, by denying them appropriate diagnosis and treatment, 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 patient advocates using THE SAME TWISTED AND OBFUSCATING STRATEGY is not a good idea and is only going to further their interests instead of ours.
This isn’t just about terminology, it is about definitions and the involvement of vested interest groups
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 are of primary importance. Most often when the term ‘ME/CFS’ is used, it 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.)
The so-called ‘Fair Name’ campaign avoids a clear discussion of definitions; a fact which should send your internal alarm bells ringing all by itself. (It is always just as important to listen carefully to what groups like this DON’T say, as to what they do say.) It clearly has the disastrous CDC definition of ‘CFS’ at its core however in order to include all of the very varied patient groups the group claims to represent; everyone from patients with M.E. to patients with a vast array of unrelated psychological and non-psychological illnesses involving fatigue and ranging from very mild to very severe. The site also makes their support for the bogus CDC ‘CFS’ definition very clear when they say their goal is ‘to create a more equitable, realistic name for what the CDC years ago termed CFS.’ Although the ‘Fair Name’ group want to be seen as questioning the CDC in various ways, in fact it’s clear that they accept the CDC’s authority.
The reason so many of us are ridiculed, neglected, abused, belittled, laughed at, disbelieved, sneered at, accused of exaggerating or malingering or laziness by medical staff and by friends and family members etc. IS NOT BECAUSE OF THE NAME ‘Chronic Fatigue Syndrome’!
If ‘CFS’ had instead been given a neutral name, say ‘Reeves’ syndrome’ or ‘Holmes’ syndrome,’ our problems would still be exactly the same. Vested interest groups – helped in this task IMMEASURABLY by the creation of the bogus disease category of ‘CFS’ – would still be flooding the medical, political and media communities with lies and propaganda which could only have the end result of making us seem utterly pathetic and undeserving of any respect or sympathy and as if we didn’t have a leg to stand on scientifically speaking.
What else could anyone think about patients which have an illness that is mild and short lived, but which some patients pretend is severe because they ‘enjoy the sick role.’ What else could you think about an illness that despite claims by patients of physical abnormalities and despite considerable resources being wasted on it, has failed to show any consistent testable abnormalities at all? An illness that can’t be tested for or proven on any tests at all and so must be taken completely on faith. An illness that really only affects people with pre-existing emotional or behavioural problems. An illness where it has been proven that patients can recover easily with behavioural management techniques but only if they actually want to recover; which most don’t. An illness that has been proven to be psychological or behavioural but where patients would prefer to actually stay ill rather than to admit that they are mentally ill.
In hundreds of different ways, every media article and government press release about ‘CFS’ is filled with statements which make it very clear that this patient group should be treated with contempt, has no scientific validity and does not deserve the same respect as other patient groups. That is the constant message. Patients are not merely wrongly categorized as psychologically ill, it is so much more than that. It is a type of persecution; patients are talked about (and lied about) as if they were malingerers and deviants, as if they were beneath contempt and not worthy of even basic respect or medical care, or even any level of kindness or compassion – even from their own friends and family. Whatever ‘CFS’ had been called, these problems would be EXACTLY THE SAME. The cause of our problems is not the mere name ‘CFS’ as this campaign claims. The real issues are:
- The many different DEFINITIONS of CFS, which each define exactly nothing, and allow any number of very different and unrelated patient groups to be unscientifically treated as if they were one and the same because of the flawed man-made CFS disease construct.
- The involvement of financial and political vested interest groups in what should be an entirely scientific discussion.
- That all of the existing science about M.E. is being purposefully ignored by those in positions of power – both corporate and government – for their own convenience, and that the media is (with few exceptions) co-operating fully in this cover-up.
- That there is no such disease/s as ‘CFS’ and so every diagnosis of CFS is a misdiagnosis.
Millions of patients are being denied their basic rights to a correct diagnosis and treatment for their illness and their best chance to regain their health. These patients are also subject to appalling levels of abuse, neglect and mistreatment, even unto death in some cases, merely for financial gain. As Professor Malcolm Hooper explains:
In the 1980s in the US (where most of the costs of health care are borne by insurance companies), the incidence of M.E. escalated rapidly, so a political decision was taken to rename M.E. as "chronic fatigue syndrome", the cardinal feature of which was to be chronic or on going "fatigue", a symptom so universal that any insurance claim based on "tiredness" could be expediently denied. The new case definition bore little relation to M.E.: objections were raised by experienced international clinicians and medical scientists, but all objections were ignored (2001, [Online]).
Veteran US patient advocate Tom Hennessy explains that;
I would really like to steer people away from Rich Carson's site. Their stupid "fair name" petition is just a big sell-out to the insurance industry. In the US, ‘mental illness’ is covered by a lifetime maximum of only TWO years total disability, and yet, ‘physical illness’ is covered by policies that pay you up to 55% of your former salary until you turn 65 and are eligible for social security. It will cost billions of dollars if they admit the truth. That is the reason for this fake "fatigue" construct etc.
The problem is not the name, and it is also NOT simply that ‘CFS’ patients are being mistreated as or mistaken for psychiatric patients. Some of those patients misdiagnosed with ‘CFS’ actually do have psychological or behavioural illnesses. There is no such distinct disease/s as ‘CFS’ and ‘CFS’ is merely a man-made entity created for the benefit of financial vested interest groups – that is the real problem.
The infectious disease known since 1956 as Myalgic Encephalomyelitis already has a historically and medically correct name and definition and WHO classification. We also have clear definitions and names for Fibromyalgia, post-viral fatigue syndromes, PTSD, burnout, Lyme disease, Candida, Adrenal exhaustion, cancer, depression, athletes over-training syndrome and each of the other illnesses commonly misdiagnosed as ‘CFS.’
The only thing that makes any sense is for us to fight together to get rid of ‘CFS’ in name and definition, and to have patients correctly diagnosed with and treated for with whichever illnesses they actually have, including M.E., in a scientific and ethical manner – without any self-interested interference by financial vested interest groups.
Problems with the whole approach of so-called ‘Fair name’ campaign
How ‘fair’ is it that the group chooses a name first and THEN asks patients to vote on it? Isn’t that completely backward? Isn’t the whole point of voting about having a choice? But even if patients were given a real vote, how ‘fair’ would this be considering that the group presents a completely warped version of reality as being factual and avoids giving patients even the most basic pertinent facts? And what about the fact that negative comments and objections to this campaign are rejected or deleted from the ‘Fair name’ message board – how ‘fair’ is that?
So much about this campaign is seriously off. None of the important issues are even mentioned. It’s all shiny on the surface, and they repeat certain emotive keywords and phrases a lot and the tone of voice is very soothing... but there is nothing at all useful, meaningful or factual underneath it. As M.E. advocate Lesley writes:
I just received a Newsletter from MERUK (formerly ‘MERGE’) which included a piece by Cort Johnson, backing the Fair Name campaign. It sounds so reasonable! So does the Fair Name website! They seem so moderate, willing to compromise etc. The name 'ME/CFS' is put forward as inclusive and conciliatory, as though they bring together all the warring factions in harmony. They make their opponents seem unreasonable, unrealistic and hot-headed. But it is based on wrong premises! Their claims are all bogus! There is a skill which some people have, of seeming to occupy the centre ground, of adopting a calm, reasonable tone of voice so that any disagreement will seem unreasonable and shrill and pugnacious. Simon Wessely has this skill. If one reads his writing, without thinking about the issues, he sounds reasonable and persuasive. The Fair Name campaign seems to have this skill also.
M. Beck, a US M.E. advocate since 1983, writes:
Fear not! "ProHealth/ImmuneSupport" message boards are here, along with all the "experts and advocates" to tell you what to think and do! (If you disagree, you are "negative", their rhetoric implies.) Dialogue on this new "name change" is censored and controlled. This is an extremely well-engineered effort, probably designed by the CDC public relations arm in consort with corporate PR of some entities. Those with corporate and/or government background will recognise it for what it is. We must do more than criticise this lethal move. And it IS lethal
I do not get why people are so enamoured of "experts", whether it is "expert researchers or clinicians", or "expert advocates." It is like falling for advertising, where the most familiar brand name is always "good". It is what they DO, not the familiar "expert" name, that counts.
The entire concept of a "New Name" is wrong. There is no need for a "new name" for an "old falsehood". Myalgic Encephalomyelitis has a name, a definition, and an ICD code. There are 2 "subgroups" – ME’itis, and NOT-ME’itis. That is the long and short of it. Shame! Shame! Shame! upon those who know better and yet support this sham in the weak excuse of "better than CFS" when the truth is self-interest and a lack of guts.
M.E. advocate John Anderson adds that:
It’s called informed consent, but we are not being fully informed. All the facts are being hidden just as they were when CFS was invented to hide "the awful truth" about Myalgic Encephalomyelitis. The name change advisory board says that the acronym "ME/CFS" is a "medically correct" name to replace CFS, but it will still have a false CFS fatigue definition distorting research, and CFS will still be part of the name. How could anyone believe this unimaginative hype that CFS will disappear when it is clearly part of the acronym/name?
It is apparent that the name change committee does not wish to look beyond the distorted findings of the heterogenous CFS studies which inevitably produce inconclusive results, so who do they really represent? Why do politics dictate medical inquiry? How many more lives will it take? Please stop and think before you get caught up supporting this mess. Stop the madness! Speak up! Don't let them get another dollar that should go to urgently needed research and support! Patients not only suffer severe illness and pain, they have been unnecessarily traumatised with disbelief, neglect, abuse, poverty, isolation, loss of family and friends. This has to stop.
This so-called ‘Fair name’ campaign is concerned solely with surface appearances and with merely appearing to care and appearing to want to do the right thing. If anything this is a campaign which entrenches the disastrous use of the name and definition of ‘CFS’ (and the involvement of vested interest groups) even further, while also further damaging the credibility of Myalgic Encephalomyelitis. Even the ‘Fair name’ name itself is a perfect textbook example of PR campaign or politician speak – what better name for an entirely UNFAIR proposal!
The entire ‘Fair name’ campaign reads far more like a slick marketing exercise by government or by the insurance or pharmaceutical industry than a genuine patient and doctor driven advocacy campaign which aims for real and ethical change. Could it be that there is a very simple reason for that?
It seems more than likely. As one M.E. advocate commented recently: ‘When it comes to the so-called ‘Fair name’ campaign in the US, the only conclusion that makes any sense at all is that the campaign is not harmlessly or innocently mistaken or misguided, but that it involves vested financial interests.’
If the ‘Far name’ campaign is so terrible and unethical, why is it being supported by that group of US ‘CFS’ experts?
That is a very good question. Another good question is why a small number of US ‘CFS’ ‘experts’ are yet again being given the power to make changes that will negatively affect patients with M.E., and those misdiagnosed with ‘CFS’ who have other illnesses, all around the world for many years or even decades to come?
But isn’t the gradual approach the only way we will get anywhere?
The so-called ‘gradual approach’ promoted by the ‘ME/CFS’ name change group – along with the bogus subgroups of ‘CFS’ or ‘ME/CFS’ idea – just lets the vested interest groups have it both ways, yet again. It’s a sham. Patients are to be mollified by the press releases saying ‘patients are physically ill’ and ‘we’re looking at sub-groups and doing real science’ while in reality patients are being mistreated in the same ways as previously and yet again many different patient groups are subsumed under a vague and unscientific umbrella term and definition and the only studies conducted are those flawed in ways that suit vested interests.
If you’re in the US and you think that ‘ME/CFS’ is at least a small improvement from ‘CFS’ and a step in the right direction, you must look first at what damage ‘ME/CFS’ has done in other countries. The countries in which the ‘ME/CFS’ concept is commonplace are those in which patients are subject to the most shocking abuse; far worse than that which occurs now in the US. As M.E. advocate Lajla Mark explains:
Linking CFS to M.E. has been tried for decades in parts of Europe and Australia with a devastating effect. It has been like writing out a blank check to the psychiatrists. In other parts of the world M.E. is already a recognized disease, and it is in fact the linking of CFS to M.E. that has created the terrible problems there.
For information on the sort of extreme abuse of ‘ME/CFS’ patients which occurs in the UK and the Netherlands and to a lesser extent in Australia – including ill children being forcibly removed from their homes, children being thrown in swimming pools or denied food or family contact to uncover their ‘faked’ symptoms, forced exercise and CBT programs which have led to severe disability and even death, and people being illegally sectioned under the mental health act, and so on – please see: What is M.E.? Extra extended version.
This same so-called ‘gradual approach’ strategy has been tried and tried again for the last 20 years and it has failed utterly. We are worse off now than 20 years ago. Trusting that if we compromise ourselves now (by mixing M.E. and ‘CFS’ even further) that we will be rewarded with something that we want to happen but which inevitably severely 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. and ‘CFS’ when doing so means they lose BILLIONS of dollars (and that they have to admit that they have acted dishonestly and criminally).
This nicey-nicey, very passive and ‘gradual’ approach is appealing to many patients (who are in many cases severely ill, traumatised and abused) but it has no chance of success, which is exactly why it is being pushed so hard by the vested interest groups involved and their lackeys. The only thing it may well have success with is wasting another 10 or 20 or more years.
Things are very bad now for patients in the US, that is undoubtedly true. But they can become so much worse, and they undoubtedly will if this campaign is successful. There is ample evidence that this renaming of ‘CFS’ as ‘ME/CFS’ will only make things far worse in the US, if you only take the time to look.
In conclusion...
This US so-called ‘Fair name’ proposal that the name of ‘CFS’ should be changed to a variation on the term M.E. – despite the fact that the term is completely scientifically inaccurate for the vast majority of the patients involved and that this term has already been TAKEN by a very well-defined (and scientifically sound) patient group for over 50 years – merely because it ‘sounds a lot more serious and credible’ makes a mockery of legitimate advocacy, and of science, logic and ethics.
It just doesn’t make sense to support this ‘ME/CFS’ name change and all the reasons given for doing so just don’t add up. 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 the polio outbreaks (and vaccine), how much we know about M.E. now and how much we knew way before ‘CFS’ was invented, who is behind ‘CFS’ and why, and all the needless deaths, abuse and mistreatment of so many different patient groups knowingly caused by the ‘CFS’ scam) are a far more compelling true story than any wishy-washy, confusing and contradictory tales defending the bogus disease category of ‘CFS’ or trying to talk up the illogical ‘ME/CFS.’
If you look at it logically – it really is hard to come to any other conclusion than that this ‘ME/CFS’ campaign can only impede our fight for justice and recognition. This campaign is about as far from being ‘fair’ and ‘medically and diagnostically correct’ as you can get. Please, don’t fall for a very slick and very well-funded marketing or propaganda campaign designed to keep us all in this hell even longer. That is all this is.
Don’t let yourself be the tool of insurance companies and the CDC and others with vested interests counter to the interests of patient welfare and science.
The US ‘CFS name change proposal’ is nothing more than a political stunt; designed to appease (justifiably) angry patients and make them feel like something is being done and that progress is being made finally – but not to actually effect any real change. If you really want to stop the abuse, neglect and lies, and to get rid of ‘CFS’ in name and definition, the worst thing you could do is to support this campaign.
This never was, and isn’t now, a medical fight. It is entirely a political fight. 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. As M.E. advocates Greg and Linda Crowhurst explain:
The greatest threat right now comes not just from the psycho-corporate lobby; they are so easily exposed. It comes from the moderates, the lukewarmers, the compromisers right at the centre; who cannot see the damage they are doing by negotiating the truth away. Because the psycho/corporate lobby's truth is a relative one (to a political agenda), it can be infinitely flexible, so the goal posts can be constantly moved about by the corporate-psychiatric lobby and the real truth perverted, especially by the brilliant infiltration of patient movements.
You simply cannot sit safely on the fence believing that you are being reasonable. There is no balance to be struck between psycho-corporatism and a true biomedical approach.
We really have to start to learn to see past the SUPERFICIAL and be far more critical about which information we accept as being scientifically sound, relevant to us, and in our best interests. We have to start being far less trusting that just because a group says it is working for the benefit of patients and isn’t just a front for a financial vested interest group, that this is actually true. We have to stop just blindly following and trusting authority. It is NOT just psychiatrists that have made themselves the tools of unethical insurance companies! Just because someone is not a psychiatrists it does not mean they are necessarily legitimate scientists or advocates etc.
You have to choose. Do you want real and uncompromising patient- and science-focused ethical activism that is concerned with nothing else but achieving justice for patients finally....or, do you want soothing, comforting, dumbed-down sound-bytes full of lies, propaganda and superficial spin (often produced by groups and individuals who have SOLD US OUT to vested interest groups) that might make you feel good in the short term, but will not only never stop or even lessen any of the abuse, but actually make it far worse? Do you actually want to start doing what it takes to stop the abuse... or do you want easy answers and a comforting pat on the head by ‘authority’? There really is no middle ground. We have to stand up for ourselves, and for what is right; not just what is popular or easiest. If we don’t do it nobody else will, and this will NEVER END.
If you’re sitting on the fence, apathetic, happy to compromise on the facts, claiming to be apolitical, or you’re ignorant of the basic facts your actions are NOT merely having a neutral effect. If you aren’t part of the solution, if you aren’t supporting real activism and standing against vested interest groups and their fake activism ploys, if you haven’t educated yourself about the medical and political and historical reality of the situation..
...then you are part of the problem. No matter what your intentions are, you’re actually helping our abusers to abuse us – and that’s even sicker than any of us are. It just has to stop.
So where do we go from here? What does real activism involve? What do we need to start doing?
1. It is time that M.E. patients fought for authentic Myalgic Encephalomyelitis in name, definition and World Health Organization classification, without compromise.
2. It is time that everyone misdiagnosed with ‘CFS’ rejects this misdiagnosis totally, and is finally given the chance of a correct diagnosis and correct treatment. (If you have a ‘CFS’ misdiagnosis and you don’t have M.E., you are choosing to keep yourself in this ‘CFS’ nightmare entirely voluntarily! Even if you don’t want to try to improve things for others, save yourself at least, now.)
3. It is also time that we all fought together 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.
4. It is also time that we all fought together to educate others, most importantly OTHER SUFFERERS. We currently have only a tiny minority of the medical, scientific, legal and other potentially supporting professions, or the public – or the patients affected – on our side and aware of the basic facts. The only way change will occur is through education and people simply refusing to accept what is happening any more.
So PLEASE help to spread the truth about M.E. and about the bogus disease category of ‘CFS.’ Do as much as you can to educate fellow patients especially. Education is key. It is the only way we’ll get the numbers we need to prevail finally.
Let’s also join together to fight as hard as we can against this sham so-called ‘Fair name’ campaign and stop it succeeding. Let’s have some SUCCESS finally and start doing all the things that these unethical vested interest groups are hoping we WON’T do, rather than just making their jobs easier for them.
We can’t fight hard, many of us are too ill for that, but we can and must fight smart.
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