Thursday, 25 March 2010

Informed refusal is NOT defeatism!

Some very interesting 'rapid responses' here to the BMJ 'defeatism' editorial comment. The essence of the comment is that we should all just perk up and jolly well embrace CBT and GET because after all ME doesn't cripple and kill that many people, and most of the people it kills die by suicide, so it's our own fault for not being guided by those nice psychologists who want to adjust our attitudes.

This unpublished response on the Invest in ME site also rang so many bells with me that I want to repost it here. I feel it admirably shows how supporters of 'it's all in their minds' are reacting to evidence contradicting them by simply repeating more often and more loudly their group-think - and why not, since it seems to be working :(

Submitted to 15 Feb 2010 12.47 GMT, as a Rapid Response to:

Alastair M Santhouse, Matthew Hotopf, and Anthony S David
Chronic fatigue syndrome
BMJ 2010; 340: c738
Reasons for Patient Disenchantment.
Horace A Reid,
Ill-Health Retired

Co. Down

Santhouse et al. congratulate themselves that research done by their colleagues at King’s College has underpinned the principal recommendations in NICE Guideline CG53.[1] As he has stated, Santhouse was himself a member of that Guideline Development Group.

In fact the NICE GDG was frequently at odds with senior staff at King’s CFS Research and Treatment Unit. In 2007 NICE concluded that “Currently, the aetiology of CFS/ME remains unknown”; (Guideline CG53 p 69). But Professor Trudie Chalder, head of the King’s team of which Santhouse[2] is part, disagrees. She has stated unequivocally that CFS is a “classical psychosomatic disorder.”[3] Chalder is a registered nurse, specialising in CBT. In 2006 NICE emphatically refused to endorse any of the myriad theories that CFS/ME is a psychiatric entity.[4] But Professor Simon Wessely, Santhouse’s colleague at the King’s CFS unit, has long suggested the contrary. By resort to means of continual repetition, Wessely’s “functional somatic” hypothesis [5] has in many quarters acquired the status of scientific fact.
NICE was not persuaded by lengthy submissions from King’s [6] that depression is a predisposing factor for CFS/ME. The GDG dismissed this claim in two curt sentences; (CG53 p 155). But in this present BMJ editorial, Santhouse et al. try to resurrect their self-serving theory that CFS and depression are integral.[7] In a press release in 2008, Professor Chalder claimed a 25% complete cure rate for CFS patients at the unit where she and Santhouse work.[8] In 2006 and 2007 NICE carefully distanced itself from such optimistic promises. The GDG said rates of full recovery are actually as low as 5-10%, [CG53 p 71] and warned that raising false hopes among patients would lead to disappointment.[9]
In 2006 Chalder and others claimed that “Cognitive behavioural therapy and graded exercise therapy have been shown to be effective in restoring the ability to work in those who are currently absent from work.”[10] In 2007 NICE demurred: “There is a lack of studies in this area … More information is needed on functional outcomes such as return to work or education.” (CG53 p 61)
Santhouse et al. describe CBT and GET as “treatments” for CFS/ME. As defined by NICE they are much less than that. They are merely techniques to help patients cope with an intractable and so far untreatable condition. In the words of NICE: “The GDG did not regard CBT or other behavioural therapies as curative or directed at the underlying disease process, which remains unknown. Rather, such interventions can help some patients cope with the condition"; (CG53 p 252).
The authors seem to suggest that evidence for the efficacy of CBT/GET is “robust” for most of the patient spectrum. But Santhouse knows very well it is not robust. In a 2009 commentary on a Cochrane Review, he conceded that with only 40% of CFS patients benefiting from CBT/GET, the cumulative results “are more modest than its proponents would recognize.”[11] More damningly, he acknowledged the Cochrane finding[12] that the known and frequent adverse events associated with the GET/CBT combination, have never been scientifically evaluated. As Santhouse put it, “researchers have never really looked.”[11]
Santhouse et al. record that “often” there is “breakdown of trust between doctors and the patients and their families”. This is a shameful situation, but it was predictable. And eleven years ago it was predicted, by a leading American CFS researcher.[13] His warning came in response to Professor Wessely’s “functional somatic” hypothesis, then first published.[5]
The unattractive treatment philosophy currently obtaining at King’s deviates significantly from NICE guidance. Nevertheless it has been assiduously propagated, and has now been embraced across many parts of the UK. It is ironic that a number of valuable NICE recommendations remain unimplemented, while psychogenic theories proliferate. Nor is that any coincidence. It is easier, and cheaper, for doctors and social services to ignore and stigmatise severely-affected housebound patients like Lynn Gilderdale, than to provide the comprehensive range of home support services that NICE recommended. Such is the pervasive unwelcoming atmosphere in much of the NHS, that many thousands of ME patients have disconnected altogether from conventional medical care. Their fears of iatrogenic harm are well justified, given the hazardous, poorly-tested and unproven nature of the only “treatments” on offer.
Comments in reference to Professor Wessely made by Professor Jason in 1999 could equally provide enlightenment for Santhouse et al. in 2010: “Biases toward psychiatric explanations for these syndromes have been filtered to the media … Perhaps the dissatisfaction with medical care that the authors cite as a common theme among patients with these syndromes, is the stigma they endure due to the trivialization ...”[13]
Horace Reid.
[1] Turnbull N, Shaw EJ, Baker R, Dunsdon S, Costin N, Britton G, Kuntze S and Norman R (2007). Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) in adults and children. London: Royal College of General Practitioners.

[2] Who’s Who, Staff in the Chronic Fatigue Syndrome Research and Treatment Unit, King’s College, 2010.
[3] Advertisement (ref. 07/R68) for a research worker, Institute for Psychiatry at the Maudsley, placed by Professors Ulrike Schmidt and Trudie Chalder, July 2007.
[4] “Specifically, the GDG does not state that ME/CFS is a behavioural disorder, a psychiatric illness, a somatic/functional disorder, an illness belief, depression or anxiety disorder”. GDG response to Stakeholders’ Comments 2006: Chapter 5 p 45.
[5] Prof S Wessely, C Nimnuan, Dr M Sharpe. Functional somatic syndromes: one or many? The Lancet, Volume 354, Issue 9182, Pages 936 - 939, 11 September 1999,
[6] GDG response to Stakeholders’ Comments 2006; Chapter 1 pp 71-8.
[7] Santhouse AM, Hotopf M, David AS. Chronic Fatigue Syndrome. BMJ 2010;340:c738
[8] Press release, 12/5/2008, South London & Maudsley NHS: “Telephone Treatments for People With ME”.
[9] GDG response to Stakeholders’ Comments 2006; Chapter 6 p 308.
[10] Occupational Aspects of the Management of Chronic Fatigue Syndrome: a National Guideline, NHS Plus, 2006.
[11] Review: CBT reduces fatigue in adults with chronic fatigue syndrome but effects at follow-up unclear, Alastair M Santhouse (commentator), Evid. Based Ment. Health 2009; 12: 16.
[12] Price JR, Mitchell E, Tidy E, Hunot V. Cognitive behaviour therapy for chronic fatigue syndrome in adults. Cochrane Database of Systematic Reviews 2008; Issue 2. Art No.: CD001027.
[13] Leonard A. Jason, Renee R. Taylor, Sharon Song, Cara Kennedy, Danielle Johnson, Dangers in Collapsing Disparate Syndromes, Lancet, Correspondence, Volume 354, Number 9195, 11 December 1999.

Competing interests: Patient with ME/CFS

Last Updated: 02/03/2010

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