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    Inquiry by The Parliamentary Group On Scientific Research Into M.E

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    This document discusses diagnostic labels, treatments, and the need for further research for Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). It summarizes that mind and body are indivisible, current treatments help most but not all patients, and more research is needed to better understand the heterogeneous causes and outcomes. The researcher proposes substantial ring-fenced funding and a multi-disciplinary research program to better test the biopsychosocial model of ME/CFS.

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    Inquiry by The Parliamentary Group On Scientific Research Into M.E

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    27 views19 pages
    This document discusses diagnostic labels, treatments, and the need for further research for Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). It summarizes that mind and body are indivisible, current treatments help most but not all patients, and more research is needed to better understand the heterogeneous causes and outcomes. The researcher proposes substantial ring-fenced funding and a multi-disciplinary research program to better test the biopsychosocial model of ME/CFS.

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    This document discusses diagnostic labels, treatments, and the need for further research for Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). It summarizes that mind and body are indivisible, current treatments help most but not all patients, and more research is needed to better understand the heterogeneous causes and outcomes. The researcher proposes substantial ring-fenced funding and a multi-disciplinary research program to better test the biopsychosocial model of ME/CFS.

    Copyright:

    © All Rights Reserved
    Download as PDF, TXT or read online from Scribd
    Download as pdf or txt
    27 views19 pages

    Inquiry by The Parliamentary Group On Scientific Research Into M.E

    Uploaded by

    api-257817850
    This document discusses diagnostic labels, treatments, and the need for further research for Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). It summarizes that mind and body are indivisible, current treatments help most but not all patients, and more research is needed to better understand the heterogeneous causes and outcomes. The researcher proposes substantial ring-fenced funding and a multi-disciplinary research program to better test the biopsychosocial model of ME/CFS.

    Copyright:

    © All Rights Reserved
    Download as PDF, TXT or read online from Scribd
    Download as pdf or txt
    of 19

    Inquiry by the Parliamentary

    Group on scientific research into


    M.E.
    Presentation by Prof Peter White
    Barts and the London,
    Queen Mary School of Medicine and
    Dentistry

    Agenda
    Diagnostic labels and Cartesian dualism
    The role of infections
    Treatment with graded exercise therapy
    The PACE trial
    Research proposal

    Diagnostic confusion
    Myalgic Encephalomyelitis (ME)
    Chronic Fatigue Syndrome (CFS)
    Psychiatric or physical?
    Mind - body dualism is rife, but inconsistent
    with our understanding of how the body
    works
    Heterogeneity is likely.

    Research criteria

    Oxford criteria
    Centers for Disease Control criteria
    London ME criteria
    (Canadian clinical criteria)

    Canadian description
    Clinical criteria
    Difficult to use them for research:
    Ambiguous and not properly operational
    Mixes symptoms and signs
    Require measurements that are neither
    indicated nor practical
    Includes other syndromes

    The role of infection in CFS/ME


    Certain infections can trigger both
    prolonged fatigue and CFS/ME, whereas
    others do not.
    Post-IM fatigue syndrome has been shown to
    be a discrete illness, delineated from others

    Fatigue in the year before and after


    infection

    Prevalence (%) of fatigue 6/12 after infection

    Predictors of post-IM fatigue


    syndrome
    Factor

    1 month

    2 mths

    6 mths

    Mono +
    Fitness

    1.8
    0.3

    2.5
    0.3

    2.1
    0.4

    Post-IM fatigue
    70 % of GPs only advice is to rest
    Inactivity most replicated predictor of
    prolonged fatigue
    Educational intervention, based on graded
    return to activity, halved the incidence of
    prolonged fatigue

    Graded Exercise Therapy


    GET is based on the illness model of both
    deconditioning and exercise avoidance. Therapy
    involves:
    an assessment of physical capacity
    negotiation of an individually designed home
    exercise programme: duration, then intensity
    target exercise durations and heart rates
    sessional feedback with mutual planning of the
    next periods home exercise programme

    Percentage improved with GET

    Percentage improved with GET

    Controversies in treatment
    Some patients reject or drop out of
    rehabilitation, believing that GET is damaging.
    GET (& CBT) have been shown to be
    efficacious only in small trials.
    They have never been compared to specialist
    medical care or pacing.
    We do not know the best treatment; for whom;
    nor how they work.

    Questions of the PACE trial


    Is either cognitive behaviour therapy (CBT)
    or GET more efficacious than pacing?
    Are any of these treatments better than
    specialist medical care alone?
    What predicts successful treatment?
    What is the essential process of treatment?
    Cost-effectiveness and cost-utility

    600 patients in secondary care


    SSMC

    APT + SSMC

    CBT + SSMC

    GET + SSMC

    F.U. til 12/12

    F.U. til 12/12

    F.U. til 12/12

    F.U. til 12/12

    Research proposal 1
    A better understanding of CFS/ME, its causes
    and outcome will need research that takes
    into account:
    Its heterogeneity
    Its likely multiple and interacting causes,
    which incorporate biological, psychological
    and social factors

    Research proposal 2
    Substantial ring-fenced funding
    A competitive call for five year programme
    proposals, which include clinicians and
    scientists from different disciplines so that
    the biopsychosocial model can be tested.
    Decided and administered by the MRC to
    ensure the best quality science.

    Summary
    Mind and body are indivisible.
    We understand more, but more research is
    required.
    There are treatments that help the majority,
    but more research...........
    Ring fence some money and the scientists
    will follow.

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