ME: Abuse of Science, abuse of the sick & disabled

Discussion in 'Fibromyalgia Main Forum' started by tansy, Aug 27, 2007.

  1. tansy

    tansy New Member

    Myalgic Encephalomyelitis (ME), the NICE and New Labour:

    August 2007.

    Myalgic Encephalomyelitis (ME) is a serious and life-changing
    biomedical disorder and recognised as such by the World Health
    Organisation at ICD 10-G.93.3.1 As internationally respected ME
    authority Dr Byron Hyde states:

    "ME in adults is associated with measurable changes in the central
    nervous system and autonomic function and injury to the
    cardiovascular, endocrine and other organs and systems. The patient
    with the diagnosis of ME/CFS is chronically and potentially seriously
    ill. These ME/CFS patients require a total investigation and
    essentially a total body mapping to understand the pathophysiology of
    their illness and to discover what other physicians may have missed.
    A patient with ME is a patient whose primary disease is central
    nervous system change, and this is measurable. The belief that
    ME/CFS is a psychological illness is the error of our time".2

    And to quote Harvard Myalgic Encephalomyelitis expert, Professor
    Anthony Komaroff:

    "…we still don't know what causes it [ME] or how to treat it
    successfully. But the good news is that there are now over 4,000
    published studies that show underlying biomedical abnormalities in
    patients with this illness. It's not an illness that people can
    simply imagine that they have and it's not a psychological illness.
    In my view, that debate, which has waged for 20 years, should now be

    ME is not only adversely life-changing: it is, as acknowledged by a
    UK coroner and leading medical specialists, sometimes life-
    threatening.4 In the UK, however, the so-called National Institute
    for Health and Clinical Excellence (NICE) has effectively and
    erroneously labelled ME patients as mentally ill (on 22 August 2007
    in the publication of its `Chronic Fatigue Syndrome/ Myalgic
    Encephalomyelitis or Encephalopathy' Guidelines).5 It has chosen to
    largely ignore the wealth of international biomedical expertise and
    the need for proper physical patient investigation and has
    effectively recommended abuse and neglect of patients in place of
    genuine science-based medicine. This has chiefly been done by backing
    the highly controversial views and CBT/GET (Cognitive Behavioural
    Therapy / Graded Exercise Therapy) `treatments' of the insurance-
    industry-linked `Wessely School' group of psychiatrists: a group
    charged with vested-interests, committing wholesale scientific
    malpractice, systematic persecution of struggling and vulnerable
    patients, and behaving more like a cult than ethically motivated
    science-based doctors.6 There are literally thousands of scientific
    papers revealing serious physical abnormality in ME patients that
    have been effectively ignored by the NICE guideline development
    process and sidelined by its creative remit tactics.7
    Modern `evidence-based medicine' is supposed to take into account all
    qualified international specialist clinical experience but NICE has
    comprehensively failed to do this. Instead NICE have built their
    sham `CFS/ME' guideline around just 7 RCTs (randomised control
    trials) of highly suspect quality, relevance and probity that clearly
    serve the vested interests of the multinational insurance industry.8

    It is disingenuous for the NICE to claim that patients will have a
    real choice about whether to accept CBT/GET when most patients are
    ignorant of the wealth of international contra-indicative biomedical
    research on this matter that NICE and the Wessely-School led
    establishment are clearly determined to ignore. Most patients will
    blindly trust their doctors and the NICE recommendations and those
    with real ME will suffer the consequences. Contra-indication of
    CBT/GET has been widely reported by many expert clinicians and
    researchers. For example:

    "The results of this study indicate that (ME)CFS patients suffer from
    symptom exacerbation following physical stress. As with MS, lupus
    and RA, post-exertional symptom exacerbation appears to be both a
    real and incapacitating feature of the syndrome. The delayed recovery
    response evoked by a single bout of exercise stress is distinctly
    different from that of sedentary controls. The debilitating effects
    help to explain activity avoidance, which should be considered when
    prescribing exercise and activity management programmes for (ME)CFS

    "ME/CFS patients have reduced blood flow to the brain and exercise
    exacerbates this reduced blood flow. This has been known for over a
    decade, but the new evidence is that elevated elastase and RNase-L
    levels correlate with reduced blood flow." 10

    "ME/CFS patients' ability to work is impaired, as shown by an
    abnormal exercise stress test. They do not recover in 24 hours.
    Serial testing points to a significant and confirmable physical
    abnormality. This test is 100% objective and can prove to the
    disability companies that ME/CFS is neither malingering nor faking."11

    "Unlike our previous interpretation of the data, we feel this new
    analysis suggests that (ME)CFS patients may develop exercise
    intolerance as demonstrated by reduced total activity after 4 – 10
    days. The inability to sustain target activity levels, associated
    with pronounced worsening of symptomatology, suggests the subjects
    with (ME)CFS had reached their activity level. Our results provide
    information on the time course by which people with (ME)CFS may
    develop exercise intolerance".12

    "There is mounting evidence that oxidative stress and, more
    specifically, lipid peroxidation, contribute to the disease process
    and to some of the symptoms in (ME/CFS). The novel findings in this
    study are that patients with (ME)CFS have significantly elevated
    levels of F2 isoprostanes alongside other key markers of oxidative
    stress and that these correlate with various (ME)CFS symptoms. This
    is the first time that elevated levels of isoprostanes have been
    reported in patients with (ME)CFS. Isoprostanes have been shown to be
    powerfully vasoconstricting and are involved in endothelial injury.
    Research has demonstrated that incremental exercise challenge
    potentiates a prolonged and accentuated oxidant stress that might
    well account for postexercise symptoms in (ME)CFS patients. It could
    be suggested that (ME)CFS is an inflammatory condition (which) could
    explain many of the pathological manifestations that underlie the

    "In ME/CFS, there are three main abnormalities in gene expression
    studies; these involve the immune system, mitochondrial function and
    G-protein signalling. There are seven genes upregulated in ME/CFS –
    those associated with apoptosis, pesticides, mitochondrial function,
    demyelination and viral binding sites."14

    "…central problem of chronic fatigue syndrome is mitochondrial
    failure resulting in poor production of ATP… This test clearly shows
    that cognitive behaviour therapy, graded exercise and anti-
    depressants are irrelevant in addressing the root cause of this

    Moreover, reassurances that lack of `optional' patient submission to
    CBT/GET and de-facto labelling of the illness as psychiatric will not
    affect access to welfare benefits need to be taken with a very large
    pinch of salt. The inexorable and incremental conveyor belt of Unum-
    Provident's / New Labour's `Pathways to Work' gathers pace.
    Developments at the NICE need to be seen alongside the recent, and
    equally disgraceful, NHS-Plus Occupational Health and DWP guidelines
    on `CFS/ME'. The totality of these measures will ultimately lead to
    patients being effectively mugged for their state and insurance
    benefits - as well as being denied proper medical assessment and

    In taking such a path, the NICE process has participated in a
    monumental affront to international research science, clinical
    findings and patient experience: the supposed three foundations of
    modern `evidence-based' medicine. It represents a thinly disguised
    case of `policy-based evidence' usurping `evidence-based policy'. The
    NICE/York literature review amounts to nothing short of professional
    misconduct and fraud: fraud that is based upon unscientific and
    deliberately fudged patient selection criteria and replete with
    vested interest. Such charges are not made lightly and are amply
    backed up by documentation on the website and
    elsewhere.17 Vague notions of `fatigue' and `chronic fatigue' have
    replaced proper patient selection so that serious neurological
    patients with multi-system physical pathology - often experiencing
    varying degrees of heart failure - are swept up with lesser
    depressive/ idiopathic fatigue patients.18 This leads to inadequate
    treatment of all patients and, crucially, undermines bona-fide
    patient claims for higher-level welfare benefits. For real ME
    patients, New Labour's `Pathways to Work' is a misguided pathway to
    hell: beckoning inevitable confrontation in the courts. It has arisen
    because Government chose to favour corporate voices, their supporters
    and dupes, over and above those with real ME and with real scientific
    expertise on the illness. It may even result in taxpayers' spending
    more money, not less, as it will end up costing ME patients the
    chance of real recovery from this traduced and widely misrepresented
    chronic disease. This is all a scandalous national tragedy in the
    making. Please therefore take note of the following and search out
    the essential truth. The devil, I am afraid, really is in the detail:
    It will not be had by reliance upon the one-sided media spoon-feed
    from government and establishment-supported bodies like the Science
    Media Centre. Please, above all, act in the defence of the sick, the
    vulnerable, good science, truth and social justice…

    To quote Canadian Psychiatrist and ME specialist Dr Eleanor Stein:

    "I would never in my practice use the Wessely model of cognitive
    therapy – I find it disrespectful to try to convince somebody they
    don't have an illness that they clearly have".19

    To quote Professor Nancy Klimas, ME specialist and one of the
    contributors to the erudite Canadian Diagnostic and Treatment

    "…the CDC recently did a study that broadened rather than tightened
    (the illness definition) and when they did so, it tripled the
    population of patients with `CFS', and so there's a real dilemma that
    it might have umbrella-ed a much larger group. I would be really
    nervous to bring anyone together right now for fear something really
    bad might happen. Using the Canadian case definition as a research
    case definition has some real possibilities if people who are using
    both would just publish the data comparing the groups, and then we
    would have empiric data that allowed us to redefine the case
    definition using this new criteria and make it a data-driven

    How much more therefore do such concerns apply to the even less
    scientifically rigorous `Oxford' and other patient-selection criteria
    favoured by the UK Wessely school and the NICE: given that such
    criteria actually exclude neurological and other symptoms of true ME
    that are properly recognised by the World Health Organisation and
    respected international treatment and diagnostic protocols?21 How on
    earth can you have proper research when you actually exclude patients
    with recognised major clinical signs of the disease you are supposed
    to be examining?

    To quote Dr Bruce Carruthers, Fellow of the Canadian Royal College
    and principle lead of the international expert team that produced the
    highly respected ME/CFS Clinical Case Definition:

    "A hypothesis underlying the use of Cognitive Behaviour Therapy (CBT)
    for ME/CFS is based on the premise that the patient's impairments are
    learned due to wrong thinking and `considers the pathophysiology of
    CFS to be entirely reversible and perpetuated only by the interaction
    of cognition, behaviour, and emotional processes. The patient merely
    has to change their thinking and their symptoms will be gone.
    According to this model, CBT should not only improve the quality of
    the patient's life, but could be potentially curative'. Supporters
    suggest that `ideally general practitioners should diagnose CFS and
    refer patients to psychotherapists for CBT without detours to medical
    specialists as in other functional somatic syndromes'. Proponents
    ignore the documented pathophysiology of ME/CFS, disregard the
    reality of patient's symptoms, blame them for their illness and
    withhold medical treatment. Their studies have often included
    patients who have chronic fatigue but excluded more severe cases as
    well as those who have other symptoms that are part of the clinical
    criteria of ME/CFS. Further, their studies fail to cure or improve
    physiological impairments…"22

    I, along with many others, spent over a year exhausting myself
    furnishing Ian Gibson MP and his cross-party parliamentary `Group on
    the Scientific Research into ME (GSRME)' with evidence and experts.23
    However, by its own admission the group/report admits that it was
    unable to fully and properly engage with what was presented to it. In
    the view of many, including me, this led to serious mistakes in the
    published report. Nevertheless the GSRME did rightly call for a
    properly resourced and qualified broad-ranging independent scientific
    inquiry into ME. In contrast, Dr Gibson and his colleagues were made
    well aware of the widespread criticism of the NICE and its highly
    flawed `consultation' process. The GSRME report also called for an
    ending of the practice of the Medical Research Council (MRC)
    exclusively giving taxpayer's funding to psychiatric (i.e. insurance-
    industry-linked Wessely School) `research' projects. Crucially, the
    GSRME also called for an investigation `by the appropriate standards
    body' into the disgraceful revolving-door practices at the DWP: whose
    recent former CFS/ME `medical advisor', Mansel Aylward, now receives
    a large Unum-Provident salary cheque.24 None of this, however, was
    heeded by a government that clearly, once it has made its mind up on
    the basis of advice that suits its agenda (regardless of how flawed
    the advice: e.g. Iraq), is expertly adept at only appearing to listen
    to critical voices. In reality it does not truthfully listen; and the
    patronising Whitehall-knows-best juggernaut slithers on regardless in
    an arrogant slime of spin. To quote Sir Menzies Campbell MP on the
    BBC Radio 4 Today programme on 3rd July 2007:

    "the public no longer has any influence on the way decisions are
    taken and has become alienated from the democratic process. The
    broadsheets are replete with examples of an incompetent New Labour
    administration that is obsessed with securing central government
    control over everyone at every level from conception to the grave and
    which irrationally sweeps away all reasoned opposition."

    Public hopes of a new beginning under the premiership of Gordon Brown
    must be rapidly fading and one cannot help suspect he will be tempted
    to rush the electorate to the polls before it sufficiently wakes up
    to the reality that he is largely a peddler of unchanged Blair-ism.
    If our new New-Labour Prime Minister does not heed the screaming
    voice of true ME patients and real international medical expertise,
    and if he does not act to overturn the disgraceful anti-science
    output of the NICE and its adjuncts, then scientific and democratic
    integrity are dead in this country. So too then should be the case
    for his inherited occupation of number 10 Downing Street, along with
    the fast-rotting edifice of betrayal that New Labour appears to have

    I will never again be a member of the Labour party. I can only
    imagine that the likes of party and NHS icons such as Aneurin Bevan
    would roll and vomit in their graves if they could witness the
    welfare of society's most vulnerable sacrificed to corporate profit
    and fiscal budget. Especially when at the same time the state is
    prepared to spend billions on ill-advised military adventurism
    projects resulting in us all being increased targets for terrorists.
    I doubt too that myself, and many thousands like me, will ever want
    to vote New Labour again. Sadly, however, other UK mainstream parties
    and parliament in general seem to be almost as uncaring or impotent
    thus far. Surely anyone with half a brain would conclude that there
    is nothing ME patients would like more than to access real science-
    based treatment that would help them back to work? Patients are
    utterly and thoroughly sick of the humiliation, degradation and
    struggle of long-term state-dependent poverty and abuse. If, for
    example, you suffer with Multiple Sclerosis and have a good day you
    are (rightfully) told `well done'. If you are afflicted with ME and
    have a good day you are told you are not as ill as you believe or
    worse! People, including doctors, only see most ME patients on a good
    day when they can get out of the house, and usually assume the
    patient is less ill than stated. Now they will have the Wessely/NICE
    view to support them in their prejudice. To be ill and to be abused
    for it is nothing less than a living hell. Before being ill most
    adult ME patients worked very hard, paid their taxes and paid
    national insurance. I for one used to have hope, and believed that we
    could improve our national democracy in its treatment of the sick. If
    UK `democracy' however does not properly care for the sick and
    vulnerable on the basis of real science and real nosological
    selection criteria then it, and the enlightenment it is supposed to
    be based upon, is a sham. I fear it is increasingly becoming a
    shabby little state run by grubby corporate-prostitutes presiding
    over quickening moral & social disintegration.25 God help us all.

    K. Short.
    UK ME Sufferer, August 2007.

    Permission to Repost.[This Message was Edited on 08/28/2007]
  2. tansy

    tansy New Member


    1 World Health Organisation (WHO) International Classification of
    Diseases at:

    2 The Complexities of Diagnosis. Byron Hyde. In: Handbook of Chronic
    Fatigue Syndrome. Leonard A Jason et al. John Wiley & Sons, Inc.
    And for a concise overview and history of ME & CFS see: A New and
    Simple Definition of Myalgic Encephalomyelitis and a New and Simple
    Definition of Chronic Fatigue Syndrome & A Brief History of Myalgic
    Encephalomyelitis And An Irreverent History of Chronic Fatigue
    Syndrome. Dr Byron Hyde, Nightingale Foundation, Toronto, Canada.
    Available at:

    3 Professor Anthony Komaroff, Harvard Medical School: Speaking at the
    USA Government CDC (Centers for Disease Control and Prevention) press
    conference on 3 November 2006.

    4 See: Inquest Implications? Eileen Marshall, Margaret Williams, 16th
    June 2006 at:
    See: The Inquest of Sophia Mirza. Sue Waddle, Invest in ME at:
    See: New Scientist: Sophia Mirza …official UK death from chronic
    fatigue syndrome: at:
    See: Causes of Death Among Patients With Chronic Fatigue Syndrome.
    Leonard A. Jason, Karina Corradi, Sara Gress, Sarah Williams, and
    Susan Torres-Harding. DePaul University, Chicago, Illinois, USA
    Health Care for Women International, 27:615–626, 2006. Routledge.
    Copyright © Taylor & Francis Group, LLC. ISSN: 0739-9332 print / 1096-
    4665 online: DOI: 10.1080/07399330600803766

    5 See: NICE – `Chronic fatigue syndrome / Myalgic encephalomyelitis
    (or encephalopathy)' diagnosis and management guidelines: at:
    Also see: Some Concerns about the National Institute for Health
    &Clinical Excellence (NICE) Draft Guideline issued on 29th September
    2006 on Diagnosis and Management of Chronic Fatigue Syndrome /
    Myalgic Encephalomyelitis in Adults and Children. Margaret Williams:
    And see: ADDENDUM to Some Concerns about the NICE Draft Guideline
    on "CFS/ME". Margaret Williams. At:

    6 See: 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 (ME) in the UK. Background Briefing for the House
    of Commons Select Health Committee. Professor Malcolm Hooper. At:
    And see: 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. Eileen Marshall, Margaret Williams 30th August
    2005. At:
    And see: Defiance of Science: A comparison of quotations about ME/CFS
    from the MERUK International Research Conference held on 25.05.07 in
    Edinburgh with quotations from the Wessely School (who call
    it "CFS/ME") Malcolm Hooper, Margaret Williams. 12th July 2007. At:
    And see: Wessely, Woodstock and Warfare? Margaret Williams. 9th
    August 2007. At:
    And see: SKEWED: Psychiatric Hegemony and the Manufacture of Mental
    Illness in Multiple Chemical Sensitivity, Gulf War Syndrome, Myalgic
    Encephalomyelitis and Chronic Fatigue Syndrome by Martin J Walker,
    Slingshot Publications, ISBN: 0-9519646-4X.

    7 See: Illustrations of Clinical Observations and International
    Research Findings from 1955 to 2005 that demonstrate the organic
    aetiology of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome.
    Malcolm Hooper, Eileen Marshall, Margaret Williams (For Gibson
    "…there are now over 4,000 published studies that show underlying
    biomedical abnormalities in patients with this illness. It's not an
    illness that people can simply imagine that they have and it's not a
    psychological illness. In my view, that debate, which has waged for
    20 years, should now be over". Professor Anthony Komaroff, Harvard
    Medical School: Speaking at the USA Government CDC (Centers for
    Disease Control and Prevention) press conference on 3 November 2006.
    And see: M.E. Research UK (MERUK) website at:
    And see: Myalgic encephalomyelitis: a review with emphasis on key
    findings in biomedical research. Professor M Hooper. J Clin Pathol
    2007; 60:466–471. Doi: 10.1136/jcp.2006.042408.
    And see: The Complexities of Diagnosis. Byron Hyde. In: Handbook of
    Chronic Fatigue Syndrome. Leonard A Jason et al. John Wiley & Sons,
    Inc. 2003.
    And for a concise overview and history of ME & CFS see: A New and
    Simple Definition of Myalgic Encephalomyelitis and a New and Simple
    Definition of Chronic Fatigue Syndrome & A Brief History of Myalgic
    Encephalomyelitis And An Irreverent History of Chronic Fatigue
    Syndrome. Dr Byron Hyde, Nightingale Foundation, Toronto, Canada.
    Available at:

    8 See: Inadequacy of the York (2005) Systematic Review of the CFS/ME
    Medical Evidence Base. Comment on Section 3 of: The diagnosis,
    treatment and management of chronic fatigue syndrome (CFS)/(ME) in
    adults and children, Work to support the NICE Guidelines, carried out
    by Anne-Marie Bagnall, Susanne Hempel, Duncan Chambers, Vickie Orton
    and Carol Forbes, Centre for Reviews and Dissemination, University of
    York October 2005 Comment by Professor Malcolm Hooper & Horace Reid,
    January 2006. At:

    9 University of the South Pacific, Stockton, CA (Post-exertional
    Symptomatology in Chronic Fatigue Syndrome. Stiles, TL; Snell, C;
    Stevens SR; Moran M; Van Ness JM. Medicine & Science in Sports and
    Exercise: 2007:39(5): S445). May 2007.

    10 H Kuratsune, Japan.

    11 M Ciccolella and C Snell, Stockton, California.

    12 Black and McCully from the Department of Kinesiology, The
    University of Georgia, USA: "Time course of exercise induced
    alterations in daily activity in chronic fatigue syndrome" (Dynamic
    Medicine 2005:4:10: doi: 10.1186/1476-5918-4-10).

    13 Oxidative stress levels are raised in chronic fatigue syndrome and
    are associated with clinical symptoms. Gwen Kennedy, Vance Spence et
    al. Free Radical Biology and Medicine: 2005:39:584-589.

    14 J Kerr, St Georges, London.

    15 Dr Sarah Myhill. CFS is a Symptom of Mitochondrial Failure. 2007.
    Available at:

    16 See: DWP (Department of Work & Pensions) Medical Guidance –
    Version 10 (May 2007) Chronic Fatigue Syndrome and Myalgic
    Encephalomyelitis / Encephalopathy at:
    See: NHS Plus: Occupational Aspects of the Management of Chronic
    Fatigue Syndrome: a National Guideline. At:
    And See: 25% ME Group Information: 25% ME Group Response to DWP
    Guidelines version 10. At:

    17 See for example: Some Concerns about the National Institute for
    Health &Clinical Excellence (NICE) Draft Guideline issued on 29th
    September 2006 on Diagnosis and Management of Chronic Fatigue
    Syndrome / Myalgic Encephalomyelitis in Adults and Children. Margaret
    Williams: At:
    See: ADDENDUM to Some Concerns about the NICE Draft Guideline
    on "CFS/ME". Margaret Williams. At:
    And see: M.E. Research UK (MERUK) website at:

    18 See: What is ME? What is CFS? Information for Clinicians and
    Lawyers. Malcolm Hooper, Eileen Marshall, Margaret Williams. At:
    And see: Peckerman A, Lamanca JJ, Dahl KA, et al. Abnormal impedance
    cardiography predicts symptom severity in chronic fatigue syndrome of
    disease. Am J Med Sci. 2003; 326:55–60.

    19 Speaking at the recent MERUK International Research Conference
    held on 25.05.07 in Edinburgh. See:
    Also see: Chronic Fatigue Syndrome: Assessment and Treatment of
    Patients with ME/CFS: Clinical Guidelines for Psychiatrists. Eleanor
    Stein MD FRCP(C).

    20 Speaking at the recent MERUK International Research Conference
    held on 25.05.07 in Edinburgh. See:
    Also see: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome:
    Clinical Working Case Definition, Diagnostic and Treatment Protocols
    (`Canadian Criteria' – Full Version). Bruce M. Carruthers, Anil Kumar
    Jain, Kenny L. De Meirleir, Daniel L. Peterson, Nancy G. Klimas, A.
    Martin Lerner, Alison C. Bested, Pierre Flor-Henry, Pradip Joshi, A.
    C. Peter Powles, Jeffrey A. Sherkey, Marjorie I. van de Sande.
    Journal of Chronic Fatigue Syndrome. Volume 11
    Number 1, 2003. At:

    21 World Health Organisation (WHO) International Classification of
    Diseases at:
    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working
    Case Definition, Diagnostic and Treatment Protocols (`Canadian
    Criteria' – Full Version). Bruce M. Carruthers, Anil Kumar Jain,
    Kenny L. De Meirleir, Daniel L. Peterson, Nancy G. Klimas, A. Martin
    Lerner, Alison C. Bested, Pierre Flor-Henry, Pradip Joshi, A. C.
    Peter Powles, Jeffrey A. Sherkey, Marjorie I. van de Sande. Journal
    of Chronic Fatigue Syndrome. Volume 11
    Number 1, 2003. At:

    22 See SHS Box on page 10 of (and indeed the whole document): Myalgic
    Encephalomyelitis / Chronic Fatigue Syndrome: A Clinical Case
    Definition and Guidelines for Medical Practitioners - An Overview of
    the Canadian Consensus Document by Professor Bruce M Carruthers and
    Dr Marjorie I Van de Sande.
    UK – NHS Clinician Endorsed / A4 Format - Version:
    Original Canada Version:

    23 See The Gibson Group on the Scientific Research into ME
    (G.S.R.M.E.), House of Commons Website at:

    24 See The Gibson Group on the Scientific Research into ME
    (G.S.R.M.E.), House of Commons Website at:
    And see: Wessely, Woodstock and Warfare? Margaret Williams. 9th
    August 2007. At:
    And see: Concerns About a Commercial Conflict of Interest Underlying
    the DWP Handbook on Myalgic Encephalomyelitis / Chronic Fatigue
    Syndrome. Professor Malcolm Hooper, Eileen Marshall & Margaret
    Williams. At:

    25 See: Noam Chomsky. Profit Over People – Neoliberalism and the
    Global Order. Seven Stories Press, 1999. ISBN: 1-888363-82-7.
    See: Noreena Hertz. The Silent Takeover – Global Capitalism and the
    Death of Democracy. Arrow Books. 2002. ISBN: 0-09-941059-1.
    See: David C Korten. When Corporations Ruled the World. Earthscan
    Publications Ltd. 1997.
    See: Michael Moore's new film: Sicko. Information at:
    See: The award winning film: The Corporation. Information at:
    And, just for fun (?), see the `white-collar' section/chapter 7
    of : `Without Conscience…' Professor Robert D Hare. The Guildford
    Press. 1999. ISBN: 1-57230-451-0.

  3. Rafiki

    Rafiki New Member

    While the situation of those in the UK sickens and saddens me, it also spawns this kind of intelligent, passionate and intellectually rigorous response to a situation that is blatant in the UK and covert in the rest of the world.

    If those of us who live elsewhere (I live in Canada) believe that we can become complacent because we do not face the overt discrimination which must be endured by those with ME in the UK we are sadly mistaken. We are every bit as expensive and inconvenient wherever we may be. Being quietly dismissed as neurotic, patient by patient, behind the closed doors of our doctor's offices is simply a more insidious but equally effective way of controlling and dismissing us.

    I live in a country with a clinical case definition which is the envy of patient groups around the world but individual doctors still feel completely comfortable stating that they simply do not believe in it. Despite our clear criteria many doctors still consider this a matter of personal belief like Santa Claus, the Tooth Fairy or MS not so very long ago.

    None of us can afford to become complacent. Each one of us is ill served by an ever broadening criteria for ME/CFS. A meaningless criteria for this illness makes it, in the minds of those who do not have it, a meaningless illness.

    I would like to thank the courageous UK ME patients who continue to advocate and agitate on behalf of us all.


  4. mezombie

    mezombie Member

    It's really stunning how the UK's NICE is influenced by not only Wessely but UNUM/Provident. And they appear deaf to any appeals to look into the science. The most recent NICE guidelines are much worse than the US CDC's. And, luckily, in the US, our doctors can ignore the CDC guidelines if they want to when it comes to treatment.

    UNUM/Provident was forced to settle a lawsuit in the US brought by the Attorneys General of several states on behalf of people (many with ME-CFS) who were denied disability claims. Is no one in the UK aware of this?

  5. tansy

    tansy New Member

    The situation here just gets worse; patients from other countries are not immune to the knock on effects.

    The psychiatrists behind this are obsessed with their hypotheses and of course they have the backing of UNUM/Provident. UNUM/Provident have been involved through our Department of Work and Pensions to reduce the numbers receiving sickness and disability allowances. Ministers and Secretaries of State repeat the Wessely School’s rhetoric; and just as worryingly this is being applied to the chronically sick generally. They have used the media to get their tough stance across, so use the Wessely’s school’s references to malingerers etc work to the Govt’s advantage.

    Yes Mezombie advocates and genuine specialists are aware of the UNUM/Provident lawsuits and campaign continually to make the powers that be aware of the true facts. In spite of all their work it’s made little difference.

    I’ve had a great extended weekend but when I commented to otherwise happy and positive minded people here that living in the UK stinks, they all agreed. This is part of a bigger problem so it’s a particularly difficult time to bring about real change.

    TC, Tansy
    [This Message was Edited on 08/28/2007]
  6. Rafiki

    Rafiki New Member

    It's really hard to believe it's "Labour" isn't it. How things have changed. Very sad.
  7. Honora88

    Honora88 Member


    i'm so tired of everyone telling me to go excercise or get on a treadmill when I'm already taking smaill walks this is the perfect article to send out to people.
  8. mezombie

    mezombie Member

    Problems with the New CDC CFS Prevalence Estimates
    Leonard Jason, Ph.D., DePaul University

    [The CDC study evaluated here can be found at ]

    By the early to mid 1990s, the general consensus was that CFS was a relatively rare disorder affecting primarily white, middle-class women. Prevalence estimates of this illness from the CDC ranged from .002% to .0073% (Gunn et al., 1993) suggesting that there were less than 20,000 individuals in the U.S. with this illness. Toward the late 1990s, Jason, Richman and colleagues (1999) used more rigorous community-based samples and found that approximately .42% of the sample was determined to have CFS, or approximately 800,000 people from the US (Jason, Richman et al., 1999). These overall prevalence estimates were later corroborated by the CDC in another community-based sample (Reyes et al., 2003 estimated the CFS prevalence to be .24%).

    In Great Britain, community estimates of CFS rates were estimated to be 2.6% (or 2.6 cases among every 100 people; Wessely et al., 1997). One needs to examine a broadened CFS case definition to understand these CFS rates in Great Britain, and if these rates were applied to the US, there would be about 4 million people in the US with CFS. Wessely et al. (1997) indicated that of the 2.6% with CFS, psychological disorders were absent in only .5%. Individuals diagnosed with CFS in this epidemiologic study were subsequently compared to a sample of people with CFS who had been diagnosed from a hospital unit (Euba, Chalder, Deale & Wessely, 1995). Of the community sample, 59% felt their illness might be due to psychological or psychosocial causes compared to 7% for the hospital sample. In Wessely et al.’s (1996) community based sample, only 64% had sleep disturbances and 63% had postexertional malaise. These percentages are rather low, as both symptoms are critical features of CFS. These findings might provide a clue as to why Wessely and colleagues found CFS prevalence rates that were appreciably higher than those found by a second generation of CFS epidemiologic studies in the United States (Jason et al., 1999; Reyes et al., 2003).

    It is of interest that the Great Britain CFS rates are within the range of several mood disorders. Mood disorders are the most prevalent psychiatric disorders after anxiety disorders: for major depressive episode, the one-month prevalence is 2.2%, and lifetime prevalence is 5.8% (Regier et al., 1988). Major Depressive Disorder is an example of a primary psychiatric disorder, which has some overlapping symptoms with CFS. Fatigue, sleep disturbances and poor concentration occur in both depression and CFS. Some patients with Major Depressive Disorder also have chronic fatigue and other symptoms that can occur with depression (e.g., unrefreshing sleep, joint pain, muscle pain, impairment in concentration). Fatigue and these four symptoms also are defining criteria for CFS, based on the Fukuda et al. (1994) criteria. It is possible that some patients with a primary affective disorder could be misdiagnosed as having CFS. While fatigue is the principal feature of CFS, fatigue does not assume equal prominence in depression (Friedberg & Jason, 1998; Komaroff et al., 1996). Several CFS symptoms, including prolonged fatigue after physical exertion, night sweats, sore throats, and swollen lymph nodes, are not commonly found in depression. Moreover, illness onset with CFS is often sudden, occurring over a few hours or days, whereas primary depression generally shows a more gradual onset. Some individuals with CFS might have had psychiatric problems before and/or after CFS onset and yet, other individuals may only have primary psychiatric disorders with prominent somatic features. Including the latter type of patients in the current CFS case definition could confound the interpretation of epidemiologic and treatment studies.

    The CDC has recently released findings from a community-based epidemiologic study that occurred in Georgia (Reeves, Jones, Maloney, Heim, Hoaglin, Boneva, Morrissey, & Devlin, 2007). While the prior CFS prevalence rate was estimated to be .24% in Wichita, Kansas (Reyes et al., 2003), their new estimated prevalence rates were reported to be considerably higher with 2.54% (remarkably similar to the 2.6% rate in Great Britain, Wessely et al., 1997). The CDC now estimates that six to ten times more people have this illness than their previous reports in the US. In this study, the authors screened for persons who reported fatigue, problems with memory/concentration, unrefreshing sleep or pain rather than simply focusing on the single symptom of fatigue, and the authors indicated that these criteria increased the identified cases by 13%. In addition, the authors used what they referred to as standardized criteria to identify cases, and below we evaluate this new empirical CDC case definition of CFS. To meet the new CFS criteria, individuals need to meet criteria on symptoms, level of disability and degree of fatigue, and each of these areas is described below.

    As one part of the standardized CDC criteria, the Symptom Inventory is used to operationalize the symptoms of CFS (Wagner et al., 2005). For each of 8 critical Fukuda et al. definitional symptoms, patients are asked to rate the symptom on perceived frequency (1 = a little of the time; 2 = some of the time; 3 = most of the time; 4 = all of the time) and severity or intensity of symptoms (the ratings were transformed to the following scale: 1 = mild, 2.5 = moderate, 4 = severe). The frequency and severity scores were multiplied, and the sums for the 8 critical Fukuda et al. (1994) symptoms were summed. Even with summed scores for the empirical case definition needing to be greater or equal to 25 (Reeves et al., 2005), the overall level of symptoms seems relatively low for patients with classic CFS symptoms (the criterion would be met if an individual rated only 2 symptoms as occurring all the time, and one was of moderate and the other of severe severity). In addition, the 8 case definition symptoms were based on a time period comprising the last month compared to what is specified in the Fukuda et al. (1994) criteria, which states that: “There needs to be the concurrent occurrence of 4 or more of the following symptoms, and all must be persistent or recurrent during 6 or more months of the illness and not predate the fatigue.” This change in the case definition has the potential of including more individuals.

    Also, part of this new CDC empirical CFS criteria is the use of the Medical Outcomes Survey Short Form-36 (SF-36) to assess substantial reductions in occupational, educational, social or recreational activities. Using the SF-36, these criteria were defined as scores lower that the 25th percentile on the physical function, role physical function, social function, or role emotional. Because the individual only needs to meet one of these areas to meet the CFS criteria, the individual might not have any reductions in key areas of physical functioning, and only impairment in role emotional areas (e.g., problems with work or other daily activities as a result of emotional problems), and then the person could meet disability criteria for CFS. Ware, Snow, and Kosinsi (2000) found that mean for role emotional for a clinical depression group was 38.9, indicating that almost all those with clinical depression would meet criteria for being within the lower 25th percentile on this scale (which was a score of less than or equal to 66.7). In Peter White’s Dec. 3. 2006 review ( of Reeves et al.’s (2007) article, he states: The use of physical function, role physical and social function sub-scales is consistent with the International Study criteria for CFS, which states that the illness “results in substantial reduction in previous levels of occupational, educational, social, or personal activities…” (Reeves et al, 2003). The use of role emotional is not, since it specifically asks about change in function “as a result of any emotional problems”. And later White states that “In order to make these important criteria consistent with other studies, I think the authors need to re-analyse their data, omitting this sub-scale.”

    The last instrument used with the new CDC empirical CFS criteria is the Multidimensional Fatigue Inventory (MFI) (Smets, Garssen, Bonke, & DeHaes, 1995). Severe fatigue was defined as greater than or equal to 13 on the MFI general fatigue or greater than or equal to 10 on the reduced activity. In Peter White’s Dec. 3, 2006 review of the Reeves et al.’s (2007) article (, he wrote: “This means that it would be possible to meet the fatigue criterion without significant fatigue; i.e. with reduced activity alone. This is inconsistent with the international study criteria for CFS.” In support of this criticism by White, I believe that the general activity items refer to issues that a person with depression might easily endorse. If a person indicated that the following two items were entirely true: “I get little done”, “I think I do very little in a day”; they would meet the fatigue criterion for the new CDC empirical case definition. Our group is currently studying individuals with major depressive disorder versus those with CFS, and we are finding individuals with a purely affective disorder being classified as having CFS with this new empirical case definition (Najar, Porter, & Jason, 2007).

    It is important to better understand the two CDC community based studies (Reyes et al., 2003; Reeves et al., 2007), and this is particularly important as their CFS estimated prevalence rates have changed so dramatically. Of the individuals who were identified as having CFS during the first study (Reyes et al., 2003) that occurred over a three year period (1997 through 2000), 58 were brought back for a two day inpatient study that occurred from December 2002 to July 2003, and only 16 (28% of the original group diagnosed with CFS) had a current consistent diagnosis of CFS, using traditional methods of making this diagnosis. When these investigators employed an empirically derived system (that was used in deriving the higher prevalence rates of 2.54% in the Georgia community based study), 43 rather than 16 individuals who had been traditionally diagnosed as having CFS met this new system. Clearly, this newly developed empirical system brings in many additional people to a CFS diagnosis. It is very possible that this new empirical classification does identify a group of individuals with high levels of fatigue, impairment, and symptoms, but it might also be identifying a group with high chronic distress and illness, rather than CFS as a unique disorder.

    It is at least possible that the 2.54% to 2.6% CFS rates both the United States and Great Britain are due to a broadening of the case definition and possible inclusion of cases with primary psychiatric conditions. Some CFS investigators would not see this as a confounding problem because they believe that high rates of psychiatric comorbidity indicate that CFS is mainly a psychiatric disorder (Abbey, 1993). CFS and depression are two distinct disorders, however, even if they share a number of common symptoms. Most importantly, the erroneous inclusion of people with primary psychiatric conditions in CFS samples will have detrimental consequences for the interpretation of both epidemiologic and treatment efficacy findings.

    Reeves et al. (2005) claims that the empirical definition identifies people with CFS in a more precise manner than can occur in the more traditional way. It is primarily the use of this new empirical case definition that has lead to the increase in CFS prevalence rates in the United States. In their use of the empirical case definition, several changes occurred to what had been previously recommended by an international expert committee (Reeves et al., 2003) of recommendations for the case definition of Fukuda et al. (1994). First, rather than excluding those with depressive disorder with melancholic features, only those with a current condition were excluded as opposed to what had been recommended. Of interest, of those 16 within the Reyes et al. (2003) study who had been classified with CFS using the more traditional methods, 6 had a past history of major depressive disorder with melancholic features (Reeves et al., 2005); and it is unclear how many of those 43 who were diagnosed using the empiric case definition had past depressive disorder with melancholic features. These individuals should have been excluded, and by including them, the broadening of the case definition has the potential to bring into the CFS category those with a primary psychiatric condition. More importantly, there was little agreement between the empirical method of classifying individuals with the more traditional method of comparing whether an individual met the case definition on their critical symptoms. Rather than assuming that this might be a problem with the CFS empirical case definition, they concluded that the more traditional way of diagnosing patients was flawed. As an example of this problem, one individual who was classified as being in remission for CFS using the traditional method was diagnosed with current CFS using the CDC’s empirical approach.

    Papers are now appearing in the literature using this empirical case definition of CFS, and many have received considerable media attention. For example, Heim et al. (2006) recently used this new empiric case definition and the Wichita study to explore the influence of early adverse experience on risk for developing CFS. The authors concluded that childhood trauma is an important risk factor for CFS. In fact, among those with CFS, 62.8% had some type of early abuse. This is in contrast to findings reported by Taylor and Jason (2002) who found prevalence rates of sexual and physical abuse history among individuals with CFS were comparable with those found in individuals with other conditions involving chronic fatigue, including medically based conditions. Relative to those with CFS who report such history, most individuals with CFS did not report histories of interpersonal abuse.

    The Reeves et al. (2005) article clearly used instruments (such as the SF-36) to make diagnostic decisions, rather than encompassing more specific criteria involving aspects of the illness (for example, whether with rest, all symptoms disappear). Given the high variability in symptom severity among persons with fatigue, standardized procedures should be employed for determining whether or not a particular symptom is severe enough to qualify as one of the symptoms required for the diagnosis of fatigue. But one needs to be extremely careful about deciding whether standardized instruments and scores need to include contextual issues, and often they do not. For example, if a patient endorses a symptom such as post-exertional malaise, standardized questions should include duration, frequency, and severity of the symptom including onset, pattern, intensity, and associated factors (see Hawk et al. 2007). Clinical judgment, which has been used in most past studies to diagnoses CFS, remains an important role even for diseases like lupus, which use a combination of clinical judgment, patient report, and objective measures to come up with a diagnosis. This currently is not occurring with the CFS empirical case definition developed by the CDC.

    Some researchers have posited that FMS, CFS, and IBS can be considered functional somatic syndromes (Barsky & Borus, 1999). Functional somatic syndromes are characterized by diffuse, poorly-defined symptoms that cause significant subjective distress and disability, cannot be corroborated by consistent documentation of organic pathology, and are highly prevalent even in healthy, non-patient groups (Barsky & Borus, 1999). Accurate measurement and classification of CFS, FMS and IBS is imperative when evaluating the diagnostic validity of controversial disease entities alternatively labeled, ‘functional somatic syndromes’. For example, results of a study by Taylor, Jason and Schoeny (2001) provided support for distinctions between the five conditions of FMS, CFS, somatic depression, somatic anxiety, and IBS, but this will only occur when using symptom criteria that matches actual diagnostic criteria for these illnesses. Measurement that fails to capture the unique characteristics of these illnesses might inaccurately conclude that only distress and unwellness characterize these illnesses, thus inappropriately supporting a unitary hypothetical construct called functional somatic syndromes. Ultimately, using a broad or narrow definition of CFS will have important influences on CFS epidemiologic findings, on rates of psychiatric comorbidity, and ultimately on the likelihood of finding biological markers.


    Abbey, S.E. (1993). Somatization, illness attribution and the sociocultural psychiatry of chronic fatigue syndrome. In B.R. Bock & J. Whelan (Eds.), Chronic Fatigue Syndrome. (pp. 238-261). New York: John Wiley & Sons.

    Barsky AJ, & Borus JF (1999) Functional somatic syndromes. Annals of Internal Medicine, 130, 910-921.

    Euba, R., Chalder, T., Deale, A., & Wessely, S. (1996). A comparison of the characteristics of Chronic Fatigue Syndrome in primary and tertiary care. British Journal of Psychiatry, 168, 121-126.

    Friedberg, J.R., & Jason, L.A. (1998). Assessment and treatment of Chronic Fatigue Syndrome. Washington, D.C.: American Psychological Association.

    Fukuda, K., Straus, S.E., Hickie, I., Sharpe, M.C., Dobbins, J.G., & Komaroff, A. (1994). The Chronic Fatigue Syndrome: A comprehensive approach to its definition and study. Annals of Internal Medicine, 121, 953-959.

    Gunn, W.J., Connell, D.B., & Randall, B. (1993). Epidemiology of chronic fatigue syndrome: The Centers-for-Disease-Control study. In B.R. Bock & J. Whelan (Eds.), Chronic Fatigue Syndrome. (pp. 83-101). New York: John Wiley & Sons.

    Hawk, C., Jason, L.A., & Torres-Harding, S. (2007). Reliability of a chronic fatigue syndrome questionnaire. Journal of Chronic Fatigue Syndrome, 13, 41-66.

    Heim, C., Wagner, D., Maloney, E., Papanicolauo, D.A., Solomon, L., Jones, J.F., Unger, E.R., & Reeves, W.C. (2006). Early adverse experience and risk for chronic fatigue syndrome: Results from a population-based study. The Archives of General Psychiatry, 63, 1258-1266.

    Jason, L.A., Richman, J.A., Rademaker, A.W., Jordan, K.M., Plioplys, A.V., Taylor, R., et al. (1999). A community-based study of chronic fatigue syndrome. Archives of Internal Medicine. 159, 2129-2137.

    Komaroff, A.L., Fagioli, L.R., Geiger, A.M., Doolittle, T.H., Lee, J., Kornish, R.J., Gleit, M.A., Guerriero, R.T. (1996). An examination of the working case definition of Chronic Fatigue Syndrome. The American Journal of Medicine, 100, 56-64.

    Najar, N., Porter, N., & Jason, L.A. (2007, Jan.). Evaluating the CDC new case definition. Poster presented at the International Association of Chronic Fatigue Syndrome, Ft. Lauderdale, Fl.

    Reeves, W.C., Lloyd, A., Vernon, S.D., Klimas, N., Jason, L., Bleijenberg, G., Evengard, B., White, P.D., Nisenbaum, R., Unger, E.R.(2003). Identification of ambiguities in the 1994 chronic fatigue syndrome research case definition and recommendations for resolution. BMC Health Services Research, 3, 25.

    Reeves, W.C., Jones, J.J., Maloney, E., Heim, C., Hoaglin, D.C., Boneva, R., Morrissey, M., & Devlin, R. (2007). New study on the prevalence of CFS in metro, urban and rural Georgia populations. Population Health Metrics 2007, 5:5 doi:10.1186/1478-7954-5-5

    Reeves, W.C., Wagner, D., Nisenbaum, R., Jones, J.F., Gurbaxani, B., Solomon, L., Papanicolaou, D., Unger, E.R., Vernon, S.D., & Heim, C. (2005). Chronic fatigue syndrome – a clinical empirical approach to its definition and study. BMC Medicine, 3:19; doi:10.1186/1741-7015-3-19. (available at: )

    Reyes, M., Nisenbaum, R., Hoaglin, D.C., Unger, E.R., Emmons, C., Randall, B., Stewart, G., Abbey, S., Jones, J. F., Gantz, N., Minden, S., & Reeves, W.C. (2003) Prevalence and incidence of chronic fatigue syndrome in Wichita, Kansas. Archives of Internal Medicine, 163, 1530-1536.

    Regier, D.A., Boyd, J.H., Burke, J.D., Jr., Rae, D.S., Myers, J.K., Kramer, M., Robins, L.N., George, L.K., Karno, M., & Locke, B.Z. (1988). One-month prevalence of mental disorders in the United States: Based on five Epidemiological Catchment Area sites. Archives of General Psychiatry, 45, 977-986.

    Robins, L.N., & Regier, D.A. (1991). Psychiatric disorders in America: The ECA study. New York: Free Press.

    Smets, E.M., Garssen, B.J., Bonke, B., & DeHaes, J.C. (1995). The multidimensional fatigue inventory (MFI) psychometric properties of an instrument to assess fatigue. Journal of Psychosomatic Research, 39, 315-325.

    Spitzer, R. L., Williams, J. B. W., Gibbon, M., & First, M. B. (1995). Structured Clinical Interview for DSM-IV - Non-Patient Edition (SCID-NP, Version 2.0). Washington DC: American Psychiatric Press.

    Taylor, R.R. & Jason, L.A. (2002). Chronic fatigue, abuse-related traumatization, and psychiatric disorders in a community-based sample. Social Science & Medicine, 55, 247-256.

    Taylor, R.R., Jason, L.A., & Schoeny, M.E. (2001). Evaluating latent variable models of functional somatic distress in a community-based sample. Journal of Mental Health, 10, 335-349.

    Wagner, D., Nisenbaum, R., Heim, C., Jones, J.F., Unger, E.R., & Reeves, W.C. (2005). Psychometric properties of the CDC Symptom Inventory for the Assessment of chronic fatigue syndrome. Population Health Metrics, 3:8 doi:10.1186/1478-7954-3-8 (available at:

    Ware, J.E., Snow, K.K., & Kosinski, M. (2000). SF-36 Health Survey: Manual and Interpretation Guide. Lincoln, RI: QualityMetric Incorporated.

    Wessely, S., Chalder, T., Hirsch, S., Wallace, P., & Wright, D. (1997). The prevalence and morbidity of chronic fatigue and chronic fatigue syndrome: a prospective primary care study. American Journal of Public Health, 87, 1449-1455.

    Wessely, S., Chalder, T., Hirsch, S., Wallace, P., & Wright, D. (1996). Psychological symptoms, somatic symptoms, and psychiatric disorder in chronic fatigue and chronic fatigue syndrome: A prospective study in the primary care setting. American Journal of Psychiatry, 153, 1050-1059.

    Wessely, S., Chalder, T., Hirsch, S., Pawlikowska, T., Wallace, P., & Wright, D.J.M. (1995). Postinfectious fatigue: Prospective cohort study in primary care. The Lancet, 345, 1333-1338.
  9. dizzidally

    dizzidally New Member

    Hi tansy,
    I totally agree with everything said here. We are still ignored by clinicians and polititians alike.

    I am currently waiting for a tribunal with the disability. Waiting to be interigated yet again by a panel of people who just stare and make assumptions just from the look of you.

    I was turned down for disability after the DWP sent a doctor to my home to see if I could climb stairs and bend over, and because I could even though with pain and exhaustion, and dizziness, and I don't need someone with me 24hrs a day, to care for my toilet needs, they decided I wasn't disabled.

    I have every empathy with anyone who has a disability, and have many friends who have also. A friend of mine who had his leg amputated from the knee, although struggled initially, now runs a very fulfilled life and is a local independent MP. He is able to claim disability!! I wish I could do a quarter of the things he does.

    Why is it called 'disablity allowance'? Definition of disability is someone who is not 'able' to do the the same things that an able bodied person of the same age is able to do, physically, mentally, or socially.

    Yet, the benefit the UK government are offering as 'disability allowance' the criteria is that you are not able to be left alone at all and need all personal care taken care of. This is not a 'disability allowance', this should be renamed a 'personal care allowance'.

    It seems to me that there should be two separate benefits here, to cover everyone who should be entitled.

    It is definitely a corrupt government.

    A new in-law of my friend, I recently found out, has fibromyalgia and she is claiming disability which pays for her house also.
    The consultant she saw wrote a letter to the DWP and she was allowed the benefit. After two years of visits to my hospital I haven't yet seen a consultant so that may be difficult!!
    My friend says her in-law is also alot more 'able' than I am!
    Somethings wrong somewhere.

    Would we be put through all this interegation and questioning if we had MS or Parkinsons (maybe not many years ago we would, as these diseases were also thought to all be 'in the head').

    Just because those in power and clinicians have not yet all agreed to the future outcome and diagnosis criteria of ME/CFS and Fibromyalgia, we who have to live 24/7 with these debilitating diseases still suffer.

    What happened to our human rights!!!!!!!!!!!!!

    I would be better off being a serious criminal, at least I would have more rights!!!!!!!!!

    Dizzi X
  10. mezombie

    mezombie Member

    What you just went through is right out of UNUM/Provident's handbook. Outrageous!

    You're right; people like us would be better off as criminals. We'd be judged more fairly, and if we actually were convicted, we'd at least get free room and board.

    It's too bad we're too ill to take part in civil disobedience. That would get us locked up!

    I really admire you, Tansy, and others from the UK on this board for all you do.
    [This Message was Edited on 08/28/2007]
  11. victoria

    victoria New Member

    I can't imagine those of you with Lyme in the UK are getting treated much better than ME patients...

    it's beginning to seem a dx of CFIDS/FM here is holding more weight than Chronic Lyme as far as getting treatment of any kind other than palliative, if not called outright "psychological" just like ME/CFIDS/FM.

    Obviously our gov'ts are corrupt to allow these things to continue.

    Sadly wishing you all the best,

  12. TeaBisqit

    TeaBisqit Member

    We need the media to fight this sort of thing. Each and every one of us needs to tell our tale to the media and keep pushing until we are heard all around the world.
  13. Rafiki

    Rafiki New Member

  14. This is the country where junkies and alcoholics get 'topped up' and people with illnesses not of the their own actions don't. I'm not totally unsympathetic to people who are addicts, since there is usually an underlying reason for some, but many of them just go out and use that money to buy more drugs or booze. It's a disgrace -and I'm only 21 and saying that!
  15. LonelyHearts

    LonelyHearts New Member

  16. LonelyHearts

    LonelyHearts New Member