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Priority Setting Partnership: Medically Not Yet Explained Symptoms

Discussion in 'Health News and Research unrelated to ME/CFS' started by Andy, Jun 29, 2020 at 8:55 AM.

  1. Andy

    Andy Committee Member & Outreach

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    Dutch researchers involved, what could possibly go wrong....
    https://www.york.ac.uk/healthsciences/research/mental-health/projects/mnyes/

    The Steering Group (which looks very over-balanced in favour of 'professionals')
    And their current survey, https://york.qualtrics.com/jfe/form/SV_1LdGIB0MF6Z4iCV, which doesn't say when it closes...
     
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  2. alktipping

    alktipping Senior Member (Voting Rights)

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    I knew as soon as cultural differences was mentioned that it would be loaded with shrinks . I do not hold out any hope for this actually advancing any kind of biological research that would be useful.
     
  3. wdb

    wdb Senior Member (Voting Rights)

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    I like that they are calling them 'medically not yet explained' but I'm not convinced they are being sincere or they would have written where the cause has not yet been explained by medical investigations or tests.

    And given the number of psychiatrists/psychologists/physiotherapists involved I don't expect any of this research will be looking to identify any medical explanations.
     
  4. MEMarge

    MEMarge Senior Member (Voting Rights)

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    I recognise one GOOD consultant on there:

    Dr Nick Gall, Consultant Cardiologist, Kings College Hospital NHS Foundation Trust

    He has been excellent at getting testing and treatment for adolescents with POTS. (Probably adults too, but I only follow a parents' FB group). Some youngsters diagnosed with ME have had huge improvement in function, ie actually able to do more, on certain meds.

    Disappointed they don't use the term YUMS: Yet to be Understood Medical Symptoms!
     
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  5. Trish

    Trish Moderator Staff Member

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    Looks doomed from the start with a steering group stacked to the chimneys with psychiatrists and psychologists.
     
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  6. Hutan

    Hutan Moderator Staff Member

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    I've answered the survey. In reply to the question about what research I would like to see in response to Medically Not Yet Explained Symptoms:

    • Why so many medical professionals seem unable to sit with uncertainty, resorting to psychosomatic explanations to explain away conditions that they can't otherwise diagnose.
    • Quantifying the harm caused by labelling people as having psychosomatic disorders

    You can put as much or as little as you want for an answer; there's just a few more demographic questions, mostly optional. I reckon it's good to give them some ideas of what we want to see.

    Another one might be analysing the problems that plague MNYES (MUS) research.

    You can register to later vote on the top ten priorities.
     
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  7. Trish

    Trish Moderator Staff Member

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    I filled it in. If you're a bit foggy it is probably worth having a good think before you start. I was expecting to have a bit more guidance about what sort of thing they were looking for but it's completely open ended. I didn't mention biomedical research. I can't remember exactly what I said, but it was along the lines of:

    how can it be ensured that research on psychological treatments for physical symptoms uses only objective primary outcome measures that measure meaningful benefit to patients

    how can medical education can be improved so doctors don't treat patients with unexplained symptoms as 'heartsink' patients and take symptoms seriously and don't fob them off with useless therapy

    Research the medical care needs of patients so severely impacted that they are housebound and too sick to access the medical care they need.

    Research how those care needs of severely affected patients can best be met.

    Edit: I've just remembered I said something about researching how to ensure patients can get referral to a consultant physician to do a thorough diagnosis rather than being shunted off to psychological therapy.
     
    Last edited: Jun 29, 2020 at 3:20 PM
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  8. NelliePledge

    NelliePledge Moderator

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    What patient organisations are involved in this? It should of course be a wide range. But if this is the first we’ve heard of it looks like they are attempting to fly under the radar. How did they recruit the patients?

    the survey needs sharing by ME organisations. People with ME need to understand they are in this category’


    MUS is a Trojan horse for BPS mentality to maintain influence in the NHS. If ME remains bracketed as MUS it will be difficult to change anything even if the NiCE guidelines drop GET.
    I would like to know if ME Association @Russell Fleming and @Action for M.E. have even been informed of this work by the James Lind Alliance.
     
    Last edited: Jun 29, 2020 at 11:53 AM
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  9. Andy

    Andy Committee Member & Outreach

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    As far as I can see, none. I stumbled across it from this tweet


    A Twitter search of the link to the survey, only gives the tweet above and a further tweet from the same person. A Google search of the link only returns this thread.

    A Twitter search of the link to the home page for the PSP gives no results, and Google only returns the pages on the York uni website.

    It is either something totally new, or they have made woeful efforts to promote it.

    From, http://www.jla.nihr.ac.uk/priority-setting-partnerships/medically-not-yet-explained-symptoms/, the protocol and terms of reference were published 28th May, presumably without involvement of patient orgs.
     
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  10. Hutan

    Hutan Moderator Staff Member

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  11. NelliePledge

    NelliePledge Moderator

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    This is making me fume they are just blatant. And it doesn’t give much faith in James Lind surely they should be insistent on the patient engagement side that’s supposedly what they are there for.

    wondering if @dave30th would be interested in this latest snake from the MUS hydra head.
     
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  12. Trish

    Trish Moderator Staff Member

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    Perhaps someone could write a letter to them telling them to publicise the process properly through all the patient organisations that cover all the conditions they are including.
    I suspect they will say there aren't any, as they are talking about unexplained symptoms not named syndromes.
     
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  13. Hutan

    Hutan Moderator Staff Member

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    http://www.jla.nihr.ac.uk/documents/medically-not-yet-explained-symptoms-psp-protocol/24954

    Organisations can volunteer to be partners.
     
  14. Trish

    Trish Moderator Staff Member

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    So somebody or some organisation is keeping a tight control on who is allowed to participate. I think it should be made public which organisations are regarded as having a conflict of interest and why.
    Something else to write to them about.
    @dave30th.
     
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  15. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I took the survey and gave them a piece of my mind/body/whatisname.
    I have had all their symptoms, not yet explained, but so what?
     
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  16. strategist

    strategist Senior Member (Voting Rights)

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    I took the survey and asked some difficult questions they won't like.

    Not sure about the usefulness of working on broad categories like "pain" and "fatigue", as if all pain and all fatigue was the same.
     
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  17. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I agree, the pains in my legs have a different not yet explanation from the one in my neck. I am sure of that much.
     
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  18. Esther12

    Esther12 Senior Member (Voting Rights)

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    Are two of the five patient representative related too? I wonder how they were selected.

    This looks terrible. It could be worth asking the James Lind Alliance about this?
     
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  19. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    From a quote in the first post in the thread :

    So, in 70 - 90% of visits to doctors, the doctors know exactly what the patient's symptoms are caused by and what is wrong with the patients on first presentation? That astonishes me. It sounds like completely arrogant crap to me.
     
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  20. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    What does the acronym PSP mean in the first post?
     
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