what safety measures are in place for pwME recieving GET?

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kirstenthomson2000
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Joined: Wed Aug 14, 2013 10:44 pm
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by kirstenthomson2000 on Mon Aug 19, 2013 6:18 pm

what safety measures are in place for pwME recieving GET?

So, from what i've read here over the last few days on GET there are many many people on this forum saying how much it has harmed them, (and statistics from major surveys support that most people with ME find GET makes them worse, and significantly worse) and then some of the experts are saying that the reason they get worser is because they must not have had GET delivered properly (not my opinion, incidentally, but let's go with your underlying assumption being given here). Here's my question, what safety measures has the nhs put in place to protect ME patients from receiving 'bad' or 'wrongly administered' GET? Especially seeing as it 'wrongly administered' can result in serious harm to the patient. If i was a cancer patient and my medical health team 'wrongly administered' whatever form of treatment that then went on to make me significantly worse, i would have serious cause to sue. And it is likely that those health care practitioners would be reprimanded in what ever way was appropriate. Do you see what i'm saying? So, what safety measures are in place to protect ME patients? And what action is the nhs taking against those who 'wrongly' administer GET causing damage to their patients?

I am particularly looking for an answer from those specialists who have being consistently supporting the use of GET and holding the position that GET only makes you worse if it is 'wrongly' administered.

Thanks for your time, Kirsten

Genevieve
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Joined: Thu Aug 15, 2013 5:28 pm
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by Genevieve on Mon Aug 19, 2013 7:02 pm

Re: what safety measures are in place for pwME recieving GET

Very good point. I seem to remember some years ago that MEA found out that legally there is no difference between prescribing exercise or a drug.

However, if an ME patient said they were worse with GET it is quite likely the doctor or physio who prescribed it would merely tell them, the GMC etc it was the patients wrong illness beliefs that were causing them to perceive they were worse and the exercise had done no physical harm, proving it would be a problem I suspect.

Bluebottle
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Joined: Fri Aug 02, 2013 2:36 pm
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by Bluebottle on Tue Aug 20, 2013 3:16 pm

Re: what safety measures are in place for pwME recieving GET

As one of the many permanently harmed by GET I would like the answer to this too please.

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