Facebook post  by Tom Kindlon, 24 July 2016: ME/CFS Patient Organisations should be free to not promote CBT and GET for ME/CFS and the models underlying them

As somebody involved in running a myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patient organisation which might be seen to have been criticised by this paper, [by P White et al] I would like to take the opportunity to respond.

The paper seems to be largely based on an appeal to authority. However, the history of medicine is replete with examples of situations where views on the aetiology and pathophysiology of conditions, and how they should be treated, particularly those that were psychologised, have changed over time. Moreover, there is actually little consensus within the field on the aetiology or pathophysiology of ME/CFS; there are many competing theories (1).

Patient organisations should not be compelled to support a particular model for the illness that is the basis for the use of cognitive behaviour therapy (CBT) and graded exercise therapy (GET), or indeed, the therapies themselves. The authors may claim such therapies are safe but this is in dispute, with large percentages of patients reporting deteriorations in their overall health in patient surveys (1,2). Moreover, claims for the efficacy of such therapies are mainly based on subjective outcome measures in non-blinded studies so there are plenty of reasons to be sceptical of such claims (1-3).

The models underlying CBT and GET for ME/CFS may be described as “biopsychosocial” but are not equally “physical” and “psychological”. They are based on the view that the symptoms and disability in the condition are reversible using these behavioural methods (4). This is distinctly different from many other conditions where these would be used as adjunctive therapies.

I would venture that it is the proponents of such models (i.e. those underlying CBT and GET) who are out of step with the majority of the ME/CFS research community worldwide. For example, there are many studies which suggest the symptoms of the condition are not due to deconditioning (e.g. studies with sedentary controls) and I believe most would not accept the view that all the findings can simply be explained by deconditioning (1,2,5).

In such circumstances, patient organisations should be entitled to make their own assessment of the evidence in its various forms rather than be compelled to follow any orthodoxy in a particular country.

[1]. Kindlon T. Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Bulletin of the IACFS/ME. 2011;19:59-111.

[2]. Twisk FNM, 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.

[3]. Kewley AJ. Does Cognitive Behavioral Therapy or Graded Exercise Therapy Reduce Disability in Chronic Fatigue Syndrome Patients? Objective Measures Are Necessary. Clinical Psychology: Science and Practice. 2013 20;3:321-322 DOI: 10.1111/cpsp.12042

[4]. PACE manuals for Cognitive Behaviour Therapy and Graded Exercise Therapy for CFS/ME. http://www.wolfson.qmul.ac.uk/current-projects/pace-trial/#trial-information  (last accessed: July 24, 2016)

[5]. Snell CR, Stevens SR, Davenport TE, Van Ness JM. Discriminative Validity of Metabolic and Workload Measurements to Identify Individuals With Chronic Fatigue Syndrome. Phys Ther. 2013 Jun 27.

Conflict of Interest: I am the Assistant Chairperson and Information Officer of the Irish ME/CFS Association. All my work for the Association is unpaid.

I originally wrote this in reply to:
Hossenbaccus Z, White PD. Views on the nature of chronic fatigue syndrome: content analysis. JRSM Short Rep. 2013 Jan;4(1):4. doi: 10.1258/shorts.2012.012051. Epub 2013 Jan 14.

but it also applies to a new paper:
Mallet, M., King, E and White PD. A UK based review of recommendations regarding the management of chronic fatigue syndrome. Journal of Psychosomatic Research, 2016, 88, 33-35. doi:10.1016/j.jpsychores.2016.07.008

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