Norwegian patient survey: Experiences of therapeutic approaches (2012), update


Senior Member
Norges ME-forening (Norway's ME Association) has published an updated excerpt from their patient survey from 2012.

It's about patients' experiences of different therapeutic approaches.

1096 respondents. The survey was open to anyone, and people were invited through ME-foreningen's website and on Facebook. About half of the respondents were members of ME-foreningen.

Does not include Rituximab, because very few people had had such treatment back in 2012.

More info in Norwegian here:

Medisinsk oppfølgning av professor K. De Meirleir = Medical treatment by prof K. De Meirleir
Kognitiv adferdsterapi = CBT
Gradert treningsterapi = GET
Kondisjonstrening/progressiv fysioterapi = Fitness training/progressive physiotherapy
Aktivitetsavpassning = Pacing

Stor forbedring = Great improvement
Forbedring = Improvement
Ingen endring = No change
Forverring = Worsening
Stor forverring = Great worsening


Senior Member
South of France
Thanks Mango,
I'm really surprise by the only about 22% worsened by C.B.T ...
I know that it exist ( a large part) of PwMEers who are misdiagnosed, and i know that this questionnary was submited on line ( = not a study controled by doctors), but, 22% only ( 25% severes ???) pretty surprising...
I'm really surprise by the only about 22% worsened by C.B.T ...
I guess it depends what is meant by CBT. If they mean CBT that helps you come to terms and live with the condition that can be quite beneficial. On the other hand if it is based on false or incorrect illness beliefs and aims to convince you that you're not that ill and should ignore symptoms, this will be very damaging for many patients with ME.

The trouble is there are effectively 2 different therapies with the same name. One which has a very low risk of any harm and one with a very high risk of harm for patients with ME. We really need to know what treatment each survey participant experienced under the name CBT I think.