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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.

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  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    As increasingly pw ME/CFS are being referred through IAPT for treatment as MUS I thought I'd set up a separate thread from the ME/CFS Services in UK.

    "
    Medically Unexplained Symptoms: Primary Care Intervention
    University of Sheffield

    Subject Experts

    Professor Peter White
    is Professor of Psychological Medicine at Queen Mary University of London and honorary consultant in liaison psychiatry at St Bartholomew’s Hospital. His research has focused on illnesses that involve mind-body links, which incorporate MUS, particularly chronic fatigue syndrome (CFS) and chronic pain conditions. He has led a number of randomised controlled trials (RCTs) of behavioural modification interventions, particularly CBT and graded exercise therapy, and was lead co-principal investigator of the PACE trial of non-pharmacological treatments of CFS (www.pacetrial.org/).

    Professor Rona Moss-Morris is Professor of Psychology as Applied to Medicine and the Head of Health Psychology at the Institute of Psychiatry, King’s College London. She is National Clinical Adviser to NHS England for Increasing Access to Psychological Therapies for People with Long term and Medically Unexplained Conditions. Her research over the last 22 years has focused on developing cognitive behavioural models to explain the chronicity of symptoms and disability in MUS and using these models to design specific treatments for these conditions. Randomised controlled trials to test the clinical and cost effectiveness of these interventions form a key component of her research.

    Expert Advisory Group
    The project is also guided by an Expert Advisory Group which consists of a number of subject experts, including patient and charity representatives, clinicians and academic advisors. Together the Expert Advisory Group offers a broad range of MUS expertise, and is consulted at key points in the project in order to help the project team with developing the protocol, interpreting the results, and reviewing draft reports. The Expert Advisory Group ensures a broad range of opinion is heard and therefore plays a key role in reducing bias in the review."


    Which charities?

    https://www.sheffield.ac.uk/scharr/sections/heds/mus/who
     
    MSEsperanza, Cheshire, fossil and 7 others like this.
  2. Trish

    Trish Moderator Staff Member

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    That site you link to @Sly Saint has no date on it. The only date I could find was 2014 as 'recent' research by one of the people.

    It looks like there is a huge department at Sheffield University who study the economics of health interventions, do systematic reviews etc. This looks quite a 'heavyweight' project involving literature review and 'expert' guidance from PW, RMM etc.

    I'm guessing it might have finished and reported by now??
     
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  3. chrisb

    chrisb Senior Member (Voting Rights)

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    Possibly so, but that does not invalidate the question "What charities?".
     
  4. Trish

    Trish Moderator Staff Member

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    I agree.

    I was asking the separate question about whether the study has finished and been published. Perhaps someone could write to the department and ask both for published results and for details of charity involvement. (I'm not volunteering).
     
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  5. MEMarge

    MEMarge Senior Member (Voting Rights)

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    This is where Prof Chris Burton is based. He is on the Guideline Development C'ttee for NICE.

    His book on ABC of MUS includes a chapter on Fatigue by Alison Wearden!
     
  6. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    This is the precise problem. She is as a former OT now psychologist trying to explain our illnesses through a CBT model based on the assumption that that’s appropriate because there’s not significant biological causes ... when there actually are we just haven’t found them because we haven’t looked hard enough... because of the CBT model explanations.
    I don’t see how CFS Has any more significant mind-body link than heart disease, diabetes, MS or acne. I think that its just been a pet project of people coming with that research interest. ​
     
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  7. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    I think that one of the reasons the researchers want to include ME/CFS in MUS, over and above empire building, is that they can lay claim to the PACE study as justification for their behavioural and psychological approach to treatment.

    What little I have read of MUS relies heavily on PACE and associated CFS studies as evidence of the efficacy of their intervention. So not only are they relying on bad research, but they are assuming without evidence that it can be generalised from people meeting the disastrous Oxford criteria for CFS to anyone classified as MUS.

    Once PACE is accepted to have been debunked, there is going to be a gaping hole in their rationale.

    Do we know which areas in the UK are now offering MUS services? I seem to recall there is one in Cumbria and another in the South West (Devon and Cornwall).
     
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  8. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Can something radical be done, like a Cambridge union debate set up where Rona moss Morris defends the MUS model versus the biomedical model advocate and then other people chip in. Where they can’t just exist in some powerful bubble, alternating between saying la la la and you harasser to anything CFS patients or “our side “ say. Where researchers actually have to connect with and account to the patient group they’re basing their career on and proclaiming to save. Where they actually have to take on board that we with ME don’t feel their work on fatigue useful and listen to why.

    You experct researchers to be deeply embedded within the community they work and to treat their patients with utmost respect and compassion whereas i think that most Of us feel that this CBT model and approach has been imposed on us and we are treated like a problem to manage or even hush up, rather than genuinely engage with. I think that this could would only happrn in the psychology field. I know that part of the issue is the CFS umbrella so in the clinic they might feel they are contributing when someone is passed on up them with MUF from a GP, but to shut down and dismiss large groups of patients in a world of evolving science is blinkered and their stuff on ibs they push out looks equally part bat shit. They might mean well and enjoy health work but that’s not justification, I don’t respect how they conduct their research or how in CFS they ignore the biological side.
     
    Last edited: Feb 24, 2019
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  9. Simbindi

    Simbindi Senior Member (Voting Rights)

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  10. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    There is also a thread here:

    https://forums.phoenixrising.me/thr...ary-care-whats-happening-across-the-uk.48710/

    MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?

    [39 pages]

    which was started on January 11, 2017, which includes links for IAPT and MUS reports, MUS services, PPS services, papers etc.


    From Post #410:

    https://forums.phoenixrising.me/thr...ening-across-the-uk.48710/page-21#post-806367

    22 "Early implementer" sites for developing integrated IAPT services here:


    https://www.england.nhs.uk/mental-health/adults/iapt/mus/sites/

    (see page for list of areas and summaries of services)


    Call for Bids document:

    https://www.england.nhs.uk/wp-content/uploads/2016/12/mental-health-call-to-bid.pdf

    Extract:



    [​IMG]


    Wave two Integrated IAPT sites
    15 new sites unveiled in integrated IAPT expansion:


    https://www.england.nhs.uk/mental-health/adults/iapt/mus/wave-two-integrated-iapt-sites/

    A second wave of integrated psychological therapies which will help people with a long-term physical health condition alongside their anxiety, depression or medically unexplained symptoms has been announced by NHS England.

    This second phase of Integrated IAPT (Improving Access to Psychological Therapies) funding will see 15 new sites across England, representing 38 clinical commissioning groups (CCGs), delivering improved access to treatment and better outcomes for patients.

    The wave two IAPT sites, and their respective CCGs partnerships, are

    1. Bath and North East Somerset CCG, Wiltshire CCG
    2. Coventry & Rugby CCG, South Warwickshire CCG, Warwickshire North CCG
    3. Nottingham City CCG
    4. Sheffield CCG
    5. Solihull CCG
    6. South East Staffordshire & Seisdon CCG, Cannock Chase CCG, Stafford & Surrounds CCG, East Staffs CCG
    7. Thurrock CCG
    8. Blackpool CCG, Wyre and Fylde CCG, Chorley & South Ribble CCG, West Lancashire CCG, Lancashire North CCG
    9. Haringey CCG, Islington CCG
    10. Brent CCG, Harrow CCG, Central London CCG, West London CCG, Hammersmith & Fulham CCG, Ealing CCG, Hounslow CCG
    11. Dorset CCG
    12. Ashford CCG, Canterbury & Coastal CCG, South Kent Coast CCG, Thanet CCG
    13. North East Lincolnshire CCG
    14. Hardwick CCG, North Derbyshire CCG, Southern Derbyshire CCG, Erewash CCG
    15. Telford & Wrekin CCG.

    Loads of IAPT and MUS resources in that thread.


     
    Last edited: Feb 24, 2019
  11. Sarah

    Sarah Senior Member (Voting Rights)

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    Would it be worth broadening the scope of this thread in the OP and/or title to include allied concept terms (such as PPS), upcoming and past courses, presentations, other MUS etc-related documents, and member experiences?

    With respect to integrated IAPT, from April 2018 'all clinical commissioning groups are required to offer IAPT services integrated with physical healthcare pathways.'

    [PDF] The Improving Access to Psychological Therapies (IAPT) Pathway for People with Long-term Physical Health Conditions and Medically Unexplained Symptoms
    21 March 2018

     
  12. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    National Information:

    Local Servces

    Sorry run out of time now, will come back to this. Interestingly there seems to be a lot of services saying they are for CFS, long term conditions and MUS and implying a conflation of all three. I had not realised how far the roll out of 'Improving Access to Psychiatric Services' had got. I guess it will be a couple of years before people with ME will turn up in the forums complaining of the harm caused by specific MUS services, as they need to develop the self confidence to assert 'no it is not me failing, it is the MUS service'.
     
  13. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    OMG OMG
    Thanks for sharing this further information @Peter Trewhitt id not taken this iapt stuff too seriously but watching just that video on the London MUS page linked, as a patient was horrifying.

    It starts out with a clear inclusion of FM, CFS and IBS as MUS. Then the head of MH. in a very business expansionist way seems intent on rolling out their “services”, they talk about collaborating with “service uses” but then it becomes clear that they see their chief role as managing deluded patients so who’s going to welcome that? then these foreign drs (sorry it sounds non pc here but hearing people in foreign accents saying stuff like the patients are very attached to somatic explanations but ‘“ ve have ways of changing their minds “ (my exaggerated paraphrasing) was creepy) are much more assertive about treating people convinced of somatic explanations with their, obviously correct because they’re drs, psychological treatments and there’s a bizarre line about people need to understand that they aren’t saying there’s necessarily a psychological cause when they offer these psychological treatments , which said like that sounds crazy.

    The GP, repeatedly cut, interview also showed why this is so popular, a way to channel away those depressing frequent flyers with “something” and save resources.

    People like us should not be in the hands of people like them and I still can’t help but think whilst there’s been some token gesture towards biomedical research, the uk establishment can’t be oblivious to what each limb is doing from the way NHS is approaching it, to the deliberate lack of research funds, to the initial refusal to update NICE , to the fact medical schools and RCGP are either not teaching it or are teaching a distortion.
     
    Last edited: Feb 24, 2019
  14. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    the site has 2019 in lower rh corner

    from what I can find this is about a research project thatt started in 2015 and was supposed to finish 2017 (that's if I've got the right one!)

    https://www.sheffield.ac.uk/scharr/sections/heds/mus/info
    https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=25520
    https://www.crd.york.ac.uk/prospero/export_record_pdf.php
    https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=4&cad=rja&uact=8&ved=2ahUKEwjd4KPU-dTgAhU6VxUIHW8pBp4QFjADegQIBhAC&url=https://njl-admin.nihr.ac.uk/document/download/2007338&usg=AOvVaw03jEe_b-20sZFMPNGgEu3A

    according to PROSPERO registering system the review is ongoing(?)
    still can't find out anything about the charities involved.
     
  15. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    which page was that? @Cinders66
     
  16. Andy

    Andy Committee Member & Outreach

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    Last update to that page was on 01/03/2016
    Code:
    <!-- Last modified: 2016-03-01 09:54:14 -->
     
  17. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    It was this link to a london MUS PAGE Peter gave above, there’s two videos on it.

    https://mus.elft.nhs.uk/
     
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  18. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    'Up to now it might be helpful but it is not an evidence based approach'.

    That is quite an interesting admission from one of the German doctors!
     
  19. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I have been through this East London Foundation Trust video and made some notes. It provides a very clear display of the confused double-speak underlying the whole programme. According to Moss-Morris the best evidence is for irritable bowel, chronic pain and chronic fatigue. I would be interested to know if the evidence for the other two was any better than for ME/CFS.

    The head of Mental Health NHS England simply seems to want to expand his service without any understanding of the clinical problem or the difficulties with the evidence.

    It is intriguing that two German psychosomatic doctors have been brought in - presumably because, as one says, this is all up and running and routine in Germany (despite lack of evidence).

    The overriding message is that these people are using a constant double-speak of 'no it is not mental but yes it is mental'. The clearest indication is at the end where Lahmann talks of changing patients' perceptions that they have somatic disease - he clearly thinks it is not somatic disease. Maybe he should ask himself what he actually does think it is.

    The GP starts talking about evidence but only to imply that actually it is not so interesting - listening is more important. He wants mental and medical to be all together and apparently does not like the idea of seeing a cardiologist or a neurologist. This is all just GP propaganda trying to justify the Jack of all trades position. Why if you take that position would you shunt patients off to German psychosomatic doctors?

    I think it is very helpful to see this showcase because it demonstrates just how flimsy the basis of it all is. Moss-Morris talks of specialised training of psychotherapists but how does anyone know what that training should be? And what is the justification for rolling out treatment techniques that have not been formally evaluated?

    Perhaps the thing I find most strange is that anyone should be persuaded by this sort of presentation. To me these talking heads are rally just saying 'we have no idea what we are about'.

    What is so difficult about telling patients the truth - that nobody knows how these symptoms arise and nobody knows what to do other than exclude important causes and be supportive.
     
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  20. chrisb

    chrisb Senior Member (Voting Rights)

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    The overall impression given is that the sole interest is the implementation of policy without regard to the substance of the policy, its effects, or the evidence for it. It is all merely management. There seems little regard for the clinical.
     
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