Experiences of daily activity in CFS/ME and their implications for rehabilitation programmes.

[MeSci]

If there was more acceptance of ME as a biological condition where GET/CBT/doing more wasn't the answer, and more supports for patients in various forms (with money, paid carers/assistants, general attitudes, etc.), people would probably find it easier not to overdo it.

Absolutely spot-on. And we would therefore have less of a risk of making ourselves more ill and becoming more dependent on external support and therefore more unhappy with our inabilities. And having even less chance of recovery.

Effective treatment would be rather nice too...

 

[Dolphin]

I find the underlined sentence odd. The authors seem to suggest more rest could be useful but then say with this that rest won't help. I think this may be influenced by the pro-CBT/GET environment in the UK.

My guess is that the Fukuda definition, in an apparent effort to exclude overtaining or anything else that could be entirely cured with rest and support (the "clarification of ambiguities" paper made clear they were not discussing PEM), says, "not substantially relieved by rest" and I think this is confusing to people who don't understand the illness.

What they need to grasp really isn't all that difficult; just isn't well explained in what they've been reading: a vacation or other rest can't fix a long-term patient, but rest does reduce certain symptoms day to day, and enough rest may make a modest difference over months.

Except that these authors are quite experienced and knowledgeable.