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United Kingdom: 2007 NICE CFS/ME GUIDELINE

Discussion in 'Other guidelines with public consultation process' started by Esther12, Feb 24, 2018.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    this is the 2007 updated report:


    Methodological quality of included studies
    There are now a considerable number of studies evaluating interventions for the treatment and
    management of CFS/ME and many of them have used robust research methods; the majority of the
    included studies were RCTs and many of these were of high methodological quality (Table 8).
    However, RCTs generally scored poorly for concealment of treatment allocation and many failed to
    use an intention-to-treat analysis. These issues should be addressed in designing future clinical trials of interventions for CFS/ME."

    Although we have discussed all the studies evaluating a particular intervention together, the treatment offered to patients receiving a particular type of therapy in practice may vary considerably, particularly for behavioural interventions. For example, in the CBT study by Stulemeijer et al.93, participants in the intervention group received ten individual therapy sessions over 5 months in a hospital child psychology department, whereas in the study by Whitehead et al.95 the intervention was a form of ‘brief CBT’ delivered by general practitioners. Further standardisation of methods for delivering behavioural interventions in research and practice would be desirable."

    Participants in included studies and diagnostic criteria
    The studies included in our review also show a lack of uniformity in terms of case definitions for
    CFS/ME, study inclusion and exclusion criteria and the basic information provided about the
    participants. For example, baseline functional status and duration of illness are not always reported.
    This makes it difficult to assess the generalisability of the findings of many of these studies."

    Withdrawals and drop-outs
    Some studies of behavioural interventions have reported significant rates of withdrawal from
    treatment or loss to follow-up, as high as 20–40% in some studies9596. This update did not find any
    new evidence of adverse effects (sufficient to cause withdrawal from treatment) associated with GET
    or CBT. However, reasons for withdrawals were often poorly reported and should be investigated in
    more detail in future studies. The new studies included in the update confirmed previous reports of
    withdrawals because of adverse events associated with immunological/antiviral and pharmacological

    Patients with severe CFS/ME
    There remains a lack of studies evaluating the effectiveness of interventions for patients severely
    affected by CFS/ME. The protocols for many clinical studies require patients to attend a clinic for
    treatment and/or assessment. These conditions may exclude people severely affected with CFS/ME
    from taking part. The balance between effectiveness and adverse effects of interventions may be
    different in more severely affected compared with less severely affected patients and methods of
    delivery/doses may need to be different. Research to evaluate the effectiveness of interventions for
    severely affected patients should be considered a priority."


    A total of 70 trials investigated the effectiveness of seven different categories of intervention:
    behavioural, immunological, antiviral, pharmacological, supplements, complementary/
    alternative and other.

    • Overall the interventions demonstrated mixed results in terms of effectiveness. All
    conclusions about effectiveness should be considered together with the methodological
    inadequacies in some of the studies.

    • Interventions which have shown evidence of effectiveness include CBT and GET.
    • There is insufficient evidence about how sub-groups of patients may respond differently to
    treatments and further studies investigating additional subgroups are needed.
    • In some of the included studies bed or wheelchair restricted patients and children have been
    excluded, which raises questions about the applicability of findings to all people with CFS/ME.
    • CBT and immunoglobulin G are the only interventions which have been investigated in young
    • There is insufficient evidence for additive or combined effects of interventions where more
    than one therapy is used.
    Future research could usefully compare CBT and GET and there is a need to evaluate the
    effectiveness of pacing, ideally in comparison to CBT and GET."

    Don't know how this conclusion came about!!!!

    Future research needs to combine scientific rigour with patient acceptability.
    • The large number of outcome measures used makes standardisation of outcomes a priority
    for future research."

    Having read their 'analyses' of the studies they selected for inclusion how they came up with their conclusions is baffling, but then I'm no 'expert'.

    find this very confusing:
    The remaining three RCTs reported a beneficial effect of CBT when compared to controls.22, 25, 26
    All three RCTs found a significant short term improvement in physical functioning, fatigue, and global improvement, but neither of the two studies that assessed depression found any differences between groups.22, 25

    One of these RCTs also followed patients for five years after the intervention.
    At the five year follow-up assessment global improvement was greater in the intervention group, as was the proportion of participants who completely recovered,23

    however, no differences were reported between the groups in terms of physical functioning, fatigue, general health, symptoms, relapses or
    the proportion of participants that no longer met the UK criteria for CFS."

    What does this mean?

    eta2: this is also an interesting document as it shows how they assessed/scored the research papers that were under consideration. Although, how the GDG finally came to the conclusion it did based on this evidence is another question.
    Last edited: Mar 27, 2018
    Jan likes this.
  2. Indigophoton

    Indigophoton Senior Member (Voting Rights)

    It sounds like classic BPS doublespeak. People said they felt better, and were even recovered according to our measure, but actually the objective evidence said otherwise.
    BruceInOz, Jan, Trish and 2 others like this.
  3. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    I really hope we have some good people on the GDG, or they'll pull the same nonsense evident in these minutes. In essence, evidence matters, except when they say it doesn't. And they use bureaucracy and 'methodology' to discount anything they don't like. The whole process, like the PACE minutes, reveals a complete mess designed to wear patient reps down and continue the status quo.

    What's most annoying is how truly ignorant most of them come across in these minutes, too. They witter on in zigzags of ideas, and they seem to have no self-awareness of their own limitations. Ego over education. There's not a truly critical thought among them.
    Hutan, TiredSam, BruceInOz and 4 others like this.
  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    review of his book on Amazon
    1.0 out of 5 stars Horrendous endorsement of the biggest unknown medical scandal of the 21st Century

    Reviewed in the United Kingdom on 24 July 2021

    The NICE draft guidelines (November 2020) state: “If anyone deserves an apology it is the people with ME/CFS, many of whom have experienced years of being told that their symptoms are “all in the mind” and given no meaningful medical management – mainly as a result /of the dominance of the psychosocial model of causation. As a result, progress involving biomedical research into the underlying cause of ME/CFS has been severely hampered.”

    The ME Association further clarifies, “The reason why people with ME/CFS feel angry and let down by the medical establishment stems from the fact that almost all biomedical research until recently has been funded by donations to the charity sector. Almost all government funding has gone into research based on a flawed psychosocial model of causation.”.

    These methods and paradigms of the Wessely School , PACE trial and the Brain Retraining Methods have prevented serious biochemical medical research into post-viral illness. We need immunologists not psychiatrists. 40 years of institutional abuse have occurred in this field. The underlying disease mechanism is not understood in ME because for decades the Behavioural Psychiatrists and Psychologists have fought for ME to be only located in their field, which has dominated funding, research, clinical guidelines and medical insurance.

    The PACE trial is one of the medical scandals equivalent to Andrew Wakefield, MMR and Autism. Patients campaigned for 5 years for the full data to be released and it was found to be substandard with the researchers making up data to fulfil their hypothesis.

    Bruce Levin, Biostatistician of Columbia calls this "the height of clinical trial amateurism,"
    Ronald Davis of Stanford says, "I’m shocked that the Lancet published it…The PACE study has so many flaws and there are so many questions you’d want to ask about it that I don’t understand how it got through any kind of peer review";
    Prof Jonathon Edwards of UCL says it "is an unblinded trial with subjective outcome measures. That makes it a non-starter in the eyes of any physician or clinical pharmacologist familiar with problems of systematic bias in trial execution."

    “The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.” ~ Valerie Eliot Smith 2019

    It is vital to not repeat the mistakes that were made with treating and diagnosing ME in Long Covid. It was through the faulty belief established through Behavioural Cognitive Psychology (Wessely School ) that ME was caused by deconditioning and patients had too much fear to be active therefore keeping themselves in a vicious circle, and that ME was a disease of psychiatric origin with the cause also being seen as mass hysteria.

    This is also known as the biopsychosocial model (BPS). Therefore GET (Graded Exercise Therapy) was prescribed to condition them and make them overcome their fear and psychological therapies were given such as CBT to help them change their negative thought and emotional processes about exercise. While on this programme, physical and diagnostic tests are also to be actively avoided. Receiving benefits or sick pay is also discouraged as this is seen as an obstacle to recovery."
    Last edited by a moderator: Aug 14, 2021
    Kirsten, Sean, Starlight and 8 others like this.

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