May 12, 2017 Is International ME/CFS and FM Awareness Day
International ME/CFS and FM Awareness Day is May 12th, 2017. Jody Smith shares some information about upcoming events and ways you can be heard ...
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#MEAction: Keep PACE out of WebMD and HealthDay

Discussion in 'General ME/CFS News' started by Sasha, Apr 16, 2016.

  1. Sasha

    Sasha Fine, thank you

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    UK
    Last edited: Apr 16, 2016
  2. Bob

    Bob

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    England (south coast)
     
  3. BurnA

    BurnA Senior Member

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    This is a great campaign and I have submitted responses to both websites..
    I think it should be extended to all websites which refer to GET / CBT as treatment for ME/CFS.

    Look at Mayo Clinic
     
  4. Comet

    Comet I'm Not Imaginary

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    Done and done. The 'Submit' button on the WebMd site was a little funky, but I kept clicking all around it and it finally submitted.
     
    Sasha likes this.
  5. BurnA

    BurnA Senior Member

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    yeah i had the same problem in Chrome browser so I opened explorer and it worked.
     
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  6. SB_1108

    SB_1108 Senior Member

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    This also needs to be done for Mayo Clinic

    Mayo Clinic's ME/CFS treatment of GET and CBT appears as the primary search result when you google the disease.
     
  7. LiveAgain

    LiveAgain Senior Member

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    Done, thank you for making it so easy with the links and sample letters. So agree about Mayo Clinic. They are the worst! and many doctors rely on them for information. I guess we'd need a different letter for them though and I'm too foggy to take it on but if anyone else can come up with a strategy, I would happily participate.
     
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  8. BurnA

    BurnA Senior Member

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    We should probably suggest it on ME action website
     
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  9. Justin30

    Justin30 Senior Member

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    I believe this is a great idea that should be proposed.

    I think our Major ME/CFS Organizations should request the NIH to make this contact as part of a movement to better understand what will actually help our disease.

    Just a thought.
     
    LiveAgain likes this.
  10. LiveAgain

    LiveAgain Senior Member

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    That might be a good idea because in thinking about this, I was wondering how can we request Mayo revise their site when CDC still has sections dedicated to exercise and CBT.
     
  11. sickntired771

    sickntired771

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    Done. On one hand I am happy to see an article on CFS on a mainsteam site but I don't like them using BS. Emails sent.
     
  12. Justin30

    Justin30 Senior Member

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    So you dont want us to send emails to the editors of these online media sources WebMD and HealthDay to try to have these articles on CBT and GET removed?
     
  13. sickntired771

    sickntired771

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    I sent the emails asking them to be removed. I am saying we just get so little publicity for this illness that it is a shame but this isn't the kind of publicity we want anyways.
     
    Justin30 likes this.
  14. Justin30

    Justin30 Senior Member

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    I couldn't agree with you more....i put my own twist to my email...

    In future I may just start putting my phone # on the email to see if they will call me directly to discuss the situation....and hopefully here first hand the suffering of someone with the disease.

    It may be more effective this way.
     
  15. LiveAgain

    LiveAgain Senior Member

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    Oh, there we go.. they already have plans to work on the CDC site. Yay. Then Mayo and others will have no excuse to keep out of date, harmful information up.

    "This new effort from the CDC is significant since the ME/CFS community has long been concerned that information on the CDC website is out of date, and in some cases, can be damaging to patients. The CDC site is a foundational source of information for many doctors who are not familiar with ME/CFS. By correcting information on the CDC site, we will help ensure that clinicians will receive accurate and appropriate information regarding both the seriousness of the disease and how it should be treated."

    http://solvecfs.org/zaher-serves-cdc-workgroup
     
  16. Justin30

    Justin30 Senior Member

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    This is amazing great news....amongst all the s**** that the community has experienced for years.....technology and innovation could bring treatments sooner.....I may have high hopes but at least they are there.....
     
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  17. BurnA

    BurnA Senior Member

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    We should capture it before it's gone to remind people what it looked like in 2016.
     
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