Review: Chronic fatigue syndrome

Prins JB, van der Meer JW, Bleijenberg G. Invited Review: Chronic Fatigue Syndrome.
The Lancet - Vol. 367, Number 9507, 28 January 2006, Pages 346-355
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CFS, Benefits, & the Creation of Stigma

February 13 2006

Ian McIlroy, Patient, N/A.

What is it with a small group of mental health academics, who continually hint that CFS patients are some kind of malingerers?

Prins et al. allege that some CFS patients "might have a hidden agenda involving insurance issues and invalidity-benefit claims". When patients are ill and cannot work, they need financial assistance. The state benefit system was created for that purpose. CFS patients meeting designated criteria are entitled to claim. Why do Prins et al. have a difficulty with that?

They speak of "financial benefits, which might be considered perpetuating factors" in CFS. In 2002 Professor Michael Sharpe made similar comments. "Both state and private insurers pay people to remain ill", he told UnumProvident doctors.(1) In 2002 Professor Richard Bentall (who possibly confuses association with causation) suggested that CFS patients on incapacity benefit received "secondary gains from illness".(2)

These theories do not fall within the national or international consensus. Despite that, in some quarters they are accepted as scientific fact, and are used to shape policy.

In 2002 Dr. Mansel Aylward revealed that the DWP did not accept the consensus findings of the CMO's working group on CFS. However the Department was receptive to the philosophy of those psychiatrists who resigned from the CMO's group in 2001. "The Department of Work and Pensions doesn't necessarily endorse all that is in the Working Party's report to the Chief Medical Officer. I am also mindful of the views of those who ... distanced themselves from some aspects of the report", he said.(3) Dr. Aylward was then Chief Medical Advisor to the DWP.

The same year, one researcher found that CFS patients experienced disproportionate difficulty when dealing with the DWP. Adjudicating Officers were "likely to be influenced by the stigma attached to CFS/ME." "The indication is that many claimants with CFS/ME are categorized as 'unworthy'" within the DWP, she observed.(4) It would be disturbing if this departmental culture were rooted in the kind of medical advice the DWP seems to prefer.

In 2005 Dr. Peter White, a psychiatrist who resigned from the CMO's group in 2001, was one of those tasked with revising DWP medical guidance on CFS. The resulting draft dismayed UK patient charities, who have successfully sought revisions.

In 1996 the Royal College of Psychiatrists warned that CFS patients should not be blamed for being ill.(5) A decade later they are still deemed culpable, and additionally are now blamed for not getting better.

(1) Trends in Health and Disability, Chief Medical Officer's Report, UnumProvident 2002.

(2) Bentall R P, Powell P, Edwards R H T, Predictors of response to treatment for chronic fatigue syndrome. British Journal of Psychiatry 181: 248-252 2002.

(3) White P (ed), "Biopsychosocial Medicine: An integrated approach to understanding illness", (Oxford 2005) ch.12, p.221.

(4) Hammond C, A Poorly Understood Condition: Disability Living Allowance and People with CFS/ME. Social Policy & Administration, 36:3, 2002, 254-274.;

(5) Chronic Fatigue Syndrome. Report of a joint working group of the Royal Colleges of Physicians, Psychiatrists, and General Practitioners, October 1996, para 9.2.

Competing Interests: Patient with ME