Letters published in ‘The Observer’, 28 August 2011, in response to Robin McKie’s article last week

August 28, 2011


In response to Chronic fatigue syndrome researchers face death threats from militants (Robin McKie), Observer, 21 August 2011.


The big issue: Extremism has no place in the quest to find a cure for ME
There is a crying need for research into the organic causes of ME


I deplore the threats directed at Professor Simon Wessely and others, but there are strong reasons for taking exception to his views and their influence (“Scientists face stream of ME death threats”, News).

There is no generally accepted diagnostic marker for ME, so that the occasional patient with purely psycho-logical problems may be diagnosed with ME and restored to health by the means he proposes. Besides, people with a wide range of disorders derive some benefit from symptom management techniques. But in general, cognitive behaviour therapy and graded exercise therapy do not restore ME patients to anything near normal functioning.

There is a crying need for research into the organic causes of ME. Let's hope the activities of a few misguided activists will not alienate potential researchers.

Dr Patricia de Wolfe
London SE13


Perpetuating tales of a tiny minority of extremists does grave disservice to the many thousands who simply struggle on through years of illness, housebound, bedbound and in distress. And it only serves to discourage the very scientists we are trying to recruit into this grossly underfunded area of research.

Sir Peter Spencer
Chief executive
Action for ME
Bristol


Your article was disturbing on two levels. First, because it highlighted the unreasonable responses of some towards those researching ME. Second, because it indicated that part of the syndrome for some sufferers appears to involve a reluctance to get better. I write as someone who has suffered the condition and who also has a depressive illness.

I would awake feeling well and then physically collapse about an hour into the day. I started mowing some paths one morning before the onset of the fatigue in the knowledge that I would probably injure myself if I collapsed and fell off the ride-on mower. One half of my psyche was telling me to collapse, while the voice of reason said I couldn't because I would hurt myself. The latter won. Over the course of the next few days, I was able to hold the fatigue at bay by carrying out similar exercises until the condition passed.

Having already accepted that I had a mental illness, it was not a problem accepting that the ME had been brought on by a very stressful life situation.

Colin Boylett
Kington, Herefordshire


May I draw attention to the different approach which is used in treatments such as Mickel Therapy. These therapies find the roots of CFS and ME in primary emotions and their effect on the hypothalamus, so that the very real physical illnesses are essentially a symptom of them. These approaches say that the key lies in recognising these fundamental emotions and taking constructive actions based upon them. Therapies of this kind have had great success in treating clients who, through embracing them, have recovered from their debilitating and distressing conditions.

Andrew Whiteley
Consett, Co Durham


People are justifiably angry at the way it has been left to patients and charities to fund biomedical research into ME/CFS. The Medical Research Council has now set up an expert group. A list of research priorities has been identified, along with £1.5m of funding for biomedical research. Applications are now being peer reviewed/assessed.

Dr Charles Shepherd
Hon medical adviser
ME Association
Gawcott, Bucks


I would point out the chronic neglect that we patients have suffered from the medical profession. We are often the subject of vilification, abuse and ridicule. People are angry and bitter. This is in addition to the burden of being chronically ill, the isolation and the financial difficulties that come from being incapacitated.

Claire Gittoes
Crowborough, East Sussex

7 thoughts on “Letters published in ‘The Observer’, 28 August 2011, in response to Robin McKie’s article last week”

  1. I presume this is the same Dr. Patricia de Wolfe:

    The thesis can be downloaded for free from:
    http://ethos.bl.uk/Home.do

    It’s not easy to copy and paste so there may be errors

    PATRICIA JEAN DE WOLFE
    ‘I’M REALLY ILL, I’VE GOT M.E’

    BODILY DISORDER AND THE QUEST FOR DISEASE

    THESIS SUBMITTBD FOR THE DEGREE OF DOCTOR OF PHILOSOPHY IN THE
    UNIVERSITY OF LONDON
    DEPARTMENT OF SOCIOLOGY
    GOLDSMITHS COLLEGE
    MARCH 1999

    ABSTRACT

    “I’m REALLY ILL, I’VE GOT M.E”: BODILY DISORDER AND THB QUEST FOR DISEASE

    This thesis explores the terms of the debate surrounding the nature of myalgic encephalomyelitis M.E.), a condition characterised by profound exhaustion, muscle weakness, and a host of other symptoms, which has generated much controversy since coming to prominence in the late 19805.

    Crucially, there 1s no diagnostic test for the purported disease. However, those claiming to be its victims are convinced that they suffer from an incapacitating organic disorder not of their making. warranting social support and medical help. Their claims, heavily dependent on their reports of experienced symptoms, have been contested by critics who have diversely construed M.E. as a psychiatric illness and/or as an effect of personality or behaviour.

    Using knowledge derived from participation in an M.E. support group, and analysis of material published in the journals of M.E. charities and in the medical and popular press, the thesis examines what is involved, epistemologically, socially, and morally, in the claims to ‘real disease’ made by people with M. E., as well as in the counterarguments of sceptics. It proposes a conceptualisation of disease, fundamental to understandings of bodily disorder, and a precondition for (although not a guarantee of) the exculpation of the sufferer. The thesis examines a range of constructions of sick people as guilty
    of their illness; shows how these stigmatising constructions pervade discourses on M.E.; and evaluates the arguments by means of which people with M.E. attempt to establish their bona fides. The thesis also addresses the question of whether people with M.E. might have pursued aims other than inclusion in a biomedical category, and points to the difficulties of evolving alternative strategies for legitimating bodily disorder.

  2. “Having already accepted that I had a mental illness, it was not a problem accepting that the ME had been brought on by a very stressful life situation.”

    Oh for Goodness sake – just place us right in the middle of the DSM, why don’t you. This selection of letters has done a great job of perpetuating the manufactured “controversy” and of perpetuating the “mental health” label so beloved by the Wessely School and the media.

  3. Personally, I am running out of patience with people who cannot cope with their “stressful life situations” and who end up being casually diagnosed with the dustbin diagnosis ‘CFS; and then claim that their “stress” caused ME. There are enough relaxation, meditation, life coaching and personal growth courses around now to address “stressful life situations”. If “the stressed” don’t want to help themsleves by those methods then they only have themsleves to blame.

    Those of us who have the organic disease Myalgic Encephalomyelitis are left to rot and stuggle with basic survival, while Mickel and mental health enthusiasts do very well.

    How manipulative of the Observer’s Editor to portray ME as a stress syndrome or mental health disorder.

  4. This letter was submitted by Professor Hooper to the Observer, in response to the article by Robin McKie “Chronic fatigue syndrome researchers face death threats from militants”, published on Sunday the 21st of August 2011, http://www.guardian.co.uk/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis/print

    Professor Hooper was contacted out of the blue by the reader’s editor of the Observer. They spoke at length on the telephone and the editor asked Professor Hooper to respond to Robin McKie’s article.

    The editor indicated that the responses to the article were building up into a feature length article for the Magazine section and Professor Hooper agreed to submit a longer article as well as a letter.

    He received an acknowledgement from the reader’s editor saying it was there intention to use the letter but the following day he received a further email from the same person to say it would not be published.

    From Malcolm Hooper Ph.D.,B.Pharm.,C.Chem.,MRIC
    Emeritus Professor of Medicinal Chemistry
    University of Sunderland, SUNDERLAND SR2 3SD

    Chief Scientific Adviser to the Gulf Veterans’ Association
    President: the National Gulf War Veterans and Families Association, NGVFA, (2002)

    25 August 2011

    Dear Sir

    No right-minded person condones any campaign of vilification against psychiatrists but equally, no right-minded person can condone what psychiatrists like Wessely have done to the UK ME community over the last 25 years.

    It is indefensible to liken people with ME to the Animal Liberation Front; this is an attack on the whole ME community, not only the few people who have behaved irrationally.

    ME has been in the medical literature for the last 70 years and classified by the WHO as a neurological disorder since 1969.

    The recent International Consensus Criteria for ME produced by 26 world experts from 13 countries shows ME to be a complex, chronic illness of which post-exertional malaise (inability to recover after exercise) is the cardinal feature. This makes exercise dangerous and sometimes fatal. There are multiple symptoms and multiple clinical signs showing dysfunction and dysregulation of all the major organs and systems of the body.

    No NHS clinician has the autonomy to regard ME as a somatoform disorder. The Department of Health has confirmed in writing that: “ICD-10 is an NHS Information Standard…..There is a legal obligation for Department of Health to provide ICD data to the WHO for international comparison. The NHS was mandated to implement ICD-10 on 1 April 1995, at which time there was a formal consultation…. Implementation…applies to NHS organisations and their system suppliers, such as acute and foundation trusts, primary care trusts, and the NHS Information Centre”. The Wessely School psychiatrists, many GPs and NHS neurologists are in breach of this mandate.

    For Wessely School psychiatrists to continually ignore the scientific evidence is wilful ignorance but to advise the DWP decision-makers and train ATOS examiners that ME is a mental disorder is deceitful and abusive; to section patients with ME and remove them from their distraught families is abusive; to make sick people worse by inappropriate interventions is abusive; to deny them financial support necessary to survive is abusive; to mock them and to misinform others about their serious disorder is abusive; to insist that they suffer from wrong thinking and a fear of activity when they suffer from a very serious medical disorder with reproducible multiple systemic abnormalities is abusive.

    These psychiatrists, who have direct and lucrative links with the Insurance industry, have been reported to Parliament. The industry stands to lose £ millions if it has to pay out for a severe life-long physical illness whereas psychiatric (functional, somatoform) conditions are usually excluded and lower benefits paid by the DWP.

    The true ME story has yet to be told.

    Malcolm Hooper

    Permission to repost.

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