The vast majority of CFS, ME/CFS, CFS/ME, ME-CFS, CFIDS and Myalgic Encephalopathy advocacy groups (or whatever other term they are using, including Myalgic Encephalomyelitis) in Australia, the UK, the US, the Netherlands and all around the world are not involved in legitimate or useful advocacy. It is very common to read information produced or supported by these groups which does not contain even a SINGLE facts about M.E. Because of these groups, most people with M.E. have no idea about even the most basic facts about M.E. or the history of M.E. and no progress has been made at all as regards M.E. advocacy for 20 years.
Please be aware that the vast majority of so-called 'CFS' or 'ME/CFS' or 'CFIDS' ''advocacy' groups (and individual advocates) do NOT speaks for patients and are anything but useful sources of accurate information on this topic.
M.E. patients have a huge battle on their hands trying to eradicate the bogus disease category of 'CFS' when to do so would mean huge financial and political losses to certain corporations and groups. This battle is made even more difficult due to the extreme severity and disability levels of M.E.
But what makes making headway in this battle almost impossible, is the huge number of anti-M.E. campaigners and groups in existence.
So many of these groups which started out determined to fight against the ‘fatigue’ and ‘CFS’ psychobabble, and all the other financially and politically motivated propaganda, and now actively SUPPORTING it.
Just as bad, all the legitimate research which is being done (by that small but dedicated groups of doctors which haven’t sold us out, and who continue to add to what we know about M.E.), they just ignore. They help ensure that their membership – as well as the wider community including most of the medical community – remains ignorant of even the most basic facts about M.E.
It is very common to read information produced or supported by these groups which does not contain even a SINGLE facts about M.E., or about anything else. (At best, information on M.E. is mixed in randomly with information on ‘CFS’ as if they were one and the same). These groups seem determined to just mindlessly parrot every last bit of the information given to them by vested interest groups, no matter how ridiculous, illogical or harmful – despite the fact that it is these same groups and this same scientifically unsupportable information that is the actual cause of our entire problem.
The vast majority of CFS, ME/CFS, CFS/ME, ME-CFS, CFIDS and Myalgic Encephalopathy advocacy groups (or whatever other term they’re using, including Myalgic Encephalomyelitis) in Australia, the UK, the US, the Netherlands and all around the world are not involved in legitimate or useful advocacy. Most such groups have sold us out to the highest bidder. These groups benefit, either in terms of funding, influence or in other ways, by following government policy and by their association with corporate vested interests. We have to wake up to the reality, as distressing as it is. This includes groups such as: AfME and the MEA in the UK, the ME/Chronic Fatigue Syndrome Society of Victoria in Australia (and most/all of the other Australian ‘CFS/ME’ or ‘ME/CFS’ groups), and the CFIDS Association of America (CAA), plus the groups behind or strongly supportive of the 'name change' false advocacy campaign such as Prohealth and the Phoenix/Bringing the heat site, among many others. These groups are not helping ANYONE, except themselves, and the vested interest groups who profit from ‘CFS.’
Because of these groups, most people with M.E. have no idea about even the most basic facts about M.E. or the history of M.E. and no progress has been made at all as regards M.E. advocacy for 20 years.
A big problem is that many patients cling to ‘CFS’ because it’s the only diagnosis they’ve got, and they think it protects them. It’s understandable that these patients want their illness to be taken seriously, but the diagnosis of ‘CFS’ does them a disservice because what they really need is accurate diagnosis so that their illness can be properly addressed. Another big problem is that some patients with a ‘CFS’ diagnosis support the concept of ‘ME/CFS’ because they believe that the ‘M.E. part of the composite term brings them closer to a diagnosis of M.E. But as this is an incorrect diagnosis for the vast majority of ‘CFS’ diagnosed patients, this only increases the unethical obfuscation that benefits vested interest groups. ME/CFS’ harms all patients and patient groups involved and makes a mockery of genuine advocacy.
The vast majority of the members of these groups do NOT have M.E. but instead a wide variety of fatiguing illnesses which are commonly misdiagnosed as ‘CFS’ (both psychological and non-psychological). These groups are advocating solely for miscellaneous (and far more able-bodied) fatigue sufferers and representing these people as being the model for ‘CFS’ (and M.E. and CFS being the same, most often.) M.E. sufferers seem to be being ignored almost entirely, despite the fact many groups still claim the name M.E. in some form and claim that what they say relates to M.E. This does real harm to those with M.E. but also negatively affects all those with various conditions with fatigue as a symptom who have been misdiagnosed as having ‘CFS.’
The ‘facts’ these groups produce and support don’t relate to M.E., and the opinions proffered by these groups on matters relevant to M.E. sufferers do not deserve to be given any weight at all. Very often these groups provide full support for projects which threaten not just the long term health but the very LIVES of people with M.E. and which for very good reason, legitimate M.E. sufferers (and other legitimate M.E. advocates) are vehemently opposed to. These groups do NOT speak for genuine M.E. sufferers, and are not run by genuine M.E. sufferers (although some of them do indeed make this claim).
But what is so maddening is that these groups are not only not helping people with M.E., they are also harming all those people misdiagnosed with ‘CFS’ to a similar degree. These groups are not helping ANYONE, except themselves, and the various vested interest groups involved whose needs are served by the ‘CFS’ confusion and abuse continuing. What is also maddening is that despite everything these groups have done, and not done, they are still supported by some patients, even some patients with M.E. This is baffling and also incredibly frustrating, and has to stop if we’re ever to get anywhere…. (Sadly it seems these groups’ propaganda campaigns have been only too successful at keeping patients from understanding the reality of the situation.)
In so many ways, these groups have ensured that the abuse and neglect forced on people with M.E. continues unabated, and that people with M.E. and the wider community and most of the medical community remain ignorant about even the most basic facts of M.E. The problem is not that these groups are not doing enough good work, it is that many of these groups are so bad that they are actually making things significantly WORSE for the patients involved. They’re actively supporting our abusers, and strengthening their stronghold over so many very ill and vulnerable people – they’re actually working directly AGAINST our best interests.
With many of these groups, it’s clear that the people involved mean well – but that gross ignorance and ineptitude are a huge problem. But with others, it’s really clear that there is a lot more to it than just ineptitude and that they have actually sold us out to the highest bidder, for their own gain.
These comments do not just apply to a few rogue groups, unfortunately. They apply to very nearly all of them – all around the world – and virtually ALL the largest groups in each country. The number of ‘advocate’ groups – and individual advocates – not significantly or overwhelmingly affected is very small.
We must fight to get these groups closed down, or at the very least these groups and individuals must be stopped from incorrectly and misleadingly claiming that they speak for (and provide facts on) authentic Myalgic Encephalomyelitis; as is happening so often now. These groups (and individuals) must remove anything relating to the name, definition or history of M.E. from their websites and handouts and so on. If these groups want to advocate for people with depression, candida, various post-viral fatigue syndromes, or Fibromyalgia or Lyme disease, or miscellaneous fatigue sufferers, that is of course completely fine – but they must SAY THAT and use the correct terminology! Not imply that this information applies to people with M.E. or other distinct patient groups when it doesn’t. These groups must stop hiding behind terms such as ‘CFS’ and ‘ME/CFS’ etc. and once and for all state clearly exactly who they are supposedly advocating for.
These groups and individuals have caused enough needless extra suffering, abuse, neglect and DEATH. What is happening is a human rights travesty on a massive scale. This has to stop. It has to BE stopped..
You can help by NOT supporting the bogus concepts of ‘CFS,’ ‘ME/CFS,’ ‘subgroups of ME/CFS,’ ‘CFS/ME,’ ‘CFIDS’ and Myalgic ‘Encephalopathy.’ Do not support groups which promote these concepts or which claim that M.E. and 'CFS' are the same or support the concept of 'CFS' being renamed as 'ME/CFS.' Do not give public or financial help to our abusers. Be aware that the vast majority of so-called 'CFS' or 'ME/CFS' or 'CFIDS' ''advocacy' groups do NOT speaks for patients and are anything but useful sources of accurate information on this topic.
To read or download an extended and fully referenced version of the above text, please see the Problems with 'our' M.E. (or CFS, CFIDS or ME/CFS) advocacy groups and Who benefits from 'CFS' and 'ME/CFS'? pages.
To see the (ANIMATED!) video of this paper, or listen to the audio version, see the Audio and video page.
See also 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' and Problems with the use of 'ME/CFS' by M.E. advocates.
Please also note that there are also many, many other anti-advocacy sites and groups in existence than those which are solely devoted to misrepresenting 'CFS' or M.E. This includes the Wikipedia webiste, which refuses to print accurate information about M.E. despite majy repeated requests, plus most government and other sites. These sites are either misinformed, or have a vested interest in providing inaccurate though 'politically correct' material. Other groups which benefit from the 'CFS' scam continuing and the facts of M.E. remaining hidden 'in plain sight' include the following:
Additional relevant links:
1. A note to journalists: These groups have ensured that even when that rare journalist who does want to help stop the abuse of people with M.E. tries to write a factual article about the illness – all they do is produce more of the useless psychobabble and nonsense, because of course journalists will also go to these large ‘advocacy’ groups for all their information. If you want to actually help people with M.E. you will NOT do so by perpetuating the same old myths that have caused us so much harm in the first place, as supported by most of ‘our’ advocacy groups. If you just go to the biggest local group and accept everything they say as gospel, you are NOT helping or engaging in useful or accurate journalism, no matter how good your intentions. Please do a little legitimate research and get the facts right, people with M.E. really need your help (along with those patients misdiagnosed with CFS). See the Information Guides page.
2. These comments also apply to a large number of individual advocates: the vast majority of whom do NOT have M.E. or provide information relating to M.E., yet they repeatedly use this term and claim to be M.E. sufferers. Sadly many patients with illnesses misdiagnosed with CFS have mistaken (1) their fatigue – with the loss of homeostasis and the unique form of paralytic muscle weakness seen in M.E. (which causes seizures, cardiac insufficiency, paralysis and many other serious problems in M.E. patients, and is potentially fatal), and (2) their post-exertional fatigue which may be delayed by 24 hours – with the worsening of the severity of the illness seen in M.E. which is often delayed by 48 hours or more (and is very different to this 24 hour delayed fatigue which is seen in many different unrelated illnesses, as well as in healthy people), and (3) their gradual onset – with the always acute onset of neurological M.E., and so on. The same is true of many individual advocates involved with these aforementioned groups. Some of these individuals have simply been misinformed, but many others are well aware of the difference between M.E. and ‘CFS’ (and that they don’t have authentic M.E.) but seem absolutely determined to ignore the facts or to twist them to make them suit their own illness, or preferred version of reality.
Advocates cannot continue to claim to have M.E. (unchallenged) if they do not have a primarily neurological illness and their illness in no way fits the history of M.E. and what we know about M.E. (as opposed to ‘CFS’) thanks to the world’s leading M.E. experts, and the 70 years of high quality research, and so on.
It is unethical that ‘CFS’ patients are so often incorrectly presenting themselves as the model for neurological M.E. or presenting a bizarre and ridiculous mix of facts relating to Fibromyalgia, post-viral fatigue syndromes and various other illnesses including M.E., as all supposedly relating to the same ‘CFS’ or M.E. (or ‘ME/CFS’ etc.) patient group. This helps nobody, except vested interest groups.
3. A note on researchers in this field; While the ‘advocacy’ groups mentioned here could very easily do a far better job, it must be said that the mess they’ve made of things has been made far easier by all those doctors and researchers who little by little have become CFS-infected and begin to use this term, and more importantly facts relating to ‘CFS,’ in their studies of M.E. and in their writings on M.E. The patients need the doctors and the researchers to back them up in daily life as well as in public, but how can they do that using harmful and confusing terms like CFS, CFS/ME, CFS-ME, ME/CFS or ME-CFS, or by not very clearly making the distinction between M.E. and ‘CFS,’ or by pretending that facts relating to ‘CFS’ (or fatigue) patients apply to those with M.E.? It must be said that the lack of integrity and courage in many of our researchers also greatly contributes to these problems. (This is not about ‘fish quotas’ etc. – it’s about the health and perhaps death of hundreds of thousands of human beings suffering from M.E. who had their lives totally destroyed by this disease.)
4. A final note to patients: Because of these groups, most people with M.E. have no idea about even the most basic facts about M.E. or the history of M.E. They have no idea of the 50 year history of the name M.E. (or the science behind the name M.E., or about the name M.E. at all), or the 70 year history of M.E. as an infectious neurological disease with links to polio backed by more than a thousand scientific studies. Most sufferers think that our problem is a lack of science and that if we can just get enough science to prove finally that M.E. is neurological, our problems will be solved; with no idea that this evidence has existed for more than 50 years already. Or sufferers have been misinformed to believe that the problem is merely the name ‘CFS’ rather than political and financial considerations. Many people have no idea that already there are a series of tests which can diagnose M.E., and so prove its organic basis, and so on. It’s a tragedy. (The same is true of all those patients misdiagnosed with CFS who do not have M.E. – almost none of them know they have been misdiagnosed and that they are stuck in the ‘CFS’ nightmare entirely voluntarily!) If you have M.E. or a ‘CFS’ diagnosis – knowledge is power and you must quickly learn as much as you can about what is really happening, for your own benefit and also for the benefit of all of us. Information is power! BUT don’t believe everything you read, or what every ‘advocacy group’ tells you.
We must also use our immense collective power by withdrawing all support for these useless and abusive groups (etc.) and only support those organisations dedicated to the truth and protecting our basic human rights and our fight for basic recognition and appropriate treatment. If we aren’t willing to be part of the solution, aren’t we part of the problem? We must demand more of ‘our’ groups if we want to get anywhere. If we don’t, who will?