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Article: ME patients misunderstand, Andresen, 2018

Discussion in 'PsychoSocial ME/CFS Research' started by Indigophoton, Apr 9, 2018.

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  1. Indigophoton

    Indigophoton Senior Member (Voting Rights)

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    A short article in Psychology Magazine, the Journal of the Norwegian Psychology Association, on the 'psychology of PEM'. It's the argument that psychosocial factors are the reason patients remain sick.

    Via google translate,
    Norwegian site here, English translation here.
     
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  2. Kalliope

    Kalliope Senior Member (Voting Rights)

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    This is written by a psychologist called Nina Andresen. She had ME herself and has now recovered (I think with diets and alternative remedies).
    Once in a while she writes articles claiming that the ME Association and ME-patients aren't willing to be open enough for undocumented treatments thus standing in the way of hope for recovery. ME is possible to recover from according to Andresen, but it requires a lot of hard work.

    This is her second contribution in an ongoing ME-debate at the Journal of the Norwegian Psychology Association.

    The first contribution from her got an excellent response from Eirik Randsborg from the Norwegian ME Association:

    Feil virkelighetsforståelse
    Google translation: Incorrect perception of reality

    Hope must be realistic, otherwise it's a false hope. The ME association wishes to give its members as good and correct information as possible. The ME association also wants to create hope - hope that ME patients will be properly treated by healthcare, NAV and other auxiliaries. Hope that coping will make it possible to live a good life with the disease, and hope that the research will lead to relief treatment and perhaps - in the longer term - a cure.

    The ME Association fully agrees that there is a need for a good support system around the ME sick, but it must be support that has proper knowledge about the disease and understanding the challenges the patients have. Health care providers that give false hope or pushing patients into more activity than they tolerate is not beneficial but harmful.
     
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  3. Esther12

    Esther12 Senior Member (Voting Rights)

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  4. Kalliope

    Kalliope Senior Member (Voting Rights)

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    She also initiated a Facebookgroup for ME-patients and alternative therapies. This while she was still an employee at the ME/CFS-centre in Oslo. She does not work there anymore.

    She seems very angry with the patient organisation and patients that are sceptical of undocumented treatments and she has a rather aggressive tone.
     
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  5. Lidia

    Lidia Established Member (Voting Rights)

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    She does not know what PEM is. It is the prolonged exacerbation of symptoms in the patient’s symptom pattern, not “prolonged and painful fatigue”.
     
  6. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    What a load of non-factual nonsense.

    The claims about perfectionism/ambition etc are contradicted by the equivocal evidence which has tried to identify such factors. Likewise, a majority of patients do not suffer with ongoing stress/anxiety/depression so the lack of sensitivity of this association suggests it is not a prolonging factor for a majority of patients.

    Likewise the idea that boom-bust is a prolonging factor is not found in studies utilising actigraphy.

    The author is confusing boom-bust with PEM, likely because the author has never bothered to actually listen to patients and try to understand.
     
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  7. Woolie

    Woolie Committee member

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    I don't know about you, but I'm as sloppy as hell and a bit of a loser. :rolleyes:
     
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  8. JohnM

    JohnM Established Member (Voting Rights)

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    Dear Woolie,

    Must be down to you being a 'yes-person' and/or your altruistic tendencies then .. tell me it ain't so, (not that I'd believe you anyways muttering under my breath.) ;)

    Yours sincerely, Nina

    Wishing everyone improved health and every happiness. John :)
     
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  9. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    Mee too!!!
     
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  10. Webdog

    Webdog Senior Member (Voting Rights)

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    I strive for mediocrity.
     
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  11. Solstice

    Solstice Senior Member (Voting Rights)

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    I'm actually at my happiest if I've got a challenge in front of me, being sick is making it harder to commit to anything though. Instead of stress it get's me excited though.
     
  12. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Stress means very different things to different people in my view.

    Some get stressed when they have too much to do and that's when I used to thrive. Too little stress & I get bored. I find boredom incredibly stressful.

    I was on a retreat a few years ago. One afternoon there was a art session. I was bored to tears and had a tension headache by the end, by which I mean when I left under the pretext of needing the loo. Everyone else loved, said it really relaxed them o_O
     
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