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M.E. activism and advocacy... 
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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.
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ME activism - what YOU can do
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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. or ICD-CFS 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).
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Activism and advocacy resources
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The CBT and GET database is finished and online!
This is a stand-alone comprehensive guide to the use of CBT and GET on patients with Myalgic Encephalomyelitis (or ICD-CFS) 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.
A new paper is available - Smoke and Mirrors
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.
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Diagnosing M.E.
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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
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The Myths about M.E.
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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!
For a long time this type of flawed and heavily biased information, or propaganda, was all that was (readily) available but thankfully this is no longer the case and we now have access to an abundance of more scientifically accurate information that could really change things for the better for those of us with M.E. Tragically however, this information keeps being blocked at every stage by all the old harmful myths and propaganda that are still being defended and promoted by so many. It is a real problem.
What follows is a list of some of the most common myths about M.E. – some will be obvious and well known to all but those very new to the subject while others are somewhat more complex:
- MYTH:
M.E. is a new illness that appeared for the first time in the 1980’s
- MYTH:
ME never occurs in outbreaks
- MYTH:
ME is an illness whose primary and defining feature is chronic fatigue; it is a fatiguing illness
- MYTH:
The terms 'CFS' and 'chronic fatigue' are synonymous terms and may correctly be used interchangeably
- MYTH:
People suffering with chronic fatigue have mild ME
- MYTH:
All studies or articles which use the terms M.E. or CFS are discussing the exact same patient group
- MYTH:
There are 8 major symptoms which define ME/ICD-CFS* (along with fatigue) and these are the symptoms 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)
- MYTH:
Fitting the Fukada criteria for CFS (as described above) means that you have M.E.
- MYTH:
Fibromyalgia and M.E. are basically (or exactly) the same illness: fatigue is the worst symptom of ME and in Fibromyalgia the worst symptom is always pain and that's really the only way you can tell which one you have (as they are so similar). M.E. is also basically (or exactly) the same illness as Lyme disease and Gulf War Syndrome, Multiple Chemical Sensitivity Syndrome (and several other illnesses).
- MYTH:
M.E. is a mild illness from which every person will eventually completely recover and is never progressive or fatal
- MYTH:
M.E. has been scientifically proven to be caused by psychological factors
- MYTH:
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. Despite the wide array of symptoms no research exists which shows that M.E. has a physical or organic basis
- 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
- MYTH:
It is only recently that researchers have finally shown that M.E. has a physical or organic basis
- MYTH:
Only very mild abnormalities have ever been found in M.E. patients
- MYTH:
M.E. is strongly associated with (or related to) depression
- MYTH:
M.E. is perpetuated by deconditioning and inactivity
- 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. These treatments are also completely safe for sufferers and there is no risk of these therapies worsening the illness in the short or long term
- 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
- MYTH:
M.E. is only a diagnosis of exclusion, a wastebasket diagnosis
- MYTH:
M.E. can not be diagnosed until after 6 months have passed
- MYTH:
There are never any observable physical signs of illness in M.E., it is an ‘invisible illness’
- 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.
- MYTH:
Research into ME/ICD-CFS is well funded by government
- MYTH:
M.E. primarily affects white, affluent and well-educated women more than any other group
- MYTH:
There are no children who have M.E.
- MYTH:
Most people (or everyone) with M.E. has a ‘type A’ or perfectionist personality and this has caused the illness or made them more susceptible to the illness or perpetuated the illness
- MYTH:
M.E. can result from becoming run down physically or is the end result of high levels of stress, long term stress, burnout, adrenal exhaustion caused by stress or childhood trauma or abuse
- MYTH:
M.E. can be caused by the Epstein-Barr virus, candida, adrenal exhaustion or glandular fever
- MYTH:
There are no treatments available for M.E.
- MYTH:
The term Myalgic Encephalopathy is more accurate than the term Myalgic Encephalomyelitis and so using the term Myalgic Encephalopathy is in our best interests
- MYTH:
All M.E. Organisations and individuals which publicly state that M.E. is not ‘all in your head’ are trustworthy and are working for the benefit all M.E. sufferers
- 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
- 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 (given that fatigue was always the worst symptom and that so little was known about the pathology of this new illness at the time)
- 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
- 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 we will automatically start to get the medical recognition and respect we deserve
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'.
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.
It is not a matter of if ME sufferers will win the battle for formal recognition and fair treatment but of when; when is entirely up to us.
As Hillary Johnson, author of ‘Osler’s Web’ (a book which exposed the truth behind the US 1980’s 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.'
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 and longstanding victimisation, neglect and abuse of some of the most vulnerable members of our society.
Sources of M.E. information on this site (which debunk all the myths listed above) include:
- Putting Research and Articles on ME into Context
- What is ME? A Medical and Political Overview
- M.E: The Medical Facts – A Medical Overview
- Fatigue Schmatigue
- Research and Articles
Most of these texts are also available as 2 page summaries for those who find reading difficult, all texts are also available in large print versions for those who need them. The most severely affected M.E. sufferers of course will be unable to read any of these texts; the responsibility therefore falls to the rest of us who can speak out, to do so just that little bit louder on their behalf - if we are able.
Other useful sources of information include:
- Reading/buying the top 5 books on ME/ICD-CFS detailed in the ME book review section would tell you just about everything you could want to know.
- Or you could join one of the ME/ICD-CFS information/political lists for regular email updates (details in the Research and Articles section)
- You might also like to check out some of the links to recent research papers, political essays and much more in the Research and Articles section. There are some really brilliant pieces there - many of them in fact. All well worth reading.
Once you have all the information; refuse to listen any more to the propaganda being spread about M.E. and set about sharing your newfound knowledge with as many other MEers as you can (and anyone else you can get to listen). Refuse to accept anything less than the facts about M.E. and encourage others to do the same.
Knowledge is power.
A text which explains the reality behind each of these myths individually, will be made available later in the year.
This text can be downloaded in a printer friendly Word format, PDF format or as a Large-print PDF
Permission is given for this document to be freely redistributed by e-mail or in print for any not-for-profit purpose provided that the entire text (including this notice and the author’s attribution) is reproduced in full and without alteration.
*Note: The term ME/ICD-CFS may not be widely known as yet but it is used to ensure the distinction between Chronic Fatigue Syndrome (CFS) as classified in the World Health Organisations International Classification of Diseases (as another name for the severely debilitating organic neurological disorder Myalgic Encephalomyelitis) and the - politically and financially motivated - vague, all encompassing and broadly defined 'fatiguing' version of CFS - two entirely different problems.
It is also important to be aware that in practice M.E. and CFS are not synonymous terms. For more information about how two completely unrelated health problems came to sometimes share a name click here.
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References...
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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'
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M.E. activism gear...
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*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.
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Some reading on ME activism...
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A short note on terminology and definitions...
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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), and the definition of the term 'ICD-CFS' see: The misdiagnosis of CFS, Why the disease category of ‘CFS’ must be abandoned and Smoke and Mirrors
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Political/information groups and websites...
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MEAction UK is a UK based political discussion group.
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"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.
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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.
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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) |
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Myalgic Encephalomyelitis petitions...
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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?
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Support M.E. research...
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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.
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On the uselessness of passivity (and compromising)....
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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:
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