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 dualismThe role of infectionsTreatment with graded exercise therapyThe PACE trialResearch proposal
Diagnostic confusionMyalgic 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 + 1.8 2.5 2.1Fitness 0.3 0.3 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 heterogeneityIts likely multiple and interacting causes,
which incorporate biological, psychological and social factors
Research proposal 2
Substantial ring-fenced fundingA 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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