By David Tuller, DrPH
Since 2008, the English arm of the National Health Service has been rolling out a program called Improving Access to Psychological Therapies, or IAPT. More than 900,000 people now receive IAPT services annually. This program arose out of the notion that many people were suffering from untreated depression, anxiety and other psychiatric disorders, and that a more streamlined system was needed to ensure that they received appropriate psychological therapies. In parallel with that, it was further suggested that the program should be expanded to people with long term conditions (LTCs), such as diabetes and cancer, as well as those suffering from so-called “medically unexplained symptoms” (MUS). The main but not the only therapeutic intervention offered through IAPT is cognitive behavior therapy.
The assumption behind the expansion was that IAPT, by reducing the medical demands of those suffering from LTCs and MUS, would generate significant savings in the overall health care budget—enough, in fact, to cover costs associated with the IAPT program itself. This prediction was based on the idea that psychological issues can exacerbate the health and medical problems of people with LTCs and actually generate the symptoms experienced by people identified as having MUS. Providing these patients with CBT or other psychological modalities would presumably then reduce their need to seek out expensive medical care for their physical complaints.
Why is this relevant to people with ME/CFS? Because for the purposes of IAPT, ME/CFS has been categorized as a prime example of MUS.
The push to treat patients identified with MUS through IAPT has been under development for several years. The reported findings of the PACE trial in 2011 certainly must have appeared to validate the wisdom of the approach. After all, members of the CBT/GET ideological brigades are among the leaders of the push behind IAPT and the MUS concept. That was before the scientific community outside the world of ME/CFS advocacy began noticing that PACE was a methodological and ethical disaster.
I’ve been trying recently to muddle through some of the IAPT literature and figure it out. Much of the purported evidence base for the prevalence estimates of MUS as well as the potential cost savings from the IAPT program appears to be a mess–just like PACE and the body of research on treating ME/CFS with CBT. While I continue reviewing some of this work, I thought it would be informative for now to post some ridiculousness from an IAPT document called National Curriculum for CBT in the Context of Long Term Persistent and Distressing Health Conditions. This is version 2.0 of the curriculum and is dated June, 2017. Unit 3.3 is devoted to what the document calls CFS/ME. After completing this unit, training participants 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 Professor Trudie Chalder, so it is not hard to guess what kind of “evidence” stands behind this approach. At the 2011 press conference unveiling the first PACE results in The Lancet, Professor Chalder falsely stated that twice as many of those who received CBT and GET got “back to normal,” compared to those in the other groups. This statement was based on PACE’s so-called “normal range” analysis, in which participants were able simultaneously to be disabled enough on measures of self-reported physical function and fatigue to enter the trial while also being “within the normal range” on those outcomes. Not surprisingly, much of the press coverage focused on the unfounded and anti-scientific claim that patients got “back to normal.” As far as I can tell, Professor Chalder has never explained why she made that preposterous statement.
Sure enough, below are the competencies—or perhaps incompetencies?–that Unit 3.3 is expected to impart to participants. Note the inclusion of biopsychosocial buzz words and phrases like “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. It’s the same nonsense as always.
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
Here’s what Dr Keith Geraghty, who wrote the PACE-gate commentary in the Journal of Health Psychology, tweeted about this curriculum: “Everything wrong with ME/CFS treatment in the UK can be found in this doc.”
It is now clear, of course, that PACE can in no way serve as “proof of concept” that so-called MUS can be successfully treated with psychological and behavioral therapies. In fact, PACE proved the exact opposite—that these treatments are ineffective with this particular illness. In the trial, CBT and GET resulted in marginal improvements in self-reported outcomes that were not matched by objective outcomes. Nor were the reported advantages of the therapies relative to comparison trial arms sustained in the long term.
That was already apparent in 2017, when this version of the national curriculum was written. It is even more apparent now, after the publication of the full reanalysis of the PACE trial data in March of this year. The national curriculum at one point refers to an earlier document called “A competence framework for psychological interventions with people with persistent physical health conditions.” That document explained that the “expert reference group” involved in developing the required competencies “noted that decisions about inclusion or exclusion of particular approaches will change over time, as new evidence becomes available and our knowledge of the efficacy of specific interventions improves.” Since the evidence base now includes a full debunking of the PACE trial’s findings, it is time for IAPT to retire the recommendation that the illness in question can be successfully treated with CBT.
The category of “medically unexplained symptoms” is perhaps, in some ways, a useful grab-bag concept. But as journalist Maya Dusenbery notes in her excellent new book, Doing Harm, the term is generally interpreted to mean something closer to “medically unexplainable symptoms.” And this sleight-of-meaning transforms a descriptive phrase that includes no presumption about causes into one that incorporates a very strong presumption that MUS cannot be explained by organic or physiological dysfunctions. With this framing, the only conclusion to be drawn is that these symptoms represent mental health dysfunction and are amenable to improvement with psychological and/or behavioral treatments.
This elision in meaning between “unexplained” and “unexplainable” is subtle but significant. It also has obvious implications for treatment. If a symptom is only “unexplained,” it leaves open the possibility that a diagnostic test and/or pharmaceutical treatment will be discovered. It suggests that a premium should be placed on biomedical research to figure out what might be going on. If a symptom is “unexplainable,” the possibility of a diagnostic test or pharmaceutical treatment would appear to be non-existent. And biomedical research into the symptoms would then seem to be a waste of funds.
MUS is not—or at least should not be—an actual diagnosis. As Dusenbery points out, it is being regarded and presented as a legitimate and discrete disease entity. This perspective rests on fallacious reasoning and is not only absurd but ultimately harmful to patients.