The Hummingbirds' Foundation for M.E.

The Hummingbirds' Foundation for M.E. (HFME) is fighting for the recognition of M.E.,
and for patients to be accorded the same basic human rights as those with similar
disabling and potentially fatal neurological diseases such as M.S.

An important note:

Before reading the research/advocacy information given in the links below, please be aware of the following facts:

1. 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. The
A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy paper is recommended reading and 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.

In future, it is essential that M.E. research again be conducted using only M.E. defined patients and using only the term M.E. The bogus, financially-motivated disease category of ‘CFS’ must be abandoned.

2. The research referred to on this website varies considerably in quality. Some is of a high scientific standard and relates wholly to M.E. and uses the correct terminology. Other studies are included which may only have partial or minor possible relevance to M.E., use unscientific terms/concepts such as ‘CFS,’ ‘ME/CFS,’ ‘CFS/ME,’ ‘CFIDS’ or Myalgic ‘Encephalopathy’ and also include a significant amount of misinformation. Before reading this research it is also essential that the reader be aware of the most commonly used ‘CFS’ propaganda, as explained in A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy and in more detail in Putting research and articles on Myalgic Encephalomyelitis into context.

HFME activism papers

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.

Activism, what can you do to help?

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).
 

Please see the About HFME page to find out more about participating in the advocacy work of the HFME.



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.

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 plea for those doing interviews about M.E.

    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)

    Activism articles

    Thyroid Function In ME: Is There A Major Diagnostic Problem? by Dr Elizabeth Dowsett

    "It as been suggested that 'scandalous medical ignorance leading to an epidemic of undiagnosed thyroid deficiency, underlies the increasing prevalence of ME in modem times"(1) Can such a challenge be ignored? Does it stand up to my own experience of clinical and laboratory medicine in the NHS (including the years of epidemic and pandemic ME between 1965 and 1990)? Of course not! - but first we have to define the thyroid problems under discussion."


    *O* A Rose By Any Other Name by Dr Elizabeth Dowsett

    Both the earliest definition (HOLMES et al, 1988) and its revision (FUKUDA, 1994) elevated tonsillitis, glandular enlargement and fatigue to unreal importance while overlooking the characteristic encephalitic features of the genuine illness.  These mistakes also inflated the possibility of a psychiatric diagnosis, leading to the incorporation of such a heterogeneous population of psychiatric and non-psychiatric causes later on, that research groups of different persuasions were unable to compare results or evaluate treatment.


    *O* Time to put the exercise cure to rest? by Dr Elizabeth Dowsett

    There is ample evidence that M.E. is primarily a neurological illness. It is classified as such under the WHO international classification of diseases (ICD 10, 1992) although non neurological complications affecting the liver, cardiac and skeletal muscle, endocrine and lymphoid tissues are also recognised. Apart from secondary infection, the commonest causes of relapse in this illness are physical or mental over exertion 1. And, on follow up over decades (rather than weeks or months), the average person so disabled is found to be functioning (as a student, employee or parent for example) dangerously near their energy limits. The prescription of increasing exercise is such a situation (or in the early stage of the illness when the patient desperately needs rest) can only be counter-productive.

    [In other words - YES!]


    *O* The Late Effects Of M.E. - Can they be distinguished from the Post-Polio Syndrome? by Dr Elizabeth Dowsett

    "The number likely to be affected by the post-polio syndrome has been calculated as between 200-270/100,000 currently[7], but no account has been taken of survivors from non-paralytic polio which could easily double that figure. Possible costing for ME support has been based on 3 times the cost of maintenance for multiple sclerosis on the supposition that ME is 3 times as common[4]. The only costs that we can be sure of are those derived from the failure of appropriate management, and of inappropriate assessments which waste vast sums of money and medical time while allowing patients to deteriorate unnecessarily.[16]
    Research workers must be encouraged and appropriately funded to work in this field. However they should first be directed to papers published before 1988, the time at which all specialised experience about poliomyelitis and associated infections seem to have vanished mysteriously![11,12,13]"


    *O* Redefinitions of ME - a 20th Century Phenomenon by Dr Elizabeth Dowsett

    "If the cause of a disease, the way in which it is acquired and the processes by which damage is caused are known, no definition is needed.  To the very few physicians still practicing today who began seeing patients with this illness some 40 years ago and who have continued to record and publish their clinical findings throughout, the current enthusiasm for renaming and reassigning this serious disability to subgroups of putative and vague “fatigue” entities, must appear more of a marketing exercise than a rational basis for essential international research.  It was not always  so unnecessarily complicated!"


    Is Stress more than a modern buzz word? by Dr Elizabeth Dowsett

    "The major disadvantage of this illness is not a medical one but relates to a social climate of opinion in the media and medical press, which ascribes this serious neurological disability to some type of “personality disorder” rather than to underlying organic causes, of which we now have overwhelming research evidence.  While this monstrous distortion of the facts blames the patient for deliberately causing and maintaining the illness, it conveniently absolves the statutory caring agencies from caring."


    *O* The impact of persistent enteroviral infection by Dr Elizabeth Dowsett

    By 1972, a distinguished group of clinicians and scientists had set out to share information, form research groups and hold national and international conferences related to the problems of ME. Following successful vaccination against the three polio viruses during the early 1960s over 60 epidemics of atypical, non paralytic polio had been recorded in the UK alone. It was obvious that (since Nature abhors a vacuum) the non polio enteroviruses were naturally filling the gap(6), and demonstrating their potential for inducing a serious neurological disease of considerable chronicity, mainly affecting school children and middle aged adults in the most important and productive years of their lives. Most of the famous London teaching hospitals were involved, at that time in investigating epidemics and in subsequent research while links were forged with international institutions in USA, Canada, Europe and Australasia, facing the same problems.


    *O* Research into ME - 1988-1998 Too much PHILOSPHY and too little BASIC SCIENCE! by Dr Elizabeth Dowsett

    WHAT IS RESEARCH? It is simply an attempt to discover the truth.  However, even in 1999, this search may still concentrate on  one of 2 alternate pathways:

    a) The METAPHYSICAL (or philosophical) route which seeks to establish truth purely by reason and argument. b) The PHYSICAL (or scientific) path which sets out to determine facts by systematic investigation of material events and by experiment.

    The metaphysical approach bears much the same relationship to the scientific as ASTROLOGY (which involves the influence of the stars on human affairs) does to ASTROPHYSICS (which determines the chemical and physical composition of astral bodies).

    ...1988 The metaphysical approach ousts science once again.  Although research funding  for the study of ME is minimal in the UK, the major sources (totalling some £5 million in recent years) are non governmental agencies such as the Pharmaceutical and other industries.  The major beneficiaries are, without doubt, members of the psychiatric profession who have exhumed ancient terms such as “hysteria” and invented new ones such as “somatisation” to explain that patients suffering from ME perpetuate their own illness.  Previously reputable medical journals concur with this strange philosophy(11.)


    *O* Differences between ME & CFS by Dr Elizabeth Dowsett

    "There are actually 30 well documented causes of ‘chronic fatigue’. To say that ME is a ‘subset’ of CFS is just as ridiculous as to say it is a ‘subset’ of diabetes or Japanese B encephalitis or one of the manifestly absurd psychiatric diagnosis, such as, ‘personality disorder’ or ‘somatisation’.

    ME is a systemic disease (initiated by a virus infection) with multi system involvement characterised by central nervous system dysfunction which causes a breakdown in bodily homoeostasis (The brain can no longer receive, store or act upon information which enables it to control vital body functions, cognitive, hormonal, cardiovascular, autonomic and sensory nerve communication, digestive, visual auditory balance, appreciation of space, shape etc). It has an UNIQUE Neuro-hormonal profile"


    *O*  The Complexities of Diagnosis by Byron Hyde MD

    (Taken from: Handbook of Chronic Fatigue Syndrome by Leonard A. Jason, Patricia A. Fennell and Renée R. Taylor)

    The physician and patient alike should remember that CFS is not a disease. It is a chronic fatigue state as described in four definitions starting with that published by Dr. Gary Holmes of the CDC and others in 1988 (Holmes, Kaplan, Gantz, et al., 1988; Holmes, Kaplan, Schonberger, et .al., 1988). The definition created by Lloyd, Hickie, Boughton, Spencer, and Wakefield (1990) is also widely used in Australia. There are two subsequent definitions. The Oxford definition of 1991 (Sharpe et al., 1991) and the 1994 NIH/CDC definitions (Fukuda et al., 1994) are basically, with a few modifications, copies of the first definition. Where the one essential characteristic of ME is acquired CNS dysfunction, that of CFS is primarily chronic fatigue. By assumption, this CFS fatigue can be acquired abruptly or gradually. Secondary symptoms and signs were then added to this primary fatigue anomaly. None of these secondary symptoms is individually essential for the definition and few are scientifically testable. Despite the list of signs and symptoms and test exclusions in these definitions, patients who conform to any of these four CFS definitions may still have an undiagnosed major illness, certain of which are potentially treatable.

    Although the authors of these definitions have repeatedly stated that they are defining a syndrome and not a specific disease, patient, physician, and insurer alike have tended to treat this syndrome as a specific disease or illness, with at times a potentially specific treatment and a specific outcome. This has resulted in much confusion, and many physicians are now diagnosing CFS as though it were a specific illness. They either refer the patient to pharmaceutical, psychiatric, psychological, or social treatment or simply say, "You have CFS and nothing can be done about it."

    [On the differences between ME and CFS]


    *O*O* 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 by Dr Byron Hyde

    [This paper discusses several of the epidemics]

    ‘Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis (M.E.). It is not. Though CFS is based upon a typical M.E. epidemic, in my opinion it has always been a confused and distorted view of reality. The invention of Chronic Fatigue Syndrome has to be one of the most curious cases of inventive American scientific imperialism that one could imagine. It is my opinion that the CDC 1988 definition of CFS describes a non-existing chimera based upon inexperienced individuals who lack any historical knowledge of this disease process. The CDC definition is not a disease process.’

    *HIGHLY RECOMMENDED*


    *O* Are Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Synonymous Terms? by Byron Hyde MD

    Abstract: At the 1998 M.E. /CFS conference in Australia, both Myalgic Encephalomyelitis and Chronic Fatigue Syndrome were used to describe a chronic illness. This paper is a discussion on the similarities and differences in these two terms that may lead to scientific difficulties. The author suggests that the definitional criteria and epidemic history of Myalgic Encephalomyelitis (M.E.) and the inclusion criteria are significantly different from the CDC definitions and history. The three typical phases of M.E. are discussed. A brief review of some of the known deaths in phase 2 of M.E. are also mentioned.


    The Nightingale Definition of Myalgic Encephalomyelitis (M.E.) by Dr Byron Hyde 2006

    Preface

    Since the Nightingale Research Foundation's publication in 1992 of its textbook, The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, there has been a tendency by some individuals and organizations to assume that M.E. and CFS are the same illness. Over the course of two International Association of Chronic Fatigue Syndrome (IACFS, formerly the American Association of CFS) conferences, there have been suggestions that the name CFS be changed to M.E., while retaining the CFS definitions as a basis for such change. This does not seem to me to be a useful initiative: it would simply add credence to the mistaken assumption that M.E. and CFS represent the same disease processes. They do not.

    M.E. is a clearly defined disease process. CFS by definition has always been a syndrome

    At one of the meetings held to determine the 1994 U.S. Centers for Disease Control and Prevention (CDC) definition of CFS, in response to my question from the floor, Dr. Keiji Fukuda stated that numerous M.E. epidemics he cited the Los Angeles County Hospital epidemic of 1934, the Akureyri outbreak of 1947-48 and the 1955-58 Royal Free Hospitals epidemics-- were definitely not CFS epidemics. Dr. Fukuda was correct.


    Clinical Features of M.E. by Byron Hyde MD.

    I will call for the recognition of M.E. as a more distinct clinical entity than CFS. I will also note that CDC as described by the CDC and the UK and Australian groups is actually a more diverse disease spectrum associated by a common group of symptoms but often with vastly different etiology, physical findings and clinical outcome.


    Letter written by Dr. Hyde as requested by CFS Support Groups Regarding NIH/CDC Fund Diversion of CFS Funds:

    When I first discovered this apparent NIH/CDC diversion of funds from the Congress approved funding for research into CFS it was by accident. It was some 5 years ago .I then discussed the problem of the NIH/CDC misinformation on funding with Hillary Johnson. This was just prior to her completing and publishing her magnificent Osler’s Web in 1996. I don’t know if she mentioned the fact about that information in her book. I know at the time she had so much information, that because of its potentially libelous nature, she could not print it. She also had material that her publisher’s lawyers suggested she remove; perhaps it did not get into her excellent book. In the end her already long chronicle of injustices and stupidities in the world of M.E./CFS was much shorter.


    *O* What is ME? What is CFS? Information for Clinicians & Lawyers by Eileen Marshall, Margaret Williams & Professor Malcolm Hooper, 2001

    Lawyers may wish to consider if a small group of exceptionally influential doctors should be allowed to determine public policy without there being some external moderation. They may wish to consider why disease definition has become socially constructed, resulting in political tensions between sufferers, medical science and the modern State, a consequence of which is the intentional construction of "mental illness" by some groups of medical professionals resulting in stigma caused by the on-going denial. (172)

    If clinicians and lawyers are unaware of this background and accept the readily proffered psychiatric explanations as if objective and based on sound scientific research, they will be unable to support their patients / clients with ME will risk failing in their professional duty in this difficult area.

    [Contains an in-depth medical and political overview of M.E]


    *O* The Montague/Hooper Paper by Sally Montague and Professor Malcolm Hooper, 2001

    Full title: CONCERNS ABOUT THE FORTHCOMING UK CHIEF MEDICAL OFFICER’S REPORT ON MYALGIC ENCEPHALOMYELITIS (ME) AND CHRONIC FATIGUE SYNDROME (CFS), NOTABLY THE INTENTION TO ADVISE CLINICIANS THAT ONLY LIMITED INVESTIGATIONS ARE NECESSARY

    We are unable to agree with advice to clinicians that only limited investigations are necessary or appropriate for ME/CFS sufferers and believe that such a view is medically and scientifically untenable; hence we believe there is a legitimate case for making this known in advance of the Report being issued. In our opinion, it is entirely unacceptable to advise clinicians that investigations on ME/CFS patients should be limited to a minimal basic routine screen, especially as basic screening is known to be often normal in ME/CFS.

    [Includes a summary of much of the medical research into ME]

    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.


    The Lightning Process by Lesley Ben

    "Positive thinking, empowerment, the creation of helpful new neuronal pathways and so on may be helpful to all people who are seriously ill.  There is certainly a feedback mechanism between the mind and body.

    However, if recovery can be achieved by changing the ill person’s beliefs and curing the body via the mind-body link, then the illness was not ME.  In such a case the illness was psychosomatic and involved those ‘erroneous illness beliefs’ beloved of the psychiatric lobby. 

    (Similarly, if regulating adrenaline via the mind-body link effects a cure, then the illness was not ME but adrenal dysfunction.  It should not need saying that ME involves dysfunction of many systems besides adrenal regulation)

    To claim that LP can cure ME is offensive.  It implies that the illness is psychiatric, either in its origin or in its perpetuation mechanism.  (Strangely, LP practitioners deny this; using doublethink and doublespeak that Orwell would have marvelled at, they state that the illness is physical while claiming that it can be cured by psychological methods.)

    To claim that LP can cure ME is politically harmful.  As above, LP practitioners appease patients by stating that the illness is physical, while playing into the hands of the psychiatric lobby by seeking to demonstrate that it is in fact psychological in that it can be cured by a ‘talking therapy.’

    To claim that LP can cure ME is dangerous.  It is crucial that people with ME do not push themselves beyond their physical limits.  Study after study has proved that Graded Exercise Therapy (GET) has been proven to be damaging for this reason.  LP suggests that people with ME are ‘stuck’ and do not challenge themselves, possibly due to fear of the consequences of exertion.  The opposite is true: most people with ME tend to overdo it, and only by bitter experience learn the terrible consequences of doing so.   While there is no cure yet for ME, the most important thing sufferers can do to help themselves is not to go beyond their limits.  If encouraged to disregard their limits by LP, ME sufferers may do themselves irreparable harm."


    The WHO ICD in relation to M.E. and ‘CFS’ by Lesley Ben


    CONCEPTS OF ACCOUNTABILITY? by Professor Malcolm Hooper and The Hooper Team, 2001

    This present document should be read in conjunction with the amended original Montague / Hooper paper

    Disturbingly, the prime authors of the UK Chief Medical Officer’s report on CFS/ME are apparently determined to equate ME with “CFS” as one single entity, which they refer to as “CFS/ME” (see below). To do so takes no account of the different interpretations of the undifferentiated term “CFS” and it is likely to perpetuate the existing confusion to the detriment of those with non-Oxford defined CFS. It is already known that the CMO’s Report on CFS/ME will recommend psychiatric management approaches: such approaches may be appropriate when considering the Oxford definition of CFS but may be harmful when considering the international interpretation of “CFS” which more closely equates with ME.

    Montague and Hooper believe that by seeking to equate one specific syndrome or subgroup with another syndrome or subgroup which does not have the same features, the CMO’s Working Group may be doing a grave disservice to both patients and medical science: they believe it is scientifically unacceptable that one name should refer to two different case definitions, each of which having different symptom profiles.  Montague and Hooper are concerned at the repeated refusal by the CMO’s Key Group to acknowledge the clinical difference between ME and other forms of CFS, a difference which many believe has important implications for management and treatment outcomes, as well as for service provision.

    [A solid overview of the medical and political facts surrounding M.E. and CFS in the UK.]


    Full title: A CONSIDERATION OF THE ROLE OF PROFESSOR SIMON WESSELY AND OTHER MEMBERS OF THE “WESSELY SCHOOL” IN THE PERCEPTION OF MYALGIC ENCEPHALOMYELITIS (ME) IN THE UK

    To the detriment of the sick, the deciding factor governing policies on medical research and on the management and treatment of patients is increasingly determined not by medical need but by economic considerations.


    *O* The Terminology of ME & CFS by Professor Malcolm Hooper (undated)

    Despite the claims of some psychiatrists, it is not true that there is no evidence of inflammation of the brain and spinal cord in ME; there is, but these psychiatrists ignore or deny that evidence.  It is true that there is no evidence of inflammation of the brain or spinal cord in states of chronic fatigue or "tiredness". 

    It is also true that neither the 1991 (Oxford) criteria nor the 1994 (CDC) criteria select those with ME, as they both expressly include those with somatisation disorders and they expressly exclude those with any physical signs of disease (as is the case in ME), so by definition, patients with signs of neurological disease have been excluded from study. 

    It is also true that Professor Simon Wessely and his colleagues use the terms "fatigue", "chronic fatigue", "the chronic fatigue syndrome (CFS)" and "myalgic encephalomyelitis (ME)" as synonymous.  Such obfuscation has greatly hindered research.


    *O* Engaging with M.E.by Professor Malcolm Hooper
     
    Hard copies may be obtained (price £4.00 plus £1.10 postage) from Malcolm Hooper, Emeritus Professor of Medicinal Chemistry, School of Sciences, University of Sunderland, Sunderland, SR2 3SD, UK. [Copies of 'What is ME? What is CFS? are also available]

    This is a fully referenced 85 page document which contains colour photographs. It is dedicated to Derek Peters of the Northern Ireland Campaign for ME/CFS Healthcare (who sponsored the publication), to the late Dr John Richardson (a compassionate clinician and champion of more than 4000 ME sufferers for over 50 years) and to “all who suffer with and care for people with ME, who have taught me so much about courage, endurance and being fully human”.

    In his customary robust form, Hooper deals with facts, not beliefs or speculation and those facts are soundly based on biochemistry, which those who promote a primary psychiatric pathoaetiology will find difficult to refute with any degree of credibility.


     
     

    *O* Worldwide Epidemic/Over 1 Million in U.S. Atypical Polio, Myalgic Encephalomyelitis, Gulf War Syndrome Vaccines and Toxic Chemicals Government Agencies Obscuring the Evidence

    We are here today, because a widespread epidemic of Myalgic Encephalomyelitis has descended upon this country. In less than twenty years time there are now over 1 million victims in the US alone and millions more worldwide. We are here because the national health agencies have not addressed this danger to the public health nor sought to find the cause or remedies for the suffering.


    *O* A Public Statement to Government Health Ministers and an ALERT to citizens worldwide

    Just twenty years ago an Epidemic of the infectious neurologic disease Atypical Polio began to skyrocket like never before and the Government agencies have been covering it up ever since. Thousands have died and millions are now disabled.



    *O*
    ME and CFS, The Definitions

    All definitions which wear the 'f' word (ie. fatigue) in their name are not ME nor neurological. They are definitions of fatigue conditions. And when these definitions were written it was not neurological ME which they were attempting to define.


    *O* Recent Epidemics: Why are the Epidemics so important

    The very alarming and most disturbing aspect of this disease is that amid this epidemic explosion of disease, the national public health agencies failed to act, and ignored the pleas from doctors in affected communities. In the USA, the Centers of Disease Control and Prevention (CDC) at first ignored the reports, then without any need for evidence immediately declared that there were no outbreaks, then acted to delay any investigation. Subsequently the CDC responded by obscuring the evidence, and confusing the medical community and the public regarding the nature, history and identity of this disease.

     


    How Serious is ME

    The complete answer to this question is clearly important and not yet fully established. However the families of patients that have succumb to this disease may hold a different opinion. These few brief reports on this page will help demonstrate the diverse course and consequence of infection with Myalgic Encephalomyelitis. ME has a variety of manifestations and outcomes, some patients improve but many more follow a chronic trajectory. Lifelong disability is common.

    The full range of symptoms and consequences of ME are too numerous to fully discuss here, however the most dangerous can be described as related to three factors. Infection of the brain, Metabolic changes and Immune dysfunction.

    [Contains research]


    The Tahoe Outbreak


    Another Meadow? Eileen Marshall and Margaret Williams, 16th July 2005


    Vade MEcum Eileen Marshall and Margaret Williams, 28th June 2005


    Politically-modified Research Eileen Marshall and Margaret WIlliams, 26th June 2005


    Questions for the MRC Eileen Marshall and Margaret Williams, 18th June 2005


    Evidence Based Psychiatry Eileen Marshall and Margaret Williams, 12th June 2005


    Conflicting Concepts? Eileen Marshall and Margaret Williams, 28th May 2005


    Megalomania in Modern Medicine? Margaret Williams, 7th May 2005


    For the attention of All Members of Parliament - Old and New Margaret Williams 4th May 2005


    Vilified but Vindicated?  Malcolm Hooper Eileen Marshall and Margaret Williams 29th April 2005


    CDC Provides Clarification At Last by Margaret Williams, 26th April 2005


    High Standards at the MRC By Eileen Marshall and Margaret Williams, 21st April 2005


    *O* Profits Before Patients? Eileen Marshall and Margaret Williams, 15th April 2005


    *O* Science or Psychology? Margaret Williams, 29th March 2005


    ME: who is attacking whom? By Eileen Marshall   Margaret Williams, 5th March 2005


    More Medical Malfeasance in ME? Eileen Marshall and Margaret Williams, 2nd March 2005


    *O* Problems and Solutions ? by Eileen Marshall and Margaret Williams, 23rd February 2005


    Notes for UK Members of Parliament about ME/ICD-CFS  by Margaret Williams, 13th February 2005


    Wessely’s Wisdom? Some more open questions for Professor Wessely by Margaret Williams, 16th January 2005


    Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and Fibromyalgia:additional considerations for the MRC in relation to the PACE trials by Margaret Williams, 5th January 2005


     
    *O* SCIENCE or SEMANTICS? by Margaret Williams, 8th December 2004


    Deliberate Dichotomy? by Eileen Marshall and Margaret Williams, 10th November 2004


    Reflections on the US ME/CFS Research Symposium Report by Eileen Marshall and Margaret Williams, 5th November 2004 


    *O* CRITICAL CONSIDERATIONS by Margaret Williams, 1st November 2004

    Clarification about CRITICAL CONSIDERATIONS by Margaret Williams, 2nd November 2004


    An Inquiry by the UK House of Commons Health Select Committee into the Influence of the Pharmaceutical Industry by Margaret Williams, 28th October 2004 


    Paradoxical Proliferation of Professorial Psychiatry?  by Margaret Williams, 24th October 2004


    Transparency in Government? by Eileen Marshall and Margaret Williams, 17th October 2004


    *O* Note on the term “Myalgic Encephalomyelitis” by Eileen Marshall and Margaret Williams, 16th October 2004


    An open letter to the "Wessely School" psychiatrists by Margaret Williams, 14th October 2004


    THE CEREBELLUM HYPOTHESIS By Margaret Williams, 9th October 2004 


    ME Research (UK) by Eileen Marshall & Margaret Williams, 30th September 2004 


    Observations on Professor Simon Wessely’s evidence to Lord Lloyd’s Public Inquiry into Gulf War Illnesses by Eileen Marshall and Margaret Williams, 28th August 2004


    Malcolm Hooper and Margaret Williams ask Peter White some questions, 31st July 2004


    A Warning to the ME/CFS Community by Margaret Williams, 28th June 2004


    INFORMATION ON MYALGIC ENCEPHALOMYELITIS (ME) FOR THE USE OF THE MEDICAL RESEARCH COUNCIL (MRC) AND THE NATIONAL INSTITUTE FOR CLINICAL EXCELLENCE (NICE) Margaret Williams, 25th June 2004 


    Issues re the use of the Oxford criteria for the MRC “CFS” Trials by Margaret Williams, 20th June 2004


    Sinister Science By Margaret Williams, 6th June 2004


    Viral Mind Views...political stances versus actual science by LK Woodruff

    See also:

  • An APPEAL to ALL
  • On the Canadian guidelines

    THE ME SITUATION IN DENMARK - 17 years after official recognition Lajla Mark

    It has been a heart-breaking experience to follow this ME-down-the-drain-evolution in Denmark and to watch the ME patients (children and adults) being totally ignored - and totally confused about which disease they in fact suffer from.

    We simply have to ask:

    Would this have happened if we had stuck to the term ME as it was recognized and listed by our NIH in the first place?

    Does this form a pattern that other countries ought to be aware of?

    We certainly think so!


    Response to the ProHealth Name Change Committee and the IACFS: John Anderson

    A very small group of American "World Class Experts" are not representative of all the international experts, many of whom who studied the disease ME long before the CDC attempted to obscure it by creating the misnomer CFS in 1988 and the broadly defined criteria that excluded the cardinal features of Myalgic Encephalomyelitis, which had been known as Atypical Poliomyelitis prior to 1956 due to the similarities with Poliomyelitis. The proposed name change is another dangerous mistake like CFS that is not supported by international scientific consensus and must be stopped to prevent a repeat of the last 20 years of confusion.

    A recent editorial states: "'ME' has historically been used to describe 'Myalgic Encephalomyelitis' (nervous system inflammation involving muscle pain) - a term that does not accurately describe the disease process in all patients." That misses the crucial point that they have been studying broadly defined CFS patients and not strictly defined ME patients - this false assertion can only be a calculated gamble that patients will fall for such propaganda! In a further editorial it states: "Patients will have the opportunity to hear all sides of the argument and will ultimately make the decision: Is ME/CFS better than CFS? And which 'ME' is better - the one that has been used for 60 years, or the one that is more medically accurate and up to date?" We may suffer from brainfog but most of us are intelligent enough to recognise this manipulative trick.

    In an IACFS conference report by Dr Charles Lapp, he notes that the organization has changed its name to IACFS/ME(opathy) and: "an ad hoc Name Change Committee, put together by ProHealth CEO Rich Carson, also recommended using the term ME (Myalgic Encephalopathy) in lieu of CFS. CFS will probably remain the scientific term for the illness, but it is hoped that ME will become the common designation." So the committee has already indicated the predetermined outcome of the final decision, and CFS with its vague criteria and associated stigma will strangely remain the "scientific term for the illness"? This bizarre logic is baffling and will not put an end to the controversy and disbelief that have caused patients so much distress.

    Myalgic Encephalopathy is open to psychiatric interpretation as it is not coded in any WHO classification, and the CDC/Fukuda/Holmes based CFS criteria include psychiatric patients, in fact anyone with fatigue! The IACFS Conferences still give far too much preference to fatigue and behavioural studies, and the highly inappropriate CBT/GET research. Fatigue is not a disease, it is a symptom of all chronic illnesses and exercise is only gradually commenced after successful treatment, not as a misguided substitute! The evidence for mitochondrial dysfunction and exercise intolerance is not in doubt so why are these psychiatric studies still getting funding and taking up valuable time and space at a medical conference?

    It is apparent that the name change committee does not wish to look beyond the distorted findings of these heterogenous CFS studies which inevitably produce inconclusive results, so who do they really represent? They will not consider the mounting evidence from independent unbiased researchers and the conclusions from autopsies that do confirm CNS inflammation and vasculitis, while referencing the history of the coinciding epidemics of ME and Poliomyelitis that began in 1934, the later discovery of 69 related polio and non-polio enteroviruses, and the current evidence of damage to the Rnase L anti-viral pathway.

    The experts who first named the disease Myalgic Encephalomyelitis some 50 years ago did so based on all the evidence at the time including autopsies which demonstrated inflammation of the spinal cord, and this has been confirmed again as recently as 2006 in a horrifying case of medical neglect and psychiatric abuse in the UK, while in the US an autopsy on a young man revealed viral inflammation of the heart! How many more lives will it take? Why do politics dictate medical inquiry? ME researchers have been forced to use the name CFS and its definitions to have their studies published in peer-reviewed medical journals, and this unethical situation will continue to waste more precious money on predictably inconclusive research results.

    ME does not need renaming - it must be reinstated as the only medically justified term for the disease at this time - and CFS must be abandoned if respect and funding are the priority.

    Myalgic Encephalomyelitis has officially existed for 50 years and together with its previous name Atypical Poliomyelitis provides a continuous historical record of the illness spanning a staggering 70 year period. The only other justified change at this point would be to remove the word "benign" from the WHO-ICD, and the public rightfully alerted to this most pertinent fact.

    We can also be justifiably wary of this name change at a time when major funding is still not being allocated to medical research!

    It is time we stopped debating the long established name and instead focus our attention on restoring the basic human rights of patients by securing major funding for intensive medical research, educating the medical profession, and delivering long overdue treatment. It is time we were heard.

    We cannot afford to have another damaging name imposed on us again - we must act now!


    The War on M.E. - supported by our CFS and CFIDS organizations? John Anderson

    If these so-called ME organisations lack unity and agreement on so many of the basic facts including the historically correct name, how can we expect governments to take them seriously? Too many of these groups are operating under various names such as CFS, CFIDS, or CFS/ME [or ME/CFS] and using the outdated and unscientific Fukuda et al definitions and varying descriptions of the CFS invention that do not describe the serious neurological and multiple system disease ME, which clearly is a notifiable pandemic.

    This is a serious public health issue, patients are suffering and dying without appropriate medical treatment, and more will succumb to this disease while the organisations that are supposed to be advocating for us can't even agree on the scientifically verifiable facts - Myalgic Encephalomyelitis is a clearly defined and diagnostically testable disease with a history of epidemic contagion, while CFS was a cleverly designed illness construct to hide the ME pandemic.

    The current confusion over the name in the US is that CFS, the fabricated condition that somehow became officially synonymous with the real disease Myalgic Encephalomyelitis, is to be cunningly renamed Myalgic Encephalopathy. The problem is that both names share the initials ME, and since Myalgic Encephalopathy will retain the terribly misleading CFS criteria this name is nothing more than a clever diversion to draw our attention away from the real issues.

    The pandemic disease Myalgic Encephalomyelitis has quietly destroyed millions of lives while the CFS hysteria and confusion has raged on, and it seems likely that this latest name change diversion will prolong the confusion and misunderstanding of the disease, and blind everyone to the criminal medical neglect of seriously ill Myalgic Encephalomyelitis patients. What is your organisation doing to help change this?

    Myalgic Encephalomyelitis is the historically recognised name and the current science supports its inception since 1956, and until the scientific consensus suggests otherwise, it must be formally and publicly recognised by all governments and medical organisations as the distinct neurological disease documented for over 70 years and classified by the WHO since 1969 to attract major funding and public respect for patients.

    So who do these CFS, CFIDS, and CFS/ME organisations with their various definitions of CFS actually represent? If they will not clearly identify as Myalgic Encephalomyelitis organisations and clarify their support for the documented history of ME, the mounting research supporting the evidence of inflammation and the 2003 Canadian Consensus Definition, then patients should know that they are being deceived.

    Patients can empower themselves by demanding that these organisations stop hiding behind the obfuscation of CFS, CFIDS and CFS/ME, demonstrate that they represent strictly defined Myalgic Encephalomyelitis and take action to force governments and medical organisations to publicly recognise the disease, provide major funding for research, educate the medical profession, fund proper treatment for patients, and protect the public who remain at risk of contracting this disabling and eventually terminal disease.

    If these organisations will not rise to the challenge, patients can exert their considerable collective power by withdrawing their financial support and diverting their membership fees and donations to organisations that will work to restore our basic human rights for long overdue public recognition and medical treatment. 


    The murder of Myalgic Encephalomyelitis by Lajla Mark 2007

    Wilkommen, Bienvenue, Welcome, Ladies and Gentlemen, smiled the compére and blew kisses to the audience.

    - You are now going to witness real magic. - As an audience you are not supposed to see *how* it happens - but abracadabra .... before this show is over, I promise you, that the medical term Myalgic Encephalomyelitis will disappear right in front of your eyes.

    - We can even make thousands and thousands of people suffering from Myalgic Encephalomyelitis totally invisible. Now, watch carefully, meine Herrschaft. This is truly magic!


    Website for Sophia by her mother Criona

    Today, 9am, sees the launch of a website I have created in memory of my beautiful daughter who died of Myalgic Encephalomyelitis.I have tried, without success, to gain justice from the GMC and Social Services over the dreadful treatment my daughter received, but to no avail. I have written to two Attorney Generals, numerous MPs and solicitors - again with no result. It seems that ordinary people like me and my daughter can be treated in the most appalling way and no-one is accountable.

    I have therefore decided to publish all letters and communications appertaining to my daughter's ordeal  at the hands of the authorities, in an effort to ensure  that this should never happen again to someone  suffering from ME. I hope that the doctors and social workers involved  in my daughter's care will now reflect on what they did and learn from their mistakes and intransigence. I hope that other professionals will also learn lessons from what I have published and that no other person with ME will be treated so callously.


    Criona Wilson's lobby your MP campaign re WHO.

    Dear Your MP,

    Who Audits the WHO?
     
    Myalgic Encephalomyelitis (ME) affects over 240,000 people in the UK and a quarter of these people are so badly affected that they are housebound or bedbound. The illness is neurological; it affects all systems of the body and commonly affects many young people. M.E. has been classified by The World Health Organisation (WHO) as a physical disease since 1969.

    In 2005, a young woman called Sophia Mirza died after doctors refused to recognise her ME as a serious physical disease and instead had her "sectioned" in a mental hospital because she insisted that M.E. was a physical disease and not a mental illness. She never recovered from her incarceration and later died. Examination of her spinal cord after death confirmed she was physically ill and this was reflected by the Coroner at her inquest in 2007. (For more information see www.sophiaandme.org.uk )

    Nobody in the UK is acting to ensure that this situation does not happen again. Despite this being an disease which is classified by the WHO as neurological, NICE (who are supposedly "mandated" to follow WHO classifications, but do not), have produced Guidelines for doctors that concentrate only on mental health.

    Recently, attention has been focussed on the wrongdoings of our financial institutions and more recently on our Parliamentary system. Both these institutions were regarded as sacrosanct and above question. Time has proven our confidence in those institutions to be misplaced.

    Now it is time to look critically at the WHO which last year received a contribution of over £20,000,000 from the U.K. for 2009.

    Officials at the WHO have been repeatedly asked to explain what powers they have to ensure that signatories abide by their classification system and what sanctions they can and do impose if member states fail to do so. They have failed to answer these questions.
    In the case of ME can you please ask the Secretary Of State for Health to explain:

    1) Sir Liam Donaldson, the Chief Medical Officer of the U.K for the past ten years, is also an executive of the WHO. He has done nothing to ensure that M.E. is seen and treated as a physical disease in the UK; Why not?

    2) Why NICE has not followed the WHO classification of ME as a neurological disease and how this can possibly be justified;

    3) Why this physical disease is still being "managed" with purely psychological therapies with known adverse consequences;

    4) Sir Liam apparently has no time to engage with the 240, 000 sufferers of this illness and yet can instantly devote his time and £7million of our money to an exaggerated influenza outbreak. How can this be?

    My understanding of the situation is that our Health Ministry should take a lead from the World Health Organisation. When they ignore WHO Guidance and classification as they do in the case of ME, what remedy do we, patients and members of the public, have?

    I look forward to your timely response,


    Criona Wilson talks about Sophia and M.E. on YouTube


    Time for a Reality Check at the UK Department of Health? By Margaret Williams, 3rd April 2004


    Dysfunctional beliefs in ME/CFS? by Margaret Williams, 27 March 2004


    Perceptions of Progress? By Margaret Williams, 26th March 2004


    Professor Wessely's own lecture notes on ME (12 May 1994) {To end speculation about authenticity, Margaret Williams has released her copy of Simon Wessely's own lecture notes from which she took the quotations in her recent article (Consideration of Simon Wessely's response to The Scotsman). In his notes, a * indicates where he showed illustrative slides during his lecture. The lecture was indeed audio-taped but the tape has never been publicly released.] 17th October 2003 View


    UNUM Provident, Dr Michael Sharpe and Cognitive Behavioural Therapy: Information which the Medical Research Council might wish to consider. By Eileen Marshall and Margaret Williams, 12th April 2003


    Matters for the MRC RAG on "CFS/ME" to consider by Margaret Williams, 6th March 2003


    Ignoring the Evidence by Eileen Marshall, Margaret Williams & Professor Malcolm Hooper, 2003


    Some salient points arising from the AACFS 6th International Conference which the MRC Research Advisory Group on “CFS/ME” might wish to consider by Margaret Williams, 4th March 2003 View


    Considerations of some issues relating to the published views of Psychiatrists of the Wessely School in relation to their beliefs about the nature, cause and treatment of myalgic encephalomyelitis (ME) by Margaret Williams et al. 16th January 2003


    Margaret Williams reviews quotations from "SOMATIC MEDICINE ABUSES PSYCHIATRY - AND NEGLECTS CAUSAL RESEARCH" by Per Dalen, January 2003


    Letter to the British Journal of General Practitioners from Malcolm Hooper, Margaret Williams and EP Marshall. 21st June 2002 View


    *O* What is ME? What is CFS? Information for Clinicians & Lawyers by Eileen Marshall, Margaret Williams & Professor Malcolm Hooper, 2001

    *HIGHLY RECCOMENDED*


    What is it About Psychiatry? By Gurli Bagnall, 12 July 2005.

    What is it was about the medical profession and psychiatry in particular, that attracts the sort of person who will deliberately put  a seriously ill child into a swimming pool and stand watching as he drowns. The expert who knew best, who would brook no argument,  and who insisted the childs weakness would disappear once he ran out of breath, was wrong.  Had the boy fully clothed mother not jumped in to save him, he would have drowned


    AN INTOLERABLE OBSCENITY by Gurli Bagnall, 21 March 2005

    The job description for Trainee Clinical Fatigue Therapists in some of the new network of  12  Fatigue Clinics across England, was the last straw. While the language used was not unexpected,  to see it in black and white was nevertheless a body blow to those who suffer  Myalgic ncephalomyelitis/chronic fatigue syndrome (ME/CFS) as defined by the WHO, for it is at them that the proposed "services" are aimed.


    COOKING THE BOOKS by Gurli Bagnall, December 2004

    "'You've got the fox in charge of the henhouse," DeAngelis said in an interview.  'The pharmaceutical industry spent $4.9 million in 2003 to lobby the FDA.  That's like saying, I'm going to lobby the police department to keep cousin Guido from getting arrested for bootlegging.'" (Philadelphia Inquirer, 23 Nov. 2004)


    GWS and Simon Wessely by Gurli Bagnall, 15 November, 2004.

    He [Simon Wessely] claimed to have had 53 conflicts of interest during the course of his career and exhorted all to accept that this was now the way of the world. “It is time we all grew up,” he said. “Everyone has conflicts. Everyone has agendas. Everything affects patient care. Our own personal prejudices, likes and dislikes….”

    Anne Foxey, Nutrition Specialist, had a much better handle on the subject. Her rapid response stated: “The only free lunch is the cheese in the mousetrap.”


    RESPONSE TO ELLEN GOUDSMIT, MISUNDERSTANDING re PACE by Gurli Bagnall, 27 October, 2004

    Due to poor health, I have to be selective about the issues I follow.  When PACE raised its head, I put it on the back burner for two reasons.  First, if pacing is to be studied in conjunction with CBT and GET, then it is simply more of the same psychiatric regurgitation we have become so  used to. On the other hand, it is a waste of time and money to study pacing on its own as a coping strategy, for there IS only one expert in this regard and that is the patient. Whether he suffers ME, cancer, heart disease, Motor Neurone or any other physical ailment, it is not for others, however well qualified, to dictate how much activity that person can and should pursue. 


    *O* MEitis? A SLENDER STRING TO OUR BOW by Gurli Bagnall, 24 October, 2004

    In the UK, 1988 also saw a change to the title, MEitis. The psychiatric drive to this end had succeeded and the disease was re-named the chronic fatigue syndrome (CFS). Sufferers quickly learnt that this was an attempt to trivialize them and their suffering, and to label the condition a mental disorder.

    After many years of protest, the authorities reluctantly conceded that ground must be given. From then on, the disease was to be known as CFS/ME, but from the perspective of the psychiatric lobby, this presented a problem. While MEitis has been listed as a neurological disease by the WHO International Classification of Diseases for almost 50 years, an underhanded attempt was made to include it under mental disorders as well. Professor Simon Wessely failed to achieve this objective so now the pressure is on to delete MEitis from the official records altogether.


    *O* TESTIMONY PRESENTED AT THE INQUIRY INTO THE GULF WAR ILLNESS AND "SCIENTIFIC PROGRESS" IN PSYCHIATRY.by Gurli Bagnall, 6 September 2004

    "Patient welfare respected"? Now there's a novel idea and not one that is experienced by many GWS/I or ME sufferers. Perhaps that is because many are too ill to demand respect - they being bed bound, wheelchair bound and/or housebound often from the onset of their illnesses. AIDS victims, on the other hand, are rarely debilitated until the latter stages of the disease. They can make their physical presence felt.


    TO WHOM IT MAY CONCERN by Gurli Bagnall

    It was with considerable concern that I heard of the complaints leveled against The One Click Group, which have been made by persons whose identities are being withheld from the owners of that site.


    *O* PSYCHIATRY AND PERFIDY by Gurli Bagnall, July, 2004

    "Academic psychiatry has all but lost contact with the population it is supposed to serve..Criticism is, if not actively discouraged, then politely but very firmly ignored." N. McLaren, M.D. Psychiatrist, Australia, 1999

    In the face of undeniable evidence to the contrary,  X  never admits to being wrong.  In his (or her) mind, he is omnipotent.  As a self perceived superior being, he demonstrates contempt towards others  who he has neither met nor spoken to.   He attacks their characters and personalities and makes no secret of his displeasure if his judgment is questioned.

    The [psychiatric] Diagnostic Manual no doubt lists a condition or two under "Personality Disorders" that match the behaviour, but what happens when people in positions of power, such as politicians and medical diagnosticians, fit the description?  What happens to society when the same politicians and diagnosticians receive pecuniary and other rewards for manufacturing mental disorders where none exist?


    OPEN LETTER TO CONSULTANT, DR. JH by Gurli Bagnall, 17th February 2004

    Your business is supposed to be health, but only on your terms -   irrespective of whether or not those terms are in the patient's best interests.  If someone does not respond or cannot tolerate your methods, tough! Correct me if my memory has let me down, but last time I looked, I believe  The Health and Disability Commission's Act stated that the patient should be given all the options and allowed to make the choice if that is his or her wish.


    Review: Video - Who Will Protect the Children? by Gurli Bagnall

    "Who will protect the children?" is an apt title and as I watched the video, I thought of Gordon Thomas' book "Journey Into Madness - Medical Torture and the Mind Controllers" in which he said:

    "Nothing I had researched before could have prepared me for the dark reality of doctors who set out deliberately to destroy minds and bodies they were trained to heal."


    *O* An interview with Hillary Johnson

    Is CFS contagious?

    There is ample evidence for contagion. Over the last decade, scores of cluster outbreaks of CFS have been reported to the Centers for Disease Control from all over the country. A "cluster" is a sudden outbreak among a group of people who are connected to one another by place of work or residence. These include an outbreak among children in a small, upstate New York town called Lyndonville, an outbreak in a Nevada desert town called Yerington, and an outbreak among policemen in Spokane, Washington. In a 1992 research paper on the Nevada outbreak, Harvard researchers pointed out that there was enough evidence to "suggest the possibility of an infectious agent transmissible by casual contact."


    *O* Back to the future by Hillary Johnson

    But back to the research referred to on January 10. According to the CAA report, Wm. Reeves says his group has made the discovery that "chronic fatigue syndrome" patients "were far more impaired" than patients with "other conditions such as pulmonary disease, multiple sclerosis and osteoarthritis." CAA/CDC doesn’t enumerate any of the other conditions, but my point is: Isn’t this news at least fifteen years old? Haven’t other groups, composed of far more knowledgeable scientists with no history of contempt for "CFS" patients or stealing the money targeted for "CFS" research, come up with these same findings? Why is the CDC simply reproducing their results, rather than moving forward with biological research into the disease?

    One answer might be that they are not competent to do biological research, which many would argue is the case. Certainly, in the cases in which they have tried, CDC scientists have been unable to replicate biological findings made by numerous other groups in the US and elsewhere.

    Another reason, which seems equally viable, is that they are still trying to prove to themselves that what they renamed "chronic fatigue syndrome" in 1987-1988 is actually a distinct disease, and that patients are not lying about what has happened to them. In other words, two decades after they were notified of the outbreak in Nevada, CDC employees are still trying to convince themselves that this disease is worth their own or anyone else’s time.


    *O* A few more thoughts on advocacy by Hillary Johnson, January 2004

    In my book, with the help of a CDC insider, I documented the theft of millions of dollars, tagged by the U.S. Congress for ME/cfs research, by a cabal of scientists at the U.S. government’s Centers for Disease Control. That was the headline provoking news in my book, I suppose. Certainly, from a journalistic perspective, it was the news that should have attracted a general interest audience to the book. Citizens don’t like to hear about individuals in government stealing millions of taxpayer dollars and—the polite word—misappropriating—those dollars for purposes other than what those dollars were intended for. For such an event to occur within an American "health" agency seemed even more scandalous. Even my fellow journalists, the most jaded among them, were incredulous that a health-oriented agency would engage in skulduggery. The FBI? Yes! The CIA? Yes! The Pentagon? Yes! The little CDC in Atlanta, Georgia? You’ve got to be kidding!


    Peggy Munson’s book ‘Stricken: Voices from the Hidden Epidemic of CFIDS’ is available from this site which also features Peggy’s Awareness day letters from

    *O* 2001, Question your own prejudices about chronic illness. Do you believe people with chronic illness are weak, have given up, have bad Karma, or just need "spiritual growth?" Ask yourselves what fears these ideas serve to assuage, and imagine ways to bridge the "us" and "them" separation that keeps disabled people in substandard care. When the New Age, or Yoga Journal, or Oprah's website, portrays CFIDS patients as people who are spiritually bankrupt, is this any different than Attorney General John Ashcroft stating that people are disabled because of God's will?

    *O* 2002 Many people are stunned that I have stayed so sick for so long, mistakenly believing that CFIDS is a mild, short-term condition. Some of this confusion is due to the fact that many articles on CFIDS, and particularly many articles and books in the field of alternative medicine, use "Chronic Fatigue" and "Chronic Fatigue Syndrome" interchangeably. Even WebMD now knows that these are not the same thing -- stating, "most people who have chronic fatigue do not have the disease chronic fatigue syndrome. There are many health problems that can cause fatigue. CFS can be diagnosed only after a thorough evaluation has ruled out other possible causes of chronic fatigue." People with idiopathic chronic fatigue might spontaneously recover, but those with CFIDS generally don't. A study in 1999 found that only 4 percent of severe CFIDS patients ever fully recover (Hill, Nancy et al. "Natural History of Severe Chronic Fatigue Syndrome." Archives of Physical Medicine and Rehabilitation, 80, September 1999). Even the CDC, which used to publish optimistic, poorly designed studies on recovery, now estimates the recovery rate of CFIDS to be less than 12%, according to the CFIDS Association of America. This could change, with viable treatments, but still NOT A SINGLE DRUG has been approved by the FDA for CFIDS. Having CFIDS is very much, medically, like living in a third-world country.

    *O* and 2003. Dr. Paul Cheney explained how the bodies of CFIDS patients are choosing between lower energy and life, or higher energy and death. On a physiological level, CFIDS patients live in a near-death suspension, making patients feel much like they are dying, not tired.

    Dr. David Bell has studied the near-death feeling as it relates to blood volume. "[T]he vast majority of Bell’s CFIDS patients had 'extraordinarily' low circulating blood volume (a combination of plasma and the red blood cells via which the plasma delivers oxygen throughout the body)," writes About.com columnist Joan Livingston. "While his average patients ran about 70 percent of normal, several patients with Chronic Fatigue Syndrome (PWCs) had only half the blood volume of a healthy person, an amount so low that it would ordinarily cause shock and prove fatal in a car accident."

    Why is there a gap between public perception and reality?

    Clinical use of words like "stealth," "tricky," and "migratory" also add to the nebulous public image. Dr. Arnold Peckerman reported on Web MD that CFIDS patients might have what he calls a "tricky heart." The word "tricky" seems simple, like a stuck lock that needs grease, but Peckerman's heart discovery is harrowing. "Basically we are talking about heart failure," Dr. Peckerman says of the type of abnormal valve function in CFIDS patients. "[C]hronic fatigue syndrome is a progressive disease." Peckerman believes this discovery might explain why CFIDS patients become so ill from simple movements. "Typically we see this in people with three-vessel heart disease," adds Emory University cardiologist Joseph I. Miller III, MD of the abnormalities.


    *O* NCF 2004 Awareness day message by Jill McLaughlin

    And truth of the matter it is, it is "fatigue" that has caused the psychiatric overlay and wasted a disproportionate amount of our meager funds studying the efficacy of psychotherapy rather than trying to find viable treatments.

    The fatigue model has failed and should not be accepted as a name or the basis for studying the illness. How much insight into the cause or pathophysiology of any illness would be gained by comparing it to any other condition which also shared one symptom.

    Advertising fatigue or studying it or analyzing it by fatigue scales or holding fatigue conferences or setting up fatigue clinics is not going to help those with underlying neurological illnesses.


    *O* Sophisted Investigation by Cesar Quintero

    Much reported controversy surrounds the public health agencies and their handling of investigation into the disease Myalgic Encephalomyelitis.   Surely the most advanced nations with legions of medical scientists would be motivated to meet the challenge and discover the cause of an epidemic striking down its citizens, which leaves large numbers permanently disabled.  Yet the response of the public health agencies has caused particular skepticism.  This has raised many questions.

    Now this question may sound very odd, but consider: How would you Disguise a Disease ?


    Name Change - Evaluation by Cesar Quintero

    This report is more evidence that it is absolutely necessary to restore the name Myalgic Encephalomyelitis. I do not see this report as something to be given any blanket endorsement. They were not asked to propose a temporary name. Patients have been damaged by the govt. changing the name of ME to CFS. This fact is what they continue to cover-up.


    Restore the Name by Cesar Quintero

    My suspicion is that until we accept that the disease that we have is M.E.we will continue to be victimized and manipulated.


    Myalgic Encephalomyelitis - A New Day by Cesar Quintero

    Do certain herpes viruses have a special relationship with the polio viruses in the same way HIV and HHV6 work together. We may never know if the government continues to cover up the existence of ME by calling it fatigue and confusing the public and doctors and fostering mythical subgroups. Confusing the understanding of this disease by opening the door for the inclusion of a multitude of unexplained fatigue conditions and somatic syndromes that will choke off the support and investigation of Myalgic Encephalomyelitis.


    Government Manipulates the Facts by Cesar Quintero

    How long will the deception and fraud continue before the public calls for accountability and prosecutions for fraud ?


    *O* The underserving ill - a warning by John Sayer

    It is my belief that the current - almost frenzied - campaign to psychologise M.E. and similar conditions is part of this propaganda and represents a dress rehearsal for the wider application of the psychosocial classification of a new "underclass" of "the undeserving ill", stripped of some of the very rights the Second World War was supposedly fought for by the Allies.


    Outrageous job description for ME/CFS nurse therapist by John Sayer

    These job descriptions relate to a philosophy - ALREADY IN PLACE - of subjecting "CFS" sufferers to psychotherapy designed to "prove" to them that they are simply perpetuating their own illness through aberrant belief systems.


    THE TRAVESTY OF SO-CALLED "M.E. TREATMENT" by John Sayer


    The Psychologising Matrix and Collaborating Charities by Kevin Short

    Forget Action for ME, forget the 'ME Alliance' sham and forget Charles Shepherd's so called Myalgic 'Encephalopathy' Association and, above all, forget the notion of any collaboration with and appeasement of Wesselyites, Ministers, and the rest. The ONLY way we can secure justicefor real M.E. sufferers is to fight politically and fight fire with fire. We do not need to raise money from poor sufferers for research, we need to raise money for a political and legal fight. We win the political fight then we can get state bio-medical research funding and support.


    Driving Home The Evidence - to our own ranks by Kevin Short

    The sad fact is that most M.E. sufferers are clueless to both the level of existing bio-medical research about their illness and to the  well-funded political campaign directed against them by the psychologisers and their corporate/DWP backers.


    *O* ME/CFS Politics in a Nutshell (UK) by Kevin Short

    Ever mindful of budgets, In the UK, Government Ministers have been captured by the psychologising views of the Wessely School, Insurance Industry and the DWP 4 and are pursuing their ‘Pathways to Work’ project - which is set to gain momentum from 2005. A situation where sufferers of a physical neuro-immunological disease (M.E.) will be routinely referred to psychiatrists as mental health patients – and subject to harmful ‘treatment’5 upon pain of benefits withdrawal – is being set up. This is NOT exaggeration and I would direct you to the extremely worrying comments of Wessely-School psychiatrist Dr Michael Sharpe: "Those who cannot be fitted into the scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and health service."6

    In spite of all the biomedical evidence to the contrary, these vested-interest psychologisers continuously maintain their anti-science mantra: that ‘M.E. is perpetuated by mistaken belief and sick-role behaviour’. Their well-funded lobby machine relentlessly bombards parliament and the media with disinformation - and they flood medical and trade journals with extremely low quality psychiatric ‘research’ papers.7 Inevitably, all of this adversely affects the views of time-pressed GPs who are simply too busy to read all the bio-medical research papers themselves.


    ME v CFS: WHAT IS THE CDC DOING ABOUT ME? by the ME/CFS Legal Resource Administrator (Australia)

    (Note that the HFME site does not in any way support the use of the harmful and misleading term/concept of 'ME/CFS' - although it does strongly support the content of this article, and applauds the authors for writing it.)


    Presentation to the AACFS Advocacy Session - October 10, 2004


    A few words (on activism) by Matt Straznitskas
     

    Advocacy by John Friedlich


    Writing Letters to Officials, from "The Activist's Handbook"


    Ten things severe ME sufferers wish ME societies would do by Ricky Buchanan


    A new era of psychospiritualism [a deconstruction of the MUS construct]


    Have psychologizers ever ONCE apologized? By Erik Johnson


    GULF WAR SYNDROME EXISTS - WESSELY DEBUNKED

    Daily Telegraph (UK): Doctor's diary: at long last, agreement that Gulf War syndrome is not in the mind

    Scotsman Newspaper: Syndrome revealed

    US in U-turn over Gulf war syndrome - New Scientist


    Proving Pigs Can Fly


    ME: we need a cure, not guidance on how to live


    'Why won't they believe he's ill?' (from The Independent)


    Viral Epidemics Sweep the Globe


    Psychiatry as psychotic disorder by Erik Johnson


    With permission, I reproduce below part of an article on the Truth Campaign web site, which sheds further light on the eugenics movement. John Sayer
     
     

     
    UK Parliament SMASHES Big Pharma... Opinion by Consumer Advocate Tim Bolen
     

    "The Truth Campaign" website. "Skewed" book by Martin Walker
     

     

     
    Miracle Malpractice By Kelly Hearn, AlterNet. Posted March 28, 2005.
     
    A new book explains how the medical industry, pharmaceutical companies, the media and politicians all prey on the public's fears to sell them new drugs and the latest technology.
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    Exciting book news!

    Click here to purchase the first HFME book!


    The book 'Caring For The M.E. Patient' by Jodi Bassett includes a Foreword by international M.E. expert Dr Byron Hyde.

    He writes:

    "There is so much false information that is picked up and disseminated it is near impossible to hold one’s head above the water and sift through this morass of misinformation. Any attempt to seek the truth is always a major difficulty. Somehow, Jodi Bassett and Hummingbird have managed to plow through this field of weeds."

    "This is a book that deserves being read, not only by patients and physicians with an interest in M.E. but the bureaucrats in the USA Centers for Disease Control who have done so much damage to the understanding of M.E. I recommend her book to all and wish it every best success."

    Paperback $18.95
    Hardcover $22.95