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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Debate - Norwegian Guidelines

Discussion in 'General ME/CFS News' started by Ren, Aug 11, 2014.

  1. Ren

    Ren .

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    Dolphin just posted a thread on a 2011 Norwegain study whose authors include VB Wyller.
    http://forums.phoenixrising.me/inde...efs-and-coping-strategies-hareide-2011.31950/

    I happened upon a recent article which features Wyller and which seems to have been published with a companion piece by Live Landmark whose comments seem, well, boldly ignorant and totalitarian.

    Both articles are from the Norwegian Broadcasting Corporation (NRK), late June 2014. It seems that Norway's patient-friendly rest/pacing guidelines are being attacked as dangerous and harmful. There may be a number of debate articles such as these. Does anyone know how this has developed - what the outcome thus far has been?



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    Article One*: 26 June 2014:

    Vegard Bruun Wyller = Professor and Chief Physician at Oslo (Norway) University Hospital Rikshospitalet.

    Wyller believes that protective guidelines for the severest ME/CFS patients should be removed from the national guidelines because they are wrong and dangerous, in that it's not healthy for ME/CFS patients to lie isolated in dark, quiet (sensory-protected) rooms for months and years.

    In response to criticism, Wyller said basically that patients shouldn't challenge the experts' knowledge.

    The article doesn't say what Wyller believes to be the best care for those who are most severly affected.


    *Original and google translate:

    http://www.nrk.no/livsstil/ber-helsedirektoratet-fjerne-me-rad-1.11795062

    https://translate.google.com/translate?sl=no&tl=en&js=y&prev=_t&hl=sv&ie=UTF-8&u=http://www.nrk.no/livsstil/ber-helsedirektoratet-fjerne-me-rad-1.11795062&edit-text=&act=url



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    Article two*: 26 June 2014

    Live Landmark = mental trainer (coach?), Lightning process instructor, former ME/CFS patient

    In this article, Landmark denounces ME/CFS rest/pacing guidelines as harmful and potentially illness-causing, and as unproven and lacking evidence.

    Landmark states that she was helped by CBT and that to tell patients that there is no cure for ME/CFS is harmful and destructive. She seems angry as well that people believe ME/CFS to be a neurological disease. Landmark states that it's wrong for patients to try to dictate how experts use/value evidence.

    Landmark states that rest/pacing guidelines are a serious health hazard and that the Knowledge Center 2011 determined that CBT is better than rest/pacing and that CBT should be used for (be forced upon?) those who are severly ill.

    Landmark states that virus theories and pharmacological research into ME/CFS treatement has failed. Landmark states that CBT is suported by solid research, and it (with other cognitive whathaveyou) can make people 100% healthy, just as it did her and countless others.


    *Original and google translate:

    http://nrk.no/ytring/me-rad-kan-skade-pasientene-1.11783821

    https://translate.google.com/translate?hl=sv&sl=no&tl=en&u=http://nrk.no/ytring/me-rad-kan-skade-pasientene-1.11783821
     
    Last edited: Aug 11, 2014
  2. Wildcat

    Wildcat

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    .
    Live Landmark (Author)
    .
    'Invitation to dialogue about chronic fatigue syndrome (ME)'
    Date: 12th October 2012

    'It happens intriguing issues surrounding chronic fatigue syndrome (CFS) a day. On the sidelines sitting several different communities who want to help a vulnerable patient group. ME activists, however, has sharpened sabers to the detriment of both themselves and other patients.'

    https://translate.googleusercontent...rom-me&usg=ALkJrhhu4MJ5_GA7f0p8lhY3nLTFfsaokQ

    .
     
    Ren likes this.
  3. A.B.

    A.B. Senior Member

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    These arguments speak volumes. This LP coach has no idea what she's talking about, but is so full of herself that she doesn't even realize it.

    She seems to believe that ME/CFS is a heterogeneous mental disorder that can be diagnosed accurately (or perhaps just a lack of motivation?). Otherwise it's pretty hard to explain why she thinks every ME/CFS patient should be doing CBT.

    I hope Norwegian ME/CFS patients and advocates can fend off this horrific quackery.
     
    Last edited: Aug 12, 2014
    LaPerla, Valentijn and Wildcat like this.
  4. chipmunk1

    chipmunk1 Senior Member

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    and if you are LP coach you are an expert :(((

    I hope the recovery wasn't another more luck than brain case where someone was moderatly ill for a few months and got better after a few questionable placebo therapies and believes i got better that's why i know more than the ones that are still sick.

    well even placebo therapies can make a minority completely well so that doesn't tell us much.

    The studies show that the majority of patients DON'T recover with CBT as the therapies are not very effective(if you actually just take their data at face value)

    this makes it sound like most ME patients could recover with psychotherapies if the activists weren't keeping them away from them.



    This makes it sound like patients can't make their own decisions and need to be helped for their own good.

    Conclusion:

    Not everyone is nutty enough to believe in pseudoreligions like LP, so please stop this manipulative psychobabble crap which wants to suck people into a silly belief system.
     
    Last edited: Aug 12, 2014
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  5. Cheshire

    Cheshire Senior Member

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    Thanks for letting us know. I thought Norway was if not a kind of haven at least a better place to live in for ME sufferers. But it's good to remind us that even in those more advanced countries, the battle is not yet won.
     
    Wildcat likes this.

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