The Norwegian ME Association publishes survey on rehabilitation services - 2 300 respondents

I remember a group for CFS patients in Northern Ireland run by an occupational therapist got a satisfaction rating of 94%. I can’t remember the details but the impression I got was it didn’t improve people’s health or not much, people just enjoyed the opportunity to chat and meet others with the illness.

 

Which reinforces how subjective ratings versus objective measures can have so much disparity.

 

Which makes me ponder if the notion of a subjective measure is something of an oxymoron?

 

I wouldn't throw out subjective measures completely.
In a double-blind trial, they can have their value if the blinding has worked.
For example, testing a painkiller. Not everything can be easily measured objectively.

 

In Norway, these kind of programs in a rehabilitation centre is pretty well known not to be actual treatment, but more of a course in managing the illness and an oportunity to meet other patients.

In many ways sort of like a retreat, a chance to get away from your everyday life, getting all meals served, just focusing on yourself for 3-4 weeks. In this way, it can still be a nice and giving stay, even if you don't get better healthwise

Edit: Some centres also help with things like applaying for benefits, or help with establishing other type of home services etc.

 

I was really wondering about the use of the word 'measure' in the context of variables that are so woolly. Not disputing that such subjective data cannot be validly used, just not sure if the notion of measuring it is quite right - to me measuring something involves a degree of accuracy and repeatability. For me "subjective readings" may work better.

 

I wonder if this survey would be any help regarding the NICE ME guideline development? @Jonathan Edwards?