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Blog: The struggle continues….

Discussion in 'General ME/CFS News' started by Indigophoton, Apr 28, 2018.

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  1. Indigophoton

    Indigophoton Senior Member (Voting Rights)

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    One person's account of his experiences and consequences of forced GET.
    https://spiritofbelerion.wordpress.com/2018/04/03/the-struggle-continues/amp
     
    Jan, adambeyoncelowe, Stix and 18 others like this.
  2. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Just unbelievable and infuriating! Criminal!
     
    Jan, MarcNotMark, alktipping and 9 others like this.
  3. Webdog

    Webdog Senior Member (Voting Rights)

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    Want to stop GET from being prescribed for ME/CFS? Don't bother writing to the NIH or CDC. They are both fond of saying "we are not enforcement agencies." Talking to federal agencies is like talking to a brick wall.

    The NIH will tell you to file a complaint with the American Medical Association (AMA). However, the NIH is wrong. The AMA will tell you it's actually a state issue and to file a complaint with your state medical board.

    The CDC will tell you to file a complaint with your state department of health. However, the CDC is wrong. Your state department of health will tell you it's actually a "scope of practice complaint" to file with your state medical board.

    So, in my experience of phone calls/emails/tweets, if you want to try to stop GET from being prescribed for ME/CFS, then file a "scope of practice" complaint with your state medical board. That is, a complaint that GET is "outside the scope of practice" for any physician to prescribe.

    A list of state medical boards is here: http://www.fsmb.org/contact-a-state-medical-board/

    I have yet to be successful on this, but it's not over yet.

    PS: If you belong to a managed healthcare service, you may have additional patient state rights. See if your state has a "Department of Managed Healthcare" or such and learn your patient rights.

    PPS: The fact that GET is still prescribed in 2018 absolutely infuriates me. But I hear over and over that "we realize PACE results are unreliable, but some CFS patients tell us they find GET very helpful".
     
    Last edited: Apr 28, 2018
    AndyPandy, merylg, Jan and 14 others like this.
  4. chrisb

    chrisb Senior Member (Voting Rights)

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    It all sounds very familiar to me. The only points to make are that 37 years have passed and the b....... still have not learned.
     
  5. Webdog

    Webdog Senior Member (Voting Rights)

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  6. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Can't you attend sessions with the physio, or whoever, and then just pretend to do the exercise in between? How will they know?
     
    MEMarge, Inara and Invisible Woman like this.
  7. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I guess any physio worth their salt would ask questions about how you got on and what problems you had. Perhaps looking for comments about issues that you would only know about if you were doing the exercise.

    The issue with pretending to go along is that they will carry on pushing these treatments and therapies. Though, I can understand people might need to put their own survival and interests above the wider pwME community at times.

    Also, in the early stages people are gullible. They usually have no idea of the background politics and genuinely have faith that these health professionals know best and have their best interests at heart. It simply wouldn't occur to them that the physio isn't on their side, because they don't even know there are sides.
     
    chrisb, MEMarge and Inara like this.
  8. Inara

    Inara Senior Member (Voting Rights)

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    But this can be made up.

    Not such a bad idea though, @adambeyoncelowe; for people who have no other choice (and who are informed), pretending might be an option (-> self-defense).

    Of course it's not a long-term solution.
     
  9. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I guess it could. I'm basing this on my experience with a physio in the early years (not of the GET variety). She had me doing various things including passive stretches and advocated using blocks, small cushions & rolled up towels to use as supports while resting. She wouldn't ask me if something hurt - it was exactly where, exactly when etc. -what eased it.

    But then, I guess she was interested in the truth and actually helping me, unlike many others.
     

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