Mary
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I would swear I had seen this news posted elsewhere but can't find it. In any event, the article is also noteworthy because of a quote from and about Prof. Paul Garner, (who wrote the article linked in this thread):
I forgot to include the link - here it is: https://www.bmj.com/content/370/bmj.m2912
Apparently we have somebody on the inside of the Cochrane Review on our side! I e-mailed Prof. Garner after seeing a video interview with him - he's being very vocal. I didn't realize he was so aware of some of the issues (lack of medical care, credibility etc.) that we deal with, and he said that NICE was talking to Charles Shepherd about their CBT and GET recommendations for ME/CFS. Well, I'm not holding my breath on that, but I do think this is a start --
I forgot to include the link - here it is: https://www.bmj.com/content/370/bmj.m2912
Among this number is Paul Garner, professor of infectious disease at the Liverpool School of Tropical Medicine and director of the Centre for Evidence Synthesis in Global Health. Early in his recovery Garner realised that he was experiencing post-exertional malaise, as every time he did any exercise that increased his heart rate, such as cycling or yoga, he found himself back in bed.89
Garner, who is coordinating editor of the Cochrane Infectious Diseases Group and one of the founders of the Cochrane Collaboration, said that he was “furious” when he read the 2007 NICE advice and the conclusions of the Cochrane review, which also support exercise therapy and mention uncertainty about the side effects of adaptive pacing.10
“Obviously, I know that if I increase my exercise I will be thrown back to bed,” he said. “What I struggle with as a highly driven medic is stopping myself overdoing it. That’s what I need help with—I don’t need help to increase my exercise.”
Garner researched and started using pacing, finding the approach helpful. However, he emphasised that the technique was complex and that there was very little information in the medical literature. “GPs need some really practical guidance on how they rehabilitate these patients. People are having to search out techniques or generate them themselves,” he said.
Apparently we have somebody on the inside of the Cochrane Review on our side! I e-mailed Prof. Garner after seeing a video interview with him - he's being very vocal. I didn't realize he was so aware of some of the issues (lack of medical care, credibility etc.) that we deal with, and he said that NICE was talking to Charles Shepherd about their CBT and GET recommendations for ME/CFS. Well, I'm not holding my breath on that, but I do think this is a start --
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