Saturday, February 20, 2010

Reasons for Patient Disenchantment

Alastair M Santhouse, Matthew Hotopf, and Anthony S David
Chronic fatigue syndrome
BMJ 2010; 340: c738

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


Anonymous said...

I feel disenchanted but also disenfranchised, it's like being a leper in the middle ages the way CF/ME patients are currently treated by modern society.

Anonymous said...

Three blind psychiatrists
Three blind psychiatrists
See how they bluff
See how they spin
They're all pat each other's backs
Following unproven, outdated tracks
Were any so ignorant of scientific facts
As three blind psychiatrists?

Anonymous said...

the BMJ have not published Invest in ME's response

perhaps you could be kind enough to do so Dr Speedy?

"It is easy to see how the "strange conflation" to which Professor Broome refers would, of course, create a sense of unease in psychiatrists such as himself and his more prominent peers. Chronic fatigue may not be a terminal illness but myalgic encephalomyelitis can be.

The media generally do not portray the condition as a "progressive, paralysing, and commonly fatal illness". Normally the media follow the propaganda which elements in King’s College have continuously promoted since the late eighties.

If people with ME had only "bed sores, chest infection and malnourishment" to contend with then the rest of the patient population would not have to endure the consequences of the stranglehold which psychiatrists have on this illness – which is at the expense of patients and despite more and more evidence showing ME to be a serious and progressive biological condition.

Any pessimism exhibited by those with this illness finds its source not in the condition itself but in the ignorance and mendacity of those who engineer scarce funding from the MRC in order to support the pretence that ME is a somatoform condition, or who publish research based on flawed diagnostic criteria. In fact those suffering the tremendous disability of severe ME are surprisingly optimistic despite the travails of having to deal with prejudice from the some parts of the medical profession and the media.

To use NICE as an example for promoting the use of CBT and GET is risible and perverse, yet entirely predictable. The fact that 90% percent of ME support groups opposed NICE, the fact that ME patients took NICE to a judicial review in protest at their guidelines for ME, the fact that the only support that NICE could muster from those supposedly supporting the ME community were from organisations that accept government money and who themselves organise “psychosocial conferences” on ME – all of this illustrates the lack of confidence which people with ME and their families have for NICE.

And yet NICE is supposedly there to guarantee excellence in clinical practices.

But we have long since gone past the point where a small section of psychiatrists influencing NICE can really persuade anyone that CBT and GET are serious answers to a neurological illness – we just have to wait for the psychiatrists to catch up or, more likely, be left by the wayside as real science establishes beyond doubt the pathology of this illness.

Patients and their families are increasingly aware of this policy-based evidence making which NICE and those who dominate the MRC promote based on the policies of the last generation which funds only research projects on ME which promote the psychosocial view of its aetiology.

The problem with the treatment of ME in the UK is essentially, as Professor Broome’s posting demonstrates, down to poor education about the condition and this stems from the education of medical students and continues, for many doctors, through their years of practice. It is also heavily influenced by biased research

Anonymous said...



If one is fed a constant diet of biased research then one can expect little more than ignorance to exist.

But there is hope as biomedical research into ME is on display at the annual Invest in ME biomedical research conferences which take place in Westminster in May – with its theme of Education of Healthcare Staff. Dr Broome could attend this conference on 24th May and clearly see how privately-funded biomedical research is progressing and showing the effects of ME – from cardiomyopathy to viral persistence and, from the latest research by the Whittemore-Peterson Institute, to the discovery of a link between the XMRV retrovirus and ME. Hardly just bed sores and chest pains!

There really is a great deal of catching up to do for some sections of the medical profession with regard to ME.

With one of the lead researchers on XMRV in attendance at this year’s conference perhaps the editor of the BMJ could also attend the conference and write an informative, unbiased article about it for the readers of this journal. The invitation is there.

Ultimately, education really is a progressive discovery of one’s own ignorance."

Invest In ME

Registered charity number 1114035

Support ME awareness -

Anonymous said...

Thanks, Dr Speedy, for sharing this great letter with us. Being so sick with ME makes it impossible as individuals to keep up with the war we need so desperately to win.
Your blog allows me to keep somewhat in touch so know I am not so alone and vulnerable. The disease I can manage, the socio-political and economic disempowerment I cannot fight.


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