Blog: The struggle continues….

Indigophoton

Indigophoton

Senior Member (Voting Rights)
One person's account of his experiences and consequences of forced GET.
After the failure of my ill health retirement application in August i set about doing Graded Exercise Therapy, as this had been ‘recommended’ by the Medical Appeals Board…..or to be frank they had basically said that as it’s an available treatment, i had to do it to be considered for retirement! So, i did it.

I researched online about how to go about it safely (if that’s possible in our state), but found a fairly good guide and started following it. I wasn’t to see the ME Clinic at my local hospital until December, so i wanted to be getting on rather than wasting time. I was cautious, i knew the risks and i knew that it was highly unlikely to work; a fact told to me by several medical specialists and countless patient reports etc, but i had no choice. It was either that or a very strong risk of losing my job if i didn’t at least try.
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https://spiritofbelerion.wordpress.com/2018/04/03/the-struggle-continues/amp
 
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".
 
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adambeyoncelowe said:
Can't you attend sessions with the physio, or whoever, and then just pretend to do the exercise in between? How will they know?
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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.
 
Invisible Woman said:
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.
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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.
 
Inara said:
But this can be made up.
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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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