Commentary: Heading for a therapeutic stalemateBMJ 2011; 342 doi: https://doi.org/10.1136/bmj.d3774 (Published 22 June 2011) Cite this as: BMJ 2011;342:d3774
All rapid responses
Sinan Eccles does not understand the difference between the form of
CBT offered to other illness groups, and that offered to ME/CFS patients
and advocated as effective by the PACE trial paper and CFS/ME clinics. I
copy below an excerpt from the PACE results, describing the form of CBT
used. (1, page 3).
"Cognitive behaviour therapy (CBT)
CBT was done on the basis of the fear avoidance theory of chronic fatigue
syndrome. This theory regards chronic fatigue syndrome as being reversible
and that cognitive responses (fear of engaging in activity) and
behavioural responses (avoidance of activity) are linked and interact with
physiological processes to perpetuate fatigue. The aim of treatment was to
change the behavioural and cognitive factors assumed to be responsible for
perpetuation of the participant's symptoms and disability."
The irony is that the real life experience of people with the
neurological disease myalgic encephalomyelitis shows that ignoring their
symptoms and engaging in activity beyond their very limited capabilities
is the way to aggravate the disease. Many severe, bed-bound patients date
their decline into full-care status to taking part in Graded Exercise and
this form of CBT which challenges their "false illness beliefs".
1 White, PD; Goldsmith, KA; Johnson, AL et al Comparison of adaptive
pacing therapy, cognitive behaviour therapy, graded exercise therapy, and
specialist medical care for chronic fatigue syndrome (PACE): a randomised
trial; The Lancet, Early Online Publication, 18 February
Competing interests: I'd like some effective treatment.
The lack of enthusiasm for CBT devised for ME/CFS is not a result of
ignorance or prejudice. The problem is that the actual protocols described
in the scientific literature are not 'adjuncts' for those with depression
or other psychological problems associated with chronic disease. The CBT
is generally not part of a tailor-made, multi-component programme to help
improve coping. As far as ME/CFS is concerned, it is being promoted as a
first line treatment for all, as used for OCD or phobias. Imagine having
MS or cancer and the only therapy on offer is CBT and advice on exercise.
What is particularly frustrating is there are other, more flexible
and acceptable treatments for ME/CFS. Moreover, as all the tested
interventions tend to be equally effective and outcomes appear to be
mediated largely by increases in self-efficacy, practitioners and patients
can choose one and proceed to another depending on personal preferences
and changing circumstances. NICE should have reviewed the guidelines to
increase the available therapeutic options, but they declined. The
evidence was there; but the willingness to evaluate it was not. Courteous,
well referenced letters had no effect. No wonder then, that a few 'angry
young men' and their friends began to lash out. That they also ended up
attacking those on their side was collateral damage. If decision makers
don't listen to reasonable arguments, if groupthink leaves severely
disabled people with an inappropriate treatment which at best has a modest
effect on tiredness and one's ability to carry a sack of potatoes, anger
is an entirely understandable response.
The solution is more respect for those with a different approach,
more communication with a wider group of experts, better diagnostic
criteria as well as longitudinal studies including brain scans and a
comprehensive assessment of the immune system. And needless to say, we
need and deserve an immediate updating of the guidelines by NICE.
EM Goudsmit FBPsS
Competing interests: Health psychologist with specialist knowledge of ME and CFS. I requested a review of the NICE guidelines, giving details of new evidence that met their criteria.
One of the reasons many patients with myalgic
encephalomyelitis/chronic fatigue syndrome (ME/CFS) may not try cognitive
behavioural therapy (CBT) or graded exercise therapy (GET) is because they
are not convinced they have been "shown to be effective and safe".
Randomised controlled trials (RCTs) have tended to use subjective
outcome measures which can be subject to various response biases; results
may differ dramatically when objective measures are employed. For example,
in the PACE Trial, a mean 6-minute walking distance of 379m following GET
is far from impressive; while the small improvement obtained following
("effective") CBT was no different to the change for the remaining two
Regarding safety claims: with pharmacological agents, systems such as
the yellow card scheme exist to collate adverse reactions; no similar
structures exist for non-pharmacological interventions such as CBT and
GET. Thus authorities may believe that no harms have occurred in clinical
practice when in fact, in patient surveys, a relatively high percentage of
ME/CFS patients have reported being made worse by rehabilitative
approaches, particularly GET[3,4].
Given all this, the fact that reporting of harms has been poor in
previous RCTs and the recognised abnormal response to exercise in the
condition, ME/CFS patients should be free to refuse CBT and GET without
1. Groves T. Heading for a therapeutic stalemate BMJ 2011; 342:d3774
2. Kindlon T. The PACE trial in chronic fatigue syndrome. Lancet.
3. Kindlon T, Goudsmit EM. Graded exercise for chronic fatigue
syndrome: too soon to dismiss reports of adverse reactions. J Rehabil Med.
4. Twisk FN, Maes M. A review on cognitive behavorial therapy (CBT)
and graded exercise therapy (GET) in myalgic encephalomyelitis
(ME)/chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and
not evidence-based, but also potentially harmful for many patients with
ME/CFS. Neuro Endocrinol Lett 2009;30:284-299
5. 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
Competing interests: No competing interests
Whilst the debate on the cause of ME/CFS continues [1-2], some of the
controversy regarding the use of cognitive behavioural therapy (CBT) in
this condition strikes me as odd. Any chronic disease with such an impact
on quality of life is bound to have emotional and psychological effects on
a significant proportion of patients, regardless of whether the underlying
condition has a "physical" or "psychological" cause. CBT has been shown
to have beneficial effects on quality of life and other outcomes in many
"physical" conditions, including heart failure and COPD [3-4], rheumatoid
arthritis , migraine  and multiple sclerosis  amongst others.
Whilst ME/CFS sufferers should of course be entitled to decline CBT
without prejudice, I hope that this is not becuase they feel that its use
implies a psychological underlying cause and "devalues" their illness in
1. Hawkes N. Dangers of research into chronic fatigue syndrome. BMJ
2. Groves T. Ending the stalemate over CFS/ME. BMJ 2011; 342:d3956
3. Cully JA, Stanley MA, Deswal A, Hanania NA, Phillips LL, Kunik ME.
Cognitive-behavioral therapy for chronic cardiopulmonary conditions:
preliminary outcomes from an open trial. Prim Care Companion J Clin
4. Gary RA, Dunbar SB, Higgins MK, Musselman DL, Smith AL. Combined
exercise and cognitive behavioral therapy improves outcomes in patients
with heart failure. J Psychosom Res. 2010 Aug;69(2):119-31.
5. Sharpe L, Allard S, Sensky T. Five-year followup of a cognitive-
behavioral intervention for patients with recently-diagnosed rheumatoid
arthritis: effects on health care utilization. Arthritis Rheum. 2008 Mar
6. Mathew NT. Dynamic optimization of chronic migraine treatment:
current and future options. Neurology. 2009 Feb 3;72(5 Suppl):S14-20.
7. Cosio D, Jin L, Siddique J, Mohr DC. The effect of telephone-
administered cognitive-behavioral therapy on quality of life among
patients with multiple sclerosis.
Ann Behav Med. 2011 Apr;41(2):227-34.
Competing interests: No competing interests