Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Norwegian patient survey: Experiences of therapeutic approaches (2012), update

Discussion in 'General ME/CFS News' started by mango, Feb 21, 2016.

  1. mango

    mango 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
    Woolie, Chezboo, Cheshire and 17 others like this.
  2. funkyqueen

    funkyqueen 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...
  3. Invisible Woman

    Invisible Woman Senior Member

    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.
    Woolie, mango and funkyqueen like this.

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