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Medically explained symptoms: diagnostic, symptom and support experiences of patients with lupus and related systemic autoimmunity | Sloan et al. 2020

Discussion in 'Health News and Research unrelated to ME/CFS' started by Lucibee, Mar 2, 2020.

  1. Lucibee

    Lucibee Senior Member (Voting Rights)

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    Location:
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    Full title: Medically explained symptoms: A mixed methods study of diagnostic, symptom and support experiences of patients with lupus and related systemic autoimmune diseases
    Authors: Melanie Sloan et al. (UK universities)
    Link: https://academic.oup.com/rheumap/advance-article/doi/10.1093/rap/rkaa006/5758274
    (full pdf available at link above).

     
  2. Hutan

    Hutan Moderator Staff Member

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    An interesting paper - and a really important one I think when making the case that the MUS concept causes harm.
    @dave30th

    Good grief. And in line with a larger surveys:


    Like the UK ME Biobank paper (that interviewed people with MS and ME) found for people with MS, delays in diagnosis throw people into the MUS infested no-man's land that, I think we, even when diagnosed, permanently live in.


    Interesting that fatigue (and cognitive dysfunction) are seen as very debilitating.


    It was clear that lupus specialists provided people with lupus with the best care for their lupus symptoms. It's not rocket science, but in my country, we have no ME specialists and there are policies of having GPs manage all manner of conditions.


    The blind reliance on blood tests is highlighted as a problem for diagnosis, with the suggestion that many people remain undiagnosed. There are good words about clinicians needing to listen to and believe patients.
     
    Last edited: Mar 3, 2020
  3. Hutan

    Hutan Moderator Staff Member

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    Here's the full list of authors:
    Melanie Sloan, Rupert Harwood, Stephen Sutton, David D’Cruz, Paul Howard, Chris Wincup, James Brimicombe, Caroline Gordon

    The Institute of Public Health, University of Cambridge features strongly
    Also Lupus UK, Dept of Rheumatology of University College London, University of Birmingham

    Perhaps there are some people in that list who might be interested in collaborating with ME/CFS organisations.
    Edit - maybe Melanie Sloan would be a good person to present the findings at a CMRC conference?
     
    Last edited: Mar 3, 2020
  4. dave30th

    dave30th Senior Member (Voting Rights)

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    Thanks, I'll take a look.
     
  5. strategist

    strategist Senior Member (Voting Rights)

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    I would like to introduce the term psychosomatic reductionism. Whatever symptoms the patient has, it can and will be "explained" as some sort of emotional or thinking problem. If any symptom really doesn't fit it's just ignored.
     
    Last edited: Mar 3, 2020
  6. Mithriel

    Mithriel Senior Member (Voting Rights)

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    Beautifully succinct. It describes our predicament in a nice soundbite which is what we need. I will keep a copy of that if it is OK.
     
  7. Sean

    Sean Senior Member (Voting Rights)

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    psychosomatic reductionism

    That works. :nerd:
     
    MEMarge likes this.

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