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MUS services in UK and other MUS related issues

Discussion in 'General ME/CFS news' started by Sly Saint, Feb 24, 2019.

  1. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    6,332
    Alive and well here.
    Recently listened to a educational psychologist enthusiastically espouse
    ACEs training in schools and CBT for autistic children....no robust evidence base for any of it.
     
    bobbler, alktipping, MEMarge and 3 others like this.
  2. Hoopoe

    Hoopoe Senior Member (Voting Rights)

    Messages:
    5,255
    The vicious circle of psychosomatic medicine:

    An illness is poorly understood -> psychosomatic medicine zealots seize the opportunity, declare it a psychogenic illness and make up some stigmatizing narrative to discredit sufferers and control them -> entrenched business interests and public perception that it is psychogenic illness and that sufferers are "difficult" hinder efforts to make progress -> the illness remains poorly understood.

    Sufferers are mainly "difficult" because they are being stigmatized and treated badly, as consequence of the model imposed on them.
     
  3. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    4,602
    It is interesting that this book is not referenced in either of SW's papers on neurasthenia, and was therefor presumably not referred to in the papers to which he does refer. That is strange because those diagrams look very much like simple prototypes of the ones appearing circa 1990.

    Would it be fair to say from this book that neurasthenia covered any idiopathic chronic illness in which periods of remission occurred?
     
    bobbler, alktipping, Simbindi and 7 others like this.
  4. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

    Messages:
    3,511
    Location:
    Belgium
    Interesting reference, thanks for sharing.
    https://www.jstor.org/stable/25310441?seq=1#page_scan_tab_contents

    In some quotes it's almost like you're hearing the BPS view on CFS:
    The treatment didn't consist of graded activity but of an aggressive resting cure as proposed by Weir Mitchell. But also of reattribution:
     
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  5. Hoopoe

    Hoopoe Senior Member (Voting Rights)

    Messages:
    5,255
    Maybe we need a trial of aggressive rest therapy? :D With just minimum activity to prevent the worst deconditioning.
     
    alktipping, ukxmrv, MEMarge and 4 others like this.
  6. Sean

    Sean Moderator Staff Member

    Messages:
    7,210
    Location:
    Australia
    That advice has worked out well, hasn't it. :rolleyes:
     
    Gradzy, bobbler, alktipping and 10 others like this.
  7. Trish

    Trish Moderator Staff Member

    Messages:
    52,324
    Location:
    UK
    I sometimes think if only Wessely et al had decided 30 years ago that aggressive rest therapy, pacing and listening to your body were the best management strategies for ME, instead of GET and ignoring your symptoms, they might be our heroes today instead of the villains who have ruined so many lives and set back research for 30 years.
     
    bobbler, alktipping, ukxmrv and 11 others like this.
  8. chrisb

    chrisb Senior Member (Voting Rights)

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    4,602
  9. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,464
    Location:
    Canada
    As far as I am concerned, those two papers are part of the same cinematic universe.

    [​IMG]
     
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  10. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,464
    Location:
    Canada
    As usual:
    And there may be dragons there. There aren't, but it's fair to say that there may.

    My, my my. But this our old friend, rousing reassurance. It is indeed a very old friend. Also not a very useful one. One that may keep their opinion to themselves and leave those... more capable... to deal with complex problems.
     
  11. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,464
    Location:
    Canada
    Interesting to see that the concept of functional neurological thingies is that old. 1914. Impressive how this field manages to constantly recycle old ideas by tacking on a post-it that it's the same, but not the same.

    [​IMG]
     
  12. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

    Messages:
    3,341
    With apologies if this has already been posted:

    NHS Digital

    https://digital.nhs.uk/data-and-inf...19-final-including-reports-on-the-iapt-pilots

    Publication
    Psychological Therapies: reports on the use of IAPT services, England May 2019 final including reports on the IAPT pilots

    This is part of Psychological Therapies, Report on the use of IAPT services

    Official statistics, Experimental statistics
    Publication date:
    22 Aug 2019
    Geographic coverage:
    England
    Geographical granularity:
    Care Trusts, Clinical Commissioning Groups, GP practices, Independent Sector Health Care Providers, Mental Health Trusts, NHS Trusts
    Date range:
    01 May 2019 to 31 May 2019
    -------------------------

    Summary
    This statistical release makes available the most recent Improving Access to Psychological Therapies (IAPT) monthly data, including activity, waiting times, and outcomes such as recovery.

    IAPT is run by the NHS in England and offers NICE-approved therapies for treating people with depression or anxiety.

    This release also includes experimental statistics from the IAPT integrated health pilot and the IAPT Employment Adviser pilot.

    This release has been delayed from the pre-announced publication date of 8th August 2019, due to operational reasons.

    We hope this information is helpful and would be grateful if you could spare a couple of minutes to complete a short customer satisfaction survey. Please use the survey in the related links to provide us with any feedback or suggestions for improving the report.

    Resources
    Related links
    Last edited: 22 August 2019 6:02 am

    -----------

    Upcoming
     
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  13. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,279
    Location:
    UK West Midlands
    So the “gold standard” Chalder Fatigue Questionnaire is used in these official stats to report the performance of IAPT Long Term Conditions aka MUS as a measure of “recovery” for CFS Executive Summary Appendix 3,
     
    Last edited: Aug 28, 2019
  14. Annamaria

    Annamaria Senior Member (Voting Rights)

    Messages:
    260
    You couldn't make it up!
     
  15. Trish

    Trish Moderator Staff Member

    Messages:
    52,324
    Location:
    UK
    The summary report headlines a recovery rate of 52.1%

    Further down the report, we see that only 37.4% of referrals attended a full course of treatment. The majority either didn't attend at all, or didn't make it past the first session.

    So that 52.1% recovery is actually that percentage of the 37.4% completers.

    So the headline figure should be 19.5% of referrals 'recovered'.

    Doesn't look so good.
     
  16. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    6,332
    Still 10% above the paper by Scott?
     
    alktipping and MEMarge like this.
  17. Simbindi

    Simbindi Senior Member (Voting Rights)

    Messages:
    2,746
    Location:
    Somerset, England
    And the really worrying bit from the same Appendix:

     
  18. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

    Messages:
    3,341
    http://www.londonhp.nhs.uk/wp-content/uploads/2011/03/MUS-whole-systems-approach.pdf

    Medically Unexplained Symptoms (MUS)
    A whole systems approach

    July 2009 – December 2010


    Page 20

    "It may be possible within the new polyclinic model that the routine of psychologists working
    with consultants would develop. Equally, they could work in hospitals in more structured ways
    such as a ‘pelvic pain’ clinic.

    "We would suggest that one consultant in each department should lead on this area of the
    work, helping other consultants to think about difficult presentations, ensuring patients can
    access the psychologist appropriately and reviewing the care of patients where no biological
    explanation can be found. At present, patients are referred back to primary care or on to
    another secondary care department, thus allowing the clinician to maintain the idea that
    medically unexplained symptoms are not part of their work.

    "It will be necessary for acute clinicians working in these clinics to code patients that they feel
    may have MUS. There are often no codes available to do this in these specialities. We would
    advise therefore that the ICD codes F44, F45 and F48 are used as ‘catch-all’ codes. These
    would include any situation where the clinicians felt there was an element of MUS affecting the
    patient and their management. This is necessary in order for outcomes to be quantifiable.
    These codes are to be used to monitor outcomes; clinicians can use the codes where
    appropriate, in conjunction with other codes."


    Note that under F48.0 Neurasthenia (and its inclusion: Fatigue syndrome) there is an exclusion (Excl.) for G93.3.

    Also note:


    [​IMG]


    But there are no exclusions for G93.3 under the ICD-10 F45.x codes.

    So an additional F45.x diagnosis can be added to an existing or new diagnosis of G93.3, or to any other disease or condition.

    "F45 Somatoform disorders

    "The main feature is repeated presentation of physical symptoms together with persistent requests for medical investigations, in spite of repeated negative findings and reassurances by doctors that the symptoms have no physical basis. If any physical disorders are present, they do not explain the nature and extent of the symptoms or the distress and preoccupation of the patient."



    Compare this with Bodily distress disorder for ICD-11, which replaces most of the ICD-10 Somatoform disorder categories and also subsumes and replaces F48.0 Neurasthenia.

    A patient may be diagnosed with BDD, or an additional diagnosis of BDD can be added in the presence of a general medical condition or disease.

    "...If another health condition is causing or contributing to the symptoms, the degree of attention is clearly excessive in relation to its nature and progression."


    Contrary to Dr Diane O'Leary's contention that:

    "Criteria* for BDD are not particularly problematic for ME patients. They are compatible with construing ME as a biological disease" [1]

    BDD is very problematic and I have continued to push for exclusions for the ICD-11 8E49 terms.

    *NB: There are no "criteria" as such for ICD-11's BDD but a disorder description and characterization text, which allows clinicians more flexibility to use clinical judgement when assessing whether a patient meets the required features and disorder description than the more rigid DSM-5 Somatic symptom disorder (SSD) criteria set and thus poses an even greater threat to patients with chronic, multiple symptoms.

    1 “BODILY STRESS SYNDROME” INFO SHEET, March 2018, Dr Diane O'Leary for Forward-ME:
    http://www.forward-me.org.uk/Reports/BODILY STRESS SYNDROME INFO SHEET CORRECTED.pdf
     
    Last edited: Aug 28, 2019
  19. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,464
    Location:
    Canada
    How can something that isn't even a standard be a "gold" standard, or a "anything" standard?
     
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  20. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,464
    Location:
    Canada
    Considering what constitutes "recovery" in this context, this is about as big a failure as you can get. Expected, of course, but the lies, the lies!

    The bar is so low it is below the water table and still most don't even make it past. To think of all the money that has been wasted on this, with the consequence of actually regressing the entire field of medical science.

    Who knew that relying on methodologically corrupted subjectively-evidenced and wildly inflated pseudoscience would be a bad idea? Everyone? Oh yeah, that's right, everyone.
     
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