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’

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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’

Copyright © by Jodi Bassett* May 2008 taken from www.ahummingbirdsguide.com

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 and by Dr John Richardson. It was obvious to these physicians that they were dealing with the consequences of an epidemic and endemic infectious neurological disease. As 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 conducted a major review of M.E. In recognition of the overwhelming amount of compelling scientific evidence available, M.E. was formally classified as a 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 M.E. at which M.E. was accepted as a distinct entity. The Ramsay case description of M.E. was published in 1981. 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.

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.

‘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. As M.E. expert Dr Byron Hyde MD explains:

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:

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. 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 if what you are doing is only harming the patient groups you claim to represent.

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:

Let’s look at the claimed reasons for this choice one by one.

This claim is just ridiculous. As Professor Malcolm Hooper explains:

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. The bogus disease category of ‘CFS’ is as far from being ‘medically and diagnostically correct’ as it is possible to be. The two terms describe completely different entities and cannot both be correct.

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.

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 – but it makes the acronym meaningless. 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 an acutely acquired illness initiated by a virus infection which is characterised by post encephalitic damage to the brain stem. 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.

Do not be fooled by the 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 and researchers do not support the name change from Myalgic Encephalomyelitis to ‘Myalgic Encephalopathy.’ The Committee for Justice and Recognition of Myalgic Encephalomyelitis explain:

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; one of the few important protections patients have. The term ‘Myalgic Encephalopathy’ is a political creation with no scientific validity, just as ‘CFS’ is. It is a trap. This loss of the correct WHO classification through a name change is something that patient groups MUST do everything in their power to stop if they wish to stop the already severe abuse and mistreatment becoming even more entrenched and legitimised.

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!

This whole proposal just doesn’t make sense. The reasons given for supporting this name change by those advocates pushing so hard for its acceptance seem to be just excuses, not reasons; this is of real concern.

Whose interests does ‘ME/CFS’ 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 etc. who are saving themselves 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.

The terminology is often used interchangeably, incorrectly and confusingly. But the DEFINITIONS of M.E. and ‘CFS’ are very different and distinct. 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 ‘Fair Name’ campaign avoids a clear discussion of definitions. 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. 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 endless 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 and must be taken completely on faith. 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, as 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 primary cause of our problems is not the mere name ‘CFS’ as this campaign dishonestly claims. Why is this all happening? In short, it’s all about money. As Professor Malcolm Hooper explains:

Veteran US patient advocate Tom Hennessy also explains that;

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.

How ‘fair’ is it that the group chooses a name first and THEN asks patients to vote on it? But even if patients were given a real vote, how ‘fair’ would this be considering that the group 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 slick and shiny on the surface, and they repeat certain emotive keywords and phrases a lot and the tone of voice is very soothing and positive... but there is nothing meaningful underneath it. As M.E. advocate Lesley writes:

M. Beck, a US M.E. advocate since 1983, writes:

M.E. advocate John Anderson adds that:

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?

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. If you think that ‘ME/CFS’ is at least a small improvement from ‘CFS’ and is the start of many gradual improvements that will slowly ‘add up over time’ 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 severe and shocking abuse; far, 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 and their parents charged with abuse, children being thrown in swimming pools to uncover their ‘faked’ symptoms, forced exercise and CBT programs which have led to severe disability and even death, and so on – please see the section on abuse in: What is M.E.? Extra extended version.

This 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 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 take the time to look.

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.

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.

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. 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!

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.

• For more information see the full-length version of this paper (which includes and additional ‘Where do we go from here?' section at the end): Problems with the US so-called ‘Fair name’ campaign
• For more information see the new papers (available mid-late 2008) ‘Who benefits from ‘CFS’ and ‘ME/CFS’? and Problems with the use of 'ME/CFS' by M.E. advocates. See also the MUST-READ quotes section included below which contains far more information about this ‘Fair name’ campaign sham, by other advocates.
• For more information on the vast difference between M.E. and ‘CFS’ and the important difference between definitions and mere terminology, see: The Terminology and Definitions Explained and What is Myalgic Encephalomyelitis? and Why the disease category of ‘CFS’ must be abandoned
• For more information on the lack of quality and integrity in almost all M.E. and ‘CFS’ advocacy groups and how and why most of them have sold patients out to the highest bidder, see: Problems with 'our' M.E. (or CFS, CFIDS or ME/CFS) advocacy groups. (This paper is also available in an animated video format.)
• For more information on all aspects of M.E. see: What is Myalgic Encephalomyelitis?
• 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. Some conditions are also very serious or can even be fatal if not correctly diagnosed and managed, including Myalgic Encephalomyelitis. (It is not uncommon for people with cancer – which causes significant fatigue – to be misdiagnosed with CFS and to die needlessly due to a lack of appropriate treatment, for example.) Every patient deserves the best possible opportunity for appropriate treatment for their illness, and for recovery. This process must begin with a correct diagnosis if at all possible. A correct diagnosis is half the battle won.

Every diagnosis of ‘CFS’ is a misdiagnosis. If you have been misdiagnosed with ‘CFS’ and want to know where to start in getting a correct diagnosis see: The misdiagnosis of CFS and Where to after a 'CFS' (mis)diagnosis? 

• M.E. is a distinct recognisable well-defined entity, with several unique features, which can very easily be distinguished from various chronic fatigue states, and other unrelated fatiguing illnesses (both psychological and non-psychological) which may qualify for a ‘CFS’ misdiagnosis. People with M.E. must be diagnosed with M.E. and treated for M.E., according to research which is based on M.E. patients (rather than ‘CFS’ patients). The M.E. community does not need to wait for official ‘permission’ to fight to renew the name and scientifically and historically correct definition of M.E., these rights exist today (as they have since 1969) under the WHO ICD and based upon a significant body of M.E. research spanning over 70 years. For more information about what defines M.E. see: What is Myalgic Encephalomyelitis?, Testing for Myalgic Encephalomyelitis and most importantly The Nightingale Definition of M.E. by Dr Hyde M.D. This is an accurate and TESTABLE definition of M.E. See also: A New and Simple Definition of Myalgic Encephalomyelitis and a New Simple Definition of CFS
            It is immoral and unethical to use the name of (and other information relating to) another patient group to further your own interests, particularly when this causes significant additional harm and hardship to that group (and also when, generally speaking, that group is far more severely ill and vulnerable). The name M.E. is already taken, and has been for over 50 years, by M.E. patients. If you don’t know if you have M.E. or not, or what your real correct diagnosis is, find out. If you don’t have the acute onset testable neurological illness M.E. – then leave the term and definition and history of M.E. completely alone! It is the only logical and ethical thing to do.
• A note on so-called ‘subgroups’ of ‘ME/CFS’: ‘ME/CFS’ is just a diversion from the real issues instigated by vested interest groups, the same is true of ‘sub-grouping ME/CFS.’ It is a nonsense that makes a mockery of legitimate activism – don’t fall for it like so many others have. The only relevant subgroups here are M.E., and not M.E. People with Fibromyalgia have FM, and should be diagnosed with FM. To say that FM is a subgroup of ‘CFS’ or ‘ME/CFS’ is ridiculous. The same is true of post viral fatigue syndromes caused by Glandular Fever/Mononucleosis, Hepatitis, Ross river virus, Q fever or EBV – and so on. If you have a post-viral fatigue syndrome then that is your correct diagnosis and name, not ‘CFS’ or ‘CFIDS’ or ‘ME/CFS’ or anything else.
• A note on the Canadian ‘ME/CFS’ guidelines: It may well be the case that patients with various post-viral fatigue syndromes, some of the main groups supporting this unscientific renaming, would benefit from these conditions being renamed in some way. That is fine. But this new name must be one which is not TAKEN already by an entirely unrelated and already well-defined patient group! (The fact that some of these patients, and others, may fit the Canadian criteria for ‘ME/CFS’ does not mean that these patients can be correctly diagnosed with M.E. – as per Ramsay/Richardson/Dowsett and Hyde – nor that these illnesses are the same or ‘virtually the same’ as M.E. They are not. The Canadian ‘ME/CFS’ guidelines are not a pure/accurate M.E. definition and involve a vague mix of M.E. and the bogus disease category of ‘CFS.’ Read more about the benefits and the limitations of the Canadian Guidelines at: Canadian Guidelines Review and Testing for M.E.) It also makes no sense for a new approach to post-viral fatigue syndromes to include any part of the bogus ‘CFS’ definitions. See: Why the bogus disease category of ‘CFS’ must be abandoned for more information.
• A note on the groups and individuals leading this misleading and counter-productive campaign: Look very carefully at these groups and what else they support and whether or not they really are patient advocates. Look to see if they make any distinction between fatigue, ‘CFS’ and M.E. Check to see they aren’t supporters of the CDC (one of our chief abusers and producers of propaganda) or similar groups and individuals (Wessely, Sharpe, Lloyd and Hickie etc.), or that they don’t support a psychological or behavioural paradigm of ‘CFS’ and cognitive behavioural therapy or graded exercise therapy etc. You may be surprised to see how often this is the case. (For example, Rich Carson’s ImmuneSupport/Prohealth group, one of the biggest groups behind this name change, recently made public their support for the psychological paradigm of ‘ME/CFS’ and the use of CBT in treating ‘ME/CFS.’ They also often make little or no distinction between fatigue, ‘CFS’ and M.E. or even unrelated illnesses such as Fibromyalgia. They are also big supporters of the CDC.)
            Just because someone says they are a patient advocate and trying to help you it does not always mean that this is so. Vested interest groups have fully infiltrated a large number of patient groups (and individual ‘advocates’). Look past the superficial and the warm, comforting and authoritative tone of voice and make sure you know what they really stand for.

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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 impossible situation in which people with ME are trapped was intentionally created by "insurance, government & pharmaceutical company overlords." I am continually amazed that they have been so successful at this, in a supposedly democratic world, with all its checks and balances. The Wessely school has somehow been allowed to shape and define reality. The psychiatrists and their big-money overlords seem to make such an efficient and unchallengeable team. Meanwhile, the ME world is splintered, full of factions fighting each other, rather than the real enemy. This 'Fair Name' campaign seems to be yet another counter-productive exercise in shooting ourselves in the foot. It makes me, too, "want to SCREAM until my voice is gone." Lesley, 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

It's not just a question of name anyhow, but of DEFINITION.  What definition of the illness does the Fair Name campaign propose? The website doesn't focus on definition and doesn't say clearly what definition of 'ME/CFS' is proposed. However, in the 'Live Chat Q & A with ME/CFS Research and Policy Leader Leonard Jason,' it is implied that he likes the Canadian definition (Carruthers et al., 2003) but acknowledges that the CDC doesn't accept it. Perhaps, therefore, the Fair Name campaign means to stick with the CDC definition, or perhaps they don't take a stand as to definition. But definition of the illness is crucial!

     In any case, since their definition will have to cover the 'CFS' part of the composite name, it would have to cover all the heterogeneous, unrelated causes of 'fatigue': depression, Lyme disease etc etc etc., which have nothing to do with ME.
     Mixing up various causes of fatigue in one wastebasket, and associating them with ME, harms not only those with ME, but also those with fatigue. They deserve an accurate diagnosis - they might have Myasthenia Gravis, Multiple Sclerosis or Cancer, and need appropriate treatment.
Lesley, M.E. advocate

Reading the info on A Fair Name Campaign at http://www.afairname.org/ made me think, that this must be a last desperate try before closing down on Myalgic Encephalomyelitis - a well defined neurological disease, recognized by the WHO and by the Health authorities of several countries outside the US.

     People in these countries actually suffer from ME - they do NOT suffer from MEopathy or PVFS and least of all from CFS. In the 80' and first in the 90's MEitis was on its way to be accepted and respected - until names like PVFS and CFS showed up - and with them the huge and devastating interest of the psychiatrists, which we all are too familiar with - God help us!

     No proper definitions are attached to PVFS, CFS and MEopathy. The CFS definition is mostly a laugh because it is so broad that almost any disease can fit into these criteria, and do take into consideration, that this has screwed up many years of vital research into MEitis. WE – the MEitis patients - are paying an unacceptable high a price for this.

     PVFS is not identical to MEitis (according to Ramsay). In many countries PVFS is mostly viewed as a post-infectious condition with a fairly good prognosis, and which will typically, although not necessarily, fade away within a couple of years. This is definitely not a correct picture of ME. ME-opathy can mean any disease in the brain - including MEitis. MEopathy has no specific definition and it is not classified by the WHO or anywhere else.

     And Mr. Carson asks: Why the fuss?

Lajla Mark, M.E. advocate

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.

M. Beck, M.E. patient since 1983

"All that is essential for the triumph of evil is that good men do nothing" Edmund Burke

I would really like to steer people away from Rich Carson's site! His "fatigue" construct just pisses me off, and their stupid "fair name" petition is just a big sell-out to the insurance industry. In the US, so called "mental illness' is covered by a lifetime maximum of only TWO years total disability, and yet, so called "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. That this is one of the reasons that so many government weasels push this fake "fatigue" construct. They KNOW that it will cost billions of dollars if they admit the truth.

Tom Hennessy, founder of RESCIND

ProHealth/ImmuneSupport.com is now starting a series of articles in:

*....Clinical Psychology Review on medically unexplained symptoms and cognitive behavioral therapy....*

"....We conclude that a broadly conceptualized cognitive behavioral model of MUS suggests a novel and plausible mechanism of symptom generation and has heuristic value. We offer suggestions for further research...."

Chalder, Sharpe, Wessely, etc. have made the life of patients a hell during the last 20 years ! They filled their pockets (insurance industry) by trampling these severe sick patients. They are the Dr's Bruno Bettelheim in another shape*). I don't think that *supplements* will help to change this *novel and plausible mechanism*.

So why buy AminoAcids, Antioxidants, CoQ10, Essential Fatty Acids, Herbal Extracts, Multiple Vitamins & Minerals, NADH, Transfer Factor and other very, very expensive medicines, when we can be cured by a simple Cognitive Behavioural Therapy ? Is it not time to stop buying products from this organisation ? Does ProHealth think that we have bats in the belfry ?

Jan van Roijen, M.E. advocate

No signs of MEitis? This is not true. The first researchers doing studies on MEitis certainly did find signs of MEitis when doing autopsies. That's why WHO classified MEitis as a neurological disease in the first place. Today researchers still find signs of MEitis also by using brain scans.

     Do we want to be labelled as having diseases we do not suffer from? Do we want people with other - maybe treatable disease - to be labelled with a serious disease they do not suffer from? We certainly don't. Physicians, researchers and psychiatrist shouldn't want this either.

     Mr Carson writes: "'ME' is considered by most physicians and patients to be historically and diagnostically correct, and it has been used worldwide to describe the disease for close to 50 years."

     Exactly - so why don't you stick to MEitis! You have all the good reasons to do this. And you have no reasons to link it to CFS, which per definition hasn't much - if anything - to do with ME. Because some CFS diagnosed people inevitably suffer from ME doesn't make CFS identical to ME.

     Therefore, it's historically, medically and diagnostically incorrect to switch CFS to ME WITHOUT at the same time adopting the already existing  definition for MEitis. Also I personally find it unethical!

Lajla Mark, M.E. advocate

Just received a Newsletter from MERUK which included a piece by Cort Johnson, forwarded from Co-Cure I believe, 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 say reasonable things like 'the perfect is the enemy of the good.' They make their opponents seem unreasonable, unrealistic and hot-headed.

     But it is based on wrong premises! Their claim are bogus! Attaching 'CFS' to 'ME' does not make 'CFS' sound more scientific - it is an unscientific jumble. It makes the 'ME' part meaningless. Doubly so, if it can mean either -opathy or -itis. Retaining 'CFS' does not help welfare and insurance claimants.

     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. Wessley 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. (I am not implying any link with Wessely, just saying that their tone of voice is smooth and persuasive.)

     I'm sorry that MERUK seems to be backing the name 'ME/CFS.' Of course, they use it themselves currently (I have written to them about the change - older articles on their website say 'ME,' newer ones say 'ME/CFS.'). I was hoping, though, that they just use the term 'ME/CFS' because everyone else does in the UK - I was hoping that
they were not taking a political stand. Oh dear. It seems they are.
Lesley, M.E. advocate

Since they are doing their big "education" effort why can't they do one for ME? It really would be such a help to doctors, etc. It is real and not a bunch of BS, hogwash, obfuscation. It is all so clear and obvious and concrete I just cannot understand why no one sees it???? and why people like Marg Williams, Hooper, etc all caved in to "ME/CFS" ???? Just don't get it.

M. Beck, M.E. patient since 1983

I support the restoration of MEitis, automonous, non-CFS-linked, non-umbrella term linked, MEitis, the name, the ICD, and the development of a modern MEitis definition, research programme, etc.

     We need CDC out of the "define the disease" business, this is not their turf. This is the function of the NIH, not the CDC. We should be vocal and clear that this lethal, decades-long fiasco of a CFS mess was begun by the

CDC's failure to properly investigate the Meitis outbreaks. The "invention" of CFS was scientific fraud and there

is NO reason that I can see to continue it.

     As for "compromise" now - I do not know why this is even being considered without an effort to establish

what is right. Give up before the fray because it looks as though the valid position is "outnumbered"? When there are lives at stake? It seems way too soon to be even mentioning concessions and compromises, especially to a non-official CDC public persuasion puppet show.

     Let us instead start to establish a position of strength for MEitis - which does, in fact, have a lot of history and clinical descriptions in its favour (facts).

M. Beck, M.E. patient since 1983

What a load of ... stuff on that ‘Fair name’ website. Chock-full of the rhetorical use of reversal  "we are getting rid of CFS forever"   OH, yes, that is why you have RETAINED "CFS" in the "new name". "Fair Name", "Choice", "diagnostically correct" ... were lives not at stake, this farce would be comical.

     Of course, this latest specious effort is the latest prong of attack in the attempt to get rid of Meitis forever - first the "something for everyone umbrella term" (which is merely recycled from their last effort of the Name Change Workgroup variety), next they will trot out the "new research". The "new research" and "new name" and "new definition" (stay tuned, they already wrote that at the Brighton Collaboration Vaccine industry consortium CFS Workgroup) and Voila':  justification for changing the neuro ICD code of MEitis.

     This has all been in the works for some time. The parallels with the "Name Change Workgroup" (USA circa

2000) are striking. What stopped that ridiculopathy was the increasing patient awareness of MEitis and tactics to hide it. This awareness was being achieved on yahoogroups. Free speech is a powerful thing.

     So, the free speech had to go. Lists were closed. Slowly but surely, all of the other groups where meaningful dialogue transpired were either acquired by a select few (owners and moderators) and/or the lists were infected with strife initiated and maintained by strangely energetic newcomers. Dialogue shut down.

     But 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. Patients have all been herded to the ImmuneSupport

board for discussion, and discussion is controlled. Hard to sow the seeds of MEitis fact in this condition.

     The tactic of "co-opting" has been used,  by rounding up all those who pose the threat of leading opposition

and "putting them on the board". This is just classic technique. Group-think rules on the "Advocates Committee", and well-meaning people are persuaded by the Group and by flattery of inclusion as a luminary.

     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. MEitis pts around the planet will be denied testing and treatment under this plan.

     We must NOT accept "compromise", in the binary choice of "alive or dead", there is no middle ground.

     We must carve out MEitis ground and stand firm upon it. International unity would be best, as Europe is

not safe from these efforts which are international in scope. Any EuroME can soon find itself sucked into the black hole of "new research, new definitions, new ICD code by WHO". No one is safe.

     We must oppose and stop this move to subsume Meitis into CFS via the "/".  

     Personally, I think that we should do more than assume a reactive stance. We need independence and to control

our own dialogue rather than being bound by a CDC sematic and tactical agenda. Perhaps we need an alternative website, that will function to educate re MEitis as it lays out the reasons against this "new name".

      Before I go, anyone remember "the vote" during the "Name Change Workgroup" effort, around 2000?  Patients had begun to wake up, and were rallying around "Restore MEitis". So, when the US gov agencies circulated their "vote on a new name" questionnaire, MEitis was not included!!!  MEopathy was, which should tell you everything that you need to know about the plans for that term. But MEitis was nowhere to be found.

     "CFS" is contrived non-entity, clearly designed to obscure MEitis (which obviously must have some uncomfortable and costly implications)

     MEitis has a name, has an ICD code. There are 2 "subgroups" - MEitis, and Not-MEitis. That is the long and short of it, and yes, it is a moral issue. 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.

     And all thanks and gratitude to all of you who maintain the courage and integrity to speak up for life and refuse to bow to lies. We must be more persistent than they. In solidarity

M. Beck, M.E. patient since 1983

If you actually have neurological multi-system enteroviral Ramsay-defined ME then you have to develop awareness of the current state of ME politics and treatment in order to stay safe. These are dangerous times for the truly physically ill ME sufferer, who is still being left to flounder often without any medical support or back up, monitoring or treatment., who may be given a wrong or minimised prognosis, will not have all the symptoms

investigated appropriately and who will most likely struggle to obtain benefits and appropriate GP support.

            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 of ME perverted, especially by the brilliant infiltration of patient movements. Be aware of the message those who

represent you are conveying.

            Unless you understand that Myalgic Encephalomyelitis is a neurological, multi-system disease, which is severely disabling and can be deteriorative, even to death, for which there is currently no treatment and no cure and unless you are aware of the eroding of this fact through the clever use of language and compromising of facts,

then you are in grave danger of being misrepresented by people and organizations that will not truly represent your needs. Does the truth of enteroviral, neurological ME fit into the CFS paradigm? No, it does not !

            In short there are only two ways anyone representing ME can go. Life-bringing: straight-street, laser-sharp, from the truth to the truth, with honesty and integrity at the centre. Death-making: slick, glossy, in an ever wider circular cover-up of denial and manipulation; and this begins the moment you compromise your values.

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. People are dying right now from this illness. Martin Luther King, writing from his Birmingham prison cell, in the midst of an equally impossible

struggle commented that "I have been gravely disappointed with the white moderate. I have almost reached the regrettable conclusion that the Negro's great stumbling block in his stride towards freedom is not the White Citizen's Councilor or the Ku Klux Klanner, but the white moderate who is more devoted to "order" than to justice, who prefers a negative peace which is the absence of tension to a positive peace which is the presence of

justice, who constantly says, "I agree with you in the goal you seek but I cannot agree with your methods of direct action"; who paternalistically believes he can set the timetable for another man's freedom; who lives by a mythical concept of time and who constantly advises the Negro to wait for a more "convenient season".

Shallow understanding from people of good will is more frustrating than absolute misunderstanding from people of ill will. Lukewarm acceptance is more bewildering than outright rejection." (Why We can't Wait, Letter from a Birmingham Jail, Harper & Row 1963)

The greatest threat to people with ME right now, comes not just from the psycho-corporate lobby; they are so easily exposed. It comes from the moderates, the lukewarmers, the pragmatists, the compromisers right at the centre; who cannot see the damage they are doing by negotiating the truth away. Beware.

Greg and Linda Crowhurst, 2008

People are talking about the 'Fair Name Campaign' as though it is 1) ground-breaking and 2) a good thing. It is neither! The proposal is that our illness should be called 'ME/CFS.'

     Even worse, the 'ME' bit can be 'ME-opathy' or 'ME-itis,' interchangeably. As we all know, ME-itis is the correct, meaningful name. ME-opathy is meaningless. It's a bucket/umbrella/dustbin-type term. The idea that ME can stand for two different names interchangeably shows medical disrespect for the illness. We all know what's wrong with the 'CFS' bit, so I won't get started on that.

     In a nutshell: 'CFS' is a meaningless term. It does not define a heterogeneous patient group. Yoking it together with 'ME,' which is a specific illness, is nonsense.

     I know that there are national differences to this issue. In the UK where I am, ME used to be more used, but now thanks to Wessely & co, 'ME/CFS' is taking over. However, in the US, 'CFS' and its variants (CFIDS, PVCFS etc) has been widely accepted - so perhaps in the US they think that ME/CFS is an advance on CFS. If so, they are wrong.

     Rich Carson of ProHealth started this campaign I believe, and it has heavyweight support such as Drs. Paul Cheney, Daniel Peterson, Kenny de Meirleir, David Bell, Nancy Kilmas, Charles Lapp etc. (all but K de M are big 'CFS' doctors in the US). The campaign is gearing up for a patient vote in May. I have written to Rich Carson to say:
- the illness ALREADY HAS a name - myalgic encephalomyelitis
- the illness already has a definition (Dr. Byron Hyde, Nightingale Definition of M.E., 2006)
- any other name (and definition) distances the illness from original
research (Ramsey, Richardson, Dowsett)
- 'CFS' is meaningless, denies the biomedical reality of the illness, denigrates patients as psychologically ill and discredits their claims for medical treatment and welfare benefits
- the above consequences were just what the CDC intended in naming the illness 'CFS' (i.e. intended to discredit the illness and evade financial responsibility for the ill)
- combining 'ME' with 'CFS' makes the composite term meaningless
- the 'ME' part is meaningless if it means 'ME-opathy' (no such thing)
- the 'ME' part cannot stand for two terms at once - this is sl