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

Discussion in 'PsychoSocial ME/CFS Research' started by Andy, Sep 24, 2021.

  1. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Abstract

    The American Psychiatric Association’s, 2013 DSM-5 abandoned the use of the term ‘medically unexplained symptoms’ for non-neurological disorders. In the UK, treatments for various medical illnesses with unexplained aetiology, such as chronic fatigue syndrome, irritable bowel syndrome and fibromyalgia, continue to fall under an MUS umbrella with cognitive behavioural therapy promoted as a primary therapeutic approach. In this editorial, we comment on whether the MUS concept is a viable diagnostic term, the credibility of the cognitive-behavioural MUS treatment model, the necessity of practitioner training and the validity of evidence of effectiveness in routine practice.

    Open access, https://journals.sagepub.com/doi/10.1177/13591053211038042
     
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  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Have only skimmed the paper but this sentence is a bit problematic

    "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"

    GET is currently only supposed to be prescribed for mild or moderate patients. Exertion is likely to be a problem for all ME/CFS patients. 'Post-exertion fatigue' is what the PACE trial authors use rather than PEM which is quite a different phenomenon.
     
  3. Creekside

    Creekside Senior Member (Voting Rights)

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    Doesn't everyone suffer from post-exertion fatigue? I call it: "Getting tired". :)

    For ME, I prefer to use the term 'fatigue-like' instead of fatigue, which is a poorly defined term in any case.

    Are there any definite clinical measures of normal fatigue? For a normal, healthy person, does 30 minutes of strenuous stationary cycling produce consistent levels of lactic acid, glucose depletion, or some other measurable quantities? If so, do PWME show those same abnormal levels while suffering PEM? If not, it's not 'fatigue'.
     
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  4. Joan Crawford

    Joan Crawford Senior Member (Voting Rights)

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    Thanks for posting the link to our paper @Andy

    I've only just seen that this has been published today. Apologies for the fatigue rather than malaise issue. However, I hope that our criticisms of the MUS concept and the MUS CBT model are clear. @Creekside @Sly Saint?
     
  5. Arvo

    Arvo Senior Member (Voting Rights)

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    154
    At my quick-read, that's what sprung out for me too in an otherwise good piece. Expecially the use of the term "post-exertion fatigue" instead of PESE (post-exertional symptom exarcebation) or PEM (Post Exertional Malaise, which I personally like less btw, as it sounds diminuishing to me to what it actually is, more hazy, and can easily be misused as meaning just "fatigue"), as I understand that term is used by the BPS proponents to misdetermine and mischaracter the process.
     
    Last edited: Sep 25, 2021
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  6. Arvo

    Arvo Senior Member (Voting Rights)

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    @Joan Crawford I thought it was very good, and the criticisms clear and well-explained. I also liked the proposals/where to go from here. For me that fatigue/malaise thing was the only issue after a quick read. It stood out for me also because of the quality of the rest.
     
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  7. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    I would like to have seen mention of the fact that IAPT is replacing use of the term "MUS - not otherwise specified" in its literature and in the new IAPT Data Set v2.0 with the term "Somatic symptom disorder", for which IAPT successfully obtained the SNOMED CT code: SCTID: 723916001. (SCTID: 723916001 is the existing SNOMED CT Concept code for Bodily distress disorder, under which Somatic symptom disorder now sits in all editions of SNOMED CT).
     
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  8. Trish

    Trish Moderator Staff Member

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    I don't understand why ME/CFS is included in the IAPT program at all.

    There are supposed to be separate specialist ME/CFS clinics which, under the sort of guidance provided in the draft ME/CFS guidelines, would have condition specific help with symptom management including activity management to stay within your energy envelope. There is no mention in the ME/CFS guideline of IAPT being in any way an appropriate referral.

    So rather than 'better training' for IAPT therapists supposedly 'treating' MUS, or SSD, I would have liked to see this paper questioning whether CBT via the IAPT program or any other route, can ever be of any value for conditions like ME/CFS and IBS.

    The whole attempt to expand IAPT and CBT to include physical symptoms is, in my view a disaster. It seems to be about Health Psycholgists claiming an expertise and success rate that is completely bogus, and GP's wanting a cheap dumping ground for patients they don't know what to do with.
     
  9. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    The Abstract begins:


    It's unclear to me what the statement, "DSM-5 abandoned the use of the term ‘medically unexplained symptoms’ for non-neurological disorders" in the context of the APA's adoption, in 2013, of the construct "Somatic symptom disorder" as a replacement for some of the DSM-IV Somatoform disorders categories means.

    For DSM-5, the construct of "medically unexplained" versus "medically explained" somatic symptoms was eradicated and a diagnosis of SSD can be applied to chronic, distressing symptoms in association with diagnosed general medical conditions.

    @Joan Crawford What does the statement, "DSM-5 abandoned the use of the term ‘medically unexplained symptoms’ for non-neurological disorders" in the Abstract mean, please?

    [Edited for clarity and to add a link.]
     
    Last edited: Sep 25, 2021
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  10. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Without wishing to veer too off topic, this is the range of long-term physical health conditions (LTCs) that can be referred to IAPT:

    [​IMG]


    plus IBS; CFS, ME; and now SSD (replacing "MUS - not otherwise specified" - an IAPT Data Set v1.5 term which IAPT considers "no longer appropriate" for this cohort and has dispensed with for the new IAPT Data Set v2.0, which IAPT rolled out in September 2020):


    [​IMG]
     
    Last edited: Sep 25, 2021
  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I also think clubbing LTCs and MUS together is a further nonsense.

    The other LTCs listed also have their own 'services/clinics'.

    If they are offering some kind of 'specialised' versions of CBT or whatever therapy for the different LTC/MUS then it makes it even more absurd, as the therapists would need to be trained in these different therapies.
    Plus of course the evidence for the effectiveness of these therapies is also not there even tho' people like TC and RMM say it is.

    If they are offering a 'one size fits all' approach then you have to question why there needs to be a list of specific illnesses in the first place.

    If the patient has a comorbid MH condition and wants treatment, that's a separate issue.

    (This whole set up cannot possibly be 'cost-effective' particularly given that patients with diagnosed mental health disorders are unable to get proper treatment).
     
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  12. Barry

    Barry Senior Member (Voting Rights)

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    Yes, although very good overall, I also feel that speaking of "post-exertion fatigue" is a bit of an own goal, given how hard we constantly strive to impress upon others how PEM is absolutely not just about fatigue. When this hits my wife she basically feels like complete sh*t. Although the 'fatigue' is all-consuming, she also feels really ill and just wiped out in every sense. The 'fatigue' word has been used by so many to belittle and minimise what the symptoms really are, and is the very reason that the terminology "chronic fatigue syndrome" was pushed by Wessely and Co way back, knowing they could do just that - trivialise it.
     
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  13. Joan Crawford

    Joan Crawford Senior Member (Voting Rights)

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    Keith's earlier paper covers this issue if I recall.
     
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  14. Joan Crawford

    Joan Crawford Senior Member (Voting Rights)

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    Proponents of MUS approach failed to have MUS included as a category within DSM-5. What sadly did make it into DSM-5 was SSD. This is little used. I have only ever seen SSD used in the context of medico-legal experts for insurance companies. It is pretty obvious and to my knowledge not much tolerated by UK courts.
     
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  15. Sean

    Sean Senior Member (Voting Rights)

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    This.
     
  16. Trish

    Trish Moderator Staff Member

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    @Joan Crawford is it too late to get the paper edited to change PEF to PEM ?
     
  17. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    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:
     
    Last edited: Sep 25, 2021
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  18. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Yes and no.

    On the one hand you criticise the use of the term MUS; Trudie Chalder, would agree with you and has said she prefers the term Persistent Physical Symptoms and she and her group regularly use the term PPS and their clinic at KCL is now called
    Persistent Physical Symptoms Research and Treatment Unit
    https://www.kcl.ac.uk/research/persistent-physical-symptoms-research-and-treatment-unit-1

    On the other hand, throughout the piece you use the term MUS as though it is a legitimate category/diagnosis which includes ME/CFS.

    The 'all in the head' argument, whilst still relevent to some extent, is an old one that is quickly twisted and raises the continuing strawman argument of physical vs mental illness.

    You raise some important issues but I don't find your arguments particularly clearly illustrated.


    (sorry:()
     
    Last edited: Sep 25, 2021
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  19. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Indeed.

    And in a slide presentation for professional stakeholders of IAPT, presented in November 2019, IAPT were also looking to use the PPS term:

    Slide #71 from November 2019 Stakeholder Events presentation:
    https://dxrevisionwatch.files.wordp...eholder_events_november_2019-final-slides.pdf

    [​IMG]

    NB: The mapping of IAPT Data Set v1.5 terminology, "MUS - not otherwise specified" to ICD-10 F45.9 Somatoform disorder, unspecified for the IAPT Data Set v2.0, as shown in the screenshot of the spreadsheet above, predates the November 2019 decision by IAPT leads to request addition of "Somatic symptom disorder" to SNOMED CT to be used instead of code F45.9 Somatoform disorder, unspecified. This decision appeared to have been made after the Data Set v2.0 stakeholder consultation has closed, as it had not been included in the consultation draft.



    From the approved and implemented IAPT submission for addition of the term: Somatic symptom disorder to SNOMED CT:

    https://isd.hscic.gov.uk/rsp-snomed/user/guest/request/view.jsf?request_id=29847

    "To add a new concept that is the equivalent of Somatic Symptom Disorder in DSM-5 (300.82).

    "Description of the addition or change

    "Sheree Hemingway and myself attended a call with the NHS England IAPT senior team on 11/11/19 regarding the mapping of a cohort of patients who require psychological therapy in relation to persistent physical symptoms. This cohort was previously categorised in IAPT as 'Medically unexplained symptoms - other' but this is no longer appropriate.
    The IAPT National Clinical Advisor highlighted that Somatic Symptom Disorder (300.82 I think) in DSM-5 is the appropriate definition for this cohort. However, a SNOMED or ICD-10 code was required for the IAPT Data Set submission.
    It was agreed that this DSM-5 code would be mapped to SNOMED as a new 'Somatic Symptom Disorder' concept if possible.
    I am not sure how this would map up in the SNOMED hierarchy and would be grateful for your steer."​
     
    Last edited: Sep 25, 2021
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  20. spinoza577

    spinoza577 Senior Member (Voting Rights)

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    I think it´s the CCC which use alternatively malaise and fatique, which would make up PEM and PEF. Malaise is used as the term for physical felt symptoms, and fatique for symptoms of mental capacity/ability. One of both is required.

    So in fact, to speak of post exertional fatique would be (on the grounds of the CCC) a pars pro toto. It might be, imo, not a serious inaccuracy.

    (also to @Joan Crawford )
     
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