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General practitioners' perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: qualitative study

BMJ 2004; 328 doi: https://doi.org/10.1136/bmj.38078.503819.EE (Published 03 June 2004) Cite this as: BMJ 2004;328:1354

Re: Medical correctness and evidence based medicine

Dear Sir

We were rather concerned in turn to read the correspondence by White
et al. Firstly, we would like to point out that valid criticism backed by
references does not constitute denigration.

We note that the authors do not give references for their systematic
reviews that allegedly present the ‘benefits’ of CBT/GET as outweighing
what are now known to be significant risks.

The latest consensus document produced under the auspices of Health
Canada (1) by an international panel of nearly a dozen expert physicians
who have between them treated/diagnosed over 20,000 ME/CFS patients have
made a number of serious critiques of CBT/GET and states that as few as 5%
of the patients studied meet the criteria for somatisation disorder. They
have also discussed a key issue of post-exertional malaise, that is, a
worsening of the condition after physical and mental exertion. This has
unfortunately sometimes been left unaddressed in the literature supporting
CBT/GET.

In a British study (2), 1,214 of 2,338 patients had tried graded
exercise. 417 found it to be helpful, 197 reported no change and 610 (50%)
indicated that it made their condition worse. This was the highest
negative rating of any of the pharmacological, non-pharmacological and
alternate approaches of management and may help explain the high drop out
rates noted in some of these programmes. Some patients who enter these
studies are so badly damaged by CBT/GET that the results of these
treatments place them in wheelchairs for years.

It is interesting to note that in the treatment review by Whiting et
al (3), all the CBT and GET studies that indicated improvement used the
less restrictive Oxford criteria with the exception of the Prins study (4)
that used the CDC criteria for prolonged fatigue but eliminated the other
CDC criteria. All studies excluded ME/CFS patients who were too ill to
regularly attend treatment sessions. The complexity of CBT studies, the
most varied inclusion and exclusion criteria, the very limited portions
that can be properly blinded and the subjective means used for most
evaluations places firmly into question the validity of the results.

In March 2001, the charity Action for ME carried out a survey of
2,338 respondents entitled “Severely Neglected - M.E. in the UK” that
clearly showed that “graded exercise was reported to be the treatment that
had made most people worse.”

Furthermore, most CBT/GET trials that claim success have been
criticised for the heterogeneous population in their samples so that
ME/CFS sufferers are mixed in with idiopathic sufferers of chronic fatigue
(mental disorder F 48). There are many ME/CFS patients who by definition
of the illness are not ambulant and are therefore not included in any
studies.

We think that it is vital to bring to people’s attention that there
have been serious methodological and theoretical flaws and concerns
expressed about some of the trials that White et al may be referring to.
Since these have not been referenced it is difficult to comment. We note
that these published audits have not been referenced.

Our concern is that medical treatments that may cause serious damage
and in some cases demonstrably so, will be tested on even more vulnerable
groups such as the severely affected and children and young people.

The British ME/CFS community has been extremely concerned over the
years at the lack of funding for biomedical research into this illness.
This is particularly ironic since psychiatry has had a disproportionate
amount of government funding in regard to what is recognised and
classified by the World Health Organisation and the UK government as an
organic brain disease - ME/CFS (ICD-10 G93.3)

We therefore would presume that White et al would welcome more money
being spent on biomedical research instead of psychiatric management
regimes and treatments that have been comprehensively shown to at best
make little difference and at worst, damage the health of many sufferers.

Yours faithfully,

Jane Bryant and Angela Kennedy

REFERENCES

1. Carruthers et al (2003) “ Myalgic Encephalomyelitis/chronic
Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and
Treatment Protocols” Journal of Chronic Fatigue Syndrome, VO. 11 (1) 2003.

2. Sheperd C. Pacing and exercise in chronic fatigue syndrome.
Physiother 2001 Aug;87(8):395-396.

3. Whiting P, Bagnall AM, Sowden AJ, Cornell JE, Mulrow CD, Pamirez
G. Interventions for the treatment and management of chronic fatigue
syndrome.A systematic review. JAMA 2001Sep 19;286(11):1360-1368.

4. Prins JB, Bleijenberg G, Bazelmans E, Elving L, de Boo TM, et
al. Cognitive behaviour therapy for chronic fatigue syndrome; a
multicentre randomised controlled trial. Lancet Mar 17, 2001;357:841-847.

Competing interests:
None declared

Competing interests: No competing interests

08 June 2004
Jane Bryant and Angela Kennedy Bryant & Kennedy
Directors, The One Click Group. (Pressure Group for ME/CFS ICD-10 G93.3)
Jane Bryant and Angela Kennedy Bryant & Kennedy
London W3