A Hummingbirds' Guide to M.E.

Information on the neurological disease Myalgic Encephalomyelitis

Problems with 'our' advocacy groups

Problems with 'our' M.E. (or CFS, CFIDS or ME/CFS) advocacy groups This paper looks at the problems with our advocacy groups, and why so many of our groups are not engaged in useful advocacy and what we can do to help change this.

This paper is also available as animated video, and in audio format, see the Audio and Video page for details.

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Problems with 'our' advocacy groups

The sheep and the wolves in sheep’s clothing
Copyright © by Jodi Bassett October 2007 on www.ahummingbirdsguide.com
This version updated March 2009

Unfortunately, while many advocacy groups started out doing excellent work to improve things for M.E. sufferers, today this is no longer true in most cases.

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.

 

Are some groups better than others?

There are a small number of groups doing some good and worthwhile work for their members. Within that group there are a very small number of groups which really are virtually propaganda free and which do very clearly make the full and proper distinction between M.E. and CFS. (I can think of only 2, or perhaps 3 groups which would fit this category; one of them being the 25% M.E. Group in the UK.)

Then there are the worst of the worst, the groups which support all of the worst psychobabble including graded exercise therapy (the most harmful ‘treatment’ for genuine M.E. there is, and the reason many with M.E. are so severely affected in the first place, or have DIED from M.E.). (These groups are the ‘wolves in sheep’s clothing’). This includes groups such as: AfME in the UK, the ME/Chronic Fatigue Syndrome Society of Victoria in Australia, and the CFIDS Association of America (CAA), among others.

But the largest number of groups are somewhere in the middle. (These groups are the ‘sheep’). They may or may not provide some small percentage of good information occasionally, but unfortunately they combine this with many times more propaganda/fatigue/CFS nonsense, so it’s all rather confusing and just pointless in the end, despite any of the good intentions they may have (or claim/seem to have). Some groups accept anything with ‘CFS’ on it as being useful and relating to their members, other groups accept anything with ‘CFS’ on it which is not psychiatrically-based as being useful and relating to their members – no matter how flawed it is, or how much it relates to very different patient groups and does not fit what we know about M.E.

 

Are these groups being run by or for people with M.E.? If they aren’t are they at least helping people who have been diagnosed with CFS?

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.)

These ‘advocacy’ groups are becoming, or already are, mere ‘Chronic Fatigue’ societies and staunch defenders of the status quo. The status quo being the way things are; (1) Where people with M.E. are commonly abused and treated as psychiatric cases, denied appropriate treatment and any sort of understanding or compassion from the community, and (2) Where people with a wide variety of fatiguing illnesses are misdiagnosed as ‘CFS’ and so also denied appropriate diagnosis and treatment, and may also be recommended or forced to submit to inappropriate and useless psychiatric ‘treatments’ such as CBT and GET. These groups help nobody, except themselves (and those vested interest groups involved).

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. These groups, many of them, are so bad that we would easily be far better off if they closed down completely.

 

What are the motivations of these groups?

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.

For more information on this see: Who benefits from 'CFS' and 'ME/CFS'?

 

So where do we go from here?

These groups (and all individual advocates doing the same thing) must be held to account and stopped from causing so much harm by supporting the status quo, and the fiction that M.E. and CFS are the same, and that ‘CFS’ (as defined by the various ‘CFS’ definitions) is a distinct scientifically viable illness. Some of the most basic things these ‘advocacy’ groups must immediately do is:

  • These groups must all explain exactly what they mean by terms such as CFS, CFIDS or ME/CFS etc.; do they mean M.E., or post-viral fatigue syndromes or any illness involving fatigue both psychological and otherwise? If they mean fatigue then this is the term that must be used instead of ‘CFS’ or M.E. etc. These groups must make it very clear exactly who they are advocating for and not hide behind vague and meaningless umbrella terms such as CFIDS, CFS, ME/CFS, CFS/ME or Myalgic Encephalopathy and so on.

  • The distinction must be clearly made between terminology and definitions. The terminology is often used interchangeably, incorrectly and confusingly. However, the DEFINITIONS of M.E. and CFS are very different and distinct, and it is the definitions of each of these terms which is of primary importance.


    • Chronic Fatigue Syndrome is an artificial construct created in the US in 1988 for the benefit of various political and financial vested interest groups. It is a mere diagnosis of exclusion (or wastebasket diagnosis) based on the presence of gradual or acute onset fatigue lasting 6 months. If tests show serious abnormalities, a person no longer qualifies for the diagnosis, as ‘CFS’ is ‘medically unexplained.’ A diagnosis of ‘CFS’ does not mean that a person has any distinct disease (including M.E.). The patient population diagnosed with ‘CFS’ is made up of people with a vast array of unrelated illnesses, or with no detectable illness. According to the latest CDC estimates, 2.54% of the population qualify for a ‘CFS’ (mis)diagnosis. Every diagnosis of ‘CFS’ can only ever be a misdiagnosis.

    • Myalgic Encephalomyelitis is a systemic neurological disease initiated by a viral infection. M.E. is characterised by (scientifically measurable) damage to the brain, and particularly to the brain stem which results in dysfunctions and damage to almost all vital bodily systems and a loss of normal internal homeostasis. Substantial evidence indicates that M.E. is caused by an enterovirus. The onset of M.E. is always acute and M.E. can be diagnosed within just a few weeks. M.E. is an easily recognisable distinct organic neurological disease which can be verified by objective testing. If all tests are normal, then a diagnosis of M.E. cannot be correct.
           M.E. can occur in both epidemic and sporadic forms and can be extremely disabling, or sometimes fatal. M.E. is a chronic/lifelong disease that has existed for centuries. It shares similarities with MS, Lupus and Polio. There are more than 60 different neurological, cognitive, cardiac, metabolic, immunological, and other M.E. symptoms. Fatigue is not a defining nor even essential symptom of M.E. People with M.E. would give anything to be only severely ‘fatigued’ instead of having M.E.’ Far fewer than 0.5% of the population has the distinct neurological disease known since 1956 as Myalgic Encephalomyelitis.

  • These groups must reject the Oxford, Fukuda and Australian definitions of ‘CFS’ as they define exactly NOTHING.

  • These groups must oppose government legislation and psychiatrically biased studies into ‘fatigue’ which will harm their members. They must also give only good quality information to journalists which furthers the cause of patients’ fight for fair treatment. In other words, they must actually be advocates, and not just parrots for vested interest group and government propaganda. They must have very high standards, and critically and intelligently evaluate all material before endorsing it to ensure that it is factual and in the best interests of patients.

Some of the basic things groups who want to be genuine and useful M.E. advocacy groups must do is:

  1. Reject the Fukuda, Oxford and Australian ‘CFS’ definitions as irrelevant to M.E. patients, and adopt the Nightingale M.E. definition and the (significantly flawed but at least partially relevant to M.E., even if this information is also mixed in with information relating to ‘CFS’) Canadian ‘ME/CFS’ Guidelines

  2. Withdraw all support for treatments which are inappropriate and harmful or fatal for M.E. patients including CBT and GET (or any other scientifically unsupportable ‘blame the victim’ psychobabble). Groups must calmly but clearly warn of the dangers of GET for people with M.E. and that this intervention simply CANNOT improve the health of anyone with authentic M.E.

  3. Use the term Myalgic Encephalomyelitis exclusively, and make it very clear that M.E. and ‘CFS’ are not the same.

  4. Only produce and support information relating to M.E. which tally with the history of M.E. and what we know about M.E. medically (ie. M.E. is an illness which occurs in epidemic and sporadic forms, initiated by a virus, and which is primarily neurological and potentially fatal, and so on.)

  5. Fight against claims that studies relating to fatigued individuals (or other unrelated ‘CFS’ patient groups) have any relevance to people with authentic M.E.

  6. Refuse to support in any way those groups and individuals who are the cause of our problems (the producers of ‘CFS’ or of junk ‘CFS’ ‘science’) or who support these vested interest groups in any way (ie. the CDC, Wessely, Sharpe, Cleare, White, Chalder, Nijmegen, Lloyd, Hickie, and so on.)

  7. Work for and with genuine M.E. sufferers to improve their lives and the recognition of M.E. as the serious neurological illness it is – in a transparent and positive way.

  8. Will be fully aware that this is a political fight, and not caused by a lack of available science, or by the name ‘CFS,’ and that these are just distractions from the real problems.

None of the patient groups involved are helped by the ‘CFS’ misinformation and propaganda. M.E. is not synonymous with CFS, nor is it a subgroup of CFS. The creation of ‘CFS’ was a scientific fraud; every diagnosis of ‘CFS’ based on any of the ‘CFS’ definitions can only ever be a MISdiagnosis. M.E. is not a primarily fatiguing condition, nor is it a wastebasket diagnosis or ‘medically unexplained’ as ‘CFS’ is. Sub-grouping different types of ’CFS,’ refining the bogus ‘CFS’ definitions further or renaming ‘CFS’ with some variation on the term M.E. would achieve nothing and only create yet more confusion and mistreatment. The problem is not that ‘CFS’ patients are being mistreated as psychiatric patients; some of those patients misdiagnosed with CFS actually do have psychological illnesses. There is no such distinct disease/s as ‘CFS’ – that is the entire issue, and the vast majority of patients misdiagnosed with CFS do not have M.E. and so have no more right to that term than to ‘cancer’ or ‘diabetes.’ . (There is also no such disease/s as ‘ME/CFS’ CFS/ME CFIDS or Myalgic Encephalopathy – these made-up and misleading terms must also be abandoned). The only way forward, for the benefit of society and every patient group involved, is that:

  • The bogus disease category of ‘CFS’ must be abandoned completely.
  • The name Myalgic Encephalomyelitis must be fully restored (to the exclusion of all others) and the World Health Organization classification of M.E. (as a distinct neurological disease) must be accepted and adhered to in all official documentations and government policy.

 

In conclusion

These comments do not just apply to a few rogue groups, unfortunately. They apply to almost 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.

For more information

  • To see the (ANIMATED!) video of this paper, or listen to the audio version, see the Audio and Video page.

Additional notes on this topic:

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 ‘advocate 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?

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A one-page summary of the facts of Myalgic Encephalomyelitis

Copyright © by Jodi Bassett January 2009 on www.ahummingbirdsguide.com
This version updated March 2009

  • Myalgic Encephalomyelitis is a disabling neurological disease that is very similar to multiple sclerosis (M.S.) and polio (poliomyelitis). Earlier names for M.E. were ‘atypical multiple sclerosis’ and ‘atypical polio.’
  • Myalgic Encephalomyelitis is a neurological disease characterised by scientifically measurable post-encephalitic damage to the brain stem. This is always damaged in M.E., hence the name M.E. The term M.E. was coined in 1956 and means: My = muscle, Algic = pain, Encephalo = brain, Mye = spinal cord, Itis = inflammation. This neurological damage has been confirmed in autopsies of M.E. patients.
  • Myalgic Encephalomyelitis has been recognised by the World Health Organisation’s International Classification of Diseases since 1969 as a distinct organic neurological disease with the ICD code G.93.3.

  • Myalgic Encephalomyelitis is primarily neurological, but also involves cognitive, cardiac, cardiovascular, immunological, endocrinological, metabolic, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. M.E. affects all vital bodily systems and causes an inability to maintain bodily homeostasis. More than 64 individual symptoms of M.E. have been scientifically documented.
  • Myalgic Encephalomyelitis is an acute (sudden) onset, infectious neurological disease caused by a virus (a virus with a 4-7 day incubation period). M.E. occurs in epidemics as well as sporadically and over 60 M.E. outbreaks have been recorded worldwide since 1934. There is ample evidence that M.E. is caused by the same type of virus that causes polio; an enterovirus.
  • Myalgic Encephalomyelitis can be more disabling than MS or polio, and many other serious diseases. M.E. is one of the most disabling diseases there is. More than 30% of M.E. patients are housebound, wheelchair-reliant and/or bedbound and are severely limited with even basic movement and communication.

  • Why are Myalgic Encephalomyelitis patients so severely and uniquely disabled? For a person to stay alive, the heart must pump a certain base-level amount of blood. Every time a person is active, this increases the amount of blood the heart needs to pump. Every movement made or second spent upright, every word spoken, every thought thought, every word read or noise heard requires that more blood must be pumped by the heart.

         However, the hearts of M.E. patients only pump barely pump enough blood for them to stay alive. Their circulating blood volume is reduced by up to 50%. Thus M.E. patients are severely limited in physical, cognitive and orthostatic (being upright) exertion and sensory input.

         This problem of     reduced circulating blood volume, leading to cardiac insufficiency, is why every brief period spent walking or sitting, every conversation and every exposure to light or noise can affect M.E. patients so profoundly. Seemingly minor 'activities' can cause significantly increased symptom severity and/or disability (often with a 48-72 hour delay in onset), prolonged relapse lasting months, years or longer, permanent bodily damage (eg. heart damage or organ failure), disease progression or death.

         If activity levels exceed cardiac output by even 1%, death occurs. Thus the activity levels of M.E. patients must remain strictly within the limits of their reduced cardiac output just in order for them to stay alive. 

        M.E. patients who are able to rest appropriately and avoid severe or prolonged overexertion have repeatedly been shown to have the most positive long-term prognosis.
  • Myalgic Encephalomyelitis is a testable and scientifically measurable disease with several unique features that is not difficult to diagnose (within just a few weeks of onset) using a series of objective tests (eg. MRI and SPECT brain scans). Abnormalities are also visible on physical exam in M.E.
  • Myalgic Encephalomyelitis is a long-term/lifelong neurological disease that affects more than a million adults and children worldwide. (Causes of death in M.E. include heart failure.)

For more information, and to read a fully-referenced version of this text compiled using information from the world’s leading M.E. experts, please see: What is Myalgic Encephalomyelitis? Extra extended version. Permission is given for this unedited document to be freely redistributed, please redistribute this text widely.