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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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