‘CBT Is Not A Treatment Or Cure for ME/CFS’

announced NICE in its’ draft guidance, https://t.co/OWJjzbQGqK?amp=1 on November 10th 2020. This is likely to come as a shock to Improving Access to Psychological Therapies (IAPT) Service clinicians charged with delivering treatment to patients with Medically Unexplained symptoms, a term which embraces chronic fatigue syndrome (CFS) sufferers, those with musculo- skeletal pain and those with irritable bowel syndrome.  Will the IAPT clinicians explain to CFS sufferers that they are not providing treatment, just helping them ‘manage their symptoms’ as NICE now recommends?.

Will they tell their client that they don’t know what the odds are that the programme will make them ‘manage their symptoms’ better?  

It will no longer be credible for IAPT workers to present the CBT model of MUS which posits that the latter is a product of an interaction of personality factors like perfectionism, illness beliefs (attributions), cognitions (catastrophising), and behaviours such as symptom focusing (somatising) and avoiding activity (due to fear-avoidance or anxiety), (albeit that biological factors are acknowledged but given no explanatory powers). If indeed this CBT model is at the core of the pathology underpinning CFS, then CBT treatments should have resolved the disorder and not simply have helped sufferers ‘manage their symptoms’.  

IAPT assesses the competence of its CFS clinicians, in part, by whether they explain the CBT model of MUS. They need an urgent rethink.  How many of its’ therapists have they stressed out by asking them to promulgate a model that doesn’t deserve the term. It is not surprising that when Keith Geraghty and I (2020) reviewed IAPT data doi: 10.1186/s40359-020-0380-2 we found that only 4.6% of the MUS patients IAPT taken into treatment, complete intensive CBT.

NICE have taken seriously the views of sufferers and the experiences of clinicians and have been unimpressed by the quality of studies on the effectiveness of CBT for CFS. Unfortunately consumer and clinicians views on CBT meted out in routine IAPT practice,  for supposedly depression and the anxiety disorders, have yet to be elicited and what we have been offered is research evidence that is far from compelling,  Scott (2020) https://doi.org/10.1111/bjc.12264. 

Professor Jonathan Edwards submission to the NICE guideline Committee are a must read he highlights the importance of support over treatment:

‘much more emphasis is needed on ongoing support, rather than the use of short treatment courses. Perhaps the greatest missed opportunity of trials focussing on stereotyped treatment modalities is a failure to recognise the value of support from experienced carers that simply aims to make life easier to cope with, rather than address a theoretical model’

His is a clarion call  for basic humanity, being with people rather than believing that everything is fixable, walking the road with them. This should not be put under a CBT umbrella, to do so is a gross imperialism. Professor Edwards strictures  on the research are exemplary:

 ‘all the studies that claim to show benefit from therapist-delivered treatments in ME/CFS are unblinded trials that make use of subjective outcome measures… ….unblinded trials with subjective outcomes are specifically considered unreliable’ 

He goes on to  detail why such methodological rigour is required such as finding that repeating an experiment with unblinded assessors has discredited the initial positive findings and the problems of not taking seriously allegiance bias and none declaration of conflicts of interest. professor Edwards addresses the issue of honesty thus on p10 of his submission:

‘‘Patients are entitled to be fully informed, based on reliable evidence. As I understand it, patients receiving CBT are not told that the explanation given for the illness is speculative, that there is no reliable evidence for the efficacy of the treatment or that objective measurements and long-term follow-up suggests there is none of consequence. Convincing the patient that the explanation of the illness is correct, and that the treatment is effective, appear to be inherent to the way CBT is supposed to work. It would therefore appear to be unethical to continue development and use of CBT based on the current approach of altering beliefs about e.g. disease causation or effects of exercise’.

But exactly the same critique can be applied to IAPT’s low intensity CBT interventions.

Dr Mike Scott