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

LightHurtsME said:
This is what I never understand from these kinds of surveys: how can more than a half be "satisfied" with the clinic/programme if three quarters did not get better. And other discrepancies. If I was getting treatment and i would not get better, I would not be "satisfied" no matter how nice the therapists, meals, accommodation, neatness of printed materials etc.
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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.
 
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Dolphin said:
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.
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Which reinforces how subjective ratings versus objective measures can have so much disparity.
 
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Barry said:
Which reinforces how subjective ratings versus objective measures can have so much disparity.
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Which makes me ponder if the notion of a subjective measure is something of an oxymoron?
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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.
 
LightHurtsME said:
This is what I never understand from these kinds of surveys: how can more than a half be "satisfied" with the clinic/programme if three quarters did not get better. And other discrepancies. If I was getting treatment and i would not get better, I would not be "satisfied" no matter how nice the therapists, meals, accommodation, neatness of printed materials etc.
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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.
 
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Dolphin said:
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.
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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.
 
"The doctor who had the course was very unsuitable. He gave false information and did not want to call what we had for ME. He was absolutely convinced that we could get healthy through exercise and that the methods he used would make us healthy. Much was about cognitive therapy. The timetables were packed."
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"The doctor who was there wrote to NAV [Norwegian Labour and Welfare Administration] and my regular GP that I had residual work capacity and that I needed cognitive therapy since it was probably my thoughts that made me ill. Then got into trouble with NAV and still have it. Have had to go through a lot of testing because of that."
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"Got an epicrisis. It was full of factual errors and views from an employment consultant who did not have a health education. Led to problems with NAV [Norwegian Labour and Welfare Administration], since (despite the fact that other specialists have considered me to be seriously ill and unable to work) the employment consultant considered that AiR [a rehabilitation centre] was sure I would return to work. Misleading and they did not listen that I did not recognize myself in the epicrisis. Became a huge strain."
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In the open-ended responses, many reported that they had a negative outcome due to a strong focus on physical exercise and too high level of activity. The respondents experienced worsening of symptoms during the stay, and the deterioration in their condition lasted for months and even years. Some respondents reported that their condition became permanently worse. A respondent needed acute hospitalization during the stay due to overexertion. Many of the openended statements are highly disturbing reading.
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Focus on management: The purpose of a rehabilitation stay is not that the ME patients will get healthy, but that with good management of the illness some patients will experience improvement over time. However, only one in ten say that their condition improved, while many feel that they experienced a deterioration in health due to overexertion during the stay. Several respondents write that they became seriously ill after their stay, which is alarming. This is not surprising, however, as other user surveys show that many ME patients experience a worsening of their illness following some of the treatments offered by the health service in Norway (and elsewhere).
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