Trial By Error: A Curriculum for Treating CFS with CBT

By David Tuller, DrPH

Ten years ago, the National Health Service began rolling out across England a program called Improving Access to Psychological Therapies, or IAPT. This program arose out of the notion that many people were suffering from untreated depression, anxiety and other psychiatric disorders. In parallel with that, research suggested that treating these ailments would not only be good for public health but would in turn help restrain overall medical costs. The most common but not the only psychotherapeutic intervention offered by IAPT services is cognitive behavior therapy.

Why is this relevant to people with ME/CFS? Because IAPT is currently expanding its services to serve more people from two specific groups: those suffering from recognized long-term conditions, such as COPD or diabetes, as well as those suffering from the category known as “medically unexplained symptoms.” And for the purposes of IAPT, the illness the program calls either CFS or CFS/ME definitely falls under this MUS category.

The push to identify patients with MUS as candidates for psychological services offered through IAPT has been under development for a number of years. The reported findings of the PACE trial in 2011 certainly must have appeared to validate the wisdom of the approach. Of course, that was before the scientific community outside the world of ME/CFS advocacy began to recognize that PACE was an ethical and methodological disaster.

I’ve been trying to muddle through some of the MUS and IAPT literature recently. In the meantime, I thought this week I’d just post some ridiculousness from an IAPT document called “National Curriculum for CBT in the Context of Long Term Persistent and Distressing Health Conditions.” The curriculum is dated June 2017. Unit 3.3 of the curriculum is devoted to what the document calls CFS/ME. After this unit, participants undergoing this training should “be able to demonstrate knowledge of evidence-based interventions for people with Chronic Fatigue Syndrome, and practical skills in their application.”

One of the authors of this curriculum is PACE investigator Trudie Chalder, so it is not hard to guess what kind of “evidence-based” interventions are being promoted. Professor Chalder has an ongoing credibility problem arising from the 2011 press conference unveiling the first PACE results in The Lancet. At that event, she falsely stated that twice as many of those who received CBT and GET got “back to normal,” compared to those in the other groups. Many of the news stories reported that patients got “back to normal.” Professor Chalder has never explained, apologized for or retracted that statement.

Sure enough, biopsychosocial buzz words and phrases pepper the description of competencies that Unit 3.3 is expected to impart: “perfectionism,” “unhelpful fear avoidance beliefs,” “attentional biases toward symptoms,” “deconditioning,” “fears about engaging in activity,” “symptom focussing,” “a focus on graded exercise,” “unhelpful thoughts,” “predisposing and precipitating factors,” “a vicious cycle of fatigue,” etc., etc. The same crap as always.

Here’s the curriculum’s list of expected competencies:

Ability to draw on knowledge of the aetiology, epidemiology and presentation of CFS/ME, and of its differential diagnosis (and exclusion criteria)

Ability to draw on knowledge of factors considered to contribute to the development of CFS/ME (including physical illness/ serious infections (such as glandular fever), lifestyle, stress, perfectionism and distress)

Ability to draw on knowledge of factors considered to maintain CFS/ME (such as patterns of activity characterised by boom and bust cycles, unhelpful fear avoidance beliefs leading to avoidance of activity), attentional biases towards symptoms) and how these link to physiological mechanisms including poor sleep and deconditioning

Ability to help client feel that their experience of CFS/ME is being listened to and respected (i.e. acknowledging that they are experiencing real, physical symptoms)

Ability to conduct a comprehensive assessment of the client’s symptoms, including their medical and prescription history, contextual information and main current difficulties, physical symptoms, patterns of activity and rest, coping mechanisms, the impact of CFS/ME on their life and specific concerns about symptoms, fears about engaging in activity, attentional focus and how significant others respond to symptoms

Ability to introduce the CBT model, collaboratively identifying predisposing and precipitating factors and a vicious cycle of fatigue

Ability to introduce and discuss planning activity and rest in the context of short and long term activity targets (establishing a consistent approach to activity initially before gradually increasing activity levels)

Ability to ensure that a focus on graded exercise is integrated into the intervention

Ability to help the client monitor sleep, identify specific sleep problems that exacerbate fatigue and discuss sleep strategies such as an up time and bed restriction

Ability to employ attentional training to address symptom focussing

Ability to work on unhelpful thoughts related to engaging in activity more consistently and perfectionism, generate alternatives and help the client test these out with gradual behaviour change and behavioural experiments

Ability to identify and work with potential obstacles to recovery

Ability to use standard and idiosyncratic measures to evaluate outcomes with CBT for CFS

Ability to help clients prepare for ending therapy and maintain improvements by identifying possible indicators of relapse and strategies for their management

I’m not going to comment more on this nonsense right now, except to quote a tweet about the curriculum from Dr Keith Geraghty. He noted “everything wrong with ME/CFS treatment in the UK can be found in this doc.”