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Jessica Bavinton wrote:Sometimes people are concerned by what they have read online, or by someone else affected by their condition: people perhaps saying ‘exercise made me worse’, for example. Then, on the other hand you have the NHS promoting GET, and GET being supported by NICE guidelines and research. Very confusing. So what’s going on?
Dr Alastair Miller wrote:The principle of GET is based on the fact that the people who make the best recovery from CFS/ME steer a compromise between over and under activity. People who fare badly either tend to drive themselves too hard and "crash" as is well described by several contributors or they go to the other extreme and take to their beds to await recovery. Neither of these approaches is helpful and both delay recovery. This was the common experience of most of us involved with ME/CFS patients over the years. The people who do best steer that middle course and push themselves a bit but not too much. This is the principle behind GET and this approach which many of us had used for years (even before NICE and PACE). PACE gave us reassurance that we are doing the right thing.
I agree that neither CBT nor GET are perfect and neither produce a cure in 100% which is clearly our goal.
The fact remains that however imperfect they are, there is NO alternative therapy that is known or shown to be beneficial so they are all we have. Yes we should continue to support research to define the biomedical mechanism underlying ME/CFS but at present the NHS centres are providing the only therapy that is evidence based and known to be of benefit. It may not benefit everyone but currently we have nothing else and current data suggests that people are continuing to improve and benefit from these approaches.
The principle of GET is based on the fact that the people who make the best recovery from CFS/ME steer a compromise between over and under activity.
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