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Forward ME Group – Bodily Stress Syndrome

Discussion in 'General ME/CFS News' started by Andy, Apr 5, 2018.

  1. Andy

    Andy Committee Member & Outreach

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    http://www.meresearch.org.uk/news/forward-me-group-bodily-stress-syndrome/

    The briefing paper is also available as a PDF here, http://forward-me.org.uk/Reports/BODILY STRESS SYNDROME INFO SHEET.pdf
     
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  2. Aimossy

    Aimossy Established Member (Voting Rights)

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    The new wave is approaching
     
  3. Amw66

    Amw66 Senior Member (Voting Rights)

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  4. Londinium

    Londinium Senior Member (Voting Rights)

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    This is just one of these zombie ideas that every time you think has been knocked down (because, yet again, treatment based on that idea fails to work) it just pops back up rebranded under a different name.

    I don't think Forward-ME should work on these topics alone: IMHO it is critical to work with other charities that cover conditions where patients struggle to get a diagnosis. MS, SLE, MND all come to mind as replacing MUS with BSS (they should drop the final S) is going to lead to a lot of people with various tricky-to-diagnose health conditions being chucked in the psych bucket by overworked GPs.
     
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  5. Hutan

    Hutan Moderator Staff Member

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    BS Syndrome. As in, 'I've been diagnosed with BS syndrome and now I'm going to be given BS treatment'.

    If you didn't laugh, you'd cry.

    Thanks to Dr O'Leary for highlighting the issue.
     
  6. Aimossy

    Aimossy Established Member (Voting Rights)

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    @dave30th
    Might want to be made aware of this.
     
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  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    "When primary care providers think the source of physical symptoms is psychiatric rather than mental"

    don't they mean 'rather than biological' or is there a difference between psychiatric and mental?
     
  8. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    I don't have a good understanding of all the goings on but is there a danger that the WHO will remove ME from the 'neurological' category into BSS? I so hope this is not likely...also when is this WHO update due to be finalised?
     
  9. Andy

    Andy Committee Member & Outreach

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    You are probably right but of the two references given against that quote, one is paywalled at https://academic.oup.com/fampra/article-abstract/34/5/574/3798233?redirectedFrom=fulltext and the other doesn't contain that quote, as far as I can see, https://www.vumc.nl/afdelingen-themas/49661/20678990/4.3_Rosendal_MUS_BSS_WHO.pdf, so it's hard to confirm.
     
  10. Andy

    Andy Committee Member & Outreach

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  11. Trish

    Trish Moderator Staff Member

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    Trying to get my head around this. Here's what I understand. Do correct me if I'm wrong.

    The WHO has two different classification systems:

    One overall one that classes ME/CFS as a neurological condition, and has BDD (bodily distress disorder) as a psychiatric condition, but does not include ME in this.

    The other one specifically for Primary Care which is the one where a new classification called Bodily Stress Syndrome (BSS) may be introduced that is based on broad symptom clusters, and would include ME/CFS.

    This would presumably give the green light to Primary Care providers world wide to dump anyone with symptoms within those broad symptom clusters into BSS and save a lot of money on investigations by directing them straight from primary care to psychological therapies.

    This is exactly what the UK is already trying to do with their IAPT therapy clinics for MUS (medically unexplained symptoms) under their leading lights, Rona Moss Morris, Michael Sharpe, Trudie Chalder et al. And they are using PACE as 'evidence'.

    Aaaargh!
     
  12. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  13. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    Surely that slide in post #10 was produced in 2010, based on what it says in the bottom right-hand corner. Is it still relevant?
     
  14. Andy

    Andy Committee Member & Outreach

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    It's part of the 'research' base they are using to justify all of this. Their work to lead up to this started, at least, in 2010, if not earlier.
     
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  15. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    This article/paper can be found here :

    http://sci-hub.tw/10.1093/fampra/cmx033

    A quote from it :

    Imagine a patient who has a physical health problem. The doctor doesn't believe the patient and decides they are mentally ill. They also put a code on the patient's notes (I used to know what it was but I've forgotten it), so that no other doctor can find out how useless the first doctor was in diagnosis. Because their problem is not being taken seriously, the patient becomes psychologically distressed and over time develops high levels of health anxiety. This state of affairs has been going on throughout human history in some form or other, but is clearly going to get an awful lot worse. I find it shocking that GPs will be earning in excess of £100,000 a year to destroy tens or hundreds of thousands of lives and just leave people sick, then blame the patient for the medical profession's own failures.

    Edit : The code I couldn't remember is "16h". I don't know how long the code has been in use, but I know doctors have had methods of alerting other doctors to patients they don't like for various reasons for many decades (at the very least).
     
    Last edited: Apr 5, 2018
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  16. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    Does anyone know if ME Action etc.... are stepping in and doing something...are there any ME organisations acting up to try to stop this. If this goes ahead, its a really massive setback.
    @Emily Taylor
     
    Last edited: Apr 5, 2018
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  17. Andy

    Andy Committee Member & Outreach

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    I've written to the author to see if she will clarify it for me.
     
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  18. emma

    emma New Member

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    DxRevisionWatch is a brilliant source of facts about all things WHO ICD. She has been doing an amazing job for many years, trying to fight this and keeping us informed.

    http://www.twitter.com/dxrevisionwatch

    She's probably the best one to ask if you have questions ot need clarifications, explanations etc.
     
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  19. Trish

    Trish Moderator Staff Member

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    Hi @emma, welcome to the forum. I agree @Dx Revision Watch is a good person to turn to for information on this.
     
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  20. Medfeb

    Medfeb Senior Member (Voting Rights)

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    Agree that it would be a good idea to contact Suzy Chapman

    I have some concerns with this letter.

    First, the letter states the following:
    Many have been aware that the category of “somatoform disorders” is under revision in that draft[xiii]. This is the diagnosis in psychiatry for physical symptoms caused by mental distress, and it will be replaced in the general ICD by “bodily distress disorder”, or BDD (which is a lot like “somatic symptom disorder” in the most recent DSM). Criteria for BDD are not particularly problematic for ME patients. They are compatible with construing ME as a biological disease.

    I disagree with the bolded statement and a similar statement elsewhere in the document. Terms like somatic symptom disorder, BDD and all the other terms that frame physical symptoms as a psychological condition are particularly problematic for people with ME because the disease is widely misunderstood and has a history of being conflated with these terms.

    When the DSM-5 was under development, a broad cross-section of disease groups objected to the term "somatic symptom disorder" because its criteria were so broad - a patient can be given this diagnosis if the provider "feels" that the patient's concerns with their symptoms are "excessive." Even the chair of the DSM-4, Allen Francis, published articles about the problems with this construct. Here's one - https://www.psychologytoday.com/us/...sm-5-refuses-correct-somatic-symptom-disorder

    Beyond that, from discussions with Suzy Chapman, a) its not clear to me that WHO has actually made a decision on the BSS category or on proposals being floated by other groups b) its not clear which countries use this primary care version being discussed. I think it will be important to clarify both of these

    Finally, this statement is quite bold but I'd want to see the evidence that WHO actually "intends" to route ME patients into psychiatry.
    At this time it seems clear that the US health authorities driving the new biological approach to ME are unaware of the WHO’s intention to route ME patients across the globe into psychiatry through the ICD-11-PHC.

    Some background regarding ICD-11 - There are two main proposals that I know of. Suzy and I submitted a proposal to ICD Revision last March to retain ME and CFS in the neurological chapter. A second proposal was submitted in November 2017 to move ME and CFS to the Symptoms chapter under symptoms of the musculoskeletal system because fatigue is "a manifestation of skeletal muscle dysfunction." This second proposal is remarkably flawed, ignored most of the biomedical evidence and instead relied heavily on the CBT/GET/Biopsychosocial studies.

    WHO has stated that they are not going to make any decisions on these proposals until they complete an evidence review, which is due shortly. Suzy and I submitted a response to the second proposal that summarized its flaws and called on WHO to include the breadth of evidence assessed by IOM and in more recent studies.
     
    Last edited: Apr 5, 2018

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