On this page: Activism Articles

Articles of increased importance are highlighted in green *O*

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)

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

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 MD (an extract, PDF format)

[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.

Clinical Features of M.E./CFS 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 / ICD-CFS and will risk failing in their professional duty in this difficult area.

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

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/ICD-CFS]

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.

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.

Clinical Definition and Diagnosis

Encourage your doctor, hospital, library, to order the Special edition of the JCFS, 2003, vol 11, # 1, Myalgic Encephalomyelitis Clinical Working Case Definition, from The Haworth Document Delivery Service:1-800-HAWORTH. E-mail address: <getinfo@haworthpressinc.com> Website:<http://www.HaworthPress.com>

An Expert Summary of the Research

From the Special Edition - Myalgic Encephalomyelitis: Clinical Working Case Definition. Journal of Chronic Fatigue Syndrome 2003 vol.11(1) p.68

A Landmark in ME History

A New Clinical Entity ? THE LANCET. LONDON : SATURDAY, MAY 26, 1956

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, 18^th 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, 7^th 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 29^th 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, 15^th April 2005

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

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

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

*O* Problems and Solutions ? by Eileen Marshall and Margaret Williams, 23^rd 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, 16^th January 2005

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

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, 5^th November 2004 

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

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

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

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

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

*O* Note on the term “Myalgic Encephalomyelitis” by Eileen Marshall and Margaret Williams, 16^th 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, 30^th 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, 31^st 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, 25^th June 2004 

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

Sinister Science By Margaret Williams, 6th June 2004

Time for a Reality Check at the UK Department of Health? By Margaret Williams, 3^rd 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 6^th 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*

*O* What is it About Psychiatry? By Gurli Bagnall, 12 July 2005. "[Psychiatry] is a field where fads and fancies flourish. Hardly a year passes without some new claim, [But]The early promises of each of these discoveries are uniformly unfulfilled." (US) Joint Commission on Mental Illness and Mental Health, 1961 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* Essay on R.E.D.D., or RnaseL Enzyme Dysfunction Disease by Mary Schweitzer We certainly have significant evidence that RNaseL Enzyme Dysfunction Disease (R.E.D.D.) is Chronic Fatigue Syndrome (CFS). RNaseL Enzyme Dysfuncion is a very serious condition. The patient needs to know as soon as possible whether or not he/she has it, because it means that we cannot defeat viruses the way normal people can. Anything that further weakens the body's ability to fight active viruses is frightingly dangerous for R.E.D.D. patients. Hence the CFS and M.E. patient community, which has warned the medical community for years of the potential danger of haphazardly insisting on pushing patients into exercise, was medically correct in doing so. (Confirmed independently by research conducted at the New Jersey College of Medicine that demonstrated that CDC-Defined CFS patients could not remain in aerobic metabolism for three minutes during mild exertion; they jumped from resting to anaerobic metabolism almost immediately.) *O* Problems continue within U.S. government agencies by Mary Schweitzer Despite efforts by the U.S. Congress to bring federal health agencies in line with the public's concern about CFS/CFIDS, both the NIH and CDC continue to behave as if on-campus interests were all that mattered. The CDC will not publicize the results of their own Wichita survey, which led to an estimate of 500,000 persons in the United States, because it is still awaiting publication. One presumes they believe it will not have received the imprint of scholarly science until it has been published in a peer-reviewed journal --yet, they continue to ignore research that has already been published in such journals, when it has been conducted off-campus - that is, "outside-the-beltway. The most glaring example can be found in their refusal to publicize the dePaul demographic study, conducted by Leonard Jason et al, which was recently published in the Annales of Internal Medicine. This two-year study concluded that as many as 800,000 Americans may have Chronic Fatigue Syndrome, that it affects all income and ethnic groups equally, and (as in the Wichita study), that 90 percent of Americans had not been diagnosed. *O* Continuing Misstatements by CDC to Public, by Mary Schweitzer CDC spokespersons appear to believe that an apology for "accounting errors" is sufficient to close the books on the behavior of the agency towards the disease Chronic Fatigue Syndrome (CFS) and its victims. Nothing could be further from the truth. There are numerous discrepancies between information that has been provided by CDC at public meetings of the CFSCC (Chronic Fatigue Syndrome Coordinating Committee of the Department of Health and Human Services), and information that has been given Congress, the media, and the nation's Executive. I wish to highlight three major examples to demonstrate the depth of remaining problems within CDC with regard to appropriate attention to a disease CDC has acknowledged to be "a significant health threat to American women [1998]," and "one of the top five priorites for CDC with regard to new and reemerging diseases [1995]." The True Costs of Public Apathy Towards Chronic Fatigue Syndrome (CFIDS) by Mary Schweitzer *O* Dealing with a flawed Social Security Disability system: Guilty until proven innocent by Mary Schweitzer The Social Security Disability Insurance system, which is supposed to protect workers from suddenly losing all sources of income with an unexpected disability, is seriously flawed and becoming more so. WE ARE ASSUMED GUILTY AND MUST PROVE OURSELVES INNOCENT. CFIDS as a disease "for women" by Mary Schweitzer One of the major problems with getting attention from the medical establishment for our disease is that it is a "female" disease. Not in the sense that more women get it than men, although 70 percent of victims are female.  Rather, it is a disease that fits the attributes associated with "femaleness" in a gender-dichotomized intellectual framework. Which dooms our disease to disrespect, lack of interest, and even mocking. Change the Name: Abandon "CFS" and Return to the name "M.E." [presented to the AACFS conference in Boston, October 1998] by Mary Schweitzer Continuing to ask researchers who have already published papers with the term "CFS" in it is whether they want to change the name is counterproductive and unnecessary: the people of the United States of America, by way of their elected representatives in Congress, have communicated to the DHHS and the CFSCC that they would like the name changed. The obvious reasons include the failure of the CDC to convince the public that CFS is not merely "feeling tired all the time, complaining a lot about it, and latching on to the latest fad by saying that's what you have," (which is the vernacular translation of the words "chronic fatigue syndrome.") Given that 98 percent of patients at the time the name was chosen were female, there is more than a hint of gender bias in the particular choice of a name, and it is not coincidental that patients find it demeaning. *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* Advocacy Issues Update by Jill McLaughlin History is replete with the tragedies of diseases awaiting proper recognition. There is considerable alignment among interested parties that the "chronic fatigue" aspect is not conducive to forwarding the mission of "distinct" public recognition, understanding and effectively treating this condition. The term 'CFS' (chronic fatigue syndrome) is used interchangeably with "chronic fatigue" (CF) and "chronic fatigue syndromes" (i.e. any syndrome that causes "chronic fatigue") in many papers, publications and the media. The symptom of fatigue obscures descriptions of the illness and the undue focus on fatigue has caused significant amounts of scarce research money to be wasted on studying one symptom rather than the illness itself. *O* ME is not fatigue by Maryann Spurgin Ph.D. M.E. is not a fatigue state, and fatigue is not a defining symptom of M.E. We do not support use of the word "fatigue" either to name this illness or to describe this illness. Patients and patient groups who want to "change the name" must first take responsibility accurately to describe the symptomatology. *O* The Need to Abolish the Fatigue Model and to Establish Precise Subsets by Maryann Spurgin Ph.D. One of the main goals of the M.E. Society is to see the inaccurate, vague, demeaning word "fatigue" eliminated not only from names but also from descriptions of the disease and from scientific discussion. We hold that scientific progress cannot be made when researchers focus on and blend the patients together by the poorly defined symptom of fatigue, which muddies understanding of the disease because it is a symptom of many diseases, of psychiatric diseases, as well as a normal physiological state. Maryann Spurgin, Ph.D.,reviews the 2003 ME/CFS clinical case definition In sharp contrast to the 1994 CDC Fukuda criteria, which makes "fatigue" a compulsory symptom but downplays and makes optional post-exertional sickness and other cardinal symptoms, the Canadian clinical case definition specifically selects patients who worsen with exercise. The clinical definition makes it very clear and compulsory that in order to meet the diagnostic criteria, the patient must become symptomatically ill after exercise, and must also have neurological, neurocognitive, neuroendocrine, dysautonomic (for example, orthostatic intolerance), and immune manifestations. That is, worsening with exercise, and many symptoms other than fatigue, must be present for a patient to meet the diagnostic criteria. This case definition will go a long way to help distinguish ME/CFS patients from chronic fatigue patients, depressed patients, patients with PTSD, somatization, fibromyalgia, and other diseases with which ME/CFS has been confused, including those that improve with exercise.