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Google health recommends a psychologist and GET to treat CFS/ME

Discussion in 'Advocacy Projects' started by Metastable, Feb 4, 2017.

  1. Metastable

    Metastable

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    Google recently added a new feature called Google health cards, which provides a summary of medical conditions.

    Unfortunately, for at least the regions of Australia and the U.S. it lists CFS as a psychological condition and graded exercise therapy and CBT as treatments. I think that this information has the potential to cause significant harm and it should be changed to reflect current state of research which has identified CFS/ME to be biophysical in nature.

    On the site it states that if there are errors that they can be reported via the feedback tab. I have done this and I encourage everyone to also do so. Here is the Australian link to a Google search for cfs https://www.google.com.au/search?q=...id-telstra-au&sourceid=chrome-mobile&ie=UTF-8

    (I have also posted this on Reddit/cfs)
     
    Joh, alex3619, zzz and 15 others like this.
  2. Snow Leopard

    Snow Leopard Hibernating

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    In this case, the recommendation for GET/CBT comes from the Mayo clinic - if we want the information to be changed it must first be changed at the Mayo Clinic.
     
    Joh, zzz, Invisible Woman and 11 others like this.
  3. xrayspex

    xrayspex Senior Member

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    u.s.a.
    That is interesting, I went to Mayo somewhere between 92-1994 to get a consult on chronic pain and fatigue that I thought was mostly initiated by an apparent neck injury and unrelated surgery--and that is sort of what they recommended back then---I remember it was very disappointing and felt like waste of a trip---they emphasized a more behavioral approach and didn't do much testing. Interesting they haven't changed much since then.
     
    Zombie_Lurker likes this.
  4. xrayspex

    xrayspex Senior Member

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    Weird, they talk about SEID be a similar but different diagnosis which it seems like maybe they give a little more respect to? I didn't know that is a thing, does it have an ICD and is it a preferrable diagnoses to get in terms of getting help or not being stereotyped as depressed? excerpt from Mayo site:

    "In contrast, for a diagnosis of systemic exertion intolerance disease (SEID), you must have the following three symptoms:

    • Unexplained, persistent fatigue
    • Extreme exhaustion lasting more than 24 hours after physical or mental exercise
    • Unrefreshing sleep
    And at least one of these two symptoms:

    • Cognitive impairment
    • Dizziness and lightheadedness"
    ---------

    when I googled SEID one thing that came up was this, showing that other Medical institutions in the states acknowledge some of the science and marker for CFS--why does wiki have to go by Mayo? I am usually under-impressed by Mayo's middle of the road bland info.....leave it to the mid-west to be hold back on what they say...maybe culture reflects in all the institutions......doncha know (I can say that as a midwesterner)...........

    http://scopeblog.stanford.edu/2015/...-its-blood-chemistry-signature-is-a-giveaway/
     
    Last edited: Feb 4, 2017
  5. Ellie K

    Ellie K

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    They still haven't changed this... is there more we can do besides just submitting feedback? This could be doing real harm to people who will not get appropriate help as a result of this misinformation (while also harming all of us because the public understanding of cfs won't change while this is still what people see when they google it...). I don't really know what can be done, but maybe a letter signed by patients and specialists or something...
     
    Invisible Woman likes this.
  6. Sea

    Sea Senior Member

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    Do you know whether they have CFS listed as a psychological condition?
     
  7. AndyPR

    AndyPR Senior Member

    They don't appear to list it as a psychological disease, as far as I can see.
    http://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490
    However, despite their page below being shown as having been updated 5th October, they still recommend CBT & GET.
    http://www.mayoclinic.org/diseases-...gue-syndrome/diagnosis-treatment/drc-20360510
    I'd be interested to see what research they are basing the "hypersensitivity to exercise" statement on.
     
    ladycatlover, Jan, Ellie K and 5 others like this.
  8. Snow Leopard

    Snow Leopard Hibernating

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    It's not at all evidence-based...
     
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  9. Sean

    Sean Senior Member

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    What utter crap.
     
    Last edited: Oct 8, 2017
    ladycatlover, Sea, Jan and 4 others like this.
  10. Jan

    Jan Senior Member

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    Yes, I was looking for the 'Bullshit' button.
     
    MeSci, ladycatlover, Sean and 2 others like this.
  11. searcher

    searcher

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    CBT and GET have now been removed as treatments from the google health card in the US. There are still other sections that need to be changed (particularly the specialists section), but the card now says "There is no cure or approved treatment for this condition. However, some symptoms can be treated or managed to provide relief" instead of recommending CBT and GET. CBT and GET were also removed from the support section.

    I noticed that all of the changes weren't made to the Australia card so hopefully that will be updated later today.
     
    Last edited: Oct 12, 2017
    Jan, sarah darwins, ahimsa and 11 others like this.

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