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News from Scandinavia

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

  1. inox

    inox Senior Member (Voting Rights)

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    It's a typical Landmark-spin on things.

    One of her main arguments for years when trying to demonize the ME association and doctors working with patients, have been the much lower diagnostic rates of ME in Denmark and Sweden. Where the illness have been less known and almost impossible to get a diagnosis. When Sweden and RME startet to get some information out, and more people got the diagnosis, she couldn't use that argument anymore. So, of course, the solution is to write an heathed opinion piece warning swedes about 'not make the same terrible mistakes as in Norway'. You know, taking ME seriously?

    "The ME-epidemic is on it's way to Sweden" - from february 2018.

    https://www.expressen.se/debatt/me-epidemin-ar-pa-vag-till-sverige/
     
    MEMarge, MSEsperanza, Hutan and 5 others like this.
  2. Peter

    Peter Senior Member (Voting Rights)

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    Yes, it is unbelievable. The only “logical” explanation for letting quacks and charlatans into medicine, must be the crisis in health care, ref. health systems being under pressure and expenses hitting the roof with the benefits of people living longer and such.

    Difficult times resource wise seems to require desperate actions. Cognitive bias is beyond the imaginable when pseudoscience gets access as some kind of easy solution? Patients and and society loosing even more. It is really like pissing in strong headwind.

    I would like to see the long-term costs of todays sorry state compared to economic costs of investing properly in patients and all potential benefits of people getting better/recovery. It is a given that the latter is much to prefer.
     
    MEMarge, MSEsperanza, Hutan and 4 others like this.
  3. rvallee

    rvallee Senior Member (Voting Rights)

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    :banghead:
     
    MEMarge, MSEsperanza, inox and 2 others like this.
  4. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Nina E. Steinkopf has written a very good reply:

    Skylder på pasienten når forskningen feiler
    google translation: Blaming the patient when the research fails

    Clinical director at A-hus, Erik Borge Skei writes in Aftenposten that "pressure from patient groups means that one of our reputable research environments does not get the funds to continue" and believes that it will harm the patients.

    Skei does not mention that there is a professional conflict in the field. He himself writes that "Norway's most published research environment in the ME field is shrinking." Then one must also assume that most of the Norwegian research funds that have been granted for ME research over the past 15 years, have gone to precisely Vegard BB Wyller's projects.

    After 15 years, Wyller's stress theory has not been proven and the patients are still as ill. His research has thus delayed the understanding of Myalgic Encephalopathy (ME).
     
    MEMarge, Cheshire, lycaena and 13 others like this.
  5. mango

    mango Senior Member (Voting Rights)

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    MillionsMissing Sweden would like to livestream their events online on May 12. However, in order to get access to sending livestreams on YouTube your channel has to have more than 1000 subscribers. If you would like to help them reach that target, please subscribe here:

    https://www.youtube.com/channel/UCoWspDPvlmvf1Ym4AqKC2iQ
     
    Anna H, lycaena, MSEsperanza and 10 others like this.
  6. andypants

    andypants Senior Member (Voting Rights)

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    Happy to help, just wondering if it might be easier to stream on FB? No lower limit there, AFAIK.

    ETA: And more easily accessible, easier to share etc.
     
  7. mango

    mango Senior Member (Voting Rights)

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    I don't know their reasons, just passing the message along. Sorry.
     
  8. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    I think it’s hard to know how many are getting diagnosed with CFS when it should be depression in my case it was the other way round and I think this is quite likely for other gradual onset people as well
     
  9. Kalliope

    Kalliope Senior Member (Voting Rights)

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    And now a Lightning Process-coach has joined the debate

    Lightning Process er selvhjelp, ikke behandling
    google translation: Lightning Process is self-help, not treatment

    Experiences after the course have shown a wide range, from rapid recovery stories from prolonged bed rest, discussed in the media , to less good experiences, often presented on ME blogs. Internal evaluation of several hundred course participants has shown that nine out of ten people attending the course recommend it to others, even one year after participation.

    However, there has been some uncertainty regarding the effect of the Lightning Process. It was therefore a joyful day when the first randomized controlled study, the gold standard in research, was published in an internationally recognized scientific journal in January last year.

    The study was conducted within the public health service in England and included 100 adolescents with CFS / ME. The results of the study showed the following: Those who attended courses in Lightning Process in addition to receiving specialist treatment had significantly better effect than those who only received specialist treatment. Most importantly, the study showed no serious side effects.

     
  10. Esther12

    Esther12 Senior Member (Voting Rights)

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  11. rvallee

    rvallee Senior Member (Voting Rights)

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    Oh, I think they do understand the problems. They're just fine with those because it produces the outcome they want.

    If those flaws produced an outcome they did not like, they would be screaming about how it invalidates the results, make no mistake about that. Not surprisingly, the flaws always inflate the results in favor of the outcomes they seek. Every. Single. Time. Ideology is blinding.
     
    alktipping, MEMarge, Sean and 4 others like this.
  12. Adrian

    Adrian Administrator

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    This was sent via the forum contact form

     
  13. mango

    mango Senior Member (Voting Rights)

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  14. mango

    mango Senior Member (Voting Rights)

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    Reply from SBU (Swedish Agency for Health Technology Assessment and Assessment of Social Services)

    https://www.dagenssamhalle.se/debatt/sbu-reimer-utgar-fran-gamla-mecfs-kriterier-27186

    Google Translate, English
     
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  15. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Another letter-to-the-editor in the ongoing ME debate in the newspaper Aftenposten. This time from prof. Wyller

    Mentale teknikker er nyttig mot ME
    google translation Mental techniques are useful for ME

    Ten years ago, I made a hypothesis that automatic stress reactions are important for ME, while disorders of the immune system are not so important. Stress reactions involve both hormones, nerves, thoughts, feelings and behaviors - here it is meaningless to distinguish between biology and psychology.

    The hypothesis is firmly rooted in modern neuroscience, especially how the brain automatically interprets signals from our surroundings and from the body's interior on the basis of expectations.

    ...
    That mental processes are part of the (not the whole) picture at ME is a good news. This means that mental techniques are likely to be useful treatment.This assumption has proved to be correct. Several studies have documented good effect of cognitive therapy, while the risk of side effects is very low.

    The largest of these studies, the British PACE study , has been highly criticized, but an independent review of British health authorities shows that this criticism is essentially unfounded (British Medical Journal, February 7, 2019 ).


    The mental training program Lightning Process or LP , which is based on a blend of cognitive methods and other fully recognized psychological techniques, is less well-known in scientific terms, but one study suggests that this method is also safe and can have good effect. LP is often rejected because LP instructors make money from their work, but this is of course no scientific objection to the method. All drugs are also linked to commercial interests.
     
    Last edited: Apr 16, 2019
    MSEsperanza, Hutan, andypants and 5 others like this.
  16. Trish

    Trish Moderator Staff Member

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    Oh dear. The BPS people do seem particularly keen to pretend objections to their work are based on anything but the real reasons - lack of any objective scientific evidence of efficacy.
     
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  17. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    So it is meaningless to insist that an illness is biopsychosocial?

    The whole piece from Wyller reveals his amateurishness as a biomedical scientist. He has the sort of impervious baseless dogma of people who come round to your door trying to persuade you to join their religious sect. For a long time I have withheld judgment about Wyller. I am always ready to be proved wrong. But this is the talk of someone who understands nothing.
     
  18. strategist

    strategist Senior Member (Voting Rights)

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    He really seems utterly clueless. There are two errors here. The first is that one couldn't possibly tell from such a clinical trial whether expectations are determining outcomes, because the procedure was designed to ensure that expectations were the same in both trial groups. The second seems to be a confusion of biased reporting of health with almost magical mind-body effects.

    The placebo effect, in the sense of a genuine and significant healing effect triggered by positive expectations and similar psychological factors, was never a thing. It was a myth created by Beecher who jumped to this conclusion without considering that patients can improve merely due to passage of time, may wish to please the doctor, and so on.
     
    Last edited: Apr 16, 2019
  19. Esther12

    Esther12 Senior Member (Voting Rights)

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    Though this shows nothing of the sort, I suspect Montgomery wanted it to be able to be used for this sort of propaganda.
     
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  20. rvallee

    rvallee Senior Member (Voting Rights)

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    NLP is recognized as quack pseudoscience (and not even going to comment on the Tarot card thing). All these idiots are doing (sorry, duing) is beclowning themselves and broadcasting to the entire world that they are incapable of distinguishing science from total nonsense.

    Clearly the standards to get a medical license (or a professorship) are not nearly as high as they ought to be when complete fools are somehow operating without adult supervision.
     

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