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Trial By Error: A Post About Lupus and MUS, Not COVID

Discussion in 'Other psychosomatic news and research' started by Andy, Apr 9, 2020.

  1. Andy

    Andy Committee Member

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    https://www.virology.ws/2020/04/08/trial-by-error-a-post-about-lupus-and-mus-not-covid/
     
  2. Hutan

    Hutan Moderator Staff Member

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  3. MeSci

    MeSci Senior Member (Voting Rights)

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    Invisible Woman likes this.
  4. rvallee

    rvallee Senior Member (Voting Rights)

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    Mission accomplished? That's basically the only goal of MUS: reduce healthcare-seeking behavior. Now what? It's hurting people and doing nothing else, well, aside from also insulting them. It's hurting people with medically uninteresting symptoms and people with "proper" "conventional" diseases. As MUS metastasizes further, there is only way for those numbers to go and it's up. 7 years is already a pathetic failure that doesn't seem to bother anyone other than the patients and all efforts seem directed at increasing that.

    It would be illuminating to try and quantify the impacts on various diseases, how it delays diagnoses and harms other patient populations. Probably too expensive to do and the conclusions are pretty obvious, nobody wants to touch that.

    Monkey paw lowers one finger
     
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  5. wdb

    wdb Senior Member (Voting Rights)

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    Makes me wonder how many people diagnosed with MUS actually do have lupus (or similar) who we have no data on as they will die never finding this out due to being denied any further investigations as a waste of time.
     
    ukxmrv, rvallee, Simbindi and 11 others like this.
  6. dave30th

    dave30th Senior Member (Voting Rights)

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    Good question.
     
  7. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    I was denied investigations into Lupus at first, despite my GP flagging it up - the rheumatologist I saw first said the blood tests didn’t mean anything, I definitely had CFS and needed to do CBT. He refused to do any further investigations or tests.
    If I hadn’t gone private after that and seen another doctor, I wouldn’t have got the diagnosis and would have continued down the MUS / PPS / CFS path only.
     
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  8. dave30th

    dave30th Senior Member (Voting Rights)

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    so did you get a lupus diagnosis? And you also have a CFS or ME diagnosis?
     
  9. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Yes I did get a lupus diagnosis
    And I also have an ME/CFS diagnosis
     

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