An unpublished yet very informative response to the BMJ article on CFS
This was posted on MEActionUK earlier - an excellent response imo which doesn't appear to have been published.
Permission to Repost
http://www.meactionuk.org.uk/reasons-for-patient-disenchantment.htm
Submitted to BMJ.com 15 Feb 2010 12.47 GMT, as a Rapid Response to:
EDITORIALS:
Alastair M Santhouse, Matthew Hotopf, and Anthony S David
Chronic fatigue syndrome
BMJ 2010; 340: c738
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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.
References:
[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
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Read more rapid responses on the eBMJ website
http://www.bmj.com/cgi/eletters/340/feb11_1/c738#231202