1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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The Chronic Fatigue Initiative and Interview with Mady Hornig
In a follow-up article to the recent IACFS/ME conference presentation in San Francisco, and after speaking at length with Dr. Mady Hornig, 'searcher' delves deeper into the impressive work being completed by the Chronic Fatigue Initiative, and focuses in on those cytokine results ...
Discuss the article on the Forums.

Peter White Advising Reeves And The CDC Concerns

Discussion in 'General ME/CFS News' started by bananaman, Nov 3, 2009.

  1. bananaman

    bananaman

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    Bognor UK
    Bill Reeves said that Peter White does not think CFS is a Psychiatric illness? these recent Peter White medical textbook writings on CFS seem to allude to the fact that he quit clearly does!

    “Together with Anthony Clare, Professor of Clinical Psychiatry at Trinity College, Dublin, Peter White contributed the section on Psychological medicine in the medical textbook that is likely to be on the desk of every GP in the UK as it won the ‘Highly Commended’ British Medical Association Award (Clinical Medicine: Kumar and Clark, 2004, 5th edition: published by Saunders: ISBN 0 7020 25798). It is promoted as “one of the most highly respected textbooks of medicine in the world. It is used by medical students and practising doctors, as well as by many other health professionals. It has been translated into several languages”. One of the editors is Parveen Kumar, Professor of Clinical Medical Education at Barts and The London, Queen Mary School of Medicine (ie. the same institution as Peter White).

    The entry for Myalgic Encephalomyelitis directs the reader to the entry for CFS, which in turn directs the reader to Section 21 (Psychological Medicine) where CFS/ME is listed under “Functional or Psychosomatic Disorders: Medically Unexplained Symptoms”. White and Clare assert that the psychiatric classification of these disorders is “somatoform disorder”, which the authors state were previously known as ‘all in the mind’, imaginary and malingering. White and Clare state that “CFS” has two classifications (ie. in the International Classification of Diseases): one as neurasthenia in the psychiatric section and the other as myalgic encephalomyelitis in the neurological section; perpetuating factors are said to include inactivity, avoidant behaviour and maladaptive illness beliefs (statements that are insupportable).”

    There is now an updated sixth edition Kumar and Clark’s book on ‘Clinical Medicine’. In this new book, Peter White has written, under the heading of “functional and psychosomatic illnesses”, in which he includes CFS, on p1282/box 22.7, that “dysfunctional beliefs and behaviour to be addressed by rehabilitation therapy CBT/GET to challenge unhelpful beliefs and change coping strategies. People should have GET for three months to reduce inactivity and improve fitness.”
  2. Robin

    Robin Guest

    Well, if Peter White ever needs an organ or stem cell transplant, I'm sure he'll have no problem if we all donate blood for his transfusion!
  3. Marylib

    Marylib Senior Member

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    I want Michael Moore to do a piece on this. I would like to see Wessley et al's response to receiving blood from a "malingering" patient with ME/CFS. Or maybe a big sloppy kiss (though it might be hard to find an ME/CFS patient willing to kiss them.)
  4. Robin

    Robin Guest

    If oral transmission was a certainty to cause symptoms, I'd be happy to lick Wessely's tonsils. If he had to spend a year, a month, even a week in the bodily hell that is my life it would be well worth it to take one for the team!
    Persimmon likes this.
  5. Koan

    Koan Be the change.

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    When all necessary viral ends are tied into nice, tidy little bows, that textbook must not be allowed to stand!

    Someone must be held accountable for that because undoing the damage will cost. A whateveryoucallit (argh!) must be printed by the publisher and sent to everyone with a copy of that text. All unsold books must be withdrawn from sale -- not so hard these days with JIT (just in time) publishing.

    New editions must contain something of the history, and name names, in order to mitigate the continued negative impact of old editions.

    I am outraged.

    ETA He said what?! Everything I read before what is in that odious text was erased from my brain. Reeves and White are an unholy duo.
  6. MEG

    MEG Senior Member

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    Psychiatric !*^%$#@(&

    Go Robin!!!!! I am going to be the first in line to give him a kidney or blood transfusion!!!!
  7. Dolphin

    Dolphin Senior Member

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    Here is some information on Peter White's views in case anyone hasn't seen it.

    If you have sensitivies to chemicals, make sure to look at part (viii) including the references.
    ======

    This is a message I sent to Co-Cure around 2 years ago. It shows where Peter White comes from. Imagine having consensus workshops with him involved! That looks like what the CDC want to do. It appears, they could only go one way.

    ======


    I previously highlighted some points made by the Association of
    British Neurologists during the NICE process:

    http://tinyurl.com/2mjgh2 i.e.
    http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0708D&L=CO-CURE&P=R2119&I=-3

    and highlighted that one can read further submissions at:

    "Chronic fatigue syndrome / Myalgic encephalomyelitis: stakeholders
    comments and GDG responses":
    http://guidance.nice.org.uk/page.aspx?o=449805
    [AOL: <a href="http://guidance.nice.org.uk/page.aspx?o=449805">Here</a>]


    However this is a huge mass of information and going back and
    comparing it to the original is a lot of work. So I imagine most
    people will not do it.


    So I thought I'd highlight some comments by St Bartholomew's Hospital
    Chronic Fatigue Services. I have done this on a couple of UK lists
    and people have been fascinated by what was said.


    St Bartholomew's Hospital is often shortened to Barts - this is not a
    derogatory abbreviation.


    The Barts service is led by the psychiatrist, Prof. Peter White.
    Peter White is a major person in the CFS world. He has done much work
    in the US in recent years including with the CDC so I thought people
    around the world might be interested in some of the points they made.


    I have not put comments so people can judge the comments themselves.


    Bye,


    Tom Kindlon

    ==========================

    (i) On Disability aids and equipment:

    [TK: A blue badge is a disabled parking badge to allow somebody park
    in a disabled parking space]

    Draft text:
    6.3.6.8 For adults and children with moderate or severe symptoms,
    provision of equipment and adaptations (for example, a wheelchair,
    blue badge or stairlift) to allow individuals to improve their
    independence and quality of life should be considered, if
    appropriate and as part of an overall management plan.

    SH St Bartholomew's Hospital Chronic Fatigue Services
    69 FULL 183 6.3.6.8
    "…equipment and adaptations (for
    example, a wheelchair, blue badge or
    stairlift)…"
    We disagree with this recommendation.
    Why should someone who is only
    moderately disabled require any such
    equipment? Where is the warning about
    dependence being encouraged and
    expectation of recovery being damaged
    by the message that is given in this
    intervention? We are in no doubt that it
    is a powerful message for a therapist of
    any sort to provide such aids. Our view
    is that such aids should only be
    considered by a multi-disciplinary
    therapeutic team as a whole, and
    usually in the context of providing a
    temporary means for a patient to
    ncrease their activity levels. An
    example would be providing a wheelchair
    for a bed-bound patient as part of
    their active rehabilitation programme. In
    our opinion, such aids should never be
    seen as a permanent solution to
    disability in this illness.


    NICE:
    We have recommended such
    equipment only if appropriate, and
    as part of an overall management
    plan and as an aid to independence.
    -----------

    Another quote along these lines:
    In reply to (Draft NICE text):
    1.3.1.8 For adults and children with moderate or severe symptoms,
    provision of equipment and adaptations (for example, a wheelchair,
    blue badge or stairlift) to allow individuals to improve their
    independence and quality of life should be considered, if
    appropriate and as part of an overall management plan.

    Barts wrote:
    Equipment and aids may hinder
    recovery as much as help it, and their
    prescription needs to consider both
    outcomes. We believe disability aids
    can help a patient towards recovery if
    their use encourages a widening and
    increase in their own activities, on a
    temporary basis, as a means of
    supporting a rehabilitation
    programme. They should rarely if
    ever be used for patients with only
    moderate disabilities.


    =====================


    (ii) On making information available on audio tape:

    SH St Bartholomew's Hospital Chronic Fatigue Services
    91 FULL 260 13

    Why should anyone with concentration difficulties find it easier to
    use audiovisual technology, which by your implication does not involve
    reading, more than reading itself (from either a book or computer
    screen)? Would it not be more effective to negotiate a simple graded
    programme of reading to help such a patient improve their reading
    ability, along with helping to improve their cognitive capacity
    through improving sleep and mood? What might be effective advice is to
    encourage the use of voice-activated software in someone who finds
    typing using a keyboard physical tiring, and needs to meet a deadline
    in their job or studies.


    Noted and removed – we consider that the text on including cognitive
    activities addresses these points.

    ================================

    (iii) On Weight loss in CFS/ME

    SH St Bartholomew's Hospital Chronic Fatigue Services
    88 FULL 248 6.5.5.2

    "Adults or children who experience
    severe weight loss should be referred
    to a dietitian for assessment, advice
    and nutritional support, which in
    extreme cases may include tube
    feeding."
    This is alarming and arguably negligent
    advice, which we strongly condemn.
    Any patient who experiences severe
    weight loss should be referred for
    appropriate assessment, not by a
    dietician alone, but by an appropriate
    specialist doctor (gastro-enterologist or
    psychiatrist) so a diagnosis can be
    made. We do not know of any reliable
    or replicated evidence that severe
    weight loss, in deed any weight loss at
    all, is a part of CFS/ME. Whereas we
    are aware of patients referred to our
    service with a diagnostic label of
    CFS/ME who on assessment have an
    alternative diagnosis, most commonly
    anorexia nervosa (sometimes
    presenting atypically without a body
    image disorder, which is well described
    in the anorexia nervosa literature), but,
    on occasion, malabsorption.

    NICE
    This recommendation has been
    removed.

    ========================================

    (iv) On Neuropathetic pain and Gabapentin:

    Draft Text:
    Gabapentin: The GDG noted that the wider survey was supportive of
    gabapentin in severe CFS/ME sufferers. The GDG was uncertain why
    this was the case. Because of its side effects, the GDG did not
    think that it should be used for mild pain but there will be certain
    individual cases when it might be considered despite a relatively
    high side-effect profile. The GDG decided not to make a positive or
    negative recommendation.

    ----------
    SH St Bartholomew's Hospital Chronic Fatigue Services
    87 FULL 233 1

    The GDG noted the survey support of
    the use of gabapentin in CFS/ME.
    However this drug is licensed for
    neuropathic pain. There is no evidence
    that patients with CFS/ME have a
    neuropathy and we would not
    recommend the use of this drug,
    particularly as one of its significant side
    effects is sedation, without empirical
    evidence for its support, which is
    currently lacking. It would be surprising
    if NICE gave guidance based on
    anecdotal evidence, an inaccurate
    indication, for a drug, which has
    significant adverse effects.


    NICE Response:
    Noted and we have recommended
    that people should be referred for
    specialist pain management if
    appropriate.

    ====================
    (v) Bowel symptoms and CFS/ME:

    Draft text:
    6.4.5.5 Prescribing of gut anti-spasmodics (such as mebeverine,
    alverine, and peppermint oil) should be considered for adults and
    children with bowel symptoms, such as cramp or bloating.

    SH St Bartholomew's Hospital Chronic Fatigue Services
    85 FULL 229 6.4.5.5
    "..gut anti-spasmodics.." are not
    treatments of CFS/ME since bowel
    symptoms are not part of CFS/ME. You
    should make it explicit that this
    treatment might be indicated for the
    treatment of IBS, if present comorbidly.
    Alternatively, and perhaps more wisely,
    you could suggest that IBS, if present,
    should be treated in the light of the best
    available evidence, and refer readers to
    appropriate guidance, which may or
    may not include considering
    antispasmodics as the treatment of
    choice for "bloating", although we would
    doubt it. You do mention IBS on page
    233, line 12.

    NICE:
    We have revised this
    recommendation and referred to the
    NICE IBS guideline – currently in
    development.

    =====================
    (vi) On Drug Intolerance and CFS/ME:


    Draft text:
    6.4.5.2 Adults and children with CFS/ME may experience greater
    intolerance and more severe adverse/side effects from drug
    treatment. Where appropriate, drug treatment used for symptom
    control should therefore be initiated at a lower dose than in usual
    clinical practice, and should be increased gradually.

    SH St Bartholomew's Hospital Chronic FatigueServices
    84 FULL 229 6.4.5.2
    We are not aware of any reliable and
    replicated evidence to support the
    statement that patients with CFS/ME
    are more intolerant or have more
    severe adverse effects; and "more
    intolerant" than whom? We do not
    agree that drug treatment should be
    initiated at lower dose than in usual
    clinical practice. This possible myth is
    repeated within the guideline at various
    points, and is important since it may
    make doctors more likely to prescribe
    sub-therapeutic doses. If you are going
    to keep this included, you should make
    sure that the anecdotal level of
    evidence for this is explicitly stated. We
    would suggest changing to "..drug
    treatment at lower doses may be
    considered…."

    =============================

    (vii) On Recovery times:

    Draft text:
    6.3.6.16 When planning a programme of GET the healthcare
    professional should:
    • discuss with the patient ultimate goals with the patient that are
    important and relevant to them. This may be, for example a 2 x 15
    minutes daily brisk walk to the shop, a return to previous active
    hobby such as cycling or gardening, or, if more severely affected,
    sitting up in bed to eat a meal.
    • recognise that it may take weeks, months, or even years to achieve
    goals, and it is essential that the therapy
    structure takes this pace of progress into account.

    SH St Bartholomew's Hospital Chronic Fatigue Services
    75 FULL 188 6.3.6.16

    These goals should include recovery,
    not just exercise and activity goals.
    If it takes "years" to achieve goals, then
    either the goals are wrong or the
    therapy is wrong. What other treatment
    in medicine would take years to work?
    We suggest "or even years" is deleted.
    If a therapy is not helping within a few
    months, either the therapy or the
    diagnosis or both should be reviewed
    and changes considered. We suggest
    that this advice is pertinent to all
    treatment approaches, not just for GET.

    NICE:
    The statistics indicate that total
    recovery is relatively rare and the
    GDG felt that to include recovery as
    a goal may lead to disappointment.
    As the goals are patient derived
    they may be long term. Interim
    goals would be developed.

    ================================

    (viii) on Multiple Chemical Sensitivity (MCS):

    Draft text (this is in a section on severe CFS/ME):
    "Family life may also be affected as people with severe CFS/ME are
    often sensitive to sounds and smell. For example, the person may be
    unable to tolerate light or cleaning products whilst they are often
    unable to control their body temperature, thus impacting on the living
    environment."
    and
    "..Those caring for an individual with severe CFS/ME professionally
    need an understanding of the illness and the needs of the individual
    to meet the challenges of, for example, cooking or cleaning for an
    individual who is sensitive to the smell of food or of cleaning
    materials or bathing an individual who finds touch painful. Therefore
    proper training should be given about the condition with the
    involvement of the patient for any particular problems."


    SH St Bartholomew's Hospital Chronic Fatigue Services
    92 FULL 261 3 +

    A patient with increased sensitivity to the smell of various
    chemicals may be suffering from multiple chemical sensitivity, but
    you would be making a dubious assumption to state this is part of or
    even characteristic of severely disabling CFS/ME. MCS is a
    potentially remediable condition through a graded exposure programme
    on the basis that the underlying pathophysiology is a conditioned
    response. It should not be considered as a part of CFS/ME.

    (See: Staudenmayer H, Binkley KE, Leznoff A, Phillips S. Idiopathic
    environmental intolerance: Part 2: A causation analysis applying
    Bradford Hill's criteria to the psychogenic theory. Toxicological
    Reviews 2003;22:247-61.

    Bornschein S, Hausteiner C, Zilker T, Forstl H. Van den Bergh O,
    Devriese S, Winters W, Veulemans H, Nemery B, Eelen P, Van de
    Woestijne KP. Acquiring symptoms in response to odors: a learning
    perspective on multiple chemical sensitivity. Annals of the New York
    Academy of Sciences 2001;933:278-90.

    Otto T, Giardino ND. Pavlovian conditioning of emotional responses
    to olfactory and contextual stimuli: a potential model for the
    development and expression of chemical intolerance. Annals of the
    New York Academy of Sciences 2001;933:291-309.)

    NICE response:
    This section has been removed.

    ====================================

    (ix) Point about whether CFS/ME is an incurable chronic disease or not:

    Draft text:
    1.3.1.6 The objectives of the individualised programme are to:
    • sustain or gradually extend, if possible, the person's physical,
    emotional and cognitive capacity
    • manage the physical and emotional impact of their symptoms.


    SH St Bartholomew's Hospital Chronic Fatigue Services
    103 NICE 18 1.3.1.6

    The emphasis here would be
    appropriate for someone suffering
    from an incurable chronic disease,
    which CFS/ME is most often not. The
    aim of an individualised programme
    should be to help the patient recover,
    or, if this is not possible, to help the
    patient improve their quality of life and
    minimise disability. The expectation of
    both the patient and the practitioner is
    vitally important in determining
    outcome, and these current aims are
    too conservative, and inconsistent
    with the best available evidence.

    NICE Response:
    The Guideline Development Group had
    to balance a positive outlook with the
    recognition that some people will not
    recover.

    =======================

    (x) On liasing with employers:

    Draft text:
    • Healthcare professionals should be proactive in advising about
    fitness for work and education, and recommend adjustments or
    adaptations to work or studies to enable rehabilitation of adults and
    children with CFS/ME. This includes liasing (with the person's
    consent) with employers, education providers and support services e.g:
    occupational health services


    St Bartholomew's Hospital Chronic Fatigue Services
    FULL 23 22 thru 27
    Sometimes acting as an intermediary
    between patient and employer may
    encourage dependence rather than
    fostering recovery via empowerment.
    We therefore suggest adding the
    word "may" on line 24 to read, "This
    may include…"

    ==============================
  8. Jerry S

    Jerry S Senior Member

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    Chicago
    I just can't help thinking, "sadism by proxy."
  9. _Kim_

    _Kim_ Guest

    Brilliant Jerry!
  10. Marylib

    Marylib Senior Member

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    New Zealand
    Yes, I think most Americans have no idea what has been forced on ME/CFS sufferers in the UK. It is criminal.
  11. Hysterical Woman

    Hysterical Woman Senior Member

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    Sadism by proxy

    Brilliant, Jerry, just fricking brilliant!
  12. Yup, and the fact these acts of medical/psychological terror are carried out by self proclaimed experts (Psychiatrists) in 'CFS/ME' who sit on expert panel groups that advise the government into not funding bio-medical research due to a 70-80% cure rate they claim happens by altering their patients beliefs via CBT and exercise is also scary.

    Most scary is they are employed at the best hospitals in England, the highest performing, best equipped, most staffed, best trained.

    Yet they do this to us. :mad: As a patient, you're ironically safer in a back-water basic hospital with no knowledge on ME CFS at all, rather than being sectioned (arrested) or co-erced into going to a top University hospital - only to find they refuse to accept the diagnosis of ME CFS and lock the door behind you. :eek: As I found out, you can trust no one.

    These institutions can do incredible things, they save lives with the most diverse unique (and costly) scientific methods possible - all for free (socialised health care system) yet ruin their reputation by being so cruel to a section of the community they despise with such fervour. Only a socialised health care system can do this - because they are the law, they are the state.

    No NHS doctor is employed directly by a hospital, legally - they are a guest.
    (This had wide ranging legal ramifications). Basically it's impossible to sue a doctor - you have to sue the hospital trust. Impossible to do this.

    The trust is a sub-title of the the government. Patients are powerless - and hence Sophia Mirza's tormentors were found not to be responsible for her death when they were reported to the General Medical Council (GMC) who watch over the behaviour of medics.

    The GMC is of course, run by medics. The police complaints comission is run by the police. Nothing is impartial, or independent. It's arranged, and 'unfortunate' situations like Sophia Mirza's are simply, 'managed'.

    In these situations, American health care systems are better because it would be a private hospital, and private doctors involved in this womans care, not the government. They would have ended up in court explaining to a judge. Doctors here don't go to court, they (at worst) explain themselves to a panel of medical professionals at the General Medical Council - who all have vested interests in supporting various parties - as they are members of the pharmaceutical industry, psychiatric profession etc. And thus they do an 'OJ' and let the guilty walk, citing 'no evidence'.

    This is how ME CFS has been managed for 20+ years. They simply refuse (physically) to accept documents/evidence. No one can make them, they are the law.
    Sort of communism - light.
  13. Min

    Min Senior Member

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    UK
    Prof White works for the insurance firm Swiss Re



    As reported by Margaret Williams, he was interviewed for the BBC Radio 4 broadcast on You and Yours about ME/CFS that was transmitted on Monday 5th November 2007

    When transmission ended, Dr Weir turned to Professor White and said (words to the effect of): Peter, Im glad to hear you state ME is not a psychological disorder. This must mean that things have moved on from illness beliefs, whereupon Professor Whites immediate response was (verbatim): Oh no, it IS an abnormal illness belief.
  14. Jerry S

    Jerry S Senior Member

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    Permission to repost

    Anyone has my permission to use the phrase, "sadism by proxy" without attribution.

    Only in reference to appropriate psychiatrists, please.
  15. Aftermath

    Aftermath Guest

    The UK Model

    It is reasons like this why any PWC who supports a government run health-care system like they have in Europe and the rest of the "civilized world" is out of his/her mind.

    Barry can talk all he wants about being taken out of context--but you can listen to his words for yourself about the eventual goal being a "single payer" system. The single payer system is one where it is illegal to pay a doctor outside of the government's system. In other words, the UK, where psychobabble is the law of the land, and physicians with dissenting opinions are now allowed to practice.

    We can all see just how great that the government has done on the research end.

    What do you get when you have an entity that can go on forever without having to make a profit and/or be successful without going out of business? You have Bill Reeves and the CDC.

    Our biggest discovery thus far has come from a private entity in the WPI, with a budget far smaller than the CDC's.

    Big government takeover of healthcare=bad news for us.
  16. greybeh

    greybeh Guest

    Marylib, people don't know what's happening overseas. I was shocked when I learned. Today, I learned it's not just the UK.

    The thought terrifies me. I am trying to speak out to help people realize what's happening. I've started with another online support group that I'm involved in (PatientsLikeMe).
  17. valia

    valia Senior Member

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    UK
    Hello All,

    I am not one for posting normally, I personally don’t usually have anything valuable to say, although I visit here everyday and have found not only valuable information but a great community.

    However, today I felt I had to, after seeing 2 videos on Youtube by a wonderfully talented young man, I don’t know who he is, but he tells the story of ME in the UK as well as his own heart wrenching story (He himself was locked in a psychiatric hospital for 2 months). His pain and suffering is.........well, I just can’t find the words.

    Please, watch them, he so deserves to be heard, I just know that I was left not only praying for a cure as I usually do, but more than anything wanting justice for this young man and all ME sufferers.


    Phone call for Mengele's twin (Part 1 of 2)

    http://www.youtube.com/watch?v=WHt4YR8mbpg

    http://www.youtube.com/watch?v=QnVaGEj_Fxo&feature=channel






    Sorry, forgot to say I am from the UK
  18. bananaman

    bananaman

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    Peter White is advising Bill Reeves to start CBT & GET Trials in the USA at the same time that Belgium based Doctors are writing reviews on these two ugly sisters of treatments describing them as both unethical and potentially harmful!
    -----------------------------------------------------------------------------------------------------------------------
    http://www.ncbi.nlm.nih.gov/pubmed/...med_ResultsPanel.Pubmed_RVDocSum&ordinalpos=2

    A Review on Cognitive Behavorial Therapy (CBT) and Graded Exercise Therapy (GET) in Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS)


    Frank N.M. Twisk 1 and Michael Maes 2

    1 ME-de-patinten Foundation, Limmen, the Netherlands

    2 Clinical Research Center for Mental Health (CRC-MH), Antwerp, Belgium.

    Abstract:

    Benign Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) is a debilitating disease which, despite numerous biological abnormalities has remained highly controversial.

    Notwithstanding the medical pathogenesis of ME/CFS, the (bio)psychosocial model is adopted by many governmental organizations and medical professionals to legitimize the combination of Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET) for ME/CFS.

    Justified by this model CBT and GET aim at eliminating presumed psychogenic and socially induced maintaining factors and reversing deconditioning, respectively.

    In this review we invalidate the (bio)psychosocial model for ME/CFS and demonstrate that the success claim for CBT/GET to treat ME/CFS is unjust. CBT/ GET is not only hardly more effective than non-interventions or standard medical care, but many patients report that the therapy had affected them adversely, the majority of them even reporting substantial deterioration.

    Moreover, this review shows that exertion and thus GET most likely have a negative impact on many ME/CFS patients.

    Exertion induces post-exertional malaise with a decreased physical performance/ aerobic capacity, increased muscoskeletal pain, neurocognitive impairment, “fatigue”, and weakness, and a long lasting “recovery” time.

    This can be explained by findings that exertion may amplify pre-existing pathophysiological abnormalities underpinning ME/CFS, such as inflammation, immune dysfunction, oxidative and nitrosative stress, channelopathy, defective stress response mechanisms and a hypoactive hypothalamic-pituitary-adrenal axis.

    We conclude that it is unethical to treat patients with ME/CFS with ineffective, non-evidence-based and potentially harmful “rehabilitation therapies”, such as CBT/GET.

    The full-text version of the first article can be obtained per individual through the website of Neuroendocrinol Lett. http://node.nel.edu/?node_id=8918 The full article is available from here -

    published by Neuroendocrinology Letters Volume 30 No. 3 2009 (http://www.ijcem.com)
  19. JayS

    JayS

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    Well, I knew that Peter White was down on the Canadian Guidelines, and, specifically, tilt-table testing

    http://www.bbc.co.uk/radio4/youandyours/transcripts_2007_45_mon_03.shtml

    but the recomendation against the use of Neurontin/Gabapentin is new to me. Thanks, Tom.

    I've had a feeling that given Reeves' desire to move CFS towards the UK model in terms of it being integrated into the national health care system, that there were some fairly sinister potential ramifications for many of us. Based on his prior remarks, he obviously wanted to see this happen before the current legislation got to the point it has. I do wonder what the ramifications are for us. Since it's unlikely he'll be removed from the CDC, something tells me that even if he's removed from his current post, he's going to continue working towards this goal. That wouldn't be good. I wonder, not having read the legislation, if there is language in there that can be interpreted in a way that will allow him to move towards his goal.
  20. Dolphin

    Dolphin Senior Member

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    And remember: NICE guidelines are fairly prescriptive - if they're not in there, it's hard for doctors to prescribe them. What he was doing was not just objecting for himself but making it more difficult for patients around the UK to get the drugs. This holds true for the other points as well.

    And if one reads the full thing, one can see how much effort was putting in to blocking any supports NICE was offering patients apart from CBT and GET - he really put in a lot of thought and effort (more than anyone else in the UK, much more than Kings where Simon Wessely is based) to block what was provisionally being offered to patients.

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