A Hummingbirds' Guide

Information on the neurological disease Myalgic Encephalomyelitis by Jodi Bassett
Fine art by Jodi Bassett

M.E. activism and advocacy...

Most of us are way too ill to march or protest in person but if all of us educated ourselves and then spoke up as much as we were able, who knows how strong our combined voices might be and what they might achieve? 

The idea behind this website was to try to create a guide to M.E. which doesn't just mindlessly repeat the same inaccurate myths and propaganda again and again and instead focuses on the available facts:

  • There is an abundance of hard scientific evidence that proves beyond a doubt that M.E. is a severely debilitating (and potentially fatal) organic neurological illness that has occurred for centuries in both epidemic and sporadic forms. Enough scientific evidence exists now to prove this literally more than a THOUSAND times over. This evidence spans over 70 years and has been published in prestigious peer-reviewed journals all over the world.
  • No evidence whatsoever exists to show that M.E. is caused or perpetuated by psychiatric or 'behavioural' problems. (Studies involving 'fatigue' sufferers who do not have M.E. have no more relevance to M.E. patients than patients with MS, or any other illness.) These theories exist solely because they are so financially and politically convenient and profitable on such a large scale. Scientifically they are no more viable than the theory of a ‘flat earth.'
The problem is not a lack of scientific evidence, but that the mountain of evidence which exists is continually ignored by many of those in positions of power who are abusing that power to further their own vested interests; helped immeasurably by the creation of the bogus disease category of 'CFS.'
 
This pretence of ignorance (particularly by government) has had devastating consequences for people with M.E. and has also meant that the number of M.E. sufferers continues to rise unabated. The general public worldwide - including sufferers themselves - have been lied to repeatedly about the reality of Myalgic Encephalomyelitis.

The decades of systemic abuse and neglect of the million or more people with M.E. worldwide has to stop. M.E. and CFS are not the same. Knowledge is power.

ME activism - what YOU can do

1. Promote genuine Myalgic Encephalomyelitis (as per The Nightingale Definition of M.E. and the many papers by genuine M.E. experts such as Ramsay/Richardson/Dowsett and Hyde) and the difference between M.E. and the bogus - and politically and finacially motivated - disease category of 'CFS.'
 
2. Call to account so-called 'M.E. Charities' and 'M.E. Alliances' (and anyone else claiming to advocate for M.E. sufferers) who fail to do likewise and to cease giving them money and publicity.
 
3. Educate yourself about the illness as much as you can and in turn, share that education with as many other sufferers, carers and others as you can. Correct people who continue to spread incorrect information about the illness - whoever they are (including other sufferers).
 
4. Work for - and without compromise - justice and good science for sufferers of Myalgic Enephalomyelitis WHO ICD-10-G93.3 sufferers everywhere, as much as you are able (as well as to help all those misdiagnosed with 'CFS,' thanks to the bogus creation of the 'CFS' disease category, to get a correct diagnosis and treatment too finally).

Activism and advocacy resources

A new paper is available: M.E. vs MS: Similarities and differences by Jodi Bassett

M.E. and MS are very similar diseases medically in many ways. However, for reasons that have nothing to do with science, the two diseases are treated very differently politically and socially. The contrast could not be more stark. M.E. patients are treated terribly (and often abused terribly, even unto death in some cases), yet there is no public outcry as there would be if MS patients were treated in this same way. Thus people with M.E. find themselves in the terrible position of actually ENVYING people who have MS.

Please redistribute this paper widely.

A new paper is available: Who benefits from 'CFS' and 'ME/CFS'? by Jodi Bassett and co-written and edited by Lesley Ben.

For whose benefit was ‘Chronic Fatigue Syndrome’ created, and for whose benefit is it so heavily promoted despite its utter lack of scientific credibility? Who benefits from Myalgic Encephalomyelitis and ‘CFS’ being mixed together through unscientific concepts such as ‘CFS/ME’ and ‘ME/CFS’ and Myalgic ‘Encephalopathy’? Who benefits from the facts of M.E. remaining ignored, obscured and hidden in plain sight?

This paper looks at all of these very important questions.

Essential reading for all M.E. patients and advocates.

A new paper is available: A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy (co-authored by Lesley Ben)

Myalgic Encephalomyelitis and ‘Chronic Fatigue Syndrome’ are not synonymous terms. The overwhelming majority of research on ‘CFS’ or ‘CFIDS’ or ‘ME/CFS’ or ‘CFS/ME’ or ‘ICD-CFS’ does not involve M.E. patients and is not relevant in any way to M.E. patients. If the M.E. community were to reject all ‘CFS’ labelled research as ‘only relating to ‘CFS’ patients’ (including research which describes those abnormalities/characteristics unique to M.E. patients), however, this would seem to support the myth that ‘CFS’ is just a ‘watered down’ definition of M.E. and that M.E. and ‘CFS’ are virtually the same thing and share many characteristics.

A very small number of ‘CFS’ studies refer in part to people with M.E. but it may not always be clear which parts refer to M.E. This paper includes a checklist to help readers assess the relevance of individual ‘CFS’ studies to M.E. (if any) and explains some of the problems with this heterogeneous and skewed research.

A new paper is available: Are we just 'marking time?' by Jodi Bassett

This paper looks briefly at the problems with the flawed (but popular with some advocates) 'until we have a unique test for M.E. and more research, we can't expect anything to change' approach to M.E. advocacy.

Essential reading for all M.E. patients and advocates.

The CBT and GET database by Jodi Bassett

This is a stand-alone comprehensive guide to the use of CBT and GET on patients with Myalgic Encephalomyelitis and the psychiatric or 'behavioural' paradigm of M.E. generally.
 
It is designed to be a one stop URL for when you want to educate someone about M.E., but you know that just directing them to one good study or article wont be enough and you want to send them to a page which lists hundreds of the best of each!

This 100 page + resource contains excerpts and links to literally hundreds of articles and research studies which expose the lack of scientific legitimacy (and the hidden financial and political motivations) underlying the 'behavioural' paradigm of M.E. and the use of CBT and GET on M.E. patients as well as a large number of patient accounts of CBT and GET.

You can direct people to the webpage, and you can also download a copy of the entire 128 page database (or a 30 page summary) in Word or PDF formats and distribute paper copies. I hope the M.E. community will find this a useful resource.

Smoke and Mirrors by Jodi Bassett

This fully referenced paper looks at the lack of evidence (and financial and political motivations) behind the 'behavioural' model of M.E. and the use of interventions such as CBT and GET, the physical effects of CBT and GET on patients with M.E., and outlines a strategy for the resolution of the confusion caused by the 'CFS' disease category.

This text forms the introduction to the database.

Fatigue Schmatigue by Jodi Bassett

This paper explains how the fraudulent 'fatigue' construct of Myalgic Encephalomyelitis came into being and how the M.E. comminity can fight back!

The misdiagnosis of CFS by Jodi Bassett

None of the definitions of CFS defines M.E., so what do they define? What does a diagnosis of CFS actually mean?

What is Myalgic Encephalomyelitis?  by Jodi Bassett

A historical, political and medical overview of M.E. 

 
Because of the politics and financial interests involved in M.E. research it is important that before you read anything about the illness that you understand the context in which it was written.
 

M.E. advocacy videos by Jodi Bassett

A number of short videos are now available on the topic of M.E. advocacy. See the Audio and Video page for more information.

Diagnosing M.E.

Dr Hyde's new TESTABLE Myalgic Enephalomyelitis definition is a MUST-READ. See: The Nightingale Definition of M.E.

This is NOT a mere redefinition of 'CFS' but a genuine definition of authentic M.E.

Dr Byron Hyde M.D. is the world's preeminent ME authority.

See also: A New and Simple Definition of Myalgic Encephalomyelitis and a New Simple Definition of Chronic Fatigue Syndrome & A Brief History of Myalgic Encephalomyelitis & An Irreverent History of Chronic Fatigue Syndrome (an extract) and The Complexities of Diagnosis by Dr Byron Hyde M.D. (and more) available online. *HIGHLY RECOMMENDED*

The book: The Clinical and Scientific Basis of Myalgic Encephalomyelitis edited by Dr Byron Hyde M.D. is also vital reading for anyone with an interest in M.E. This book provides, in one superb 75-chapter source, an up-to-date, comprehensive account of current knowledge concerning the history, epidemiology, children with M.E., investigation, virology, immunology, muscle pathology, host response, food intolerance, brain mapping, neurophysiology, neuropsychology, sleep dysfunction and much more. This is an essential reference book for medical, government and public library reference rooms. This text is a unique vehicle for researchers, physicians and other health education and government officials, and is also easily understandable by the general public. All funds from the sale of this book go towards M.E. research and advocacy. See the Review of this book for more information and for purchasing details. (There is currently a special offer on this book and it is available for just $49!)

More essential reading on M.E.: What is ME? What is CFS? Information for Clinicians & Lawyers by Eileen Marshall, Margaret Williams & Professor Malcolm Hooper, The Mental Health Movement: Persecution of Patients? by Professor Malcolm Hooper,  Research into ME 1988 - 1998 Too much PHILOSOPHY and too little BASIC SCIENCE! and The Late Effects Of M.E. and A Rose by Any Other Name and Redefinitions of ME - a 20th Century Phenomenon by Dr Elizabeth Dowsett, Illustrations of Clinical Observations and International Research Findings from 1955 to 2005 that demonstrate the organic aetiology of Myalgic Encephalomyelitis (174 pages) by Eileen Marshall, Margaret Williams & Professor Malcolm Hooper, Worldwide Epidemic:an ALERT to citizens worldwide and; ME and CFS, the Definitions from the Committee for Justice and Recognition of M.E., and A New and Simple Definition of Myalgic Encephalomyelitis by Dr Byron Hyde MD.

To read more articles by any of these authors see: Articles sorted by Author 

The Myths about M.E.

Because of the vast amount of inaccurate information being propagated about Myalgic Encephalomyelitis by various vested interest groups (helped immeasurably by the creation of the bogus disease category of ‘CFS’ in the 1980s as well as a number of vague and misleading umbrella terms such as ‘ME/CFS,’ ‘CFS/ME,’ ‘PVFS,’ ‘ME-CFS,’ ‘CFIDS’ and Myalgic ‘Encephalopathy’ etc.) it is important to explain briefly what are the myths about M.E., and the facts of M.E.

There are so many myths about Myalgic Encephalomyelitis and many of them are so widespread that it is not uncommon to read articles in the media composed ENTIRELY of such material. Articles which do not contain even one legitimate fact about the illness! Despite popular opinion however, there is an abundance of scientifically accurate information about M.E. that is freely available. It spans over 70 years and has been featured in prestigious peer reviewed medical journals all over the world.

Tragically however, this information keeps being blocked at every stage by the unscientific myths and propaganda created by vested interest groups. It is a victory of vested political and financial interests over ethics, science, logic, patient welfare, and REALITY.

What follows is a list of some of the most common myths about M.E.:

  1. MYTH: M.E. is a new illness that appeared for the first time in the 1980s
  2. MYTH: M.E. does not occur in outbreaks or epidemics
  3. MYTH: M.E. is an illness whose primary and defining feature is ‘chronic fatigue.’
  4. MYTH: Myalgic Encephalomyelitis and ‘CFS’ are synonymous terms
  5. MYTH: People suffering with chronic fatigue have mild M.E.
  6. MYTH: All studies or articles which use the terms CFS (or ME/CFS, CFS/ME, CFIDS or Myalgic Encephalopathy) are discussing the same patient group
  7. MYTH: The 8 symptoms – along with fatigue – listed in the CDC’s 1994 Fukada CFS diagnostic criteria (short-term memory or concentration problems, sore throat, tender cervical or axillary lymph nodes, multi-joint pain, muscle pain, headaches, non-refreshing sleep and/or post-exertional malaise) are the symptoms which define M.E. Fitting the Fukada criteria for CFS, or any of the other CFS definitions, means that you have Myalgic Encephalomyelitis
  8. MYTH: Fibromyalgia and M.E. are basically (or exactly) the same illness: fatigue is the worst symptom of M.E. and in Fibromyalgia the worst symptom is always pain and that's really the only way you can tell which one you have. M.E. is also basically (or exactly) the same illness as Lyme disease, Multiple Chemical Sensitivity Syndrome and Gulf War Syndrome etc.
  9. MYTH: M.E. is a mild illness from which every person will eventually completely recover and is never progressive or fatal
  10. MYTH: M.E. has been scientifically proven to be caused by psychological factors. M.E. is a 'mysterious' illness with many 'medically unexplained' symptoms and seems to ‘transcend the boundaries between the body and the mind’ like no other. No research exists which shows that M.E. has a physical or organic basis
  11. MYTH: M.E. is consequent from an organic (viral) trigger but the illness is short lived unless there are psychological and social factors which perpetuate the illness long term
  12. MYTH: It is only recently that researchers have finally shown that M.E. has a physical or organic basis
  13. MYTH: Only very mild abnormalities have ever been found in M.E. patients
  14. MYTH: The only treatments shown to be useful in treating M.E. are CBT (cognitive behavioural therapy) and GET (graded exercise therapy). CBT/GET treatments are useful in 'rehabilitating' M.E. sufferers because M.E. is perpetuated by deconditioning and inactivity. These treatments are also completely safe and there is no risk associated with them for M.E. patients
  15. MYTH: All laboratory tests will always come back normal in M.E. patients and so there are no tests that can be done which can confirm a suspected M.E. diagnosis. Diagnosis is extremely difficult
  16. MYTH: M.E. is only a diagnosis of exclusion, a wastebasket diagnosis. It is not a distinct disease.
  17. MYTH: M.E. can not be diagnosed until after 6 months have passed, M.E. is a gradual onset illness
  18. MYTH: There are never any observable physical signs of illness in M.E.
  19. MYTH: The symptoms and severity level of the illness remains constant in M.E. If a patient can do something once, they can obviously do it many times; if a patient can do something on one day, of course they will also be able to do it the next day too, or on any other day.
  20. MYTH: Research into M.E. is well funded by government
  21. MYTH: M.E. primarily or only affects white, affluent and well-educated women
  22. MYTH: There are no children who have M.E.
  23. MYTH: Most people (or everyone) with M.E. has a ‘type A’ or perfectionist personality and this has caused or perpetuated the illness
  24. MYTH: M.E. can result from becoming run down physically or is the end result of high levels of stress, long term stress or childhood trauma or abuse
  25. MYTH: M.E. can be caused by the Epstein-Barr virus, glandular fever/mononucleosis, Q fever, HHV6 or Ross River virus
  26. MYTH: The term Myalgic Encephalopathy is more medically accurate than the term Myalgic Encephalomyelitis and so using the term Myalgic Encephalopathy is in the best interests of authentic M.E. sufferers
  27. MYTH: All those advocacy organisations (and individuals) which publicly state that M.E. (or ME/CFS, CFS/ME or CFIDS etc.) is not ‘all in your head’ are trustworthy and are working for the benefit all M.E. sufferers and are a good source of information about Myalgic Encephalomyelitis.
  28. MYTH: All those who state publicly that they believe M.E. to be a purely psychological or behavioural illness are basing their stance on a comprehensive and unbiased examination of the medical evidence and actually believe what they are saying. There is a legitimate scientific debate about whether or not M.E. is ‘real’ or if it is psychological or neurological.
  29. MYTH: The name CFS was chosen in 1988 by a group of experienced M.E. clinicians who thought it was the most medically accurate name for the illness at that time
  30. MYTH: It is the name CFS itself that is the cause of all the misunderstandings about the illness. If the name Myalgic Encephalomyelitis was renewed (for example) patients would automatically start to get the recognition and respect they deserve, more money for legitimate research and everything else they so desperately need
  31. MYTH: Once we have enough hard science behind M.E. – in particular a single diagnostic marker for the illness – things will improve for M.E. sufferers and M.E. will automatically start to get the medical recognition and respect it deserves. (The problem is only that we lack enough science.)

 

The truth is that every one of those statements is completely untrue despite how often they have been repeated to us and presented as ‘facts.’

To the M.E. patients reading this: were you surprised by some of them? The sad truth is that it isn’t just the general public that have been lied to repeatedly about almost every aspect of this illness; but every M.E. sufferer as well. The consequences of that for people with the illness, as we all well know, have been devastating. As Hillary Johnson, author of ‘Osler’s Web’ (a book which exposed the truth behind the US 1980s M.E. epidemics) writes:

There is no one individual who is going to fly in with a velvet cape on their back and save the day. Only the patients can, but it's going to take guts. When they start to demonstrate some guts, it's my guess that the researchers you so want to support you will line up one by one and start supporting you over time. Some kind of critical mass must be achieved, until there are more people standing on one side than the other, and the lie starts to crumble and the perpetrators will skitter away to higher ground.

It is not a matter of if M.E. sufferers will win the battle for formal recognition and fair treatment but of when; when is entirely up to M.E. patients and how hard we are willing to fight. (Sadly nobody else seems at all willing to do any of the fighting for us. Despite having science and REALITY on our side, as well as ethics, we have been abandoned by the media, most doctors and scientists, our governments and even human rights groups, thus far at least.)

The onus is also on those in the media, doctors, lawyers and the general public to educate themselves about the facts of M.E.; to stop perpetuating myths about the illness and to do what they can to stop the needless neglect and abuse of some of the most vulnerable members of our society. The media in particular (with some notable exceptions) has really not served people with M.E. well over the last 20 years. As was stated in the introduction, it is still very common to read articles in the media composed ENTIRELY of this unscientific propaganda. The media plays a significant role in perpetuating the serious abuse M.E. patients are subjected to.

Sources of M.E. information on this site which debunk all the myths listed above in more detail (and which are each fully referenced) include:

  1. What is M.E.? A medical and political overview
  2. The misdiagnosis of CFS
  3. Myalgic Encephalomyelitis is not fatigue, or 'CFS' 
  4. Smoke and mirrors
  5. Putting research and articles on M.E. into context
  6. Testing for Myalgic Encephalomyelitis
  7. Why the disease category of ‘CFS’ must be abandoned
  8. Problems with 'our' M.E. (or CFS, CFIDS or ME/CFS) advocacy groups
  9. The effects of CBT and GET on patients with Myalgic Encephalomyelitis
  10. The Ultra-comprehensive Myalgic Encephalomyelitis Symptom List. 

See also: Myalgic Encephalomyelitis Research and Articles. This is a collection of literally HUNDREDS of some of the best M.E. research and articles, from some of the worlds leading researchers, doctors and M.E. advocates. Sections include: M.E. outbreaks, M.E. and children, viral research, cardiac research, the severity of M.E. and many more. Please read Putting research and articles on M.E. into context first however.

To read a complete list of the articles and resources available on the site suitable for different groups – severe M.E. patients, M.E. patients, patients misdiagnosed with ‘CFS,’ doctors, the media, friends and family of M.E. patients, carers and so on – see the new Information Guides page.

 

The problem here is not a lack of scientific evidence, but that the evidence which exists is continually ignored by many of those in positions of power who are abusing that power to further their own vested interests. This pretence of ignorance on behalf of Governments (and others) has had devastating consequences for people with M.E. and has also meant that the number of M.E. sufferers continues to rise unabated. The decades of systemic abuse and neglect of the million or more people with M.E. worldwide has to stop.

Will it take another 20 years? How much more extreme does the suffering have to be? How many more hundreds of thousands of children and adults worldwide have to be affected? How many more patients will have to die needlessly or be horrifically abused or neglected before something is finally done? How many more patients have to be left at home to die alone, without even the support or respect of their families?

People with M.E. have only a tiny minority of the medical, scientific, legal and other potentially supporting professions – or the public – on their side. What is needed is for people from all over the world to stand up for the truth about Myalgic Encephalomyelitis. Individual physicians, journalists, politicians, human rights campaigners, patients, families and friends of patients and the public – whether they are affected yet by M.E. or not. That is the only way change will occur; through education and people simply refusing to accept what is happening any more.

So please refuse to accept anything less than the facts about M.E. and encourage others to do the same. Knowledge is power.

This appalling abuse and neglect of so many severely ill people on such an industrial scale is truly inhuman and has already gone on for far too long. People with M.E. (and those misdiagnosed with ‘CFS’ who do not have M.E.) desperately need your help.

The ‘CFS’ scam is tissue thin and M.E. is a serious and potentially fatal distinct neurological disease. These facts are very easily discovered if one merely takes a small amount of time to look at the actual evidence.

See The Myths about M.E. to download this paper, and for notes on references.

References...

All of the information concerning Myalgic Encephalomyelitis on this website is fully referenced and has been compiled using the highest quality resources available, produced by the world's leading M.E. experts.

More experienced and more knowledgeable M.E. experts than these – Dr Byron Hyde MD. and Dr. Elizabeth Dowsett MD. in particular – do not exist.

Between Dr Byron Hyde MD. and Dr. Elizabeth Dowsett MD. – and their mentors the late Dr John Richardson MD. and Dr Melvin Ramsay MD. (respectively) – these four doctors have been involved with M.E. research and M.E. patients for well over 100 years, collectively; from the 1950's to the current day. Between them they have examined more than 12 000 individual (sporadic and epidemic) M.E. patients, as well as each authoring numerous studies and articles on M.E., and books on M.E.

Again; more experienced, more knowledgeable and more credible M.E. experts than these simply do not exist.

The papers on this site merely provide a brief summary of some of the most important facts of M.E. They have been created – by a well-read layperson – purely for the benefit of those individuals without the time, inclination or ability to read each of the large number of far more complex and lengthy source papers. A full list of references is given at the end of each paper however, and these original references are very highly recommended as essential additional reading for any physician (or anyone else) with a real interest in Myalgic Encephalomyelitis.

To read a fully referenced version of all of the information about M.E. given on this page, see the paper: Myalgic Encephalomyelitis is not fatigue, or 'CFS' 

M.E. activism gear...

*new!* A range of (cost-price) high-quality t-shirts, stickers, mugs, bags and more available for purchase - adorned with various political slogans relating to ME. You can also dowmload the images and print them on your OWN gear for FREE! Tell the WORLD what ME is really about!

Click here for more information and for purchasing details.

Some reading on ME activism...

Check out the Activism Articles, for an extensive collection of articles on M.E. activism.

Other sections which may be useful include:

General Research and Articles, The Definitions of M.E.and M.E. and Other Illnesses  The Severity of M.E., On the Name MEitis,   Articles sorted by Author,  Outstanding Articles and Putting Research and Articles into Context

Check out out the Research and Articles section for more links.

A short note on terminology and definitions...

It is important to be aware that Myalgic Encephalomyelitis and 'CFS' are not synonymous terms and should not be used interchangeably, and that 'fatigue' is not a defining feature of M.E. nor even an essential symptom of M.E.

CFS was created in the 1980s in the US in response to an outbreak of what was unmistakably M.E., but this new name and definition did not describe the known signs, symptoms, history and pathology of M.E. It described a disease process that did not, and could not exist. The fact that a person qualifies for a diagnosis of 'CFS' (a) does not mean that the patient has Myalgic Encephalomyelitis (M.E.), and (b) does not mean that the patient has any other distinct and specific illness named ‘CFS.’ Every diagnosis of CFS – based on any of the CFS definitions – can only ever be a misdiagnosis.

The bogus disease category of ‘CFS’ has undoubtedly been used to impose a false psychiatric paradigm of M.E. by allying it with various psychiatric fatigue states and various unrelated fatigue syndromes for the benefit of insurance companies and various other organisations and corporations which have a vested financial interest in how these patients are treated, including the government.

The distinction must be made between terminology and definitions. For more information on why the bogus disease category of 'CFS' must be abandoned, (along with the use of other vague and misleading umbrella terms such as ‘ME/CFS’ ‘CFS/ME’ 'CFIDS' and 'Myalgic Encephalopathy' and others, including 'ICD-CFS'), see: The misdiagnosis of CFS, Why the disease category of ‘CFS’ must be abandoned and Smoke and Mirrors

What does the term ICD-CFS mean?

The various definitions of ‘CFS’ do not define M.E. Myalgic Encephalomyelitis is an organic neurological disorder as defined at G.93.3 in the World Health Organization’s International Classification of Diseases (ICD). The definitions of ‘CFS’ do not reflect this. The ‘CFS’ definitions are not ‘watered down’ M.E. definitions, as some claim. They are not definitions of M.E. at all.

However, ever since an outbreak of M.E. in the US was given the label ‘CFS,’ the name/definition ‘CFS’ has prevailed for political reasons. ‘CFS’ is widely though wrongly applied to M.E. as well as to other diseases.

The overwhelming majority of ‘CFS’ research does not involve M.E. patients and is not relevant in any way to M.E. patients. However, a very small amount (a minuscule percentage) of research published under the name ‘CFS’ clearly does involve a significant number of M.E. patients as it details those abnormalities which are unique to M.E. Sometimes the term ‘ICD-CFS’ is used in those studies and articles which, while they use the term ‘CFS,’ do relate to some extent to authentic M.E. General problems with the term ‘ICD-CFS’ include the following:

1) The main problem is that the term ‘ICD-CFS’ implies that ‘CFS’ has a WHO ICD classification as a neurological disease. ‘CFS’ has no ICD listing as a neurological disease. Indeed, in the version of the ICD in use in most of the world, ‘CFS’ has no classification at all. Myalgic Encephalomyelitis was classified as a distinct neurological disease in the WHO ICD in 1969 based on a large body of compelling scientific evidence. To imply that ‘CFS’ research and the definitions of ‘CFS’ have been properly evaluated by the WHO and classified as neurological is erroneous. Of course ‘CFS’ can never be classified as a neurological illness because none of the ‘CFS’ definitions define a neurological disease, or any distinct disease.

2) It is also erroneous to imply that the WHO has deemed ‘CFS’ to relate to Myalgic Encephalomyelitis in any way. The term ICD-CFS incorrectly suggests that ‘CFS’ and M.E. are synonymous terms for a single entity.

3) The term also implies a lack of scientific rigour in the ICD, suggesting that definitions as vague and as problematic as those of ‘CFS’ would be accepted by the WHO as the basis for a neurological classification. If this were to be believed, it would weaken the authority of Myalgic Encephalomyelitis’s ICD classification.

4) In addition to its use in relation to research, some people use the term ‘ICD-CFS’ to refer to the disease generally. The term is usually used by people who are aware of the psychological paradigm of ‘CFS,’ and who want to indicate a real, biological disease rather than a psychological one. However, which exact disease or diseases are being referred to with this term varies considerably from one author to another. As with terms such as ‘ME/CFS’ the term ‘ICD-CFS’ only increases confusion as it has no agreed definition and many different groups use it to refer to very different, often very mixed, patient groups.

 

The overwhelming majority of ‘CFS’ research does not involve M.E. patients and is not relevant in any way to M.E. patients. A small number of ‘CFS’ studies refer in part to people with M.E. but it may not always be clear which parts refer to M.E. Unless studies are based on an exclusively M.E. patient group, results cannot be interpreted and are meaningless for M.E. Thus while it is important to be aware of the small amount of research findings that do hold some value for M.E. patients, using the term ‘ICD-CFS’ to refer to this research is misleading and in many ways just damaging as using terms and concepts like ‘ME/CFS’ or ‘CFS/ME.’
  • For more information about the WHO classifications of M.E. and ‘CFS’ worldwide please see the articles by patient advocate LK Woodruff. For further details of the WHO ICD classifications of M.E. and ‘CFS’ worldwide please see the new paper on WHO ICD Classifications by Lesley Ben, coming soon.
  • Virtually all of the research which does relate to M.E. (at least in part) but which uses the term/concept of ‘CFS’ (or ME/CFS, or CFIDS etc.) is also contaminated in some way by ‘CFS’ misinformation. Most often these papers contain a bizarre mix of facts relating to both M.E. and ‘CFS.’ For more information on some of the most common inaccuracies and ‘CFS’ propaganda included in this research, see the paper: Putting Research and Articles on Myalgic Encephalomyelitis into Context

Political/information groups and websites...

MEAction UK is a UK based political discussion group.

"This discussion forum is dedicated to the issues of major interest surrounding the neurological/immune/endocrine disease known as Myalgic Encephalomyelitis.Over the last 4 years we have provided a positive, informed and detailed debate surrounding the medical, social and political issues that affect people with Myalgic Encephalomyelitis."

The ME Society of America group is not a discussion group but instead periodically posts breaking news and medical research related to ME.


MERGE does some solid ME research, sign up to their e-newsletter to make sure you find out about all their latest info.

Co-cure’s mailing list lets you receive all the current research into ME (and 'CFS') by email. The down side is that many posts relate to 'chronic fatigue' or are pseudoscience about psychological causes of ME. BUT there are some really great ME articles posted here too so it’s worth it (as long as you can avoid getting too upset at all the offensive ‘ME is psychological’ articles). These articles are included because Co-cure endeavour to include ALL of the papers and research about ME written, not just the good ones (so we can fully see what we are up against). It's a comprehensive coverage and an important group to subscribe to if you are well enough to read the large volume of posts produced.
 
 

ME Activists United is a group where people with the neurological, cardiac, immune and neuroendocrine illness ME, their carers and those who advocate for them, can get together to discuss new activism ideas and strategies, share new research etc. - see what we can come up with between all of us and then put it to use!!!

Heated debates are definately allowed, but no personal attacks will be tolerated.

Click here to check out the homepage for more information.

(I am the group's moderator)

Myalgic Encephalomyelitis petitions...

Petition: The recognition of Myalgic Encephalomyelitis as a serious and debilitating disease

We, the undersigned, respectfully demand that Myalgic Encephalomyelitis (ME), an internationally recognized neurological disease, be also formally recognized as a distinct clinical entity in the United States by the National Institutes of Health and the Centers for Disease Control. It is time to make the case definition/diagnostic criteria explicit in the name.

Currently, most patients are diagnosed with Chronic Fatigue Syndrome, a poorly defined, misunderstood, controversial syndrome which remains underfunded and underresearched. The name Chronic Fatigue Syndrome itself has trivialized the illness and further subjected these patients to incredulity and ridicule. The CFS rubric has not only neglected and failed to help those with ME, it has harmed them. ME patients will not improve with cognitive behavioral therapy (CBT) or graded exercise (in fact, exercise will make them worse) - yet these are considered treatments for CFS. Simply "renaming" CFS will not solve this problem.

To sign the petition go to: www.petitiononline.com/MEitis/petition-sign.html

A new petition: http://petitions.pm.gov.uk/ME-is-real/
 
The above petition raised by Konstanze Allsopp to the P.M. is open until 22nd January 2008.
 
'The latest DWP Guidelines and PACE are still directing the Health Service to treat ME suferrers with GET and CBT (a tool used for mental illnesses) despite the mounting evidence from a vast amount of research proving that ME is an organic not a psychosomatic disease and that the treatments forced onto those affected do in fact cause more harm than good and can worsen the condition of patients. Money should instead be invested in research into the physiologocal aetiology [of ME] and its treatment. Patients should not be forced into becoming psychiatric cases or lose their benefits.'

Nonpartisan ME/CFS petition

Petition to U.S. Government officials and candidates:

Introduction: "We represent a large and severely disabled group of Americans who have been seriously neglected by previous administrations. We do hope that you will take a few minutes out of your busy schedule to read about us."

To sign the petition go to: www.petitiononline.com/CFS2004/petition-sign.html?

 

Support M.E. research...

Research into ME is extremely underfunded ...or should that be that USEFUL and LEGITIMATE research into ME is extremely underfunded. There does seem to be quite a bit of money for useless research into 'fatigue' unfortunately.

If you are at all able, donations towards real ME research are a great way to further our cause and to improve the lives of ME sufferers, see the Donations page for more information.

On the uselessness of passivity (and compromising)....

These quotes are a brief but powerful argument against those 'CFS' advocates who preach passivity and 'making nice' to our abusers such as the CDC (those who claim that M.E. and CFS are the same and that M.E. is a psychological, behavioual or 'biopsychosocial' disorder involving fatigue etc.) in the naive (and delusional!) hope that they will stop abusing us (and denying reality) because we have behaved nicely enough and asked nicely enough.

This is a quote from Frederick Douglass, an escaped slave in the US in the nineteenth century, involved in the campaigns against slavery at the time.

"Those who profess to favor freedom and yet discourage agitation are people who want crops without plowing up the ground. They want rain without thunder and lightning. They want the ocean without the awful roar of its waves.

This struggle may be a moral one or it may be a physical one, but it must be a struggle. Power concedes nothing without a demand. It never did and it never will.

Find out what people will submit to and you will find out the exact measure of injustice and wrong which will be imposed upon them. And these will be continued until they are resisted in either words or blows or both. The limits of tyrants are prescribed by the endurance of those they oppress."

Frederick Douglass, 1857

From Greg and Linda Crowhurst in ME Awareness: Check out the facts

"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."

For more on the uselessness of passivity and compromising see:

  • More medical 'firsts' from the CDC?
  • The CDC/CFIDS Association 'Faces of CFS' campaign 
  • M.E. advocacy and 'CFS' advocacy are not the same
  • 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’
  • Problems with the use of 'ME/CFS' by M.E. advocates
  • Problems with 'our' M.E. (or CFS, CFIDS or ME/CFS) advocacy groups
  • Why the disease category of ‘CFS’ must be abandoned and
  • What is Myalgic Encephalomyelitis? 


    •

    See also: 

    A May 12 plea for those doing interviews

    Hi all,

    Can I make a plea for anyone doing an interview or providing information to the media...

    When you talk about the need for more biomedical research PLEASE be sure to stress that there is ALREADY a significant amount of research proving that ME exists as a discrete well-defined organic disease.  We know enough about it to know it affects a wider range of bodily systems than multiple sclerosis for example.  We know enough about it to know what systems are more likely affected (muscle, CNS, vascular) and which tests can help confirm diagnosis, guide an monitor management.  We even know that some biomedical treatments are available (as per Cheney etc) even if the NHS is extremely reluctant to endorse a non-psychiatric approach, and of course they probably don't get to the root cause as yet.

    We are not insisting on biomedical research to "prove that ME is a medical disease".

    We already KNOW that.

    The WHO knew that in 1969, the RSM knew that in 1978. There's a whole history of epidemics and some deaths dating back decades.  Pellew and Miles transferred the infection to monkeys in the 1950s, one of which died from heart failure, and the post mortem showed "disseminated lesions scattered throughout the nervous system from the brain to peripheral nerves and associated with perivascular round cell infiltration" (Parish, 1978). There are now [many hundreds of] published papers confirming organic disease, despite the mess of confusion of ME with vaguely defined fatigue syndromes.  Many of the old papers can be found on the MERUK web site, some in full, and Pubmed has abstracts of recent recent studies.

    Arguing that we need to "prove" ME is playing into the psychs' hands in appearing to agree we have nothing but a belief and no evidence, and so can't with confidence confirm the psychs are wrong. Which couldn't be further from the truth.

    The primary needs of research are for treatments, further delineating the etiology and for better diagnosis. Only biomedical treatment offers the practicality to counteract CBT/GET.  The cause of multiple sclerosis is hotly debated (virus, vitamin deficiency, genetic?) yet it doesn't have the clear historical pathogenic associations that ME has.

    It's really important for listeners/readers to get the message that ME is NOT an "enigma" or a "mystery", it's not a "belief system", "unexplained", "biopsychosocial", "difficult to define", nor a "diagnosis of exclusion" and DOES have objective signs.  It's what it says on the box, a serious multisystem disease (the people who say othewise have no place meddling in areas beyond their expertise), albeit one that needs much more medical attention and less glib, patronising Orwellian dishonesty.

    The reasons why so many professionals appear not to know about the disease is not lack of research, it's political, with the data being censored by the dominant UK CBT hegemony.  Of course, biomedical research is needed anyway, but the psychiatric empire is so powerful that it's unlikely biomedical research alone could break through without political pressure as well.

    (I also think GPs would feel less helpless if they knew it was possible to take a pro-active biomedical approach in investigating and using such treatments extant e.g. mitochondrial, antioxidant, neurological -- some of which *are* as safe as food -- rather than dispensing antidepressants as if they pay a commission.)


    Mike (last name supplied)

    Further activism ideas VERY welcome!

    If you know of any more petitions, letter writing campaigns or anything at all relating to ME activism please let me know so I can add them to this page.