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News from Scandinavia

Discussion in 'General ME/CFS News' started by Kalliope, Nov 2, 2017.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Article in the Norwegian broadcasting cooperation NRK.

    I's about ME sufferer Elisabeth who had been ill for 12 years when she applied for disability benefits. It was rejected and she was told to try CBT, GET and a class in learning and mastery in health. She deteriorated so much from the graded exercise that her physiotherapist chose to stop the treatment. The Labour and Welfare Administration however says she stopped too soon, and might have gotten better if she carried through with the treatment.

    Specialist Dag Gundersen Storla has worked with ME patients for 15 years. He confirms that ME patients deteriorate if they do too much. He says there is one study that shows GET/CBT may better the quality of life for some ME patients, but that it doesn't improve the energy level or the ability to work. It may even cause longer time to get well.

    A spokesperson from the Labour and Welfare administration says that each case must be viewed individually, and that it's therefore wrong to claim CBT is a systematic approach. He also doesn't know of any medical consensus about CBT making ME patients deteriorate.

    A spokesperson from the Norwegian Directorate of Health on the other hand is clear that these treatments may have a negative effect. They treatment should not be systematically applied to this patient group.

    NRK: ME-spesialist: Nav har misforstått forskningen
    google translation: ME-specialist: The Labour and Welfare Administration has misunderstood the research
     
    Last edited: Feb 19, 2020
    Anna H, Hutan, Joh and 18 others like this.
  2. chrisb

    chrisb Senior Member (Voting Rights)

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    It is strange, given the general societal concerns over issues of "health and safety", that there should be such an absence of concern and lack of safety protocols to protect those who seem harmed by treatments. Some might consider it negligent.

    EDIT Others might consider it deliberate.
     
  3. Aslaug

    Aslaug Senior Member (Voting Rights)

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    The way everyone is taught that exercise is good for all ailments might have something to do with this.
     
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  4. cassava7

    cassava7 Established Member (Voting Rights)

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    The stupidity of the contradiction between these 2 spokesperson really stands out. From the Google translation of the article, bolding mine:
    :banghead:
     
    Anna H, Joh, Invisible Woman and 5 others like this.
  5. Kalliope

    Kalliope Senior Member (Voting Rights)

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    A follow up article in the newspaper Dagsavisen Fremtiden.

    Apparently there is a directive in the Labour and Welfare Administration saying all ME patients must undergo rehabilitation, CBT and GET before disability benefits can be granted. An exception may be made with severe/very severe ME.

    Former general secretary in the Norwegian ME Association, Anette Gilje says:
    The Labour and Welfare Administration is threatening very ill people to push themselves far beyond their limits, just in order to make sure they really are as sick as they claim to be. This leads to fatal and long lasting results with deterioration for ME patients who already have a very low level of functioning.

    Dagsavisen Fremtiden: Strenge krav til ME-syke
    google translation: Strict requirements for ME patients
     
    Last edited: Feb 21, 2020
  6. Esther12

    Esther12 Senior Member (Voting Rights)

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    Even just via google translate, that seemed pretty damning, along with their failure to respond.

    Would we be able to get a translation of this image from the article?

    [​IMG]
     
    Caesar likes this.
  7. rvallee

    rvallee Senior Member (Voting Rights)

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    By far the thing I hate the most is how facts don't matter and justifications are made up. No excuse for it, this is plain malfeasance.

    From the PACE economics analysis, which somehow supports the IAPT model of rehabilitation by... uh... costing more for worse results:

    pace-conclusions-not-curative.jpg
     
    Anna H, Hutan, Michelle and 7 others like this.
  8. cassava7

    cassava7 Established Member (Voting Rights)

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    From Yandex Translate, slightly corrected:
     
  9. mango

    mango Senior Member (Voting Rights)

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  10. Kalliope

    Kalliope Senior Member (Voting Rights)

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    An annoying opinion piece about ME in a local newspaper. It's written by Gisle Roksund, previous leader of the Norwegian Association for General Practice and a popular and well respected voice.

    It doesn't seem that he's very up to date regarding ME (but when did that ever stop anyone to write opinion pieces on the subject?) and he seems highly influenced by the biopsychosocial approach.

    I believe he aimed to write a diplomatic text searching for common ground, but ends up accusing patients for not submitting to his preferred explanatory model.

    En ulykkelig konflikt
    google translation: An unfortunate conflict
     
  11. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    The same old dualism bullshit. Anyone who invokes this argument clearly does not listen to the actual opinion of patients and chooses to mischaracterise our views again and again, sigh.

    Wow, thinly veiled... How do we know the true prevalence when there are no population based epidemiological studies? The most likely explanation for the diagnosis differences is biases in medical practise - I suspect the prevalence is the same, but the medical system certainly is not.
     
    Last edited: Feb 23, 2020
  12. Esther12

    Esther12 Senior Member (Voting Rights)

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    That article is a concise example of the lazy way some people in medicine engage in the controversy around ME. So infuriating. The smug, the smug!
     
    MEMarge, Michelle, Mithriel and 9 others like this.
  13. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    The conflation of chronic fatigue and this illness has been effective in creating confusion so profound that it is requiring extraordinary measures to get us out of this twisted lie.

    I can well imagine Norway having a higher incidence if the people tasked with measuring include all chronic fatigue and possibly other illnesses such as depression.

    It has become very disheartening to watch as medical people who are usually thoughtful and considered in their approach fall prey to and are persuaded by this insidious nonsense.
     
  14. rvallee

    rvallee Senior Member (Voting Rights)

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    Good one. It opens saying there is a scandal in the country, but in truth it is in every country, a global disaster, and it is not many people who are discriminated, but nearly all. Even when you soberly present the basic facts they understate the scale and gravity of just how disastrous the whole thing has been and continues to be.

    Otherwise a good account of the broad picture, from someone with personal perspective of being a relative to a pwME.
     
  15. rvallee

    rvallee Senior Member (Voting Rights)

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    Reads a bit... bad opener... clearly misinformed...
    OK thanks I'm out. Thought-terminating clichés have no place when discussing the lives of millions of disabled people, who are denied basic help and support because of people who value a good philosophical conundrum over literally millions of lives.

    Firefighters do not spend hours or days discussing what is the origin of a fire while people are stuck inside. Anyone who brings this stupid "split" is immediately disqualified from the discussion. Very notable that the only people who argue that there isn't such a split are the ones pushing for that split and that nobody but them cares about this imaginary problem.
     
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  16. mango

    mango Senior Member (Voting Rights)

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    Dr Per Julin writes about the differences between ME and stress-induced fatigue/burnout ("utmattningssyndrom", literally "exhaustion syndrome", which is a separate diagnosis in Sweden), in the latest issue of the medical journal Medicinsk Tidskrift:

    Nyfiken på Trötthet
    https://ki.se/forskning/nyfiken-pa-trotthet

     
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  17. rvallee

    rvallee Senior Member (Voting Rights)

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    This is worth highlighting one time or a few thousand:
    And at this point it is 99% the fault of the deniers. Early on, sure, difficult, but there is never an excuse for long-term willful ignorance. We see the same dynamic with climate change, even though the science is way more settled, the damage evident and the costs enormous and still, denial runs deep.

    Which is why in science it is critical to prevent ideologies from gaining acceptance in the first place, as you then have to fight both the real problem and the new, entirely superfluous, problem whose very goal is to prevent the problem from being solved at all.
     
  18. mango

    mango Senior Member (Voting Rights)

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    Trigger warning: suicide.

    Expressen: Diagnosen förstör Karins liv – Lotte blev helt frisk

    https://www.expressen.se/nyheter/krim/diagnosen-forstor-karins-liv-lotte-blev-helt-frisk/

    Lotte is Norwegian, says that she was cured by the Lightning Process. Article links to and quotes Recovery Norway too, mentions Live Landmark, Crawley's SMILE study, suicide, physician assisted suicide etc. Has short quotes by a Swedish patient organisation representative, an unfortunate quote by Jonas Bergquist ("The problem is not an unwillingness to understand, but that we know so little"), mentions Bragées speculations about neck injuries, etc.

    It's one of those articles that, to readers who don't know better, gives the false impression of "showing both sides of a story". Not a recommendation :grumpy:

    Behind a paywall.
     
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  19. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    haven't read it but I don't suppose they mention people comitting suicide after doing LP (?)
     
  20. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Another good followup article.
    Two lawyers talk about their experiences with ME patients being forced to undergo unhelpful treatments before they can apply for and receive health benefits.
    There seem to be different interpretations of the national guidelines for CFS/ME by the Directorate of Health; concerning whether or not CBT/GET should be considered as documented treatment approaches.

    Cesilie Aasen from the Directorate of Health confirms that the guidelines does mention different kinds of assessments and treatments but as as examples only. There are no clear recommendations given from them, as there are no clear evidence for any treatments of this heterogeneous patient group.

    Dagsavisen Fremtiden: Advokatens råd: - Ikke få ME!
    google translation: Lawyer's advice: - Don't get ME!
     
    Amw66, Caesar, Snow Leopard and 8 others like this.

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