Trial By Error: My First Post on the IAPT Program

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.

Comments on this entry are closed.

  • Joan Byrne 10 October 2018, 6:46 am

    Well done David. Delighted to see this expose of the IAPT Program which is one of the biggest, pseudoscience con jobs ever perpetuated on those with chronic long term illnesses. It is self serving tripe – nothing more, nothing less. The authors are con artists and Shape Shifters. Always trying to be one step ahead of the real science and clearly all in their own interests and most definitely not that of the patients.

  • Peter Trewhitt 10 October 2018, 7:36 am

    Thank you for continuing to raise the spectre of this bizarre invented psychiatric diagnosis of MUS, which lacks any supporting evidence base for its existence as a distinct condition.

    As you point out David its proponents are leaping from the fact that there are patients seen in clinical practice whose symptoms are not yet fully understood medically to a belief that they all have a psychiatric condition that can be treated as a homogenous group from the point of view of intervention. This distorts a pragmatic classification into a false diagnosis. It makes as much sense to offer a single treatment to everyone with conditions beginning with the letter ‘A’ or to everyone aged over 65 regardless of their actual symptoms.

    A significant number of English Health Authorities are seeking to impose this unevidenced belief system on their areas through such as this IAPT programme, in direct conflict with the WTO classification of ME as a neurological disorder.

    There are many medical conditions that we do not understand fully the existence of which is not doubted. In contrast ME has many associated biomedical abnormalities including a disordered glut flora, abnormal energy production at a mitochondrial level, neurological abnormalities, cardiovascular issues, etc which the MUS advocates are happy to pretend do not exist. Because we do not medically understand a condition does not a priori make it a psychiatric condition, indeed the documented medical abnormalities strongly support the interpretation that the medical understanding is currently at fault rather than the condition being imagined. Worse than this, the recommended response makes the entire process a circular logically meaningless diagnosis in that doctors are told patients with MUS should not be offered medical assesment or intervention as this will reinforce their false beliefs. So a diagnosis of MUS can never be challenged as these patients are to be refused any opportunity to have their symptoms medically explained.

    Given ME in some case can be fatal, but more over there are higher levels of comorbities such as coronary heart disease or cancer in people with ME, how many people will have to die before this nonsense is effectively challenged.

  • Janice Johnson 10 October 2018, 7:37 am

    Thanks, David. My Facebook tells me it’s your birthday today. So a double thank you for working on your birthday.

    The devil is so often in the detail. The subtle change of part of a word can matter so much. Thanks for pointing that out

  • Paul Fox 10 October 2018, 7:55 am

    Excellent work again, David. In the light of this and other practice and policies that continue to be based on this ideology, Stephen Holgate’s declaration at the CMRC conference to the effect that all is now well is remarkable, to say the least.

  • Rosie Cox 10 October 2018, 8:06 am

    ” It’s the same nonsense as always.” That just about sums up the whole IAPT / MUS programme.

    Thanks to you (not to mention your trusty ‘elf’) for your expose on this. I know there is heaps more damning evidence ‘out there’ and I look forward to seeing that on Virology Blog also.

  • Anton Mayer 10 October 2018, 8:16 am

    The belief that symptoms have an emotional cause is a modern medical superstition.

  • Polly Moyer 10 October 2018, 10:27 am

    Thank you David – another well-reasoned discussion around ME/CFS and the associated scandals including so-called ‘MUS’. In the interests of disclosure, I don’t have ME/CFS but do have a rare neurological condition (MdDS) and was once told that it would be ‘worthwhile’ for me to explore a ‘functional model’ for the symptoms. When I asked the consultant what she meant by ‘functional’ she said ‘medically unexplained symptoms’ and when I asked what that meant she said I’d have to discuss it in CBT. So I did some digging and realised that ‘functional’ isn’t a ‘model’ because it can’t be used to predict outcomes. Nonetheless, I had to get re-diagnosed with MdDS before I could get shot of the ‘MUS’/’functional’ label, which wasn’t easy.
    Since then I’ve done further digging, along with several other people who have rare conditions, since many of us pick up these wastebasket diagnoses during our diagnostic odysseys. Please feel free to email me if you would like me to share what I’ve found with you since these labels harm many people including those with ME/CSF and other neurological conditions such as migraine.
    To me, it is wrong on all levels that people thought to have ‘MUS’ can be referred to as ‘so-called ‘hateful’ patients’.
    Many thanks for all you do on behalf of patients.

  • Joan McParland 10 October 2018, 11:51 am

    Thank you David.
    How is it possibly for M.E. to be shoved under MUS AND reclassified in SNOMED CT as neurological at the same time? Maybe I’m missing the obvious as brain still on a go-slow here from your/our antics in Newry!
    https://dxrevisionwatch.com/category/snomed-ct-2/

  • Alicia Butcher Ehrhardt 10 October 2018, 1:33 pm

    I had trouble just trying to read through the ‘competencies’ without a knot in my stomach. It’s bad enough having ME/CFS, but having the ‘helping professions’ treat you as a malingerer who somehow gets some benefit from this horrible disease – instead of treating you for it – is the ultimate slap in the face. I’m literally afraid of my current task: finding new doctors in California where we just moved to. I do not look forward to the whole task of explaining to doctors who know far less than I do, nor facing the incredulity, etc. And I do not expect much help.

  • Lisa 12 October 2018, 2:56 pm

    I read this post just after I was reading about the upcoming “Psychomsomatics” [yes, with an ‘s’ at the end -‘ it does make it sound like a creepy substantive noun to describe the presenters] conference soon to be held at Columbia University as an educational event for clinicians and others in health care. The theme of the conference is “unexplainable pain” — and exactly as you write above, the unexplainable equates to psychosomatic. Speakers will include Per Fink and Peter Henningsen on bodily distress syndrome and somatoform symptoms and diagnoses. The conference program promises to teach, among other aims, “the ways to facilitate psychosomatic treatment among patients who often do not accept needed care.” It is appalling that the event will provide CMEs facilitated by the MUS and BDS brigades for physicians in the United States where federal and MY state public health guidelines explicitly reject psychomsomatic explanations for ME/CFS. If you haven’t seen it already, MEAction is circulating a petition, the NY group is planning an in person protest, and many others are responding individually in various ways. So I found this post very timely, even though it’s about the UK. Clearly there’s still a lot of work to be done in favor of science based medicine in the U.S. as well.

  • deboruth 13 October 2018, 6:51 am

    This needs to be presented to the media and parliament as what it is — a profitable, large-scale exercise in scamming NHS trusts out of money that can be better spent on real care. The chief reason that ME may appear MUS is that the bsps convinced NHS not to do tests for characteristics such as NK cell cytotoxicity, viral and post-viral antibodies, and so on. Money saved by not diagnosing now is shifted to psychs. One also sees networks of “entrepreneurs” scamming trusts all over the country with sale of services for this crud.

  • Graham McPhee 13 October 2018, 10:51 am

    I’d be happier if they renamed MUS as STEOLOK (Symptoms that emphasise our lack of knowledge). At least that would shift the emphasis back to a lack of research.

  • Gryfalcom 19 October 2018, 12:51 pm

    Thank you for the work that you do.

  • Alan Webster 25 October 2018, 2:57 pm

    If CBT worked then those who suffer from genuine ME/CFS would be clambering (if only they could) to have such treatment. BUT when I say ‘worked’ I mean you actually recover such that you can hold down a job, have a social life and lead a normal existence. Our two daughters have been desperately ill with this wretched condition since they were in their teens some 20 years ago. Prior to being ill they were having fun, horse riding, swimming, long distance running and lots of friends. Our daughters would love to get their lives back but know from their own experience and the experience of others that CBT is not an effective remedy. Those who continue to promote this ‘treatment’ need to first suffer from ME/CFS themselves or live with someone who has in order to really understand the true nature of this illness. They will soon realise that the pain, fatigue, sensory dysfunction and post exertional malaise is devastating and totally genuine. Moreover, how bizarre it is that anyone with even half a brain should think that ME/CFS is all a self induced illusion!!