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

The report has an English summary from pages 9 - 12.

ME-pasienters erfaring med rehabiliteringsopphold (ME patients' experiences with rehabilitation stays)

Some of the main findings:

• Slightly more than half were satisfied with the rehabilitation stay
• About three out of four disagree or strongly disagree that their condition improved
• In the open-ended responses, many reported negative outcome due to strong focus on physical exercise and too high level of activity.
• One out of five respondents did not complete their stay
• The study confirms that the centres apply different approaches to ME, which can be summarised as: a bispsyphosocial model with emphasis on CBT and GET, or a biomedical model with an emphasis on activity adjustment to avoid aggravation of symptoms.
• 80% of the ME patients who undertook a rehabilitation stay stated that their condition did not improve.

 

This is an impressive report, congrats to the Norwegian ME Association.

• 2316 persons responded to the survey. This is a very high figure, and means that between 12 and 23% of all ME patients in Norway participated.

This was a remarkable finding:

• "Several centres with a biopsychosocial approach discourage ME patients from contacting the Norwegian ME Association."

Am I right that the report also suggests that patients preferred the biomedical approach?

• The answers indicate a strong positive link between the centres' information about PEM and: (1) how satisfied patients are with the demanded level of activity, and (2) whether patients are better or worse-off one month after the stay. Relatively more patients who have been at rehabilitation centres providing good information about PEM report that they are have experienced an improvement in their condition one month after their stay than just after their stay, and these patients agree more strongly that the activity level was adapted to their illness.

 

2 316 in total answered the survey. That's between 12 - 23% of all ME patients in Norway!

ETA: Oh, sorry - hadn't seen your comment, @Michiel Tack
Welcome to the forum!

 

Thanks. I see you are Norwegian. Can you tell us more about the report, things that aren't in the English summary?

 

Sure. Are there any areas you'd be particularly interested in?

 

Did the report measure patients' opinion on CBT?

Is it correct to state that patients favoured the biomedical centres? The English summary only notes a preference for good information on PEM.

Does it provide more information on the remarkable statement: "Several centres with a biopsychosocial approach discourage ME patients from contacting the Norwegian ME Association."

Thanks in advance!

 

I'll have a closer read during the next few days and come back to you, @Michiel Tack (too foggy headed now)

 

So finally I was able to have a closer look. The text underneath in italic is my hasty translation from the report, and some could probably be worded better, but it'll have to do..

1. No, the survey didn't ask for the respondents opinion on CBT

2. Yes. I think it is correct to state that patients favours the biomedical centres:

Most travel to a rehabilitation center in their own region, but Vikersund Kurbad, Skogli and Sørlandet rehabiliteringssenter get ME patients from outside their regions who have applied to have their rehabilitation stay with them. Probably because they’ve been recommended by other patients.

...

The different centres have different approaches to ME. Some encourage GET and are focused on CBT. Others teach about PEM and pacing. There are far more among those who learned about PEM during their stay that are pleased with the rehabilitation stay. This indicates that those who teach about PEM also adjust the stay so that the patients can avoid deterioration. It is unsettling that 52% of those who didn’t receive information about PEM strongly disagree to feeling better one month after their stay.

...

The benefits from a stay differs a lot between the rehabilitation centres and the staff’s approach to ME. Som centres focus on GET and CBT, to not be “afraid” of symptoms, whilst others focus on pacing in order to avoid PEM. The latter centres have far better results in patient contentment. Centres that provide good information about PEM have twice as high patient contentment as the centres who provide insufficient information about PEM. (62% vs 31%)

3. To be discouraged by some rehabilitation centres from contacting the Norwegian ME Association were mentioned by several respondents in the part of the survey where one could write additional information. But it was not a question in the survey, so this wasn't elaborated further in the report.

 

Thanks for that @Kalliope.

It's hard to read much into the finding that 'centres that provide good information about PEM have twice as high patient contentment as the centres who provide insufficient information about PEM. (62% vs 31%)'. When has patients classing something about their treatment as 'inadequate' being associated with higher patient contentment?

Maybe they didn't really ask the right questions for letting us assess how different approaches were valued?

 

Perhaps they're just presenting it a bit more complicated than necessary in the report. In the questionnaire it is simply asked whether or not the patients were taught about PEM during their stay.

 

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.

 

Thanks Kalliope,

I suppose this means that patients preferred the biomedical centres (unless some BPS-centres also provided adequate information about PEM?). It's a bit weird that a large survey like this, involving multiple centres with different ideologies, did not assess the differences between them in a more direct way.

 

I imagine it's a bit like going to the restaurant and having a meal that isn't bad but also not good. The waiter might ask out politeness if the meal was good, and you probably respond out of politeness that it was. The patients can be "satisfied" because they felt that effort was made to help them, even if it didn't actually produce any results.

 

I'm not sure if this is the right place but I'm getting sick of the assertion that PwME are afraid of "symptoms". I am not afraid of PEM, I respect it (in that I know my choices have a price), and endure it, I am not "afraid" of it.

 

What was asked about the rehabilitation stay itself was to grade how much you'd agree with these questions from strongly agree, agree, neither agree nor disagree, disagree, strongly disagree, not relevant

1. I am satisfied with the stay at the rehabilitation centre
2. I've learned a lot which has been useful afterwards
3. I felt better right after the stay than before the stay
4. I felt better one month after the stay than before the stay
5. The level of activities were adjusted to my situation
6. The staff at the rehabilitation centre had good knowledge about ME
7. The staff at the rehabilitation centre were understanding when I told them about my symptoms
8. The social part of the stay was useful

I addition there were questions about the respondents (patient or carer, sick for how long, which degree of ME, who diagnosed etc)
Questions about the stay as in where, how long
Whether PEM was explained during the stay
A section where the responders could add additional information about their rehabilitation stay, if they wanted to
If the rehabilitation centre provided help regarding assistance from the municipality
If the rehabilitation centre provided help regarding school, welfare etc

 

Yes, I think I could be quite happy with a stay anywhere if I just got good food, a quiet room, wi-fi, nice surroundings and people were friendly.

 

Out of interest, which questions did you miss in this survey, and which questions would you suggest future surveys to contain? It doesn't have to be only about rehabilitation centres..

 

I don't know much about the situation in Norway, but if there is quite a distinct divide between two different approaches to rehabilitation I think that a question to help determine which approach a respondent was assessing would be useful. eg: Do you think that the rehabilitation provided was best described as being based on 'pacing' or 'graded exercise'... phrasing that question properly would require more knowledge of the approaches used than I have!

 

Yes, I see your point. But at the same time I wonder if that requires some beforehand knowledge from the patients? Many with a biopsychosocio-approach to ME can be quite good at fogging what they are up to. However, according to the "free text" from some of the responders, others were quite clear about ME being psychosomatic.

 

I would have let them rate the different centres and each treatment modality (CBT, GET, Pacing, length of stay or whatever) separately on a score from 'very helpful' to made 'my condition seriously worse' . Then you could compare the acceptance of each aspect of treatment.