British Medical Journal Published: 11th Feb 2010

February 11, 2010

Posted by Cort Johnson

Discuss this article on the forums

Hope I am posting this OK (haven’t done it before…yikes!). Saw this on another website today and don’t think it has been brought up before…if it has I apologise.

The ME association are reportedly going to comment later in the week ……..

This editorial comment appeared in the British Medical Journal today (11 February 2010). It is written by Dr Alastair M Santhouse, Professor Matthew Hotopf and Professor Anthony David.

Published 11 February 2010, doi:10.1136/bmj.c738
Cite this as: BMJ 2010;340:c738

Editorials
Chronic fatigue syndrome

Defeatism among clinicians is undermining evidence that it can be treated

The recent acquittal of Kay Gilderdale, who had been charged with the attempted murder of her 31 year old daughter Lynn, has led to blanket press coverage this week. She was given a one year suspended sentence for the lesser charge of aiding and abetting suicide, to which she had earlier entered a guilty plea. The debate in the media has focused on the rights and wrongs of assisted suicide, the wisdom of bringing a prosecution for attempted murder, and whether the law needs to be changed.

Yet perhaps the most striking aspect of the case from the clinician’s point of view is the largely uncontested media portrayal of a condition referred to as chronic fatigue syndrome or myalgic encephalomyelitis (now commonly if unsatisfactorily called CFS/ME) as a progressive, paralysing, and commonly fatal illness. Little has been said in the media about the uncertainties and controversies that this diagnosis has always attracted. The details of the Gilderdale case and the coroner’s inquest and postmortem are not available to us, so it would be inappropriate to comment on this specific case, and as in any criminal case, the matter is best decided by judge and jury. However, general points are raised that merit comment, not least for professionals who will almost certainly have to manage similar challenges in the future.

The first and most obvious point is that severe presentations such as that of Lynn Gilderdale are fortunately unusual in CFS/ME, and clinicians should consider alternative diagnoses that would better explain the symptoms. But assuming that these alternatives have been ruled out, what is the excess mortality associated with CFS/ME? Data clearly show that mortality is not increased in patients diagnosed with this condition and that the greatest risk to life is likely to be suicide.(1) Many studies have shown that suicide is associated with depression, and that depression is associated with CFS/ME. People with a history of depression are more likely to get CFS/ME, (2) and vice versa.(3) (4) Whatever the direction of causality, nobody would dispute that depression can be treated, whether it occurs alongside life limiting cancer, motor neurone disease, or a diagnosis of CFS/ME.(5) Any patient with CFS/ME who openly talks about suicide should be reviewed by a psychiatrist because 90% of suicides are associated with a psychiatric diagnosis.(6) If a diagnosis of depression is made, treatment should be comprehensive, involving pharmacotherapy and appropriate psychotherapies, and patients should be monitored for response.

Treatments such as cognitive behavioural therapy and graded exercise therapy have been shown to work in CFS/ME in adults (7) and children (8) (for whom the outcome is generally more optimistic) and they are recommended for both groups by the National Institute for Health and Clinical Excellence (NICE).(9) The data are admittedly less robust for patients at the extreme end of the spectrum, although NICE guidelines assert that management of these patients may incorporate the principles of cognitive behavioural therapy and graded exercise therapy, and some evidence supports this.(10) Clinical experience indicates that in patients with severe CFS/ME such programmes may need to be adapted and prolonged, but that they can be the trigger for improvements and sometimes dramatic recovery. In contrast, the alternative to treatment is often no treatment, and this can have a disastrous effect on the patient, who may feel that the medical profession has given up on them as a hopeless case.

Unfortunately, an air of defeatism exists within the medical profession about this condition, particularly for those who are severely affected, and this is in danger of becoming a self fulfilling prophecy. Doctors are uncertain about what they are dealing with, they are generally reluctant to get involved, and perhaps inevitably a breakdown of trust between doctors and the patients and their families often occurs. The profession is often reluctant to engage in debate because, as Mr Justin Simon has observed, there is, “A perception that this is an area of medicine where contrary views are not to be voiced, and where scientific enquiry is to be limited, [that] is damaging to science and harmful to patients.” (11) There is even a view that emphasising the incurable and even fatal nature of CFS/ME is the only way to persuade the medical profession that it is a real illness.

Undoubtedly our current treatments could be improved, recovery may not be complete in many cases, and access to services for those too disabled to attend hospital clinics needs to be improved. Physiotherapy, psychology services, community support, and dietetic advice may all have a part to play in the management of severe CFS/ME, and support for the family may be necessary, particularly when children are affected. The influence of the internet in shaping suicidal behaviour in young people is a new danger for families and clinicians.(12) The medical profession must continue to go with the evidence in choosing treatments, in what can be a fraught clinical situation. We owe it to our patients and to our professionalism to do what we can to help those with this potentially treatable condition because, notwithstanding the difficulties, this is our primary duty.

Cite this as: BMJ 2010;340:c738

Alastair M Santhouse, consultant in psychological medicine (1), Matthew Hotopf, professor of general hospital psychiatry (2), Anthony S David, professor of cognitive neuropsychiatry3

(1) South London and Maudsley NHS Foundation Trust, York Clinic, Guy’s Hospital,
London SE1 3RR , (2) King’s College London, Department of Psychological
Medicine, Institute of Psychiatry, Weston Education Centre, London SE5 9RJ, (3)
Section of Cognitive Neuropsychiatry, PO Box 68, Institute of Psychiatry,
King’s College, London SE5 8AF

Competing interests: All authors have completed the Unified Competing Interest form at www.icmje.org/coi_disclosure.pdf (available on request from the corresponding author) and declare: (1) No financial support for the submitted work from anyone other than their employer; (2) No financial relationships with commercial entities that might have an interest in the submitted work; (3) No spouses, partners, or children with relationships with commercial entities that might have an interest in the submitted work; (4) AS was a member of the NICE guideline development group for the CFS/ME guidelines; MH and ASD have no non-financial interests that may be relevant to the submitted work. Provenance and peer review: Commissioned; not externally peer reviewed.

References

Smith WR, Noonan C, Buchwald D. Mortality in a cohort of chronically fatigued patients. Psychol Med 2006;36:1301-6.[CrossRef][Web of Science][Medline]

Harvey SB, Wadsworth M, Wessely S, Hotopf M. The relationship between prior psychiatric disorder and chronic fatigue: evidence from a national birth cohort study. Psychol Med 2008;38:933-40.[Web of Science][Medline]

Katon WJ, Buchwald DS, Simon GE, Russo JE, Mease PJ. Psychiatric illness in patients with chronic fatigue and those with rheumatoid arthritis. J Gen Intern Med 1991;6:277-85.[Web of Science][Medline]

Walford GA, Nelson WM, McCluskey DR. Fatigue, depression, and social adjustment in chronic fatigue syndrome. Arch Dis Child 1993;68:384-8.[Abstract/Free Full Text]

National Institute for Health and Clinical Excellence. NICE Clinical Guideline 91: Depression in adults with a chronic physical health problem. 2009. http://guidance.nice.org.uk/CG91/QuickRefGuide/pdf/English

Foster T, Gillespie K, McClelland R. Mental disorders and suicide in Northern Ireland. Br J Psychiatry 1997;170:447-52.[Abstract/Free Full Text]

Chambers D, Bagnall AM, Hempel S, Forbes C. Interventions for the treatment, management and rehabilitation of patients with chronic fatigue syndrome/myalgic encephalomyelitis: an updated systematic review. J R Soc Med
2006;99:506-20.[Abstract/Free Full Text]

Stulemeijer M, de Jong LW, Fiselier TJ, Hoogveld SW, Bleijenberg G. Cognitive behaviour therapy for adolescents with chronic fatigue syndrome: randomised controlled trial. BMJ 2005;330:14.[Abstract/Free Full Text]

National Institute for Health and Clinical Excellence. NICE clinical guideline 53: Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy). 2007. www.nice.org.uk/CG53.

Essame CS, Phelan S, Aggett P, White PD. Pilot study of a multidisciplinary inpatient rehabilitation of severely incapacitated patients with the chronic fatigue syndrome. J Chronic Fatigue Syndr 1998;4:51-60.

R (Fraser and Short) v NICE Case numbers CO/10408/2007 and CO/10435/2007 (2009).

Biddle L, Donovan J, Hawton K, Kapur N, Gunnell D. Suicide and the internet. BMJ 2008;336:800-2.[Free Full Text]

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