‘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announced NICE in its’ draft guidance, https://t.co/OWJjzbQGqK?amp=1 on November 10th 2020.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


Focus On The Chief Psychological Complaint And Miss The Boat


Post-traumatic stress disorder (PTSD) is an example of this – only a fifth of those with PTSD present with it as their principal problem, according to a just published paper by Kiefer et al (2020)  in The Journal of Nervous and Mental Disorders. Most commonly PTSD sufferers present with depression, bipolar disorder or borderline personality disorder as the principal diagnoses. These are so likely to absorb a clinicians attention that the PTSD does not get a look in. But it is likely to be one of the elephants in the room that sabotages therapeutic efforts. If working in IAPT the hapless clinician, post the lockdown, is likely to be hauled over the coals for not reaching recovery and/or feels incompetent.  The seeds of the problem is that IAPT clinicians are not trained to make reliable diagnoses. But unreliable diagnosis is not confined to IAPT, it is the norm, bolstered by the dominance of an unthinking anti-psychiatry stance amongst psychological therapists. The banner of ‘Formulation Rules’ is unfurled and brandished but without any evidence that it makes a real world difference to client’s lives. 

Whilst the starting point for all psychological therapies is the client’s chief complaint, in it’s distilling there is no limit to the range of information considered pertinent (no control for information variance), nor of the operational criteria for deciding whether a particular problem is simply a normal reaction to an abnormal situation or something more (no control for criterion variance). Appeal can be made to a clinician’s formulation, but there are likely as many formulations as clinicians. By default the formulation of the local powerholder, whether it be the supervisor, manager or clinician will likely hold sway. The client will rarely have the wherewithal to articulate their definition of the situation and certainly not to make it stick.

Consider a person referred with ?chronic fatigue syndrome, the psychological therapist will certainly find evidence to support this because a) they will rarely be aware of differing criteria for CFS and b) they will find a symptom to support the diagnosis such as fatigue. Here we have the operation of a confirmation bias seeking only information that supports the original hypothesis. Without considering what body of evidence would be needed to refute hypothesis e.g diagnostic entities such as depression that have some symptom overlap with disorders such as CFS and/or an as yet undiscovered entity that might explain the fatigue e.g the development of multiple sclerosis.

Communications to sources of referral are written in the form ‘it was agreed that course x would be best’ but as the client does not understand how course x, differs from courses y and z, much less why one course would be better than another in their circumstances, it is doublespeak for the Agency doing what it wants.

Having elicited what appears to be the chief complaint, almost anything can be deemed appropriate. Today I read a book [ The Well Gardened  Mind by Sue Stuart-Smith a psychiatrist] review on horticultural therapy, in which the reviewer asked  why such a therapy is not a standard treatment for anxiety and depression? Such an approach was regarded as an enlightened response to the plight of  ‘shell shocked’ soldiers returning from the First World War. The short answer to the question is that there is no evidence it returns people to their former selves i.e that it makes for recovery, as opposed to makes them feel better for a time.

How did we reach the point were de facto we have therapy without any boundaries? In my view it is a product of jettisoning the very notion of diagnosis and treatment. There is almost universal support amongst psychological therapists for an anti-psychiatrist stance see ‘Drop The Diagnosis! ‘ by Jo Watson (2019) and Dalgleish’s call http://dx.doi.org/10.1037/ccp0000482 for a hard trans diagnostic approach  and it is used to justify popular offerings such as Solution Focussed Therapy. But we are short of any independent evidence that the talking therapies without reliable diagnosis make a real world difference.

Dr Mike Scott

Duplicity In IAPT On MUS

my colleague Joan Crawford wrote the following letter to the Journal of Psychosomatic Research, it highlights that IAPT advises its’ clinicians not to use the term Medically Unexplained Symptoms (MUS). Her letter was rejected. But Prof Chalder, Improving Access to Psychological Treatments (IAPT) adviser on MUS and LTC’s (long term conditions) , regularly holds workshops using the MUS descriptor (see webcast for BABCP sponsored Workshop on June 8th 2020). Joan’s letter reads;


‘The systematic review into the use of language and relational issues during the patient-doctor interaction where there is medical uncertainty is welcome [1]. However, there are flaws in the methodology and underlying assumptions within this paper that require closer examination.

Medically unexplained symptoms (MUS) were not clearly defined. A broad, assumptive approach was used which included: chronic fatigue syndrome, fibromyalgia and irritable bowel syndrome, without justification or criticism. These are all separately listed World Health Organisation medical conditions [2]. Using MUS gives an illusion of medical respectability, which is ambiguous if not misleading. At no point was there recognition of controversy of the MUS approach or any engagement with extensive alternative literatures. While many routine tests may fail to find a specific underlying disease, it is misleading to assume; therefore, that no objective abnormalities can be identified.

In the UK, chronic pain (explained or unexplained by routine assessment), including fibromyalgia, is managed within the NHS via pain management programmes. This is under the rubric of The British Pain Society guidelines [3]. Such an approach teaches patients the central sensitisation and dysregulation model of chronic pain. This science-based model encourages patients to pace, plan and prioritise tasks to maximise activity; set appropriate goals; minimise flare ups and to live well despite being in pain. At no point does the evidence suggest that their pain is medically unexplained, quite the opposite. Patients adapt well to this model. They improve their self-efficacy, reduce distress along with decreasing presentation at their GPs unnecessarily as they have the confidence to decide how to best manage themselves.

Taking the MUS approach has the potential to de-validate patients’ symptoms as described in this paper [1]. Patients can erroneously be given the impression during the medical encounter, consciously or otherwise, that their symptoms and suffering are not of worth; that they are derived

from within themselves via a self-generated, autopoietic mechanism [4], which they have the power to overcome. For example, “MUS arise when benign bodily sensations, such as those resulting from normal variation, emotional disturbance or minor pathology, are selectively attended to and misinterpreted as evidence of illness [4]; the resulting changes in behaviour (e.g. reduced activity) and physiology (e.g. increased autonomic arousal) then create a vicious cycle that maintains symptom reporting.” [5]. The apparent rarity of misdiagnosis is often cited as good reason to proceed with a MUS approach. Of note, Newton [6] reviewed 375 patients attending a CFS clinic in England and found that 40% of patients did not to have CFS. Caution is required.

What evidence does the practitioner have that their option is sound other than their own belief? Should the patient not return, does the doctor then conclude that the patient has been cured of a false belief? Or has the patient abandoned hope that their practitioner can help them? Deary’s cognitive behavioural model [5] is potentially self-blaming and shaming which can silence patients discouraging them from further medical interaction and emotional and social support. Patients’ can experience disbelief about their symptoms as an assault on their sense of self. This causes harm and unnecessary suffering. This can have tragic consequences for patients and their families.

Openly sharing the speculative MUS model in the clinical context would allow the patient to decide if it has face validity. Worryingly in the UK, IAPT clinicians are encouraged to not use the term MUS [7]. This is duplicitous. Obfuscation here is dishonest and unethical [8]. It is encouraging to note that, “healthcare providers are cautious when raising psychosomatic attributions” [1] as the evidence base for such is flimsy. The absence of good quality evidence-based objective, real world changes for psychological or behavioural interventions for MUS was omitted and therefore not subject to critical analysis [9]. The paper does approach the importance of the psychosocial context; however, it fails to critically analyse the social and emotional consequences for the patient.

It is unfortunate that some doctors continue to have negative experiences. This may well be true for those who are not up to date in their knowledge. When current information is shared with patients, they are enlightened and appreciative of clinician’s honesty and skills.

There is a sense from this paper that clinicians should continue fear encounters with patients. Perhaps there is nothing to dread from such consultations if one approaches this with a sense of humility [8] and a science-based model and positive mindset. There needs to be honesty in the clinical and therapeutic environment. This needs to hold the tension with uncertainty, without the ethically dubiously, “subtle persuasive conduct” [1] imposing a blaming and shaming model on the patient due to lack of clinician resilience or knowledge [8]. Share the model openly [4,5] and allow the patients to vote with their feet. Those who find it meaningful will stay. The key here may be to build healthcare providers’ resilience to cope with and tolerate uncertainty and ambiguity.

[1] I. Stortenbeker, W. Stommel, S. van Dulmen, P. Lucassen, E. Das, T. I. Olde Hartman, J. Psychosom. Res. 132 (2020).
[2] World Health Organisation, International Statistical Classification of Diseases. https://www.who.int/classifications/icd/en/

[3] The British Pain Society, Guidelines for Pain Management Programmes for Adults (2013).
[4] V. Deary, T. Chalder, M. Sharpe, The cognitive behavioural model of medically unexplained symptoms, Clin. Psych. Rev. 27 (2007) 781–797.
[5] R. Brown, Explaining the unexplained, The Psychologist, 26 (12) (2013) 868-872.
[6] J.L. Newton, H. Mabillard, A. Scott, A. Hoad, G. Spickett. The Newcastle NHS Chronic Fatigue Syndrome Service: not all fatigue is the same, J R Coll Physicians Edinb. 40 (2010) 304–307.
[7] NHS IAPT Medically Unexplained Symptoms/Functional Symptoms – Positive Practice Guide, (2014).

[8] D. O’Leary, Ethical management of diagnostic uncertainty: Response to open peer commentaries on, “Why bioethics should be concerned with medically unexplained symptoms,” Am J. Bioethics. 18 (8) (2018) W6-W11.
[9] K. Geraghty, M. Scott, Treating medically unexplained symptoms via improving access to psychological therapy (IAPT): major limitations identified, BMC Psychol, 8 (13) (2020).’

Well argued Joan

Dr Mike Scott

A Critical Transatlantic Take on IAPT

Dr David Tuller from the University of Berkeley, California has penned a very critical blog on IAPT  http://www.virology.ws/2020/01/15/trial-by-error-cbt-provides-no-benefits-to-advanced-cancer-patients-study-finds/

two years ago he was one of the authors of a reanalysis of the PACE trial data on the efficacy of CBT for chronic fatigue syndrome and essentially found the data had been fudged.

Dr Mike Scott

and the added value of low intensity IAPT is?

compared to how people would have got on anyway if not referred to IAPT (in economist terms the appropriate counterfactual), the ‘added value’ has not been demonstrated. Yet most people receive a low intensity intervention such as computerised CBT, guided self help or groupwork.

I could find no independent outcome assessors involved in the randomised controlled trials of low intensity interventions that the NICE guidance largely relies on. Instead reliance has been placed on IAPT’s marking and marketing of its’ own homework.

In a review of randomised controlled trials published in 4 medical journals Kahan, Rehal and Cro (2015) only a quarter (26%) involved blinded outcome assessment. These authors write ‘Previous reviews have found that unblinded outcome assessment can lead to estimates of treatment
effect that are exaggerated between 27% and 68%’ see link below:


But the position appears worse when it comes to psychological therapies with no reliable rcts for low intensity interventions, and with regards to high intensity interventions the few blind outcome assesments are clustered around depression, the anxiety disorders and PTSD. Since the millenium there has been a drift away from the use of outcome assessors, this makes research cheaper, it is much easier to massage statistics to give a positive hue, the originators of an intervention and those with a vested interest are given a free hand.

Researchers on IAPT [seee Bower et al (2013)] play fast and loose with Cochrane risk of bias tool, see link below:


and jettison the need for independent blind assessment implicit in the tool on the spurious grounds that ‘most outcomes are self-reported’ see link below:


Looked at from the perspective of independent outcome assessment the claims for low intensity interventions look spurious and the evidence base for high intensity interventions is more circumscribed than BABCP conferences or IAPT would suggest.

The IAPT Manual published last year recommends extension of the service to irritable bowel syndrome, chronic fatigue syndrome, chronic pain and medically unexplained symptoms not otherwise specified but makes no mention at all of the need for independent blind assessment of outcome, instead it suggests simply what self-report measures should be administered. See link below:


Yet another marketing opportunity, when we need real world answers, how many people said to an impartial observer that they were back to their usual selves after the intervention? how long did this last?

Dr Mike Scott

CBT Is Overeaching Itself – Clients and Therapists Are The Likely Casualties

A re-examination of the evidence base for CBT, using published guidelines for the evaluation of randomised controlled trials [ Guidi et al (2018)], suggests that low intensity interventions and interventions for ME, long term physical conditions and psychosis are not evidence based. Such studies lack credibility either because of the abscence of blind outcome assessment or when blind assessment has been conducted the results have been negative. Further the number of blind credible trials supporting the efficacy of CBT for depression and anxiety disorders is about half the number of studies usually considered as evidence. Dissemination of CBT beyond the boundaries of an evidence base hampers finding real world solutions to a clients difficulties and will likely result in demoralisation of the latter and therapists. This casts doubt not only on the wisdom of IAPT’s expansion beyond depression and the anxiety disorders but the ethics of its’ treatment of staff.

An international team of Experts [Guidi et al (2018) see link below] have developed evaluation guidelines stipulating the need for blind independent assessment of psychological interventions, particularly when psychometric tests are the outcome measure.


The PACE trial for chronic fatigue syndrome was heavily criticised [ Edwards (2017)] because it relied on self-report measures of outcome without blind assessment, a methodology that is unacceptable in medicine and in the evaluation of pharmacological products see https://journals.sagepub.com/doi/full/10.1177/1359105317700886

To my knowledge there are no blinded assessment of outcomes for any low intensity interventions. Efficacy has a way of disappearing when there is blinded assessment, for example Morrison et al (2018) conducted a blinded outcome assessment of CBT for schizophrenia and found no clinically meaningful difference, see link below:


One other stipulation of the Guidi et al (2018) guidelines is that studies of an intervention should involve an active placebo, in order to ensure that any impact of treatment is not just due to raised expectations and attention. But more than 80% of trials in the anxiety disorders have used waiting list control groups [Cuijpers (2016)] as opposed to active placebos .


Carpenter et al’s (2018) , study of anxiety disorders see link below found that there were only 41 studies using an active placebo and in only two thirds of them was there a low risk of bias because outcome assessment was blinded. Thus though CBT was still regarded as efficacious, this number of studies spread across all the anxiety disorders does not make the case for CBT being irrefutable.


As Zhu et al (2014), see link below, put it with regard to generalised anxiety disorder, the evidence for CBT is ‘strong but not definitive’. They point out that although the 12 randomised controlled trials they reviewed all had blind assessors, in 6 of them outcome was not based on the assessors assessment but on a self-report measure.


Of the 144 studies of depression, generalised anxiety disorder, panic disorder and social anxiety disorder reviewed by Cuijpers et al (2016) only half (48.6%) had a blind outcome assessment,


Further Cuijpers et al (2016) found that the effects of CBT are small to moderate when the comparison condition is usual care or active placebo compared to a large effect size when the comparison is a waiting list control condition.

In view of Guidi et al’s (2018) strictures around the evaluation of randomised controlled trials, it is wholly inappropriate for IAPT to admonish its therapists for ‘poor performance’ based solely on a psychometric test. There are surely grounds here for a therapist to claim constructive dismissal.

Dr Mike Scott

We Need a ‘Cochrane’ To Evaluate Routine Practice

Cochrane reviews are often used as a ‘gold standard’ for establishing whether a treatment can be regarded as efficacious. They are independent of practitioners/researchers. But they don’t always get it right, for example on the appropriateness of graded exercise for chronic fatigue syndrome (CFS). Nevertheless there is a re-consideration of conclusions in the the light of the critique of others and they are for example going to post a qualifying note about their original conclusions on CFS. Whilst others including myself would wish that their original report was withdrawn, nevertheless one feels that there is an openness and objectivity. By contrast when it comes to evaluating whether treatments are effective in routine practice, as in IAPT, there is no such ‘Cochrane’, it feels much more like voicing dissent in some totalitarian regime. Those in power dominate the media, refuse to directly and openly debate and the juggernaut roles on, until one day it will implode and people will wonder why the writing on the wall was not heeded earlier!

Dr Mike Scott

House of Lords – Expansion of IAPT into ME Despite Not Knowing How Such Clients Have Already Fared In The Service!

Chronic Fatigue Syndrome: Written question – HL7468

Asked by The Countess of Mar
Asked on: 01 May 2018

Department of Health and Social Care
Chronic Fatigue Syndrome

To ask Her Majesty’s Government what are the recovery rates of patients with myalgic encephalomyelitis who have received treatment under the Improving Access to Psychological Therapies programme.

Answered by: Lord O’Shaughnessy
Answered on: 15 May 2018

This information is not available



Whatever happened to evidence based CBT?


Dr Mike Scott

Prestigous Journals Have Stopped Looking at Real World Mental Health Outcomes

Papers in Journals such as The Lancet, Behaviour Research and Therapy and Behavioural and Cognitive Psychotherapy have in recent years relied entirely on psychometric tests completed by clients, with no independent assessment by an outside body using a ‘gold standard’ diagnostic interview. The sole use of psychometric tests is great for academic clinicians, research papers can be produced at  pace and at little cost, securing places in academia. Conferences are dominated by their offerings but actually nothing is changing in the real world of clients.



The Lancet paper on the PACE trial on CBT  for chronic fatigue syndrome [Sharpe et al (2015) Rehabilitative treatments for chronic fatigue syndrome Lancet Psychiatry, 2, 1067-1074] provides a great example of how to ‘muddy the waters’. The authors presented CBT as making a major contribution to the treatment of CFS. But Bakanuria (2017) [ Chronic fatigue syndrome prevalence is grossly overestimated using Oxford criteria compared to Centers for Disease Control (Fukuda) criteria in a U.S population study. Fatigue: Biomedicine, Health and Behavior, ps 1-15] has pointed out that the authors used the very loose Oxford criteria for CFS, requiring mild fatigue, but the incidence of CFS is ten times less if the Center for Disease Control (CDC) rigorous criteria are used. Thus Sharpe et al had not demonstrated the efficacy of CBT in a population who truly had CFS. In December last the Lancet published a paper by Clark et al on predictors of outcome in IAPT but again the dependent variable is of  doubtful validity, changes on PHQ9 and GAD7 in a population whose  diagnostic status is unknown. In fairness in the discussion Clark et al (2017) do note that it is a limitation of their study that they have relied on self-report measures but there is no acknowledgement that their findings are actually unreliable. Doubtless their conclusion that organisational factors effect delivery of an efficacious treatment is true, but this is stating the obvious, if a treatment is found to be efficacious in a randomised controlled trial, unless there is a careful mapping of key elements in the rct e.g reliable diagnosis, ‘gold standard’ assessment, fidelity measures, there will be an inadequate translation from research into routine practice.

My hope for the New Year is objective measures of outcome so that we can truly begin serving clients, now there is a novel idea.

Dr Mike Scott

Wasting The Taxpayers Money – Fire and Fury Over CBT

‘The results are, at best, unreliable, and at worst manipulated to produce a positive-looking outcome’ so write the editors of the current issue of the Journal of Health Psychology, (http://journals.sagepub.com/toc/hpqa/current). They are writing in relation to a study of the efficacy of CBT for chronic fatigue syndrome ( CFS – the PACE trial). The essence of the editors’ criticism is that when objective measures of outcome were used the effectiveness of CBT disappeared, but the authors of the PACE trial relied instead on subjective self-report measures to ‘promote’ the cognitive behaviour therapy and graded exercise therapy protocols that they themselves had developed. The Times of August 1st 2017 reported a ‘trade’ of ‘insults’ between both sides.

                       PACE Trial £5 million

                                                                                           IAPT £400 million +

But the same criticism that the editors make of the evaluation of CBT for CFS can be applied to how CBT for ‘depression and anxiety’ (the alleged focus of IAPT) is evaluated in routine care in the UK Government’s IAPT Service. Evaluation is entirely based on subjective measures (the PHQ-9 and GAD-7), there is no objective measure (a standardised reliable diagnostic interview), assessment has been entirely by the service providers with no independent assessment. The cost of the PACE trial was just £5 million, a drop in the ocean compared to the cost of IAPT which saw the Coalition Government invest up to     £400 million over the four years to 2014–2015. [Department of Health (2012). IAPT Three-year Report—The First Million Patients. London: DH] .

Dr Mike Scott