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.

Quotes on the topic of 'Who benefits from 'CFS' and 'ME/CFS'?'

General M.E. Quotes

Quotes by M.E. sufferers

Quotes from M.E. political discussion groups

On so-called 'fatigue' in M.E...

On the supposed role of 'stress' in M.E...

Quotes on the outbreaks (and infectious nature) of M.E.

Quotes from M.E. sufferers on the negative effects of CBT and GET

M.E. vs MS quotes

Quotes on 'Are we just marking time?'

Quotes on the problems with the so-called "Fair name" campaign

Quotes on the problems with the use of 'ME/CFS' by M.E. advocates

Quotes on the topic of 'Who benefits from 'CFS' and 'ME/CFS'?'


Before reading these quotes, please be aware of the following facts:

1. Myalgic Encephalomyelitis and ‘Chronic Fatigue Syndrome’ are not synonymous terms. The overwhelming majority of research (and articles) 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/articles as ‘only relating to ‘CFS’ patients’ (including those which describe 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/articles 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/advocacy.

Note that the inclusion of a quote on this site does not necessarily denote support for all parts of the article it was taken from, or support for the terminology used in this article, nor total support for all articles created by this author.

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. and that M.E. activism also focuses entirely on M.E. The bogus, financially-motivated disease category of ‘CFS’ must be abandoned.

2. The research and articles 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. For more information see A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy and the more detailed paper Putting Research and Articles on Myalgic Encephalomyelitis into Context.

Quotes on the topic of 'Who benefits from 'CFS' and 'ME/CFS'?'

Hillary Johnson, author of a book which documented the mid-eighties M.E. outbreak in the US (Osler’s Web), explains that the name ‘CFS’ was selected:’[By] a small group of politically motivated and/or poorly informed scientists and doctors who were vastly more concerned about cost to insurance companies and the Social Security Administration than about public health. Their deliberate intention – based on the correspondence they exchanged over a period of months – was to obfuscate the nature of the disease by placing it in the realm of the psychiatric rather than the organic. The harm they have caused is surely one of the greatest tragedies in the history of medicine. ... The Government’s choice of names was so inept, in fact, that many observers came to view it as a deliberate effort to defuse the potentially panic-inducing issue of the eruption of a life-altering infectious disease. "CFS" after all, hardly sounded "catching".

‘In his second letter to Holmes, on October 29, Cornell’s Nathanial Brown wrote that he wanted to be included on the co-author list in a medical journal. But Brown continued to be preoccupied with the costs that published criteria might pose for health insurance companies. He suggested that Holmes include a disclaimer in the definition alerting doctors that disability claims could not be based on the government’s diagnostic criteria. "It might discourage chronic reimbursements for the diagnosis-(i.e. long-term disability)-until more is known," Brown wrote.’
Osler’s Web, Hillary Johnson, pp 218 - 219:

 

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.
     It is the CFS definitions themselves that give rise to this inaccuracy. Consider the following:
(a) What other physical disease definitions essentially state that if you discover the patient has any physical injury or disease, then the patient does not have the illness CFS? In other words if you have CFS then it does not result in or cause any major illness. What else could CFS then be but any number of various psychiatric, social, hysterical or mendacious phenomena?
(b) The various CDC administrations dealing with the subject have clearly stated that CFS is a physical, not a psychiatric disease. However, is there any other definition of any physical disease that is not provable by  scientific and clinical tests? Only psychiatric diseases are not clearly verifiable by physical and technological tests.
(c) What other physical disease definition requires a six month waiting period before the illness can be diagnosed? Any physician knows that to treat a disease adequately you have to be able to define the disease at its onset and treat it immediately in order to prevent chronic complications from arising. There are simply no other disease definitions that have ever been assembled similar to the CFS definitions.’

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

 

‘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. The CDC definition is not a disease process.’

‘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. It is (a) a partial mix of infectious mononucleosis /glandular fever, (b) a mix of some of the least important aspects of M.E. and (c) what amounts to a possibly unintended psychiatric slant to an epidemic and endemic disease process of major importance. Any disease process that has major criteria, of excluding all other disease processes, is simply not a disease at all; it doesn't exist. The CFS definitions were written in such a manner that CFS becomes like a desert mirage: The closer you approach, the faster it disappears and the more problematic it becomes.’

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 Hyde


 

‘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). 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.’

‘Thirty years ago when a patient presented to a hospital clinic with unexplained fatigue, any medical school physician would search for an occult malignancy, cardiac or other organ disease, or chronic infection. The concept that there is an entity called chronic fatigue syndrome has totally altered that essential medical guideline. Patients are now being diagnosed with CFS as though it were a disease. It is not. It is a patchwork of symptoms that could mean anything.’

The Complexities of Diagnosis  by Byron Hyde MD 2003


 

‘M.E. has already been called the ‘Disease of a Thousand Names’, yet, in the Spring of 2001, one of the ME Charities has just applied to the Charities Commission for another change. This time, it is from Myalgic Encephalomyelitis to Myalgic Encephalopathy, that is: from muscle pain accompanied by inflammation of the brain and spinal cord to muscle pain and damage to the brain and spinal cord of unknown origin. This clumsy euphemism will not only bloom less sweetly than it’s predecessors but does not fit the facts. Moreover, this change will not benefit research nor relieve the confusion and disbelief which blocks access to standard medical care for these patients.’

A Rose by Any Other Name by Dr Elizabeth Dowsett


 

‘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!’

The Late Effects of M.E. by Dr Elizabeth Dowsett


 

‘In those countries which have adopted mass polio immunisation during the past 30 years, outbreaks of M.E. still continue unabated.  Interest in one such epidemic (Lake Tahoe, Nevada USA 1984) misdiagnosed initially as Epstein-Barr Glandular Fever – a Herpes virus infection, led a group of non-clinical scientists active in the field of Herpes virus research and evaluation of drugs, to formulate and tailor a fitting new research definition (Holmes et al 1988).  Attempts to correct this initial "Fatigue" definition in the UK (Sharpe et al 1991) the USA (Fukada et al 1994) and in Australia (Hickie et al 1995) became so inclusive of a heterogeneous population of sufferers from psychiatric and miscellaneous non psychiatric states as to elevate the suggested prevalence by some 250 times.  Major mistakes in these definitions include: (i)  overlooking the distinguishing encephalitic features of M.E. (ii) elevating "fatigue" (an inescapable accompaniment of normal human existence and of  cardiovascular, metabolic malignant, psychiatric, neurological and other disabling conditions) to unreal diagnostic importance among symptoms. (iii)  to suggest that M.E. is merely one subgroup amongst this heterogenous collection of physiological and pathological states, makes thus making any attempt at differential diagnosis between them impossibly expensive to pursue.   (iv) to suggest that diagnosis must be delayed for 6 months, vitiates any real attempt at virus investigation, especially among the young. 

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.’

Redefinitions of M.E. - a 20th Century Phenomenon by Dr Elizabeth Dowsett


 

‘Following successful immunisation against poliomyelitis in the early 1960s and the removal of 3 strains of polio virus from general circulation in the countries concerned, the related non-polio enteroviruses rapidly filled the vacancy. By 1961, the prevalence of diseases (such as viral meningitis) caused by these agents soared to new heights. In the mid 1980s, the incidence of M.E. had increased by some seven times in Canada and the UK, while in the USA a major outbreak at Lake Tahoe (wrongly ascribed at first to a herpes virus) led to calls for a new name and new definition for the disease, more descriptive of herpes infection. This definition based on "fatigue" (a symptom common to hundreds of diseases and to normal life, but not a distinguishing feature of myalgic encephalomyelitis) was designed to facilitate research funded by the manufacturers of new anti-herpes drugs.’

Research into M.E. 1988 - 1998 Too much PHILOSOPHY and too little BASIC SCIENCE! by Dr Elizabeth Dowsett


 

‘There are actually 30 well documented causes of ‘chronic fatigue’. To say that M.E. 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’. M.E. 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.’

Differences between M.E. & CFS by Dr Elizabeth Dowsett


 

‘M.E. is a multi-system disorder of extraordinarily incapacitating dimensions from which complete recovery is unlikely.  It can be a devastating condition, with some patients being unable to speak or swallow and needing to be tube-fed for years; at least 25% of sufferers are severely affected, yet patients are accused of malingering.  On the advice of Wessely School psychiatrists, state benefits are refused or withdrawn, even in cases of M.E. where they have been awarded for life. Many with M.E. commit suicide: in the UK, figures are said to run at one M.E. suicide per month. This is not because patients are psychiatrically ill: it is because they are completely unable to look after themselves and are too sick to survive without the necessary support, both medical and financial.

The malign influence of Wessely School psychiatrists:  the extent of the influence of this group of psychiatrists is phenomenal: it extends not only to Government and its Departments of State but as noted above, to the medical insurance industry, as well as being rampant throughout the NHS and medical research establishments such as the MRC; it seems to encompass many medical journals and much of the media (including the BBC). Also as noted above, of concern is that this malign influence has now extended to the APPGME and to certain of the M.E. patients’ charities, one of which (Action for M.E.) is actively colluding with the psychiatric studies being undertaken by Wessely School psychiatrists that are funded by the MRC.  This collusion has given rise to substantial documented concern, primarily because if such Trials are to include those with authentic M.E., the Trials may be dangerous because of the evidence that patients may already be in significant cardiac failure, so participation in the Trials may therefore result in irreversible deterioration.  No compensation would be payable for such deterioration, since participants are likely to be required to sign a consent form containing a no-liability clause. 

A further and most disturbing effect of Wessely School influence has been on the M.E. charities themselves, whose charter requires them to act in the best interests of those with M.E.  In the early days of their foundation, both charities (AfME and the MEA) produced excellent leaflets and information for both patients and physicians but gradually, possibly as a result of Wessely School influence, things changed and turned sour.  In 1997, for example, members of the M.E. ForT campaign (Fighting for Truth) who produced a petition of over 14,000 signatures calling for the withdrawal of the 1996 Joint Royal Colleges’ report --- a petition that was presented in the House of Lords by the Countess of Mar --- were threatened with legal action by the M.E. Association. 

There is much unrest about AfME’s close liaison with the Wessely School psychiatrists: that such liaison exists was spelled out by Michael Sharpe in his report entitled "Functional Symptoms and Syndromes: Recent Developments" in which he included "CFS" (for the reference, see above). 

It is of interest that it is Professor Anthony Pinching who is AfME’s Principal Medical Adviser.  Currently, AfME takes the view that as a charity, it should not raise money to fund research into M.E.  Quite certainly, AfME is not only supporting but is closely involved with the MRC psychiatric trials, as well as the new "Centres of excellence" that will deliver CBT and GET.  It is of note that it is Professor Pinching who is Chairman of the Investment Steering Group that devised the process and criteria for the setting up of these Centres and who allocated the funds.  Pinching is also lead adviser for the Department of Health on "CFS/ME".

The human rights of people suffering from M.E. are being conspicuously denied without any justification whatever. It is completely unacceptable that the unsubstantiated personal beliefs of a few immensely influential psychiatrists with indisputable vested interests should continue to indoctrinate UK medicine and the media regarding M.E. and that these psychiatrists should be permitted to impose inappropriate management regimes upon sick and defenceless patients on pain of having their benefits withdrawn if they do not comply, a situation that has continued unabated for far too long.’

Hooper, M. & Marshall E.P. 2005b, Myalgic Encephalomyelitis: Why no accountability? [Online],


 

‘Undoubtedly the perverse use of chronic fatigue syndrome, to impose a psychiatric definition for M.E. by allying it to fatigue syndromes, has delayed research, the discovery of effective treatment(s), and care and support for those suffering from this illness. I would propose that the use of CFS should now be abandoned and that, following the Minister of Health’s assurances, the WHO definition is now accepted and used in all official documentations. The excellent work on the biological aspects of M.E., already carried out by several leading research groups, now requires significant funding.’

‘The term Myalgic Encephalomyelitis has been included by the World Health Organisation (WHO) in their International Classification of Diseases (ICD), since 1969. The current version ICD-10 lists M.E. under G.93.3 - neurological conditions. It cannot be emphasised too strongly that this recognition emerged from meticulous clinical observation and examination.’

‘The vested interests of the Insurance companies and their advisers must be totally removed from all aspects of benefit assessments. There must be a proper recognition that these subverted processes have worked greatly to the disadvantage of people suffering from a major organic illness that requires essential support of which the easiest to provide is financial. The poverty and isolation to which many people have been reduced by M.E. is a scandal and obscenity.’

Myalgic Encephalomyelitis (M.E.): a review with emphasis on key findings in biomedical research by Professor Hooper 2006, printed in the BMJ


 

‘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.

In the UK, patients with myalgic encephalomyelitis (M.E.), particularly children, have suffered gross and barbaric abuse and persistent denigration as a consequence of the beliefs of certain psychiatrists who are attempting to control the national agenda for this complex and severe neuro-immunological disorder. These psychiatrists are shown to be clearly in breach of the first tenet of medicine --- first do no harm--- in that by their words and deeds they have wreaked havoc in the lives of M.E. patients and their families by their arrogant pursuit of a psychiatric construct of the disorder which ignores the abundant clinical and scientific evidence (widely presented in the international medical and scientific literature) of the organic nature of M.E.

There have been persistent and frequently covert attempts by these psychiatrists to subvert the international classification of this disorder, with destructive consequences for those affected. To the serious disadvantage of patients, these psychiatrists have propagated untruths and falsehoods about the disorder to the medical, legal, insurance and media communities, as well as to Government Ministers and to Members of Parliament, resulting in the withdrawal and erosion of both social and financial support

Influenced by these psychiatrists, Government bodies such as the Medical Research Council have continued to propagate the same falsehoods with the result that patients are left without any hope of understanding or of health service provision or delivery. As a consequence, Government funding into the biomedical aspects of the disorder is non-existent

This coterie of psychiatrists has proven affiliations with corporate industry and has insidiously infiltrated all the major institutions, directing funding for research into an exclusively psychiatric model of the disorder, focusing on "management strategies" involving psychiatric techniques, even though such techniques have been shown to be at best of no lasting value and at worst to be harmful to patients with M.E.’

"People in positions of power are misusing that power against sick people and are using it to further their own vested interests. No-one in authority is listening, at least not until they themselves or their own family join the ranks of the persecuted, when they too come up against a wall of utter indifference.’

Hooper, M. 2003a, The MENTAL HEALTH MOVEMENT: PERSECUTION OF PATIENTS? A CONSIDERATION OF THE ROLE OF PROFESSOR SIMON WESSELY AND OTHER MEMBERS OF THE "WESSELY SCHOOL" IN THE PERCEPTION OF MYALGIC ENCEPHALOMYELITIS (M.E.) IN THE UK [Online],


 

‘We are aware that it is quite probable that some members of the Key Group (the "inner circle" of the CMO's Working Group on ME/CFS) intend to recommend that the CMO's Report should advise clinicians that only limited investigations are necessary for M.E. or CFS patients. Our understanding is that this specific advice comes from the Medical Director of the UK M.E. Association (Dr Charles Shepherd) and from those members of the Key Group who are known adherents of the "Wessely School". Such advice is merely repeating the message of the 1996 report on CFS of the UK Joint Royal Colleges, which states unequivocally that no investigations should be done to confirm the diagnosis.’

Hooper, M. & Montague S 2001a, Concerns about the forthcoming UK Chief medical officer’s report on Myalgic Encephalomyelitis (M.E.) and Chronic Fatigue Syndrome (CFS) notably the intention to advise clinicians that only limited investigations are necessary (The Montague/Hooper paper)


 

‘The release of the original Montague/Hooper document brought forth poignant worldwide gratitude from researchers and patients alike; it also brought forth an immediate barrage of letters which essentially amounted to a threatening campaign against the authors; these letters were written almost entirely by Dr Charles Shepherd, Medical Director of the UK M.E. Association and member of the CMO’s Key Group charged with preparing the forthcoming report, whose membership of HealthWatch was mentioned by Montague and Hooper in their paper.’

Hooper, M. & Montague S 2001b, Concepts of accountability


 

‘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. 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 M.E. and will risk failing in their professional duty in this difficult area.’

Hooper, M. Marshall E.P. & Williams, M. 2001, What is M.E.? What is CFS? Information for Clinicians and Lawyers


 

‘Despite the claims of some psychiatrists, it is not true that there is no evidence of inflammation of the brain and spinal cord in M.E.; 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". '

The Terminology of M.E. & CFS by Professor Malcolm Hooper (undated)


 

‘There can be few people in the UK M.E. community who have not by now heard the results of the inquest into the tragic death from M.E. of 32 year-old Sophia Mirza, the beloved daughter of Criona Wilson from Brighton.  Although severely sick with medically diagnosed M.E., Sophia was abused by the doctors charged with her care by being wrongly sectioned under the Mental Health Act.  Increasingly in cases of M.E., the law which states that a person may be sectioned only if they represent a danger to themselves and / or to others is being swept aside by some influential but misinformed doctors involved with M.E.’

Marshall, Eileen & Williams, Margaret. 2006b, Inquest implications


 

‘The M.E. community has for years urged UK Government bodies to fund research into both the epidemiology and the biomedical abnormalities that are known to exist in myalgic encephalomyelitis (M.E.) almost always to no avail, to the extent that the M.E. community realised that there were powerful vested interests at stake which were known to involve a group of psychiatrists known as the "Wessely School". ‘

Marshall, Eileen & Williams, Margaret. 2005b, Proof positive? Evidence of the deliberate creation via social constructionism of "psychosocial" illness by cult indoctrination of State agencies, and the impact of this on social and welfare policy


 

‘Given the much-publicised emphasis on the need for "transparency" within all Government departments, one again has to ask how it can be acceptable for a "policy-maker" at the head of a Government Department clearly to have had such close involvement with an insurance company like UNUM whilst he was advising Government and formulating policy, given that (1) UNUM has been so publicly discredited for malpractice over legitimate claims made by those with M.E. (as well as other incapacitating disorders), and (2) the Court-documented aims of UNUM diametrically conflict with the needs of the sick and disabled whom the same Government department is charged with supporting.’

Marshall, Eileen & Williams, Margaret. 2004b, Transparency in government


 

"As a psychiatrist, I have to say that it is distressing how unconcernedly certain colleagues are abusing psychiatry, allowing interests other than those of the patients to take precedence".

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


 

‘Schaefe: Children in America are being medicated to death—death by mind-altering drugs. [They] are coerced into mental health screening, they are forced into psychiatric treatment and they are prescribed dangerous psychotropic drugs. America's children are oftentimes denied contact with their parents, they are restrained without parental knowledge and they are given many different psychiatric medications. [End of quote.]  This is not just a matter of classroom behaviour. We also see it, for example, in our own international M.E. communities.’

COERCION, CORRUPTION AND CONSPIRACY: A LETHAL MIX. By Gurli Bagnall, August 2005


 

‘What is it was about the medical profession and psychiatry in particular, that attracts the sort of person [Professor Wessely] 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 child’s 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.’

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


 

‘'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.'" In the interests of keeping ourselves safe from medical harm, and as citizens of democratic countries, it is up to  each of us to resist tactics such as those mentioned above, and to do whatever we can individually towards bringing ethics back to medicine and in particular, the principle of  "first do no harm".’

COOKING THE BOOKS by Gurli Bagnall, December 2004


 

‘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?’

PSYCHIATRY AND PERFIDY by Gurli Bagnall, July, 2004


 

 "This will be revealed as one of the biggest medical scandals in history" declared a severe M.E. sufferer. "It is bad having severe M.E. but not as bad as being treated as a time wasting malingerer by the medical profession and the Department of Works and Pensions", remarked one respondent. A respondent describes how "This illness makes life hard enough as it is. It is so much worse that, whilst there is the ability to investigate this illness, that opportunity is being deliberately ignored. The choice the medical profession is making to treat a physical illness with psycho-nonsense is never going to cure anybody."

Comments By The 25% M.E. Group (Word format) Comments from Greg Crowhurst December 2005

 

Are a small group of vocal researchers trying to hijack vast amounts of public money? In excess of £4 million has already been spent by psychiatrists trying to prove that CBT/GET are the most appropriate forms of treatment for CFS/ME. Despite this a major review of evidence for the government described the evidence as "poor". Now a proposal to spend a further £2.6 million within the psychiatric field is being considered. This is despite the fact that M.E. is a multi-system/multi-organ disease, which has been formally classified by the World Health Organisation as a Neurological Disorder since 1969.

Worse still, many people with "classic" M.E. report that these forms of treatment are the most unhelpful and harmful to their health and often severely restrict any improvement in their condition. In a recent M.E. patient survey, it was found that up to 50% were made worse by Graded Exercise Therapy. In the same survey, 93% found rest and pacing of their condition much more helpful in managing their illness.

PRESS RELEASE & GENERAL STATEMENT By the 25% M.E. GROUP


 

‘The insurance companies known to be involved in [M.E. or ‘CFS’] claims include, in addition to UNUM, Swiss Life, Canada Life, Norwich Union, Allied Dunbar, Sun Alliance, Skandia, Zurich Life and Permanent Insurance, and as Re-insurers, the massive Swiss Re  (not the same as Swiss Life).  Swiss Re are currently building a huge circular eyesore in London which has been dubbed the "gherkin".  These insurance companies all seem to be involved in RE-INSURANCE; for example, Norwich Union uses Swiss Re and psychiatrist Peter White is one of the Chief Medical Officers for Swiss Re.  Their other "CFS experts" are Michael Sharpe and Simon Wessely, and they also use psychiatrist Anthony Cleare (a frequent co-author with Wessely who works in the same department) for the insurers.  There seem to be two ways in which claims are underwritten between insurers and re-insurers:  either the insurers agree to pay claims up to a pre-determined cut-off limit, after which the re-insurer becomes liable, or else the insurer and the re-insurer agree from the outset to share the costs of a claim.

This means that there is little hope of an M.E. claim succeeding, because both the insurers and the re-insurers all use the Wessely School psychiatrists to inter-refer claimants with [M.E. or ‘CFS’].  Given that insurers can refuse to pay out on claims until the claimant with [M.E. or ‘CFS’] has undergone a "rehabilitation" programme arranged by the insurer, this must surely result in a major conflict of interests because Peter White, Michael Sharpe and Wessely’s assistant Trudie Chalder (a former mental nurse who obtained a PhD and who seems often to be used as a grant front by Wessely) are the beneficiaries of the MRC’s latest £2.6 million grant to "strengthen" the very weak evidence that cognitive behavioural therapy (CBT or "brain-washing") and forced "rehabilitation programmes" (graded exercise therapy or GET) actually work for those with but the clear evidence is that they do not, and are in fact harmful.’

Notes on the involvement of Wessely et al with the Insurance Industry and how they deal with M.E. or CFS claims by Stephen Ralph, June 2003


 

‘As with Gulf War Syndrome, the evidence continues to be dismissed.  That patients suffer indescribably and that many are completely abandoned by the State and are so without hope or support that they are driven to suicide seems to be of no consequence when weighed against costs implications to Government and to the industries which fund it. Despite all the published international evidence that M.E. is a serious, chronic and devastating neuroendocrine-immuno-vascular disorder, UK Government bodies have decreed that M.E. patients must not be fully investigated and that no research is to be undertaken into the disrupted biology; instead, all that is to be provided for such gravely sick people are more psychiatric "centres of excellence" which will deliver cognitive behavioural therapy and a psychiatric ascription (thereby excluding such patients from essential financial benefits necessary for basic survival).’

Notes on recent research in M.E. and the Government’s policy of denial by Stephen Ralph, September 2003


 

‘Unum's 1995 'Chronic Fatigue Syndrome Management Plan' sounded the alarm: 'Unum stands to lose millions if we do not move quickly to address this increasing problem'.

It was actually Provident that was quickest off the mark, introducing an aggressive system of 'claims management' that would become the industry norm. It could not influence interest rates, but it could reduce the number of successful claims it paid out. Its Independent Medical Examination (IM.E.) was skewed in favour of the company through the work undertaken by its claims adjusters and in-house doctors. Illnesses were characterised as 'self-reported' and so thrown into question. Only 'objective' test results were accepted. Some disabling conditions were labelled as 'psychological', which made them ineligible for insurance cover beyond 24 months. Doctors were pressured to use the 'subjective nature' of 'mental' and 'nervous' claims to the company's advantage. Specific illnesses were targeted in order to discredit the legitimacy of claims. The industry drew on the work of two of the Woodstock conference participants, Professor Simon Wessely of King's College and Professor Michael Sharpe of Edinburgh University, in an attempt to reclassify [M.E.] as a psychiatric disorder. Success would allow payouts to be restricted to the 24 month limit for psychological claims and save millions of dollars. By 1997 Provident had restructured its organisation to focus on disability income insurance as its main business. It acquired Paul Revere, and then in 1999 merged with Unum under the name UnumProvident.

Meanwhile, in the US UnumProvident's business activities had been coming under increasing scrutiny. In 2003, the Insurance Commissioner of the State of California announced that the three big insurance companies had been conducting their business fraudulently. As a matter of ordinary practice and custom they had compelled claimants to either accept less than the amount due under the terms of the policies or resort to litigation. The following year a multistate review identified four areas of concern: an excessive reliance on in-house professionals; unfair construction of doctor's or IME reports; a failure to properly evaluate the totality of the claimants' medical condition; and an inappropriate burden on the claimant to justify eligibility for benefit. UnumProvident was forced to reopen hundreds of thousands of rejected insurance claims. Commissioner John Garamendi described UnumProvident as 'an outlaw company': 'It is a company that for years has operated in an illegal fashion.' ‘

New Labour, the market state, and the end of welfare by Jonathan Rutherford: Jonathan Rutherford looks at the connections between government and the insurance business in their joint project to reduce eligibility for sickness benefits.


 

‘The greatest threat right now comes not just from the psycho-corporate lobby; they are so easily exposed. It comes from the moderates, the lukewarmers, the compromisers right at the centre; who cannot see the damage they are doing by negotiating the truth away. Because the psycho/corporate lobby's truth is a relative one (to a political agenda), it can be infinitely flexible, so the goal posts can be constantly moved about by the corporate-psychiatric lobby and the real truth perverted, especially by the brilliant infiltration of patient movements.

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.’

From M.E. advocates Greg and Linda Crowhurst in: M.E. Awareness: Check out the facts


 

"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has." Margaret Mead (1901-78)


For more information please see the following paper:

Who benefits from 'CFS' and 'ME/CFS'? 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?

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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."

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