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David Tuller - Trial By Error: Mayo Clinic's Crappy Website

Discussion in 'General ME/CFS news' started by Kalliope, Dec 10, 2019.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Location:
    Norway
    Mayo Clinic's Crappy Website

    What’s going on at the Mayo Clinic? It has been more than two years since the US Centers for Disease Control and Prevention (CDC) removed cognitive behavior therapy and graded exercise therapy as treatments of choice for the illness it now calls ME/CFS. And Mayo still seems not to have noticed that anything has changed—unlike Kaiser Permanente, for example, which acknowledged earlier this year that it had been wrong about the illness.
     
    Yessica, Joh, Sisyphus and 37 others like this.
  2. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Thank you, @dave30th for another excellent article.
     
    Joh, Anna H, rvallee and 15 others like this.
  3. Milo

    Milo Senior Member (Voting Rights)

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    The thing is, the website is telling how they treat their patients at Mayo. Over the years, through forum posts and other social media channels, we have learnt that their service is all about group therapy, CBT, GET and the like.
     
  4. dreampop

    dreampop Senior Member (Voting Rights)

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    411
    Exactly, they have changed nothing because they recieve many me/cfs patients who are still trying to find out what's wrong, and offer to enroll them in cbt/get/stress relief services that they have a financial interest in, and are generally just comfortable with that system.

    Do they want to stop those programs? Probably not.
     
    Sid, Kalliope, Sean and 4 others like this.
  5. Milo

    Milo Senior Member (Voting Rights)

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    The thing is for most discipline, Mayo clinic is the go-to place to get answers on what ails you. I suspect that new patient fall into this trap until they know better.
     
    MEMarge, DokaGirl, Kalliope and 3 others like this.
  6. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    That isn't necessarily true today. Historically, it might have been, but now it is more PR/marketing... I've heard of plenty of bad stories not limited to ME or CFS...
     
    alktipping, Sid, Louie41 and 4 others like this.
  7. NelliePledge

    NelliePledge Moderator Staff Member

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    So Mayo Clinic is basically doing to US patients what the NHS is doing to UK patients. This is why PACE is a worldwide not simply a U.K. issue.
     
    alktipping, MEMarge, Anna H and 6 others like this.
  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    one of the comments
    "Does this have anything to do with Mayo Clinic’s ‘powerful’ partnership with Oxford University Clinic, I wonder? (https://mch-ouc.co.uk/about/#a-powerful-partnership) "
    I didn't know about this partnership, also didn't know that Mayo/Ox have a clinic in Harley St.

     
    alktipping, inox, MEMarge and 12 others like this.
  9. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    The 'Oxford University Clinic' is in Harley Street. It seems to have the blessing of Oxford University but is presumably a private clinic using the name. A sign that PR/marketing has pretty much taken over everywhere I guess.
     
  10. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  12. Trish

    Trish Moderator Staff Member

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    Here's what they say about exercise:
     
    Ravn, ScottTriGuy, Michelle and 3 others like this.
  13. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    2,876
    Still missed the point that any increases must be within an individual’s limits and that people should be prepared that they may hit a ceiling even when only gradually increasing activities by small increments.
     
    MEMarge, Ravn, Mij and 9 others like this.
  14. shak8

    shak8 Senior Member (Voting Rights)

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    1,480
    Location:
    California
    Mayo clinic website advice is useless, watered down pablum. The reading level is for age 7.

    I use the CDC or the NIH websites for general medical info.
     
    Ravn, alktipping, Mij and 5 others like this.
  15. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    It reminds me of:

    The Queen said
    "Oh!:
    And went to
    His Majesty:
    "Talking of the butter for
    The royal slice of bread,
    Many people
    Think that
    Marmalade
    Is nicer.
    Would you like to try a little
    Marmalade
    Instead?"

    The King said,
    "Bother!"
    And then he said,
    "Oh, deary me!"
    The King sobbed, "Oh, deary me!"
    And went back to bed.
    "Nobody,"
    He whimpered,
    "Could call me
    A fussy man;
    I only want
    A little bit
    Of butter for
    My bread!"

    In this case:
    For King read physiotherapy department
    For butter read GET
    For marmalade read pacing and common sense

    In the poem and at Mayo the King gets his butter. I wonder what the NICE dairymaid will say next time?
     
  16. Sean

    Sean Senior Member (Voting Rights)

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    4,789
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    Australia
    That would be the deconditioning that they still have not established the existence of.

    "may"

    By which they mean 'we have no idea'.
     
  17. dave30th

    dave30th Senior Member (Voting Rights)

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    1,735
    loved that poem as a kid.
     
  18. Daisybell

    Daisybell Moderator Staff Member

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    2,609
    Location:
    New Zealand
    So really what they are saying is “we had to change the website because pesky patients were being difficult, but we still believe that exercise is going to make you better”.
    Grrr..
     
    ukxmrv, Shinygleamy, Webdog and 12 others like this.
  19. rvallee

    rvallee Senior Member (Voting Rights)

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    Yup. Just like Cochrane. Keep the substance as is, change a few terms here and there.
     
    Shinygleamy, MEMarge, Ravn and 5 others like this.
  20. Ravn

    Ravn Senior Member (Voting Rights)

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    To be fair it is vastly better than it was, which was utterly appalling. Still not good, exactly - the exercise bit is way too garbled for that - but apart from that it now roughly aligns with IOM/NAM. Baby steps.
     
    Shinygleamy, MEMarge, EzzieD and 5 others like this.

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