A friend referred me to the UK PACE trials study (thank you Jody!) and it has me doing a lot of thinking. The CFS/ME/CFIDS community has responded with anger and annoyance at the UK study because it suggests that CFS is not an Organic illness and that all CFS sufferers need is exercise and proper thinking. It reminds me of the time back in the days when I thought that Medicine could help me and I was in the midst of trying to explain 'post-exertional malaise' to a doctor (I didn’t know that name back then) and his response was, “You just need to get some exercise.”
Exercise has the potential to almost always result in a crash. A crash perpetually threatens to be around the next corner and when it occurs you are sent back to square one. It is as if the authors of those studies don’t really understand CFS. It makes one wonder if they worked with patients who actually have CFS. I would like to closely examine the study and see what the participants are like. As far as I have read about it, the study seems to be flawed.
It is a big mess. CFS may very well have an organic basis but there is a lack of funding to do the research. Meanwhile the many that are afflicted need money for basic survival and decent quality of life and governments such as that in the UK are resistant to giving benefits to people with an illness that they see as lacking legitimacy. When the new health care reform is implemented in the US, we are going to have the same struggle here.
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