1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Join the National PR Campaign for ME: Power to the Patient (P2tP)
Have you had enough of all the neglect and abuse of ME/CFS patients? Gabby Klein says now is the time for a National PR Campaign for ME/CFS to impress a change. Join the Patient Revolution to restore power to ME patients ...
Discuss the article on the Forums.

101 Good Reasons : Why it is wrong to provide CBT and GET to ME Patients. Part 1

Discussion in 'General ME/CFS News' started by shrewsbury, Mar 2, 2010.

  1. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    55
    Greg crowhurst posted this to co-cure today

    101 Good Reasons :Why it is wrong to provide CBT and GET to ME Patients.

    Greg Crowhurst 2nd March 2010 (With special thanks to Clara Valverde)


    1. Malcolm Hooper

    CBT is based on the idea that somatoform disorders are maintained by
    abnormal or unhelpful illness beliefs which lead to abnormal or
    unhelpful behaviour. The first requirement for a somatoform diagnosis
    is that there be no physical cause for the symptoms. This is not the
    case in ME/CFS

    http://www.investinme.org/Article-361 Statements of Concern - CBT-GET JR Feb09.htm


    2. Dr William Weir

    Two forms of treatmentare CBT and GET CBT is a psychological
    treatment. Its application in what is certainly an organic disorder
    is basically irrational....

    Its application is counter-intuitive, particularly when one of the
    most debilitating and well recognised symptoms of ME/CFS is
    post-exertional malaise which can put some patients in bed for days
    after relatively trivial exertion
    http://www.investinme.org/Article-361 Statements of Concern - CBT-GET JR Feb09.htm

    3. Dr Irving Spurr

    I consider that the recommendation of CBT and GET as blanket
    treatments of clinically excellent first choice is extremely
    dangerous to patients.

    http://www.investinme.org/Article-361 Statements of Concern - CBT-GET JR Feb09.htm


    4.Dr Eleanor Stein

    A close read of the literature reveals that none of the core symptoms
    of ME/CFS improve with CBT or GET.

    http://www.investinme.org/Article-361 Statements of Concern - CBT-GET JR Feb09.htm


    5. Dr Byron Hyde

    (Graded exercise therapy) is not therapy it is simply the
    enforcement of an opinion rather than a treatment based upon any
    scientific examination of a patients pathology and treatment of that
    pathology.

    ..Graded exercise programmes may be significantly dangerous to many
    of these ME patients
    http://www.investinme.org/Article-361 Statements of Concern - CBT-GET JR Feb09.htm

    6. Dr Derek Enlander

    (The GDG) produced a Guideline that recommends CBT and GET as the
    prime treatment yet there is in fact published evidence of
    contra-indication / potential harm with GET.

    http://www.investinme.org/Article-361 Statements of Concern - CBT-GET JR Feb09.htm


    7.Dr Bruce Carruthers

    It is when a therapy such as CBT begins to interfere with the natural
    warning systems, of which both pain and fatigue are a part, that the
    increased risks arise. In particular, musculo-skeletal pain and
    fatigue have essential function in modulating activity when the body
    is in a state of disease as in ME/CFS.

    NICE, however, recommends over-riding this essential safety-net, thus
    the risk of serious harm is increased in this situation of
    simultaneous activity and symptoms denial. This will become a more
    serious risk in patients with more severe ME/CFS.
    http://www.investinme.org/Article-361 Statements of Concern - CBT-GET JR Feb09.htm

    8. Dr Neil Abbot

    There have been only five trials of CBT with a validity score greater
    than 10, one of which was negative for the intervention; and only
    three RCTs of GET with a validity score greater than 10. ..Until the
    limitations of the evidence base for CBT are recognised, there is a
    risk that psychological treatments in the NHS will be guided by
    research that is not relevant to actual clinical practice and is less
    robust than is claimed.

    http://www.investinme.org/Article-361 Statements of Concern - CBT-GET JR Feb09.htm

    9. Dr Charles Shepherd

    .In some cases people are now being given little more than a
    therapist-led management assessment followed by an offer of CBT
    and/or GET.

    http://www.investinme.org/Article-361 Statements of Concern - CBT-GET JR Feb09.htm


    10. Susanna Agardy

    Studies of GET do not ensure that the participants included suffer
    from serious symptoms of ME/CFS such as post-exertional malaise and
    mostly use loose, fatigue-based criteria, allowing mixed groups of
    fatigued participants to be included. ... Recommendations for GET
    ignore the risk of harm indicated by other research and the frequent
    worsening of symptoms following exercise reported by people with
    ME/CFS.
    http://sacfs.asn.au/news/2009/12/12_10_exercise_guidance_note.htm


    11. JK Rowbery

    There is real concern that not only is CBT (Cognitive Behavioural
    Therapy, the other treatment provided by the NHS) ineffective, but
    that GET is potentially harmful to patients with ME/CFS. It is known
    that GET may leave up to 82% of ME/CFS patients who have undertaken it
    irreversibly house or bed-bound.

    http://www.jkrowbory.co.uk/about-me/

    12.A Chaudhuri

    "Whilst no one would question that physical exercise improves quality
    of life both in health and diseases in general, recommending graded
    exercise as a specific prescription for complex disorders like
    fibromyalgia and CFS is a gross oversimplication of science." - A
    Chaudhuri "Missing data and compliance with oversimplification" -
    letter to the British Medical Journal by A Chaudhuri, Clinical Senior
    Lecturer in Neurology at the University of Glasgow, 1 August 2002,
    commenting on the study "..Prescribed exercise in people with
    fibromyalgia: parallel group randomised controlled trial...",

    Richards SC, Scott DL., published in BMJ 2002 Jul 27;325(7357)

    13. Canberra Fibromyalgia and CFS

    Graded exercise therapy (GE or GET) - sometimes referred to as "graded
    aerobic exercise" (GAE) - is often included as part of a cognitive
    behavioural therapy (CBT) program. It is recommended by those who
    follow the biopsychosocial model. The fundamental philosophy
    underlying this kind of treatment is that deconditioning, depression
    and believing one is ill are at the root of CFS.
    http://www.mecfscanberra.org.au/docs/pacing.htm

    14. Carruthers et al.

    The question arises whether a formal CBT or GET program adds anything
    to what is available in the ordinary medical setting. A well informed
    physician empowers the patient by respecting their experiences,
    counsels the patients in coping strategies, and helps them achieve
    optimal exercise and activity levels within their limits in a common
    sense, non-ideological manner, which is not tied to deadlines or other
    hidden agenda.
    Physicians must take as much care in prescribing appropriate exercise
    as in prescribing medications to ME/CFS patients
    This excerpt is taken from pages 46-49 of the article "Myalgic
    Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case
    Definition, Diagnostic and Treatment Protocols" which appeared in the
    Journal of Chronic Fatigue Syndrome, Vol. 11(1) 2003, pp. 7-115,
    written by Carruthers et al.
    http://cfids-cab.org/MESA/ccpc-1.html


    15. Frank N.M. Twisk and Michael Maes

    ME/CFS is considered to be a rather harmless condition by most
    physicians, but patients with ME/CFS are often more functionally
    impaired than those suffering from type 2 diabetes, congestive heart
    failure, multiple sclerosis, and end-stage renal disease
    a) the evidence-based success claim for CBT/GET is unjust, since the
    evidence base is lacking and CBT/GET is not significantly more
    effective than usual care; and
    b) the exertion, and thus GET, can have numerous potential damaging
    physical effects on ME/CFS patients.
    The (bio)psychosocial model (CBT/GET) has been invalidated by research

    A review on cognitive behavorial therapy (CBT) and graded exercise
    therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue
    syndrome (CFS): CBT/GET is not only ineffective and not
    evidence-based, but also potentially harmful for many patients with
    ME/CFS

    Frank N.M. Twisk and Michael Maes
    http://forums.aboutmecfs.org/showthread.php?947-CBT-GET-potentially-harmful-to-ME-CFS-patients


    16. Horace Reid

    In 2006 Chalder and others claimed that Cognitive behavioural therapy
    and graded exercise therapy have been shown to be effective in
    restoring the ability to work in those who are currently absent from
    work.[10] In 2007 NICE demurred: There is a lack of studies in this
    area More information is needed on functional outcomes such as
    return to work or education. (CG53 p 61)

    Santhouse et al. describe CBT and GET as treatments for CFS/ME. As
    defined by NICE they are much less than that. They are merely
    techniques to help patients cope with an intractable and so far
    untreatable condition. In the words of NICE: The GDG did not regard
    CBT or other behavioural therapies as curative or directed at the
    underlying disease process, which remains unknown. Rather, such
    interventions can help some patients cope with the condition"; (CG53 p
    252).

    Horace Reid http://niceguidelines.blogspot.com/

    17. Margaret Williams

    Not only did NICE ignore the fact that the recommended interventions
    (CBT/GET) are not effective, it ignored the evidence that subsuming
    all states of chronic fatigue into one functional somatic syndrome
    is contra-indicated, as well as evidence that most of the randomised
    controlled trials (RCTs) on CBT on which the GDG relied are seriously
    flawed

    In most of the ten trials of CBT upon which the GDG relied, the
    methodology does not meet even the most minimally acceptable standards
    The trials used give a total of 480 patients out of an alleged UK
    total of 240,000 patients and is insufficient data upon which to
    recommend a national strategy

    Patients with pre-existing psychiatric co-morbidity were not excluded
    from the studies relied upon

    Nowhere is there any evidence that patients fully recovered
    The behavioural model of CFS/ME offers relatively little; it is
    supported only by researchers with a professional interest in
    psychosocial aspects of illness. This model dominates the NICE
    management regime

    There is no credible evidence to support the GDGs claim that the best
    practice evidence-base is the nationwide implementation of CBT/GET for
    patients with CFS/ME.

    Background information and illustrations of evidence that CBT cannot
    improve ME/CFS which NICE disregarded Margaret Williams25thJuly
    2008http://www.meactionuk.org.uk/Background_Information_re_CBT.htm

    18. ME Research UK

    . the management strategies making up the bulk of the treatments on
    offer by the National Health Service in the UK CBT and Graded
    Exercise seem absurd to patients and carers given the problem on
    the ground.

    ME/CFS Research: What do patients want? Why isnt it happening?
    http://www.meresearch.org.uk/information/publications/rsmtalk.html

    19. NICEGuidelinesblog

    A thorough analysis of the current medical scientific literature and
    international patient surveys,..shows that CBT/GET is not only
    ineffective for the majority of the ME/CFS patients, but also
    potentially very harmful.

    Scientific studies and large-scaled patient surveys have shown that
    treatments with CBT/GET seriously deteriorate the condition of many
    patients with ME/CFS.

    http://niceguidelines.blogspot.com/2009/11/get-and-cbt-harmful-for-mecfs.html

    20. 25% Severe ME Group

    ME/CFS is not cured by Cognitive Behavioural Therapy (CBT) and
    Graded Exercise (GET). CBT and GET are not accepted in the British
    Formulary for ME and therefore cannot be considered automatically to
    be within the legal framework for treatment, especially for the
    severely affected (25% Group 2005) CBT and GET are potentially harmful
    to anyone with neurological ME.

    25% Group :25% ME Group Response to the DWP Guidance Document on CFS/ME
    APRIL 2006

    www.25megroup.org/.../25 Group response 6.04.06.doc

    21. Margaret Williams

    The UK definition of CBT is contained in the Chief Medical Officer's
    Working Group Report of January 2002: "Cognitive behavioural therapy
    is a tool for constructively modifying attitude and behaviour".

    The UK definition of GET is contained in the NHS Plus National
    Guideline on Occupational Aspects of CFS of October 2006: "GET
    involves structured activity management that aims for a gradual
    increase in aerobic activities".

    According to Cheney, aerobic exercise may kill the patient with
    (ME)CFS, so patients are rightly wary, because for almost 20 years
    Wessely School psychiatrists have claimed that ME does not exist
    except as an aberrant belief, and that "CFS" is a psychiatric disorder
    in which patients refuse to confront their "faulty illness beliefs"
    (ie. that they have a physical, not a mental, illness).

    Margaret Williams : Kilmas, Wessely and NICE , Redefining CBT ? Invest
    in ME ,http://www.investinme.org/Article-075 Margaret Williams Redefining CBT.htm

    22. Jodi Bassett

    No evidence exists which shows that cognitive behavioural therapy
    (CBT) or graded exercise therapy (GET) are appropriate, useful or safe
    treatments for Myalgic Encephalomyelitis (M.E.) patients. Studies
    involving miscellaneous psychiatric and non-psychiatric fatigue
    sufferers, and their response to these treatments, have no more
    relevance to M.E. sufferers than they do to diabetes patients, cancer
    patients, patients with multiple sclerosis or any other illness.

    Jodi Bassett The effects of CBT and GET on patients with M.E. -
    Condensed version
    www.hfme.org/CBT_and_GET/Effects_of_CBT_and_GET_Condensed.doc -

    23. Professor Malcolm Hooper

    (CBT, GET) :

    (i) is not remotely curative;

    (ii)modest gains may be transient and even illusory;

    (iii) these interventions are not the answer to ME/CFS;

    (iv)patients have a tendency to relapse; and

    (v)evidence from randomised trials bears no guarantee for treatment
    success

    ref: www.meactionuk.org.uk/Concerns_re_NICE_Draft.pdf).
    For a detailed review of Wessely School indoctrination of State
    agencies, and the impact of this on social and welfare policy, see
    www.meactionuk.org.uk/Proof_Positive.htm .
    Evidence submitted by Professor Malcolm Hooper (NICE 07)
    http://www.publications.parliament.uk/pa/cm200607/cmselect/cmhealth/503/503we79.htm


    24. Norfolk and Suffolk ME/CFS Service Development


    Latest scientific studies find GET and CBT ineffective and harmful
    The two therapies which the NHS here in the UK remains committed to
    (under the 2007 NICE guidelines) for the clinical treatment of ME/CFS
    are Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy
    (CBT). NICE recommends CBT/GET as the first line of intervention and
    as key therapeutic strategies. Two recent scientific reviews of CBT
    and GET by medical research departments in the UK and Europe have
    condemned the use of both treatments in light of overwhelming evidence
    of the biological abnormalities present in ME/CFS.

    A collaborative review by Frank Twisk and Michael Maes from research
    centres in the Netherlands and Belgium says: "... we invalidate the
    (bio)psychosocial model for ME/CFS and demonstrate that the success
    claim for CBT/GET to treat ME/CFS is unjust." They go on to conclude:
    "it is unethical to treat patients with ME/CFS with ineffective,
    non-evidence-based and potentially harmful rehabilitation therapies,
    such as CBT/GET."

    This evidence brings into question a High Court judgement from the
    Judicial Review of the NICE Guidelines in March 2009 where the judge
    dismissed allegations that current therapies are harmful to some with
    myalgic encephalomyelitis. The latest scientific evidence clearly
    supports the defendants, ME sufferers Kevin Short from Norwich, and
    Douglas Fraser from London.

    The study on Graded Exercise Therapy by Pierce and Pierce (UK/Italy)
    concludes that "... it is difficult to conceive of a more
    inappropriate therapy for ME".

    Norfolk and Suffolk ME/CFS Service Development
    http://www.norfolkandsuffolk.me.uk/latest.html#cbtget


    25. Tom Kinlon

    Kinlon ( Do CBT and GET really work for Chronic Fatigue Syndrome?
    )pointed out that : Santhouse and colleagues (1) claim that
    treatments such as cognitive behavioural therapy (CBT) and graded
    exercise therapy (GET) have been shown to work in Chronic Fatigue
    Syndrome (CFS)/Myalgic Encephalomyelitis (ME).i However, what the
    literature actually shows is that such therapies have an effect, which
    is not necessarily the same thing as working: a meta-analysis
    calculated the average Cohens d effect size across various CBT and
    GET studies to be 0.48, which would generally be described as a small
    effect size

    http://www.bmj.com/cgi/eletters/340/feb11_1/c738


    26. Charles Shepherd

    It is disingenuous to claim that the use of CBT and GET in a group
    of patients who cannot normally travel to hospital to access them, is
    going to produce a 'dramatic recovery'. A considerable amount of
    accumulating patient evidence indicates that a significant proportion
    of people with ME/CFS find that the two behavioural treatments being
    recommended - cognitive behaviour therapy (CBT) and graded exercise
    therapy (GET) - are either ineffective (ie CBT) or harmful (ie GET).
    And the only research so far to investigate potential risk factors
    which are involved in the development of severe ME/CFS 4) has
    concluded that there is no evidence to implicate personality or
    neurotic traits.

    Do CBT and GET really work for Chronic Fatigue
    Syndrome?http://www.bmj.com/cgi/eletters/340/feb11_1/c738


    27. Northern Irish ME Association

    Current NHS recommended treatments for ME are ineffective, and often
    have serious side-effects. CBT and GET are unpopular with patients,
    and face client resistance. GET has complication rates ranging from
    37% - 50%, and should never have been approved for general use in the
    NHS. The use of psychotherapy as a first-line treatment perpetuates
    the myth that ME is a psychiatric illness.

    Northern Irish ME Association http://www.nimea.org/presentation1.html

    27. Kathelijne A Hugaerts

    In Belgium, during 5 years, the Belgian Government subsidized 5 CFS
    Reference Centers who treated patients solely with CBT/GET. They used
    the Fukuda criteria for selection. Every year, 1.5 million Euro was
    distributed to the 5 centers. This makes a total of 7.5 million Euro
    during 5 years. 800 patients were treated during this period.
    The Belgian Health Care Knowledge Centre (KCE) reviewed the result
    after 5 years (2009)( The KCE is a semi-governmental institution which
    produces analyses and studies in different research of health topics.

    Conclusion :

    patients feeling better : 6 %

    Patients feeling worse : 38 %

    Patients with no result, not better nor worse : the remaining 56 %

    The ultimate goal of the Reference Centers and their CBT/GET therapy
    was not met: NOT ONE PATIENT RESUMED WORK.

    This confirms that CBT/GET is ineffectively and possibly harmful.

    The Belgian experiment with CBT and GET
    http://www.bmj.com/cgi/eletters/340/feb11_1/c738


    28. Vance Spence

    In the context of ME/CFS, cognitivebehavioural approaches are not
    evidence-based to a level where they can be claimed to be specific
    treatments an unsurprising observation given that this syndrome
    diagnosis delivers a heterogeneous population widely believed to
    contain distinct clinical sub-groups (15). The systematic review
    underpinning NICE Guideline 53 found 10 randomized clinical trials on
    adults, 3 of these negative with the remainder showing mild to modest
    positive, though non- curative, results. Recent overviews have
    confirmed this; a recent Cochrane review (16) found 15 studies of CBT
    (including controlled clinical trials) for ME/CFS and took a more
    cautious view of the evidence and its limitations than the authors of
    the BMJ Editorial, as did a second recent review (17). This latter
    meta-analysis of 13 clinical trials (representing 1371 patients) found
    a very mixed bag of studies and reported an overall effect size that
    was smallmoderate by usual standards. Not for nothing did NICE
    Guideline 53 (Full Guidelines, section 6.3.8, pp 252) state that it
    did not regard CBT or other behavioural therapies as curative or
    directed at the underlying disease process.

    Not the Answer to the Biomedical Enigma
    http://www.bmj.com/cgi/eletters/340/feb11_1/c738

    29. Theresa L Heath

    I undertook the course of CBT offered by King's College Hospital with
    an open mind and a degree of optimism. I finished the course feeling
    depressed and like a failure. I now view CBT as akin to other quack
    'therapies' such as the Lightening Process. Your recovery is in your
    hands. If you don't improve, you're a failure. My therapist seemed
    genuinely confused when I did not make any improvement, and in fact
    suffered my worst relapse to date whilst endeavouring, against my
    better instincts, to adhere to their GET and sleep programme. I
    completed the course doing less physical activity than when I had
    started, and feeling guilty for my own 'unhelpful illness beliefs'.
    CBT and GET taking up valuable funds

    http://www.bmj.com/cgi/eletters/340/feb11_1/c738

    30. A.F. Andrew

    The basis of CBT for ME/CFS is fantastic. First, you blame the
    patient for his illness, and then when CBT doesn't cure him, you blame
    him for not being motivated. When I'm fit and well again, I will use
    this same principle when I see a patient with for example, a severe
    infection. If the antibiotic I have prescribed, doesn't solve the
    problem, then I will blame the patient. That the culture has shown
    that I prescribed the wrong treatment, is something I will ignore.

    I Adore CBT http://www.bmj.com/cgi/eletters/340/feb11_1/c738

    31. Richard Simpson

    To use NICE as an example for promoting the use of CBT and GET is
    risible and perverse, yet entirely predictable as biomedical research
    was ignored.The fact that 90% percent of ME support groups opposed
    NICE, the fact that ME patients took NICE to a judicial review in
    protest at their guidelines for ME, the fact that the only support
    that NICE could muster from those supposedly supporting the ME
    community were from organisations that accept government money and who
    themselves organise psychosocial conferences on ME all of this
    illustrates the lack of confidence which people with ME and their
    families have for NICE.

    Education the Key to http://www.bmj.com/cgi/eletters/340/feb11_1/c738

    32. Tanya Harrison

    ...any recommendation of CBT is based on flawed research, and goes
    against patient, and research, evidence:
    .any recommendation of GET is based on flawed research, and goes
    against patient, and research, evidence:
    There are multiple research papers showing that people with ME react
    adversely to exercise, and that increasing the cardiac rate, in
    particular, is extremely dangerous.
    ...patient evidence has shown that the majority of patients find GET
    unhelpful/harmful, with more than one patient survey showing over half
    of patients undertaking GET are made worse.

    BRAME: Personal Response from Tanya Harrison to NICE guideline on CFS/ME
    http://meagenda.wordpress.com/2007/...om-tanya-harrison-to-nice-guideline-on-cfsme/

    33. Linda Crowhurst

    What is omitted .is a warning of the very real dangers of imposing
    CBT and GET on very frail, vulnerable, ill people for whom exercise is
    contra-indicated and who suffer such devastating levels of cognitive
    dysfunction, as a result of their disease, that CBT becomes equally as
    dangerous as physical exercise. Mental exertion can have an equally
    disastrous impact upon the body , leading to an increase in already
    severe symptoms and a deterioration that can be permanent and may lead
    to death.

    Patients with severe ME do not want CBT and GET. What they want is
    biomedical research, significant biomedical testing and new tests and
    treatments available on the NHS. What they need is the psychiatric
    interpretation and powerful influence out of ME altogether. It is long
    overdue.

    A Dangerous Path to take
    http://www.bmj.com/cgi/eletters/340/feb11_1/c738#231540
     
  2. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    55
    101 Good Reasons : Why it is wrong to provide CBT and GET to ME Patients. Part 2

    34 Clara Valverde RN BSc and Dr Iaki Markez MD, PhD

    "CBT is being used in ME/CFS to forward governments' political and
    economic agendas...

    The proponents of CBT are mistaken when they define the patient with ME/CFS as
    someone whose way of thinking has to be changed. The sociological
    literature shows that people who have his illness, more than those
    with any other chronic illnesses , use, within their enormous
    limitations, their meagre energy to help others who are in the same
    situation as themselves.

    Despite of being mostly housebound, these patients dedicate their few
    able moments to support and encourage on, especially through internet,
    other patients with ME/CFS, and to share useful information for their
    self-care. They also work to try to improve the limited services
    provided for this illness.

    Not only is that a lesson in generosity for society, also all the
    knowledge on how to live
    with this new and difficult illness, which is on the increase, it is
    a great richness for all
    which this society cannot afford to waste".

    http://www.ome-aen.org/NORTE/35/NORTE_35_110_89-106.pdf


    35 Mary ann Spurgin, Ph.D.

    According to this thesis, some 2 million people across
    the country, people whom the book (A Review of Mark Demitrack's and
    Susan Abbey's Chronic Fatigue Syndrome: An Integrative Approach)
    theorizes were often of above-average intelligence before they got
    sick, developed a viral infection or some other bodily stressor and
    then, suddenly, their interpretation became skewed. Suddenly they
    began imagining that their symptoms continued beyond the acute,
    infectious stage and that those symptoms were severe. Such
    "attributions" and "cognitions" perpetuate the illness, as does the
    "attributional bias" of the physicians who take them seriously. The
    cure, according to the book, is Cognitive Behavioral Therapy, which
    alters the faulty cognitions and leads to new behaviors such as
    exercise. Exercise, according to the book, restores the patient to
    normal. Elegant prose and cool, clinical language provide the book
    with an aura of scientific objectivity. Careful examination, however,
    reveals the book to contain more value-laden rhetoric than logic, more religion
    than science.

    Critical Analysis of the CBT/GET Model www.cfids-cab.org/MESA/

    36 Drs. M.P. Koolhaas, H. de Boorder, Prof. dr. E. van Hoof

    A recent pilot study (Koolhaas, et al., 2008, Netherlands) reports that only
    2% of ME/CFS patients are cured by CBT, while the greatest share (38%) are
    adversely affected - most reporting substantial deterioration. It is
    especially notable that employment and education are negatively affected.
    This is in sharp contrast to the claims of psychiatrists and the Dutch
    Health Council that 70% of patients improve. Previous studies have also
    ignored or denied the negative affects of CBT on ME/CFS patients. The pilot
    study, recently published in the Dutch Medical Magazine, Medisch Contact,
    concludes that the previously reported claims of 70% improvement in ME/CFS
    patients receiving CBT are vastly overstated and misleading.

    Drs. M.P. Koolhaas, H. de Boorder, prof. dr. E. van Hoof
    Date: February 2008
    ISBN: 978-90-812658-1-2 Cognitieve gedragstherapie bij het chronische
    vermoeidheidssyndroom (ME/CVS)
    vanuit het perspectief van de patint

    37 Frank N.M. Twisk and Michael Maes

    "In this review we invalidate the (bio)psychosocial model for ME/CFS and dem-
    onstrate 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 nega-
    tive impact on many ME/CFS patients."


    Neuroendocrinol Lett 2009;30(3): 284299 .A review on cognitive
    behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic
    encephalomyelitis (ME) / chronic fatigue syndrome (CFS): CBT/GET is
    not only ineffective and not evidence-based, but also potentially
    harmful for many patients with ME/CFS. NEL300309R02 2009
    Neuroendocrinology Letters www.nel.edu

    38 Paul Moloney

    The supposedly sound evidence base for the effectiveness
    of the psychological therapies may be far more
    questionable than is widely supposed.

    The trouble with psychotherapy CoCure Monday, February 25, 2008
    Clinical Psychology Forum 162 - June 2006
    http://tinyurl.com/2yl9jj

    39 Boudewijn Van Houdenhove and Patrick Luyten

    In this issue of Patient Education and Counseling, two interesting
    papers challenge current evidence-based treatments of chronic fatigue
    syndrome (CFS). In the first study Goudsmit et al. [1] show that a
    brief multi-component programme aimed at helping CFS patients cope
    with their illness, may be as effective as cognitive behavior therapy
    (CBT). In the second study Jason et al. [2] demonstrate that CFS
    patients who carefully stayed within their 'energy envelope'
    (measured by a self-monitoring strategy) did better than patients who
    were less successful in keeping expended energy close to available
    energy a finding that challenges basic assumptions of graded
    exercise therapy (GET)

    1] Goudsmit EM, Ho-Yen Do, Dancey CP. Learning to cope with chronic
    illness. Efficacy of a multi-component treatment for people with
    chronic fatigue syndrome. Patient Educ. Couns. 2009;
    doi:10.1016/j.pec.2009.05.015.

    [2] Jason L, Benton M, Torres-Harding S, Muldowney K. The impact of
    energy modulation on physical functioning and fatigue severity among
    patients with ME/CFS. Patient Educ. Couns. 2009; doi:10.1016/j.pec.2009.02.015.


    Commentary
    Treatment of chronic fatigue syndrome: How to find a 'new equilibrium'?
    Journal: Patient Educ Couns. 2009 Sep 19

    40 Malcolm Hooper

    Despite the vast amount of biomedical literature (some 5000 papers) =
    going back to 1934 and the classification of ME as a neurological illness by =
    the WHO (ICD-10 G93.3) since 1969, the official UK attitudes as demonstrated =
    by the MRC, DWP, Department of Health, and to some extent your own =
    organisation NICE: ignore all this evidence, show an ideological
    commitment to a psychosomatic/behavioural model of the illness which
    is no longer tenablerecommend only cognitive restructuring techniques
    (CBT and GET) = that are not remotely curative and have been shown to
    be of no lasting = value and in the case of GET to be positively harmful (Peter White's
    assertion that this is because the interventions have been incorrectly
    administered has been shown to lack credibility)

    From Professor Malcolm Hooper to Sir Michael Rawlings 19 February 2010
    http://www.meactionuk.org.uk/Hooper-signed-letter-to-Rawlins.htm

    41 Simon Lawrence

    I am also extremely worried where this (25% ME Group Response to the
    ruling concerning the NICE Judicial Review into ME/CFS Guidelines)
    will lead in relation to the so called treatment therapies of
    Cognitive Behavioural Therapy and Graded Exercise Therapy. These
    treatment s in many cases have caused wide spread problems for ME
    sufferers. Our Report from 2004 http://tinyurl.com/25megroupanalysis
    see last page) reported serious flaws in the therapies and also the
    fact that many were not helped and a great deal more were harmed by
    undertaking these programs. Many of these sufferers were not even
    severely affected patients before undertaking the therapies!

    We have previously quoted that these therapies are flawed when the
    NICE Guidelines were released: Patient experience of this serious
    neurological illness, which affects up to 240,000 people in the UK has
    been all but ignored in favour of a psychological approach. The
    illness affects many body systems and their functions, and an
    estimated 60,000 develop M.E. so severely they become bed or house
    bound, with others needing to be tube fed.

    13 March 2009
    http://stanford.wellsphere.com/chro...jor-me-cfs-charities-over-court-ruling/624754

    42 ME Association

    The legal challenge to the NICE Guideline on ME/CFS was lost in the
    High Court today when it was dismissed by Mr Justice Simon. More
    details later. Please find The ME Associations immediate response
    below.

    People with ME/CFS now face a situation where doctors will continue to
    recommend two forms of treatments that many people with the illness
    find ineffective or even harmful.

    The ME Association is disappointed that the High Court Judicial Review
    of the NICE Guideline on ME/CFS found in favour of NICE.

    Recommendations that two controversial treatments cognitive
    behaviour therapy (CBT) and graded exercise treatment (GET) be
    offered as front-line treatments for those with mild to moderate forms
    of the illness remain unchanged.

    This is despite the findings of the largest-ever survey of ME patient
    opinion carried out by The ME Association last year which found that
    only 26% were helped by CBT while 56% reported that GET made them
    feel worse.

    The ME Association believe that the two people with ME who took up the
    legal challenge were fully justified in seeking a court hearing into
    the processes used by NICE to draw up the Guideline.

    Despite the Judicial Review failing to result in withdrawal of these
    potentially dangerous guidelines, The ME Association maintains that
    the evidence relating to both clinical and cost effectiveness does not
    justify the emphasis and optimism being given to these two treatments.
    NICEs recommendations cannot be justified by the evidence.

    http://stanford.wellsphere.com/chro...jor-me-cfs-charities-over-court-ruling/624754

    43 Professor Malcolm Hooper

    Referring to (ME)CFS and fibromyalgia as somatoform disorders, and
    citing an article by Wessely et al, a 2005 paper from Norway
    (Biological sensitisation and psychological amplification: Gateways to
    subjective health complaints and somatoform disorders. Ingvard
    Wilhelmsen. Psychoneuroendocrinology 2005:30:990‐995) fuelled the
    CFS/ME is a somatoform disorder controversy:

    What messages do we want to convey to the public? I will propose three slogans:
    1.Do not listen to your bodys signals! In other words, dont amplify.
    2.Do not trust your feelings!
    3.Do not trust your thoughts!

    This is the central theme of CBT. It is an important message to the
    public that subjective health complaints are common and seldom an
    indicator of serious disease. Cognitive, emotional and behavioural
    factors have the capacity to relieve symptoms and even change the
    brain. These facts should be highlighted in our message to the
    public.

    Such a message could prove fatal for some ME/CFS sufferers.

    It runs directly counter to the advice given fifteen years earlier by
    Dr Darrel Ho‐Yen about CBT/GET: It has been suggested that a new
    approach to the treatment of patients with postviral fatigue syndrome
    would be the adoption of a cognitive behavioural model (Wessely S,
    David A, Butler S, Chalder T: Management of chronic (postviral)
    fatigue syndrome. JRCGP 1989:39:26‐29). Those who are chronically ill
    have recognised the folly of the approach and, far from being
    maladaptive, their behaviour shows that they have insight into their
    illness (JRCGP 1990:40:37‐39).

    Magical Medicine http://www.meactionuk.org.uk/magical-medicine.htm

    43 Professor Malcolm Hooper

    A CBT model of CFS/ME

    The Trial Manual for Participants who were allocated to the cognitive
    behavioural therapy (CBT) arm of the (PACE) trial refers to a CBT
    model of understanding CFS/ME which in the next line has become a
    CBT model of CFS/ME.

    There is no CBT model of understanding in respect of understanding
    any disorder: people either understand something or they do not.

    How offensive it would be if psychiatrists talked about a CBT model
    of understanding HIV/AIDS, or a CBT model of understanding breast
    cancer, or a CBT model of understanding multiple sclerosis, or
    diabetes (which seems to be already happening see above).

    Medical knowledge does not rely on a CBT model of understanding a
    disease but relies on the science of medicine. To impose such a false
    doctrine upon patients with ME/CFS seems tantamount to psychological
    abuse of defenceless sick people.

    Magical Medicine http://www.meactionuk.org.uk/magical-medicine.htm

    44 Professor Malcolm Hooper

    Sharpe describes the cognitivemodel of CFS/ME as follows:A
    cognitive model of CFS ,based on systematic observation of over 100
    patients meeting criteria for CFS, has been proposed.

    The model as a whole attempts to explain how early life experiences
    lead to the formation of assumptions that, combined with certain life
    stressors, may precipitate CFS in predisposed individuals.

    The model then attempts to explain how cognitive , behavioural,
    biological and social factors interact in a vicious circle to
    perpetuate or maintain the illness. According to this model, the
    interpretation of symptoms predominantly in terms of physical illness,
    and not in terms of negative emotional states, plays a particularly
    important role in the maintenance of the disorder."

    To base a theoretical model on around 100 patients, whilst
    subsequently ignoring the extensive biomedical evidence obtained on
    over 20 2000 patients showing on going viral activity and a disrupted
    immune system as perpetuating factors in ME/CFS, thereby wasting
    millions of pounds sterling trying to prove the validity of their
    non-existentCFS/ME model, is something for which many people believe
    the Wessely School ought to be held to account.

    Magical Medicine http://www.meactionuk.org.uk/magical-medicine.htm

    45 MP Koolhass

    Conclusions:

    This pilot study, based on subjective experiences of ME/CFS sufferers,
    does not confirm the high success rates regularly claimed by research
    into the effectiveness of CBT for ME/CFS.

    Overall, CBT for ME/CFS does not improve patients well-being: More
    patients report deterioration of their condition rather than
    improvement.

    Our conclusion is that the claims in scientific publications about the
    effectiveness of this therapy, based on trials in strictly controlled
    settings within universities, has been overstated and are therefore
    misleading. The findings of a subgroup analysis also contradict
    reported findings from research in strictly regulated settings.

    [Cognitive behavior therapy for chronic fatigue syndrome from the
    patients perspective] [Article in Dutch]- Source: Medisch Contact,
    Feb 2008 Source: Medisch Contact, February 2008, ISBN:
    978-90-812658-1-2, by Koolhaas MP, de Boorder H, van Hoof E. The
    Netherlands. http://www.prohealth.com/library/showarticle.cfm?id=8724&t=CFIDS_FM

    46 Paul Cheney

    The most important thing about exercise is not to have (patients
    with ME / CFS) do aerobic exercise. I believe that even progressive
    aerobic exercise is counter-productive. If you have a defect in
    mitochondrial function and you push the mitochondria by exercise, you
    kill the DNA"

    Cheney P (1999) Lecture given in Orlando, Florida at the International
    Congress of Bioenergetic Medicine, 5th-7th February 1999
    http://www.cfsresearch.org/cfs/cheney/2.htm

    47 e van de Sande

    It takes the ME sufferer an inordinate amount of time to recover from exercise.

    e van de Sande M.(2003) ME/CFS Post-Exertional Malaise / Fatigue and Exercise
    http://www.mefmaction.net/default.aspx?Page=selectedarticlesmedical
    Quest #60, June/July, 2003

    48 Charles Shepherd

    As much care should be taken in prescribing exercise as in prescribing
    pharmaceuticals. ME/CFS patients do not respond to exercise in a manner that is
    expected of healthy people.

    Sheperd C. (2001) Pacing and exercise in chronic fatigue syndrome.
    Physiotherapy 2001 Aug;87(8):395-396.

    49 Severe ME patient

    A sufferer recounts the often horrifying impact of this treatment
    regime on those with severe ME:

    All of my help is useless:

    I am offered anti-depressants (I am not depressed).

    I am offered Behavioural Therapy (I have no incorrect illness beliefs).

    I am offered Graded Exercise (Which even in small moderation, relapses me).

    EVEN WHEN I DO THESE ALL AGAINST MY WILL. As an inpatient in Hospital,
    my medical records are falsified, and it claims I am obstructive to
    my own recovery, as these psychosomatic principles have no effect on
    me. This is then claimed to be MY fault, not the fact that I am not
    mentally ill, and therefore do not recover from M.E via mental
    illness interventions.

    http://mesite.dk/UKGibsonInquiry25Group.htm


    50. 25% Group

    In a 2004 survey, members of the 25 % Group found:

    * Cognitive behavioural therapy (93% unhelpful) and psychotherapy
    (90% unhelpful)
    * Worsening of condition with graded exercise therapy (tried by
    39% of members, and 82% made worse by it)

    These results are confirmed by this latest survey in which only one
    person who had tried CBT and GET reported that it was helpful.

    http://mesite.dk/UKGibsonInquiry25Group.htm

    51. Greg Crowhurst

    According to Loveless the ME/CFS patients whom he saw
    had far lower scores on the Karnofsky performance scale than HIV
    patients even in the last week of their life, indicating a probable
    functional ability of between 10 and 20 % of normal. This figure is
    highly significant for as Ho-Yen (1994) states, a patient with
    (ME/CFS) should be advised not to increase their activities gradually
    until they feel 80% of normal".

    http://mesite.dk/UKGibsonInquiry25Group.htm

    52. Severe ME patient

    I was an in-patient in a psychiatric ward of a London hospital. I was
    the only patient who did not have a mental health problem, and
    although my CBT therapist had had plenty of experience of working with
    M.E. patients, I was the first to be admitted as an in-patient. I only
    saw my therapist once a week, and the psychiatric nurses had no
    understanding of my illness at all. There was a huge amount of stress,
    and I was treated very badly by some of them. I received both CBT and
    GET, but the graded exercise seemed to be given priority. I worked
    with a physiotherapist, who also had no experience of M.E. I began to
    seriously deteriorate, and 4 months in, suffered a major relapse. I
    had a kind of undiagnosed 'stroke', collapsed, and became incapable of
    looking after myself.

    When I went to the hospital I could walk 100 yd., feed, wash and dress
    myself. When I left I could not weight bear at all, had no leg muscles
    to speak of, and needed two people to transfer me on and off the
    toilet and in and out of bed. I had little use of my hands and was
    totally bed bound. I could not tolerate sitting upright against the
    pillows, conversation was beyond me, and I could barely manage to feed
    myself by picking up food in my hands -- cutlery was out of the
    question. Nine years later I have improved, but I'm still bed bound.

    http://mesite.dk/UKGibsonInquiry25Group.htm

    53 Severe ME patient

    Giving GET and CBT to people with ME is like trying to prescribe
    treatment without first investigating the disease madness! We need
    proper biomedical research to find out the cause(s) of this illness
    and to investigate fully what it does to the body. GET and CBT have
    been found to be at best unhelpful to those with ME at worse, harmful.

    http://mesite.dk/UKGibsonInquiry25Group.htm

    54 Severe ME patient

    After I came home from the hospital where I received CBT/GET therapy,
    a physio came to see me once a week. The first one was absolutely
    appalling, and used to drag me up off the bed and hold me upright,
    even though I was too ill to cope with this, and my body was
    collapsing under me. It was a 'fight' really, with her believing that
    if I wasn't allowed to sit down, the muscles in my legs would improve,
    and I would gradually begin to weight-bear.

    http://mesite.dk/UKGibsonInquiry25Group.htm

    55 Severe ME patient

    I have been ill in different phases for 15 years. I have worked it
    out for myself that you can only exercise within very narrow limits.
    It is simply not the case that you can exercise your way out of this
    illness. If it were that simple most people with ME who were
    previously very fit and active, would have long since recovered.

    http://mesite.dk/UKGibsonInquiry25Group.htm

    56 Severe ME patient

    Another sufferer describes how, despite an extensive psychiatric
    evaluation which resulted in a report saying she is severely
    physically disabled, has no mood or behavioural problems and is
    coping remarkably well given very difficult circumstances, she was
    still offered CBT and counselling and my symptoms of severe nerve
    pain, nausea, difficulties with speaking, sight, swallowing and
    eating, seizure like brain activity, intermittent paralysis,
    contractures in hands and feet etc were left un-investigated and
    untreated.

    http://mesite.dk/UKGibsonInquiry25Group.htm

    57 Severe ME patient

    This sufferer states how: I could see the sense in graded exercise
    and how it could help someone to comeback from an illness and aid in
    their recovery but unfortunately with ME this treatment does not work
    and just sets you back.

    http://mesite.dk/UKGibsonInquiry25Group.htm

    58 Severe ME patient

    I participated in Graded Exercise therapy via the National M.E
    Centre, Romford, Essex.

    This lead to a relapse, at home, and made me unable to sit upright for
    1 year due to pressure in my head, and chest pain. I then relapsed and
    ended up in my local NHS Hospital in a cardiac care unit.

    http://mesite.dk/UKGibsonInquiry25Group.htm

    59 25% Group

    44% of respondents were offered Graded Exercise Therapy:

    Of the 44% who were offered GET 64% tried it and 95% reported that GET
    had a negative impact on them:

    67% of respondents were offered Cognitive Behaviour Therapy:

    Of the 67% who were offered CBT 42% tried it and 96% reported that CBT
    had a negative impact on them:
    The one sufferer who found GET and CBT helpful, heavily qualified
    their supporting statement:

    This (CBT & GET) had a positive effect in that it helped me develop
    coping strategies to deal with the day to day problems of ME. In no
    way was it put forward as a cure & I have never had the impression the
    therapist very firmly believes I have a genuine physical illness.

    http://mesite.dk/UKGibsonInquiry25Group.htm

    60 Severe ME patient

    Please, please, please start funding research into the physical side
    of the illness instead of flogging a dead horse by continuing to
    research CBT and GET. The evidence is already there that CBT and GET
    dont work but there are research projects around that look very
    promising and they badly need funding.

    http://mesite.dk/UKGibsonInquiry25Group.htm

    61 Malcolm Hooper

    It (Action for ME) reported a survey of >2000 people and some analysis
    of their data. 25% were housebound, 75% had lost their jobs, 77% had
    very much reduced social contacts and 92% were not helped by GET.

    Gibson Inquiry - Day 1, April 18th 2006 - Group
    Testimonies.http://mesite.dk/HooperCommentDay1GibsonInquiry.htm


    62 Malcolm Hooper

    Beth Llewelyn gave a very moving account of her own illness and the
    commonly experienced failures of the medical and benefits system.

    * Her GP refused to follow up the many medical reports associated
    with her illness, which was not recognised.

    * The family had been accused of all sorts of things because she
    did not get better.

    * 62% of GPs in Wales do not believe in ME.

    * She collapsed on the second day of GET.

    Gibson Inquiry - Day 1, April 18th 2006 - Group
    Testimonies.http://mesite.dk/HooperCommentDay1GibsonInquiry.htm

    63 Greg Crowhurst

    The number of patients who actually benefit from CBT and GET (Graded
    Exercise Therapy) in trials, is less than 10% and a large number of
    patients get significantly worse [1]. If anyone benefited from one of
    these trials they probably had some form of Chronic fatigue, but they
    did not have ME [2]. In reality virtually no research has been carried
    out on those who are most severely affected by ME.

    What few trials there have been, tend not to deal with the house and
    bed-bound. As Neil Abbot (2004) points out: "very few studies exist,
    and all define "severe illness" in different ways, complicating
    interpretation of the findings. And specific laboratory-based or
    experimental studies on severe sufferers are as rare as hens' teeth."
    [3]. The relevance of the psychiatric approach to the severely
    affected, now being rolled-out as a nationwide programme, is based on
    only one report in the scientific literature, [4], and that involved
    two wheelchair-bound participants who were actually able to attend a
    clinic in the first place.

    1. Text of speech by Alex Furguson to the Scottish Parliament June 9 2005

    2. ibid

    3. Abbot N (2004)
    Severely Overlooked by Science An Overview of Research on
    Severely-ill People with ME, MERGE
    www.meresearch.org.uk/publications/severe.html

    4. ibid
    Issues related to severe ME and the involvement of the UK Psychiatric
    lobby http://mesite.dk/IssuesRelatingSevereME.htm
     
  3. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    55
    101 Good Reasons : Why it is wrong to provide CBT and GET to ME Patients. Part 3

    64. Lajla Marks

    The difference between pacing and Graded Exercise Therapy is well
    described by the pacing expert Ellen Goudsmit C. Psychol. AFBPsS, UK:

    "GET as understood by psychologists and doctors would encourage
    patients to keep to the plan. ....... Some therapists see the
    deterioration and allow patients to stop and rest. ...... But that's
    not standard GET and not mentioned in any publication I ever read.
    It's certainly not in the trials cited in the draft [NICE
    Guidelines]). The idea is to plod on and complete the plan.. As
    discussed, Stulemeijer kicked out all those who could not keep the
    plan. Prins et al excluded those they felt might not be able to stick
    to the plan at the intake. Wessely allowed patients to reduce but not
    stop ...... If people can stop when they begin to feel unwell, it's
    pacing. It's the patient listening to their body. That's anathema in
    the CBT lit on CFS. ....

    Pacing is about hour-to-hour management. There's no agreeing plans
    a forthnight earlier. It requires mores self-discipline than GET or
    GA. It's an easy principle but not an easy option."

    Treatment http://www.mesite.dk/Treatment.htm#Exercise

    65 Countess of Mar

    During the Committee Stage of the Welfare Reform Bill debates from
    Clause 9 onwards in the Lords, I managed to extract from the Minister
    statements to the effect that people with CFS/ME would not be forced
    to do CBT/GET in order to continue to get their benefits.
    That debate is recorded in Hansard (Lords) on 28th February 2007, column GC198:
    Countess of Mar: "If a group of people refuses graded exercise and
    cognitive behaviour therapy, on the basis either that they are afraid
    or that they know it will not help them, will they be penalised?"

    Lord McKenzie of Luton (Parliamentary Under-Secretary, Department for
    Work and Pensions; Labour Peer): "there is no requirement for
    individuals to carry out any specific type of activity or treatment.
    That cannot be sanctioned".

    http://www.investinme.org/IIME Campaigning-CBT-GET-002.htm

    66 The Grace Charity for ME

    SAYING NO CAN BE POSITIVE
    Those who wish to refuse psychological therapies for M.E. can be
    supported by the following facts:-
    1) The law protects patients from unwanted treatments
    Medical practitioners cannot give a treatment to a patient without the
    patients consent.
    2) Private Health Insurers cannot force an M.E. client to undergo
    unwanted treatment before making a payment, unless those treatments
    are specified in the contract
    Unless the contract of a company states clearly that M.E. clients must
    undergo CBT and/or graded exercise before a payment is made, the
    company could well be in breach of contract. Also, every individual
    has freedom to express views as stated by The Human Rights Act 1998.
    If an insurance company ignores a clients reasons for refusing CBT
    and/or graded exercise, a client could claim their freedom of
    expression has been violated .
    3) An M.E. patient cannot have their state benefits withdrawn for
    refusing CBT and graded exercise.
    U.K. law says that if a patient refuses suitable treatment without
    good cause, benefits can be withdrawn [ii]. However, CBT and graded
    exercise could be argued as unsuitable treatments for M.E. sufferers
    (see facts below).
    4) M.E. is a neurological disorder
    It has been classified as such by the World Health Organisation in the
    International Classification of Diseases since 1969 [iii]. Therefore
    psychological therapies could well be inappropriate.
    5) M.E. has a strong medical history of being an organic disease
    Dr.Gordon Parish is the curator of the Ramsey Archive, which is
    possibly the worlds largest collection of medical papers on M.E.
    [iv]. It includes detailed world-wide epidemics of M.E. since 1934 and
    the viruses which triggered the disease.
    6) Many tests exist in aiding a diagnosis for M.E. Therefore, using
    psychological therapies for unexplained fatigue is inappropriate
    Although diagnostic tests for M.E. are still being worked upon with
    promise, nevertheless many tests and procedures can be administered in
    aiding a diagnosis of M.E. These include the use of SPECT, MRI and PET
    scans, test for NK cell activity and endocrine abnormalities, Tilt
    Table Test, viral tests and many more [v]. Although these tests arent
    always offered by the NHS for M.E., they have nevertheless shown
    evidence of physical abnormalities.
    7) Patients who improve after physical exercise programmes do not
    have M.E./CFS.,
    says Dr. Byron Hyde, M.D. of the Nightingale Research Foundation for
    M.E. in Canada, who has studied M.E. since 1984 [vi]. Dr. Hyde
    stresses that M.E. is primarily a disease of the Central Nervous
    System [vii].
    8) Patients who respond well to CBT and graded exercise might not have
    M.E. due to the diverse criteria used. Some criteria focus on
    unexplained chronic fatigue only, omitting symptoms showing central
    nervous system involvement
    There are at least ten definitions of Chronic Fatigue Syndrome [viii].
    In the U.K., a frequently used case definition is the Oxford Criteria
    which includes patients with no physical signs and selects subgroups
    of patients with high levels of psychiatric diagnoses .[ix] The PACE
    and FINE trials use the Oxford Criteria. [x]
    9) The assumption that an M.E. patient can always do more is an
    erroneous one There are overwhelming international research findings
    on M.E., which support multi-system involvement particularly of the
    immune, endocrine, cardiovascular and neurological systems. [xi]
    Also, there is evidence indicating pathology of the central nervous
    system and immune system [xii] and evidence of metabolic dysfunction
    in the exercising muscle. [xiii] Also, Dr. Jay Goldstein has
    demonstrated through SPECT scans the severely decreased brain
    perfusion of an M.E. patient 24 hours after physical exercise. [xiv]
    The Canadian Criteria (2003) states that the worsening of symptoms
    after exertion is a principal symptom of M.E. [xv] Raised levels of
    noxious by-products of abnormal cell membrane metabolism, associated
    with exercise and correlating with patients symptoms have been
    demonstrated.[xvi]
    10) CBT and Graded Exercise can worsen M.E. symptoms
    In a survey of 3074 M.E./CFS patients conducted between 1998 2001,
    55% of patients said that CBT had made no difference to their illness,
    whilst 22% said CBT had made their illness worse. 16% of patients said
    that Graded Exercise had made no difference to their illness whilst
    48% said it had made their illness worse [xvii]
    A survey by the 25% ME Group (for severe sufferers) of 437 patients,
    demonstrated that of the 39% of group members who had used graded
    exercise, 95% had found this therapy unhelpful, whilst
    82% reported their condition had been made worse by graded exercise.
    Some patients were not severely ill with M.E. until after graded
    exercise.
    In the same survey
    93% of those who had undergone Cognitive Behavioural Therapy had found
    it unhelpful [xviii]
    See also the ME Conference 2006 DVD.
    11) The CMOs Report recommended CBT and graded exercise despite the
    objection of two patient support groups
    The patient support groups of BRAME (Blue Ribbon for the Awareness of
    ME) and the 25% ME Group refused to endorse the CMOs Report of 2002
    based on its recommended treatments of CBT and graded exercise. These
    support groups mainly represent the needs of severe M.E. sufferers and
    were part of the CMOs Working Group.
    12) Medical Concerns have been raised about the CMOs Report
    The Journal of Chronic Fatigue Syndrome, [xix] mentions criticism by
    health professionals and the public of both the British and the
    Australian M.E./CFS guidelines.
    These criticisms included claims of bias in the recommendations
    toward a psychiatric outcome and failure to understand the limitations
    of patients to perform exercise programs as well as many others.
    References :
    1 The Human Rights Act 1998, European Convention for the Protection of
    Human Rights and Fundamental Freedoms, Section 1, Article 10, no.1

    2 U.K. law on state benefits, Regulation 18 Social Security
    (Incapacity For Work) Regulations. A similar law applies to other
    state benefits for sickness and disability.

    3 World Health Organisation - International Classification of Diseases 10-G93.3

    4 What is ME? What is CFS? Information For Clinicians and Lawyers,
    Dec. 2001, Marshall, Williams, Hooper, page 11. Available from Prof.
    Malcolm Hooper, Dept.of Life Sciences, University of Sunderland SR2
    7EE
    5 Leaflet A Physicians Guide to Myalgic Encephalomyelitis Chronic
    Fatigue Syndrome, The Nightingale Research Foundation, Vol.1, Issue 7,
    revised, 1992, page 17. Also, Journal of Chronic Fatigue Syndrome Vol
    . II, No.1, 2003, Canadian Criteria, page 25, The Haworth Press Inc.

    6 Ibid., A Physicians Guide to Myalgic Encephalomyelitis Chronic
    Fatigue Syndrome, page 25

    7 Clinical Observations of Central Nervous System Dysfunction in
    Post-Infectious, Acute Onset M.E./CFS, page 38, The Clinical and
    Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue Syndrome
    1992, Byron Marshall Hyde, M.D., The Nightingale Research Foundation.

    8 Report from the National Task Force on Chronic Fatigue Syndrome,
    Westcare, Bristol 1994. This states nine definitions: the recent
    Canadian definition in 2003 makes ten.

    9 Katon & Russo, 1992; Freiberg, 1999, Unhelpful Counsel? MERGEs
    response to the CMO report on CFS/ME, 2002, p15.

    10 See the website of the Medical Research Council at www.mrc.ac.uk

    11 ME and/or CFS paper, September 2001, page 1, V.A. Spence PhD,
    Chairman of MERGE ( ME Research Group for Education and Support). This
    paper quotes from several published findings. Available from MERGE,
    The Gateway, North Methven Street, Perth PH1 5PP

    12 The Biology of the Chronic Fatigue Syndrome, Prof. Anthony
    Komaroff, The American Journal of Medicine 2000: 108: 99-105.

    13 Mitochrondrial abnormalities in the postviral fatigue syndrome,
    Behan, W.M.H. et al., Acta Neuropathologica 83, 1991, pages 61-65.

    14 The Negative Effects of Exercise on an M.E./CFS Dysfunctional
    Brain, page vii, The Clinical and Scientific Basis of Myalgic
    Encephalomyelitis Chronic Fatigue Syndrome 1992, Byron Marshall Hyde,
    M.D., The Nightingale Research Foundation.

    15 Journal of Chronic Fatigue Syndrome Vol. 11, No.1, 2003, Canadian
    Criteria, page 22, The Haworth Press Inc.

    16 Oxidative stress levels are raised in Chronic Fatigue Syndrome and
    are associated with clinical symptoms, Kennedy, Spence, Belch, Free
    Radical Biology & Medicine 2005:39:584-589

    17 Directly from the Horses Mouths, Doris M. Jones MSc, Reference
    Group Member, CMOs Working Group. This survey was part of the Working
    Group on ME/CFS set up by the Chief Medical Officer Sir Kenneth Calman
    in 1998.

    18 Analysis Report by 25% ME Group March 2004 www.25megroup.org

    19 see footnote 15, page 2 of the Editorial .

    Saying No Can Be Positive has been produced by The Grace Charity for M.E.
    http://www.thegracecharityforme.org/documents.asp


    67. Sussex

    The Sussex CFS referral criteria consists of the presence of
    unexplained fatigue, and gives emphasis to illness beliefs, and so
    does not even identify the hallmarks of Neurological/Immunological ME
    G93.3, but instead identifies chronic fatigue, a common symptom of a
    wide range of conditions including many psychiatric disorders. In the
    ICD Chronic Fatigue is listed as a completely different disorder to
    ME, CF is in ICD F48 Neurasthenia, in the psychiatric section.
    The Sussex referral criteria also requires that the patient agrees to
    have a Biopsychosocial and management assessment, and then offers
    management with CBT and GET which does not have the evidence base
    to justify such expenditure of millions and 11 wasted years since the
    CMOs Working Group was convened in 1998, not to mention wasted lives
    of patients with Neurological, Immunological ME....
    Selected Emails/Letters to Dr Turner for May 5 Deadline
    http://www.rime.me.uk/Inquiry Letters.doc.

    68 North London
    ... Re. the APPG on ME Inquiry into NHS Services, will you be asking
    the CNCC at Barts London for evidence?
    Please note (1) the patients' leaflet is entitled 'The Chronic Fatigue
    Service' (2) the Referral Criteria says, 'A primary complaint of
    unexplained fatigue' (3) the unit offers GET and CBT .
    Is this consistent with the illness described by WHO ICD G93.3 (which
    the APPG recognises) and Canadian Criteria?
    Selected Emails/Letters to Dr Turner for May 5 Deadline
    http://www.rime.me.uk/Inquiry Letters.doc

    69 ME Research UK
    Indeed, when Clinical Guideline 53 is placed side by side with other
    Clinical Guidelines in the NICE pantheon, representing 19 different
    clinical conditions (see the table in The NICE Guideline: what's the
    problem? in the Spring 2008 issue of Breakthrough, pdf 53 KB), it can
    be seen that while CBT is postulated to be a main intervention for a
    range of psychological conditions, ME/CFS is the only physical
    condition in this list for which the therapy is flagged up as a
    primary specialist management approach in a NICE guideline. This is a
    rum business, particularly since Clinical Guideline 53 (full version,
    page 252) is clear in stating: The [Guideline Development Group] did
    not regard CBT or other behavioural therapies as curative or directed
    at the underlying disease process, which remains unknown. Rather, such
    interventions can help some patients cope with the condition and
    experience improved functioning, and consequently a improved quality
    of life.
    The NICE Clinical Guideline: from content to clinic
    http://www.meresearch.org.uk/information/publications/niceguideline.html

    70 Margaret Williams
    In contrast to Cleare's assertions about the favourable evidence for
    the long-term benefit of CBT international attempts in Australia
    and America to replicate the claimed success of the Wessely School
    psychiatrists for those with ME/CFS have not been successful.
    By analogy, is Cleare claiming that the physical symptoms of multiple
    sclerosis can also be reversed by psychiatrically corrected
    cognition processes and exercise?
    Does Cleare believe that the established laboratory abnormalities seen
    in ME/CFS are simply inconsequential epiphenomena? Is he confident
    that in terms of restoring ME/CFS patients to asymptomatic pre-morbid
    levels of functioning, CBT/GET can restore damaged mitochondria; that
    CBT/GET can address the confirmed (published) vascular abnormalities
    - specifically the blood vessel sensitivity to acetylcholine which
    affects only those with ME/CFS and not other groups (such as Gulf War
    Syndrome and those with Organophosphate-exposed illness) who are
    equally disabled and who fulfil criteria for chronic fatigue syndrome;
    that CBT/GET can restore a leaky gut and a non-intact blood brain
    barrier; that CBT/GET can prevent the prominent immune derangements
    seen in ME/CFS such as humoral autoimmunity against polypeptides of
    the nuclear envelope (the occurrence of autoantibodies to an
    intracellular protein like lamin β1 provides laboratory evidence for
    an autoimmune component in ME/CFS ); that CBT/GET can modulate
    increased neutrophil apoptosis; that CBT/GET can restore maximum
    oxygen delivery and optimum lung function tests; that CBT/GET can
    restore an increased CD4-CD8 ratio; that CBT/GET can restore an
    up-regulated antiviral pathway and that CBT/GET can reverse recurrent
    pancreatitis, cardiomyopathy and hair loss and that it can control
    vertigo and observable nystagmus, double vision, nausea, bladder and
    bowel dysfunction, neuromuscular incoordination and intractable pain,
    all of which may occur in ME/CFS?
    Dysfunctional Beliefs In ME/CFS? www.hfme.org/wmarshallandwilliams.htm

    71 Jeannie Carson

    Mill Crescent resident Jeannie Carson suffers from ME, and has
    criticised the NHS's view of the illness which looks at it as a
    psychiatric condition, with treatment including cognitive behavioural
    therapy (CBT).
    The former Pembury Hospital midwife feels the healthcare system is
    wrong for labelling it in this way, and says it should be treated as a
    neurological illness.
    The 67-year-old spends most of the day bed-bound and as well as the
    overwhelming tiredness, she suffers muscular pain, difficulty walking,
    and feelings of isolation and loneliness.
    She has shunned her treatment through psychiatric methods and now gets
    by with the help of a carer.
    "I was very active, I didn't want this ME," she said.
    "There are times when I get angry and frustrated because I am unable
    to be as active as I want to be.
    I feel they are being unfair.
    "How dare they say it is a psychological illness? I did not ask for this."
    Miss Carson is a member of The Grace Charity for ME which sends
    treatment guidelines to all surgeries in Kent and Medway.
    'NHS must not treat ME as a mental illness'
    http://www.meassociation.org.uk/ind...t-not-treat-me-as-a-mental-illness&Itemid=219

    72 Mary M. Schweitzer, Ph.D.

    Kings College, London, follows the theory that
    patients with CFS hold "inappropriate illness beliefs,"
    and they have to re-learn that (1) they are well,
    through cognitive behaviour therapy (CBT), and (2)
    they can be reconditioned, through graded exercise
    therapy (GET) - and then they can happily go back to
    work and family.

    These theories have sent children and even adults to
    foster care or psychiatric hospitals for the sin of
    having "chronic fatigue syndrome."

    Simon Wessely: Pay Attention GIGO ...
    Pay Attention To The Data Set
    http://niceguidelines.blogspot.com/2010/01/simon-wessely-pay-attention-gigo.html


    73. Maryann Spurgin, Ph.D.

    In 1994, a group of government propagandists and psychiatrists on the
    take from insurance companies created one of the most damaging
    documents in the fifty-year history of ME/CFS: the 1994 Centers for
    Disease Control Case Definition. Hillary Johnson was one of the first
    harshly to criticize the document in her book Oslers Web, stating
    that the criteria were too broad and failed to describe the disease
    with which she and so many of us had been stricken, the disease that
    caused post-exertional sickness and neurological problems. Instead, it
    selected heterogeneous fatigue states under the CFS umbrella. This
    lead to inconsistent research results and inappropriate treatment
    protocols like cognitive behavioral therapy (CBT) and graded exercise
    therapy (GET), which caused many patients to become worse.

    Review of : "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome:
    Clinical Working Case Definition, Diagnostic and Treatment Protocols,"
    J of Chronic Fatigue Syndrome, Vol. 11 (1) 2003, pp. 7-116. Bruce M.
    Carruthers, MD, CM, FRCP(C); Anil Kumar Jain, BSc, MD; Kenny L. De
    Meirleir, MD, PhD; Daniel L. Peterson, MD; Nancy G. Klimas, MD; A.
    Martin Lerner, MD, PC, MACP et al.
    http://www.cfids-cab.org/MESA/cccd-1.html
    74.
    Countess of MAR
    : What are we doing to our teenage ME suffers when we force them
    back to school, deny home tuition, and tell them to exercise as form
    of therapy ? What will happen in 30 years time to children now getting
    ME in a climate where they are disbelieved and told to pull themselves
    together ?

    Countess of Mars address in the House of Lords, 22 Jan 2004

    75. Greg Crowhurst

    The UK Government has spent millions of pounds setting up clinics
    across the country which offer a common treatment programme of Pacing,
    CBT (cognitive behavioural therapy) and GET (graded exercise therapy).

    According to one job description (2005) : "severely disabled,
    fatigued patients and relatives (will be required ) to change
    perpetuating illness behaviour and perform a self-managed activity
    programme, regulate disturbed sleep patterns and modify predisposing
    personality style."

    Royal Liverpool & Broadgreen University Hospitals NHS Trust , Job
    title: Trainee Clinical Fatigue Therapist, Chronic Fatigue Treatment
    Service Ref: 2570, January 2005

    76. Stein E
    Stein E (2007) points out how when measured objectively the CBT
    trials delivered no statistical change.
    Regarding the graded exercise therapy (GET) trials , Stein states
    that only two RCTs had positive results, but after 24 weeks there
    were no benefits at all. Another study had no control group, and its
    conclusion was that exercise capacity should not be used as an
    outcome criterion the reason is because they could not find any
    change. A Belgium study concluded that the results are less robust
    than expected and it was noted that complete recovery was never
    recorded.

    Stein E (2007) Behavioural Interventions in ME/CFS New Horizons
    International Conference on ME/CFS Research, ME Research UK and the
    Irish ME Trust DVD

    77. Elsie Owing

    It is very important to note that internationally CBT and exercise are
    viewed as a coping strategy, to help people to "adjust to the
    limitations of the disease. It does not attempt to convince them (as
    in the UK, where it is used as a "treatment") that there is nothing
    physically wrong with them."

    Elsie Owing in Eileen Marshall and Margaret Williams Deliberate
    Dichotomy? 10th November 2004
    www.meactionuk.org.uk/Deliberate_Dichotomy.htm

    78.Severe ME patient

    Graded Exercise Therapy worsened me dramatically and I have no doubt
    had been a large factor in my being severely affected after 20 years.
    Cognitive Behavioural Therapy - this did not make me worse but I feel
    was completely inappropriate and didn't have any relevance to my day
    to day life.

    Greg Crowhurst East Anglia ME patients (EAME) Survey of the Severely
    Affected 2007

    79. Severe ME patient

    I've had CBT and GET. Both of these made me extremely worse for a
    number of years and from which I am still recovering from and which
    has still affected me."

    Greg Crowhurst East Anglia ME patients (EAME) Survey of the Severely
    Affected 2007

    80. Severe ME patient

    Hydrotherapy, using a form of GET, made me more
    and more ill and I developed spasms.

    Common sense helps with pacing and graded exercise etc. CBT and GET
    I dont think are helpful, as often any course is very draining and I
    cannot concentrate anyway

    Greg Crowhurst East Anglia ME patients (EAME) Survey of the Severely
    Affected 2007

    81. Catherine Ashenfelter

    Ashenfelter (2007) , for example, describes how one ME sufferer ,
    referred in May 2007 to the National Hospital for help in managing
    their illness and pain control, was placed in a mental ward,
    alongside suicidal patients and immediately put on a Cognitive
    Behaviour Therapy and Graded Exercise programme and was denied pain
    relief.. Her privately employed carer was phoned up at home and told
    to no longer care for her in the future.

    Ashenfelter C (2007) Hospital Warning, The Quarterly, 25% Severe ME
    Group, Newsletter, Issue 24, Winter 2007, p. 19

    82 Ruth Nolan

    Nolan (2007) outlines how in submissions to NICE, The British
    Psychological Society said that there is no evidence that GET (with
    or without CBT) actually increases activity levels, the Royal College
    of Physicians said Clinical evidence and patient experience suggests
    strongly that some patients may be worsened with GET, while the
    Association for British Neurologists said that the guideline needs to
    be thoroughly revised to reflect our current understanding of this
    condition rather than the supposition of the psychiatrists.

    Nolan R (2007) A serious lack of evidence for NICE guidelines BMJ
    Rapid Responses to R Baker and E J Shaw Diagnosis and management of
    chronic fatigue syndrome or myalgic encephalomyelitis (or
    encephalopathy): summary of NICE guidance
    BMJ 2007; 335: 446-448
    http://www.bmj.com/cgi/eletters/335/7617/446


    83. Chief Medical Officer

    The Chief Medical Officer (2002) has warned that exercise-based
    regimes advocated for less severely affected patients tend not to have
    been studied among those most severely affected.

    Department of Health (2002a) , A`Report of the CFS/ME Working Group.
    Report to the Chief Medical Officer of an Independent Working Group,
    London, The Stationary Office.

    84. Dr Speedy

    the "revalidation therapies" for patients with ME/CFS, which are
    monopolized by the governmental institutions for example in the UK,
    Belgium and the Netherlands, are not only not efficient, but also
    aggravate the condition of many patients.

    Despite several major scientific breakthroughs, ME/CFS is still
    described in the popular media as a medically unexplained disorder.
    Psychotherapy (cognitive behavioral therapy) and graded exercise
    therapy (GET) are declared to be the only possible therapies.

    A thorough analysis of the current medical scientific literature and
    international patient surveys, however, shows that CBT/GET is not only
    ineffective for the majority of the ME/CFS patients, but also
    potentially very harmful.

    Scientific studies and large-scaled patient surveys have shown that
    treatments with CBT/GET seriously deteriorate the condition of many
    patients with ME/CFS.

    The work capacity decreased as well!

    The review also explains why GET and exercise do aggravate
    characteristic complaints, like fatigue, pain, neurocognitive
    problems (e.g. concentration and memory).

    Pre-existing biological aberrations, e.g. inflammation, oxidative
    stress, and dysfunctional ion channels, will be amplified by a minor
    exertion, like walking or reading a book and by rehabilitation
    therapies like CBT/GET.

    GET and CBT HARMFUL FOR ME/CFS
    http://niceguidelines.blogspot.com/2009/11/get-and-cbt-harmful-for-mecfs.html

    85. Frank NM Twisk, Michael Maes

    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.
    [A review on CBT and GET in ME/CFS: Not only ineffective and not
    evidence-based, but also potentially harmful] Source:
    NeuroEndocrinology Letters, Sep 15, 2009
    http://www.prohealth.com/library/showarticle.cfm?LIBID=14964
     
  4. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    55
    101 Good Reasons : Why it is wrong to provide CBT and GET to ME Patients. Part 4

    86 25% Group
    The July 2007 document Defiance of Science by M Hooper et al (
    www.meactionuk.org ) provides details of studies and references which
    showed that prescribed exercise programmes for ME/CFS patients not
    only cannot be complied with by them, but also results in worsening of
    ME/CFS symptomatology (p3/4). In addition a number of references are
    given of statements made by some of the very UK psychiatrists who
    advocate these regimes, especially also CBT. For instance:
    At the American Association for CFS (AACFS, now the IACFS/ME)
    International Conference at Cambridge, Mass., on 10-11th October 1998,
    Wessely-School psychiatrist Michael Sharpe went on record stating that
    the benefits of CBT faded with time.
    On 3.11.2000, Sharpe again confirmed There is a tendency for the
    difference between those receiving CBT and those receiving comparison
    treatment to diminish with time due to a tendency to relapse in the
    former (www.cfs.inform/dk).
    Wessely himself is on record stating that CBT doesnt work for all: in
    his Editorial (JAMA 19.9.2001:286:11) he stated that CBT + GET are
    only modestly effective and that neither is remotely curative.
    Wessely is also on record as stating: It should be kept in mind that
    evidence for randomised trials bears no guarantee for treatment
    success in routine practice. In fact, many CFS patients, in
    specialised treatment centres and the wider world, do not benefit from
    these interventions. (The art of diagnosis: pros and cons of
    labelling chronic fatigue syndrome. Marcus JH Huibers + Simon
    Wessely. (Psychological Medicine, 2006:36(7):895-900).
    http://www.25megroup.org/Campaigning/NICE/ADDITIONAL MEMORANDUM TO THE HEALTH SELECT COMMITTEE.doc.

    87 Dr Speedy

    CBT is just as effective for a neurological illness as watching grass
    grow.which is a lot cheaper actually

    http://www.mecfswa.org.au/News_and_...ter_to_Royal_Society_of_Medicine/Default.aspx

    88 Susan Wenger

    CBT may help people with garden-variety chronic fatigue. It does NOT
    reduce the severity of symptoms of chronic fatigue SYNDROME, which is
    an organic disease.

    Put it this way: sending a CFS patient to a therapist is much like
    sending someone with multiple sclerosis to a therapist. At best, it
    can help the person cope with the emotional difficulties of living
    with a (so far) incurable disease. It's not going to ameliorate the
    physical symptoms.

    http://www.nursingtimes.net/whats-n...nt-option-for-chronic-fatigue/1733803.article

    89 Terri Smith

    M.E./CFS is not a mental condition, it is a neurological illness & CBT
    has been repeatedly found by patient group surveys to worsen the
    already debilitating symptoms.There is overwhelming research evidence
    proving it is a physical illness. 80% of sufferers never recover, &
    some live their lives in darkened rooms unable to speak or swallow. It
    is time that the nursing profession stopped colluding with the
    powerful psychiatric lobby that have redefined M.E. as a somatisation
    disorder to their own personal gain. This redefinition makes sufferers
    already difficult lives impossible. It is not acceptable enough in
    2008 for the nursing profession to 'just follow orders' in the
    treatment of M.E. patients as if they have a mental illness.
    WORLD HEALTH ORGANISATION (W.H.O.) DEFINITION OF M.E.
    ME/CFS is an acquired organic, pathophysiological, multi-systemic
    illness that occurs in both sporadic and epidemic forms. Myalgic
    Encephalomyelitis (ICD 10 G93.3), which includes CFS, is classified as
    a neurological disease in the World Health Organization's
    International Classification of Diseases (ICD). Chronic fatigue must
    not be confused with ME/CFS because the "fatigue" of ME/CFS represents
    pathophysiological exhaustion and is only one of many symptoms.
    Compelling research evidence of physiological and biochemical
    abnormalities identifies ME/CFS as a distinct, biological clinical
    disorder.

    www.nursingtimes.net/whats-new-in-n...nt-option-for-chronic-fatigue/1733803.article

    90. Dr John Greensmith

    When therapists - or, sometimes, the patients themselves -claim that
    CBT has helped their CFS, there are always other possible
    explanations, such as improvement with time, resting or pacing, which
    CBT advocates choose to ignore or overrule.

    This month, at a Conference at the University of East Anglia,
    Professors Mick Cooper & Robert Elliott from Strathclyde University
    showed that the efficacy of CBT is a 'myth' and we are probably
    wasting millions of pounds.

    www.nursingtimes.net/whats-new-in-n...nt-option-for-chronic-fatigue/1733803.article

    91. Joanna Ko

    My daughter who has severe ME has attended 25 CBT sessions. It has
    helped her to deal with the depression caused by this awful disease
    but it has definitely caused deterioration in her ME symptoms which in
    turn brought the depression back, as strong as ever. Overall-
    drawbacks outweigh the benefits manifold.

    www.nursingtimes.net/whats-new-in-n...nt-option-for-chronic-fatigue/1733803.article


    92. Dr John Greensmith

    The spectacular results claimed for CBT and GET depend on the say-so
    of advocates and practitioners, unsupported by any independent
    evidence. The latest review (Twisk & Maes, September 2009) confirms
    that all the research to date shows that CBT is ineffective and GET
    makes matters worse for M.E. sufferers. Yet, astonishingly, there are
    calls for even more funding to expand the service.
    Few, if any, voices are heard in opposition. Government ministers are
    perhaps relieved that they can be said to be offering something rather
    than nothing. Busy GPs may assume that the NICE guidelines are firmly
    scientifically based and not even check the literature. Those with any
    concerns may be remain silent rather than question the medical
    establishment and patients who have been hurt may be reluctant to say
    so for fear of being left even more isolated. The wailing and gnashing
    of teeth is still audible for all but deaf ears.
    Open letter to Professor Sir Liam Donaldson, Chief Medical Officer
    http://www.dailyecho.co.uk/yoursay/...or_Sir_Liam_Donaldson__Chief_Medical_Officer/

    93. RIME
    RiME is particularly concerned about the plight of severely affected
    PWME. Most mail comes from the latter. These people are desperate for
    hope. One person wrote recently: "I don't want more GE/CBT/Pacing...
    I'm sick of it. I just want someone to investigate what is going wrong
    with my body. It's as simple as that."
    http://erythos.com/RiME/Docs/NL0305.rtf.

    94 Patricia Sanders and Jakob Korf, PhD

    Chronic fatigue syndrome (CFS) is now recognized as a medial disorder.
    In contrast to recent related reports, the present review focuses
    primarily on aetiological aspects of CFS. Four major hypotheses are
    reviewed. (1) Although CFS is often associated with viral infection,
    the presence of viruses has as yet not consistently been detected. (2)
    It is not clear whether anomalies of the HPA axis often observed in
    CFS, are cause or the consequences of the disorder. (3) Immune
    dysfunction as the cause of CFS is thus far the weakest hypothesis.
    (4) The psychiatric and psychosocial hypothesis denies the existence
    of CFS as a disease entity. Accordingly, the fatigue symptoms are
    assumed to be the consequence of other (somatic) diseases. Other
    possible causes of CFS are oxidative stress and genetic
    predisposition. In CFS cognitive behavioural therapy is most commonly
    used. This therapy, however, appears to be ineffective in many
    patients. The suggested causes of CFS and the divergent reactions to
    therapy may be explained by the lack of recognition of subgroups.
    Identification of subtypes may lead to more effective therapeutic
    interventions.
    Summary
    Neuroaetiology of chronic fatigue syndrome: An overview
    World Journal of Biological Psychiatry
    2008, Vol. 9, No. 3, Pages 165-171 , DOI 10.1080/15622970701310971
    http://informahealthcare.com/doi/abs/10.1080/15622970701310971?cookieSet=1&journalCode=wbp

    95 velogubbed

    People with M.E don't want sympathy - they just want the nonsense to
    stop. They want proper biomedical research to be funded at government
    level, they want the patronising, arrogant approach of the champions
    of CBT to stop. CBT and graded exercise will not cure M.E - it may
    cure other things but it will not cure M.E. People with ME are no more
    mentally ill than the rest of the population. There is in fact NO
    evidence that CBT and graded exercise help people with genuine M.E.
    There *is* however evidence that graded exercise can make people with
    M.E worse. Testimonies of people with M.E were actually ignored in the
    NICE studies.

    http://www.guardian.co.uk/commentisfree/2007/nov/16/sickmadorbad

    96 MerkinOnParis

    At present there is no convincing evidence that any treatments work
    except CBT and graded exercise.'Nonsense. In fact, as has been pointed
    out this may actually make matters worse.The reason that CBT is touted
    for ME and Depression is that the Government is basing Pathways to
    Work on the American welfare system where the Insurance companies
    involved are allowed carte blanche in efforts to get people off
    welfare.This includes fitting the illness to the desired cost outcome
    regardless of clinical need.

    http://www.guardian.co.uk/commentisfree/2007/nov/16/sickmadorbad

    97 Yamila Samsun,

    Why are there millions of CBT studies but no psychologist has ever
    done one in patients with (very) severe ME? Just think about it.
    If CBT would be the solution and the wonder therapy why is there no
    study showing that patients who are tube fed can eat again because
    they had CBT? Or they dont need washing in bed or a bottle for
    urinating because they now can walk again. The reason is very simple.
    Of the patients with (very) severe ME, almost all of them have ME.
    They dont have psychiatric illnesses or fall in the category, we are
    all a bit tired at times. It would be really nice if CBT would
    help/cure them but that is just as likely as it would help patients
    walk again if they are wheelchair bound due to MS or a spinal cord
    injury after an RTA. And that is the real reason why there are no CBT
    studies in patients where there is no doubt that they have ME. And
    dont say we cant find those patients with (very) severe ME, because
    estimates say there are 50-60,000 of them in the UK alone.
    Back to Basics http://www.bmj.com/cgi/eletters/335/7617/446#175606

    98 Dr Derek Englander

    I decided to attempt to determine the effectiveness of the Graded
    Exercise Therapy (GET) protocol in a known patient group suffering
    from Myalgic Encephalomyelitis (ME). The protocol was tested in a
    simple manner without double blinding but the original research was
    also subjective. Twenty patients with Myalgic Encephalomyelitis (ME)
    diagnosed according to the Fukuda criteria (3) were started on the GET
    protocol. After 24-48 hours of the onset of GET, twelve of the
    patients succumbed to relapse in their symptoms: massive fatigue,
    increased muscle pain, pains in joints, brain "fog". During the
    following week seventeen of the twenty patients suffered from
    increased symptoms as delineated above. The protocol was continued for
    three weeks. There was no improvement. Some patients were so severely
    affected that they were bedridden for four weeks following the
    protocol.
    GET was pronounced as the most effective method of treatment of ME by
    NICE. From this short but rather apparent review of the GET protocol,
    it is obvious that either the study group used initially by the NICE
    research did not suffer from ME or the results were not adequately
    analysed. It is apparent that this treatment is not the treatment of
    choice, in fact it is detrimental to the well being of the ME patient.
    The psychiatric psychopolitical group have used GET as a lever to
    support their theory, GET is unhelpful and unhinges their theory.
    NICE and ineffective GET Therapy
    http://www.bmj.com/cgi/eletters/335/7617/446#175606

    99 Dr Andrew Ashley

    I have been going through the responses and in Belgium 18% worked
    before CBT and Nijmegen claims 69% gets cured by CBT than 18 plus 69 =
    87%, so 87% should be back at work after CBT. But apparently it is
    only 14.9%; so what is the evidence for treating ME with CBT?
    CBT makes you more ill http://www.bmj.com/cgi/eletters/335/7617/446#175606

    100 Tom Kinlon
    On the issue of group CBT, which is available in many NHS CFS services
    around the UK, St Bartholomew's Hospital Chronic Fatigue Services gave
    the following research information: "The only RCT of CBT using a group
    approach showed that the treatment was no better than either usual
    medical care or supportive listening in improving physical function,
    one of its two primary outcomes, which it was designed to improve
    (O'Dowd H, Gladwell P, Rogers CA, Hollinghurst S, Gregory A. Cognitive
    behavioural therapy in chronic fatigue syndrome: a randomised
    controlled trial of an outpatient group programme. Journal: Health
    Technol Assess. 2006 Oct;10(37):1-140). A non-randomised waiting list
    control trial of group delivered CBT found only modest effects on
    fatigue and negative effects on function (Bazelmans E, Prins JB,
    Lulofs R, van der Meer JWM, Bleijenberg G. Cognitive behaviour group
    therapy for chronic fatigue syndrome: a non-randomised waiting list
    controlled study. Psychotherapy & Psychosomatics 2005;74:218-24)."
    Stakeholders comments on Draft Guidelines make for interesting reading
    http://www.bmj.com/cgi/eletters/335/7617/446#175606

    101 Dr Peter Saunders

    Tip FIVE: discuss CBT, if it cures the patient your diagnosis of ME was wrong.

    Tip SIX: ME patients have the so called threshold phenomenon, meaning
    that they cant increase their stamina like healthy people. If they
    can or if GET helps to improve their stamina then again, the diagnosis
    of ME was wrong.

    Quick guideline to ME for busy GPs
    http://www.bmj.com/cgi/eletters/335/7617/446#175606
     
  5. Lily

    Lily *Believe*

    Messages:
    665
    Likes:
    4
    Great minds......Island Finn. I just posted from Greg Crowhurst's blog too!:D:sofa:
     
  6. Lelvina

    Lelvina ex-Bookworm

    Messages:
    57
    Likes:
    2
    Wow. Thank you for (re?)posting this. Just - wow.
     

See more popular forum discussions.

Share This Page