The ‘medically unexplained symptoms’ syndrome concept and the cognitive-behavioural treatment model, 2021, Scott, Crawford, Geraghty and Marks

[Trish]

I have read through this paper a couple of times. I think it's well intentioned, and makes some very good points, but there are some parts that make no sense to me (my bolding):

Medical trainees and physicians will need significantly more training and clinical exposure to MUS patients, armed with a better awareness of misleading and unproven claims associated with the cognitive-behavioural model if they are going to succeed with treatments based on the CBM.

The new NICE (2020) guidance on safety is consistent with Twisk and Maes (2009) who observed that CBT and GET are potentially harmful for many patients with MECFS. Exertion is almost bound to occur with GET in patients with severe ME and is likely to produce post-exertion fatigue, which decreases aerobic capacity, increases musculoskeletal pain, neurocognitive impairment, ‘fatigue’ and weakness and produces a slow recovery time. Treating people with MUS in a routine manner with CBT and GET raises ethical concerns, certainly if practitioners are not fully trained in clinical/health psychology and/or general practice.

The MUS concept can no longer be accepted as a viable diagnostic term. The credibility of the cognitive-behavioural MUS treatment model has reached a nadir and can be given only an auxiliary role in treatment. An urgent necessity to provide practitioner training has been identified and the need for greater awareness of the misleading nature of poor quality evidence for effectiveness of the CBT approach in routine practice.

All of these quotes seem to me to be based on the idea that if only CBT training were better, it would be fine as a treatment for MUS, including ME/CFS. I strongly disagree with this. The cognitive behavioural model seems to me to have no place at all in caring for people with ME/CFS, however well trained the practitioners are. I know some here disagree with me on this, but as we said in our submission to NICE,

However, the clinical effectiveness evidence for CBT for ME/CFS was all of low or very low quality (Evidence Review G, pp.72-119, p. 318 line 23). There can therefore be no justification for provision of ME/CFS services by CBT therapists, as to provide support for other aspects of care, such as energy management or medical symptoms, would exceed the bounds of their expertise and risk harm to people with ME/CFS. Services staffed by HCPs who have provided GET and CBT as treatment for ME/CFS for years are likely to continue to foster a shared mindset amongst staff that ME/CFS can be treated by increasing physical activity or changing thoughts and behaviours. Retraining of such staff is unlikely to be adequate to prevent old methods from creeping into updated approaches, and harms to people with ME/CFS from resulting. It should also be self-evident that provision of CBT for ME/CFS is not cost-effective because there is no good quality effectiveness evidence to support it.

https://www.s4me.info/threads/scien...consultation-december-2020.18281/#post-311625

 

[Barry]

I have read through this paper a couple of times. I think it's well intentioned, and makes some very good points, but there are some parts that make no sense to me (my bolding):

...

All of these quotes seem to me to be based on the idea that if only CBT training were better, it would be fine as a treatment for MUS, including ME/CFS. I strongly disagree with this. The cognitive behavioural model seems to me to have no place at all in caring for people with ME/CFS, however well trained the practitioners are. I know some here disagree with me on this, but as we said in our submission to NICE,


https://www.s4me.info/threads/scien...consultation-december-2020.18281/#post-311625

Yes, CBT as a treatment for ME/CFS is simply bogus. Even if (big if) there are any comorbidities that CBT might be applied to, similar to might be the case with comorbidities encountered by cancer sufferers for example, the comorbidities are distinct and separate from ME/CFS, and have no part in any treatment for ME/CFS. Same as CBT plays no part in treating cancer, even though it might be used to help with comorbidities.

CBT as a treatment for anything, is based on the assumption that the issue being treated is a cognitive behavioural one. If it is not then CBT is the wrong treatment!

 

[Hutan]

(This is a version of a post I made on this thread earlier and deleted)

This is great:

As the MUS diagnostic category is alleged to include up to one-third of all patients seen in primary care on a regular basis (Nimnuan et al., 2001), the scale of the artificially created ‘syndrome’ highlights the absurdity of such a conceptualisation.

But this is arguable, and, even if true, tends to bolster the idea of MUS rather than diminish it.:

Few commentators have challenged the validity of the homogenous MUS label.

I think the paper falls into the trap of putting up poorly evidenced biological models to counter poorly evidenced BPS models here:

Maes and Twisk (2010) provide a predominantly biological model to help explain chronic fatigue syndrome, rescuing it from the ‘unexplained’ category. Their model explains readily why immunological and endocrinological variables better predict outcome in CFS than psychological variables. By contrast, in the Harvey and Wessely (2009) model of CFS there is no specification of any key and lock mechanism that is, what precipitant, acting on which predisposing factor would usher in the said debility, nor which perpetuating factor would be pertinent to which key-lock combination.

and here - we don't yet have strong evidence of multiple biological deficits.

For example, in the case of ME/CFS, the CBM fails to incorporate a substantial body of evidence showing multiple biological deficits in association with ME/CFS (Marks, 2021b).

I thought this was very good:

Thus a recursive vicious circle is established: doctor’s analysis→MUS patient’s unhelpful beliefs and behaviours→CBT→failure→doctor’s analysis→patients’ unhelpful beliefs. This recursive victim-blaming cycle is likely to make patients with MUS feel worse, frustrated and angry

It's not the contentious nature of the CBM that creates ill-feeling. Contentious means 'likely to create an argument'. It's the CBM itself that creates the ill-feeling - because it doesn't work, because it suggests things like 'deconditioning as cause' and 'personality fault as cause'that are manifestly incorrect, because it leaves family, friends, employers and medical staff concluding that those who don't recover have brought it on themselves.

The contentious nature of the CBM creates a lot of ill-feeling among the patient community.

Surely exertion is a necessary part of GET in everyone who does it?

Exertion is almost bound to occur with GET in patients with severe ME

In what way would practitioners fully trained in health psychology or general practice (or anything else really) make 'treating' people with MUS in a routine manner with CBT and GET ok?

Treating people with MUS in a routine manner with CBT and GET raises ethical concerns, certainly if practitioners are not fully trained in clinical/health psychology and/or general practice.

I'll stop there. The intentions are very good and getting a paper published that criticises MUS is an achievement. But I think the result is a mixed bag. Sorry to be a bit negative. Talking about MUS is such a minefield. It's incredibly hard not to say things that are counter-productive.

 

[Graham]

GET is currently only supposed to be prescribed for mild or moderate patients.

Actually the current NICE guidelines make it clear that there is no evidence to support the use of CBT or GET for those with severe ME, and that they are only appropriate for mild or moderate cases. Then it goes on several lines later to make suggestions as to what sort of GET would be suitable for someone with severe ME!

 

[Joan Crawford]

SSD is little used in the UK because SSD has no code in ICD-10 (which continues to use the ICD-10 F45.x Somatoform disorders codes) and the DSM is little used in the UK and is not mandated by NHS England, as ICD-10 (Version: 2016) and SNOMED CT UK Edition are.

But SSD now has a code in SNOMED CT UK Edition (thanks to IAPT leads).

But your reply does not answer my question which was:

From my perspective as a psychologist, within and outside of the NHS, SSD is little used because clinicians avoid it and see it as unhelpful in day to day clinical practice. It is not useful clinically, therapeutically nor has it a sound basis from validity or reliability perspective. Therefore, it is not or rarely used. Occasionally, SSD appears in medico-legal cases as I mentioned above.

Regarding "DSM-5 abandoned the use of the term ‘medically unexplained symptoms’ for non-neurological disorders" MUS on its own was not included within DSM-5. SSD did make the cut. Within the somatic symptoms chapter DSM-5 retained Conversion disorder with changed criteria and this is listed in DSM-5 as Conversion disorder (functional neurologic symptom disorder) making this distinct from SSD. So in essence DSM-5 retained MUS in this way for the types of presentations seen within neurology clinics, for example, where patients have symptoms of altered voluntary motor, cognitive, or sensory function that are not compatible with any recognized neurological condition. My impression is that the FND diagnosis and this label is being used more often of late. I have not seen the use of conversion disorder at all.

 

[Jonathan Edwards]

I'll stop there. The intentions are very good and getting a paper published that criticises MUS is an achievement. But I think the result is a mixed bag. Sorry to be a bit negative. Talking about MUS is such a minefield. It's incredibly hard not to say things that are counter-productive.

I am afraid that I agree.

Using Maes and Twisk as a comparator is unwise. Maes produces as much nonsense as BPS people.

The suggestion that what is needed is more training of psychologists is wrong. If we do not know what is wrong with people and we have no evidence that psychological intervention helps then there is no reason to involve psychologists at all. The only justified approach is to provide patients with what information is possible about the likely cause and prognosis of their problems and the people trained to do that are doctors. I do not see how a psychologist can provide information about pain or fatigue.

 

[spinoza577]

... Using Maes and Twisk as a comparator is unwise. Maes produces as much nonsense as BPS people.

The suggestion that what is needed is more training of psychologists is wrong. If we do not know what is wrong with people and we have no evidence that psychological intervention helps then there is no reason to involve psychologists at all. ...

I fully agree.

In general, why is it a problem to admit, that something hasn`t been understood? As a patient I had had the expectation that I am not lied at. I can bear my bad luck. What do people think can they achieve with wishy-washy-somehow-it-might-be-do-anything? In fact a lie is an intended falsehood, and a typical danger of falsehoods are failures in deeds. (I am getting angry here, btw.)

 

[Dx Revision Watch]

DSM-5 abandoned the use of the term ‘medically unexplained symptoms’ for non-neurological disorders. . .

So in essence DSM-5 retained MUS in this way for the types of presentations seen within neurology clinics, for example, where patients have symptoms of altered voluntary motor, cognitive, or sensory function that are not compatible with any recognized neurological condition.

which are not considered by many clinicians who work in the area of "functional neurological disorders" to be neurological conditions. Therefore they are considered "non-neurological disorders".

But you have said:

DSM-5 abandoned the use of the term ‘medically unexplained symptoms’ for non-neurological disorders

and:

So in essence DSM-5 retained MUS for the types of presentations seen within neurology clinics, for example, where patients have symptoms of altered voluntary motor, cognitive, or sensory function that are not compatible with any recognized neurological condition.

I'm afraid I'm still struggling with the logic here.

 

[Dx Revision Watch]

@Joan Crawford is it too late to get the paper edited to change PEF to PEM ?

David Marks, one of the co-authors of this editorial, is the editor of the Journal of Health Psychology and Keith Geraghty is a member of the editorial board.

 

[Blueskytoo]

I do not see how a psychologist can provide information about pain or fatigue.

Unfortunately, every bloody pain clinic I’ve ever been referred to has claimed the exact opposite….

Edited for clarity of phrasing. Blame brain fog.

 

[Joan Crawford]

The suggestion regarding the training of psychologists is to educate them that MUS is not a viable, useful, or helpful approach. We do not need or want more psychologists working in MUS, we would like them to be aware of the bogus claims of MUS and the bogus and flawed CBT MUS model.

The paper is aimed at psychologists, the vast majority of whom have little or no idea about MUS; the MUS CBT model; the push to incorporate MUS within IAPT, and so forth. The purpose of the paper is largely to raise awareness that in some small quarters MUS is being pushed as a way of incorporating poorly understood medical conditions, for example, within IAPT. Most jobbing psychologists, who are the audience for this paper, are unaware of MUS or the CBT MUS model and what it entails. In my experience, those that encounter MUS and read into it consider it poor and unhelpful. Their responses to our paper confirms this.

Using Maes & Twisk may be unwise; however, we are not commenting on the quality of the biomedical evidence, that is not our role. We highlight that biomed variables are better predictors of outcome than psychological ones.

Our article highlights just how bad MUS and the CBT MUS model are and educates psychologists by highlighting the poor reliability, validity and harms caused by it. This is our intention and the feedback from the intended audience has that this is what is being understood as the take home message.

In an ideal world when doctors are working with patients with poorly understood conditions, they would be honest with them about this. This has not been my experience, nor the experience of many pwME. Sadly, a few BPSers have filled this void in medical knowledge by claiming a warped CBT model can solve multiple problems without evidence. Much of the medical professional has gone along with this and have accepted it uncritically. MUS is but one of multiple BPS approaches. We can only cover one such BPS approach in this one editorial.

When reading the paper please keep in mind that there is a limited word count, and we are constrained in what can realistically be covered in one editorial. MUS is duplicitous, harmful garbage that needs challenging. As I and my colleagues are aware of the multiple issues with MUS, if we were to stay silent, we are to some degree complicit. To remain silent could send the message that we are fine with it – when we are clearly not. By publishing we are not in any way legitimising MUS as a concept – not at all - we aim to educate and demolish. MUS deserves to be in the garbage can. If we speak out, we may be misunderstood on this forum, however, please keep in mind that this forum is not the intended audience.

To be clear – we are not advocating for more psychologists for MUS. Nor do we think that MUS is a good thing.

Thanks for taking the time to engage on this topic. It is good to discuss, debate and so on.

@Jonathan Edwards @Hutan @Dx Revision Watch @Trish @Sly Saint @Barry @Andy @Arvo @Creekside

 

[Campanula]

This explanation of the dynamic behind the strained patient-doctor relationship was really on point:

"Attempting to induce patients into cognitive behaviour therapy (CBT) to change the way they are alleged to habitually think has not proved a successful strategy, as the revised NICE (2020) guidance has concluded.

Rather than question the legitimacy of CBT and the treatment model, clinicians can attribute the failure of CBT to patients’ unwillingness to change their beliefs and behaviours. Thus a recursive vicious circle is established: doctor’s analysis→MUS patient’s unhelpful beliefs and behaviours→CBT→failure→doctor’s analysis→patients’ unhelpful beliefs.

This recursive victim-blaming cycle is likely to make patients with MUS feel worse, frustrated and angry"

And the visual representation as well:

 

[Tom Kindlon]

https://mecentraal.wordpress.com/20...nd-the-cognitive-behavioural-treatment-model/

.