Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Chronicle today on ME by six Norwegian professors.

Discussion in 'General ME/CFS Discussion' started by Adele, Dec 3, 2014.

  1. Adele

    Adele

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    The chronicle is published today in Norways biggest non-tabloid newspaper (Aftenposten)

    Translation is mainly by Google translate with a few attempts from me to correct the strangest results of this.


    Chronicle: The ME sufferers deserve serious research
    Now we need politicians, health and research authorities rethink and use the resources to research that could solve the whole ME riddle. Too much time and money has gone into pursuing the wrong track.
    chronicle -
    Updated: 02.des. 2014 9:40 p.m.

    See the list of authors chronicle the bottom of the text.

    Recently, the media report that a young man had to crawl into the ambulance that would fetch him. He had ME and could not walk. He is now in a nursing home with a strong worsening of the condition.

    Certainly ME an enigmatic disease, but not as enigmatic as many would have it. And not so enigmatic that it justifies assaulting patients.

    A growing research literature suggests that ME patients have an activated immune system. In a study from Japan where ME patients were examined with PET scan, an advanced method of mapping the brain, they found signs of inflammation in the brain.

    Research at Haukeland Hospital to Fluge and Mella also indicate that CFS may be an autoimmune disease, ie a disease where the body's immune system attacks the body's own cells and tissues and damage these. A brand new study from Stanford University suggests that ME patients have damage to the brain's white matter.

    Helps confusion
    Many who speak out about ME, consistently disregard this extensive body of literature. It further contributes to confusion when one does not precisely define the disease so that one can talk about the same patient group and highlights treatments that do not have a documented effect on ME.

    This is common feature of several Norwegian works performed by those who claim that ME caused an activation of the autonomic nervous system.

    An article published in Aftenposten on 21 May argues that cognitive behavioral therapy is effective in ME, which is directly wrong when studying a well-defined ME group.

    No disagree that the physiological and mental hang together, but from there to using this as a main approach to the treatment and understanding of ME, both undocumented and unscientific.

    People with serious illnesses like cancer can also be affected psychologically, but hardly anyone would argue that the primary treatment of cancer should be cognitive behavioral therapy.

    Reminiscent of climate skeptics
    In summer, there were several new input from the strongest supporters of the understanding of ME as a stress response. These have many features in common with the so-called "climate skeptics"; those who still claim that climate change is not man-made despite an overwhelming scientific literature that shows the opposite.

    The special with ME is that "climate skeptics", those who deny that there is a significant biomedical literature about ME, apparently have had the health authorities on their side.

    This has led to abuses against this group of patients in health care, social services and child welfare.

    In many cases social services require participation in behavioral therapy and graded exercise to provide financial support, despite the fact that these treatments are unproven and often makes ME sick even sicker. Patients and their relatives are suspicious made and characterized as difficult.

    The CPS has also been drawn into, and in the most severe cases, parents have had to appear in court to fight for custody because they wanted to protect their children from harmful treatment.

    This is a violation of the principles we want to base our health care system, that treatment should be based on research and documented.

    In our opinion such abuses based on an inadequate and wrong understanding of what ME is, and a direct result of the psychosomatic approach has come to dominate the Norwegian healthcare.

    little scientific
    In addition to the abuse this vision has led, we find this approach and the research that underlies little scientific. One of the foremost proponents of stress theory and a very important agenda for Norwegian ME politics until now, Vegard Bruun Wyller, tested this hypothesis in a study using clonidine on young ME patients. This drug reduces the autonomic nervous system.

    Treatment gave no effect, Wyller was unable to prove his theories. His research based on general well-known observation that not too ill ME patients have an activated autonomous nervous system.

    However, it is elemental medical knowledge that such activation may be due to a number of conditions other than mental stress, such as chronic inflammatory diseases. That Wyller not able to substantiate his hypothesis shows how wrong it has been when health care and other agencies have built on his undocumented claims.

    In the budget the government proposes to increase funding for both multidisciplinary outpatient clinics and diagnostic centers, and research on pain and fatigue diseases CSF / ME, fibromyalgia and Lyme disease.

    It is positive, but it is crucial that these funds supports basic research related to infections, inflammation, immunology, neurology, and genetics.

    Costly wrong track
    In the United States now launching of a research project called "End ME / CSF". Steering includes geneticists, immunologists, neurobiologists and infectious diseases, including two former Nobel Prize winners.

    The emphasis is on long-term basic research (basic research), which is the only way to go to get ahead in the understanding of the disease. It is also important that Norway will follow up this line.

    Too much money, energy and time has gone on to pursue the wrong track as Lightning Process and cognitive behavior therapy. Thus many Norwegian experts also lost an opportunity to contribute to the understanding of the condition.

    We are a group of professors in various fields who know ME from different angles. We are surprised that the methodical very weak research into ME and stress response has received such support in dominant environments. Knowledge of established research methods and principles seem to lack in some Norwegian medicine.

    We represent a group that has a different view on the causes of ME than psychosomatic, and we want to contribute to ME patients being treated with respect and offered treatment that is built on international medical research more than on individual researchers beliefs and perceptions.

    We urge politicians, health and research authorities to rethink and use the resources for innovative research that can solve the whole ME riddle.

    The ME sufferers need it more than ever!

    Chronicle Authors:

    Arild Angelsen, Professor, Norwegian University of Life Sciences

    Torstein Egeland, Professor, University of Oslo

    Ruth Haug, Professor, Norwegian University of Life Sciences

    Jan-Olav Henriksen, Professor, School of Theology

    Tor Lea, Professor, Norwegian University of Life Sciences

    Ola Didrik Saugstad, Professor, University of Oslo
     
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  2. A.B.

    A.B. Senior Member

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    This is a really good article. Is it possible to have a human translation?
     
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  3. Adele

    Adele

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    I´m glad you liked it too. I don't think the authors have produced an english version, and I don't trust my own english skills enough to try to translate it in any more "official manner". But there may be another norwegian at the forum who does?
     
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  4. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    oh very well done! Even Google translated, it is a great article. :)

    @ibenagnes
     
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  5. Sidereal

    Sidereal Senior Member

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    Wow, shockingly good article.

    Actually, in Wyller's recent study, lowering the SNS tone with clonidine didn't just give no effect, it made patients slightly less functional than placebo.

    Excessive acid in the muscle (which ME patients have) will also cause sympathetic activation.
     
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  6. akrasia

    akrasia Senior Member

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    This assertion is exactly what we need.

    One of the leitmotifs of the history of ME is the argument that psychiatry is not only the most useful and effective of therapies but that its "brave" practitioners are upholding the standard of science and progressive views of the philosophy of mind against a kind of philistinism and hysteria. This statement turns the tables.

    Taking the tone of how can you believe the nonsense being peddled by the bps school and their mainstream medical supporters and still retain self respect intellectually is where the discussion should be headed.

    It was a great day when the IACFS/ME stopped inviting Peter White et al. to the conventions.

    Throughout my illness I've watched things work in the manner of Gresham's Law, the bad money of the bps and just general noise and malign silliness drive out the good of suggestive research and attentive clinical practice that acknowledges the unknowns of the illness while asserting its claim on research and funding.

    Controlling the reframing of ME, insisting that because of the embrace of an empty. bogus concept like the bps, its supporters have actually betrayed science, obstructing care for very sick people, is a very potent rhetorical stance and an index of how some recent developments have emboldened our allies.

    The bps school and their enablers no longer own the territory of legitimacy, no matter how many short term disappointments this community still has to endure.
     
    Last edited: Dec 3, 2014
  7. lnester7

    lnester7 Seven

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    We need a link to post in Tweeter and FB and everywhere. Good advocacy. @Sasha
     
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  8. Adele

    Adele

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  9. Sasha

    Sasha Fine, thank you

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    Not sure why you're tagging me! I don't tweet and don't know how to use FB. :)
     
  10. SDSue

    SDSue Southeast

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    @Adele Thanks for sharing. Good article.
     
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  11. adreno

    adreno PR activist

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    Fantastic article. Go Norway!
     
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  12. NK17

    NK17 Senior Member

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    Thanks @Adele for posting this great article ;).
    I think we can flag @deleder2k for reworking the Google translation, he has already done a great job with subtitles to Prof. Mella's 12 May which you can find on you tube:
    If he's well enough he may come to our rescue ;).

    I'm a Twitter rookie and have RT the article this very morning, pieces like this don't come out very frequently ...

    Of special note is the mention of Dr. Kogelnik and OMF EndME/Cfs Project as well as the presence among the authors of the article of Prof. Ola Didrik Saugstad, a world renown Norwegian neonatologist, whose son has a severe case of ME.
    Dr. Saugstad has stated publicly that:
    "When the full history of ME will be written one day, we will all be ashamed of ourselves."
    WHO advisor Prof./Dr. Ola Didrik Saugstad
     
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  13. SDSue

    SDSue Southeast

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    I should hope so! Though I think perhaps the worst offenders are incapable of shame or empathy.
     
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  14. NK17

    NK17 Senior Member

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    True, true, but when PWME will be respected, vindicated by serious biomedical research and have DMT disease modifying therapies (Rituximab is first on the list ;), WE PWME will make sure to keep the flame of shame going and pass it down to future generations.
     
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  15. lnester7

    lnester7 Seven

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    I tagged you because you are the person I could think of in the advocacy group. I don't have a problem to post it in PRs tweet I just think somebody in PR board has to approve (if you are not in it and I for confused sorry BF!).
     
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  16. optimist

    optimist Senior Member

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    Thanks for sharing @Adele! I was browsing Aftenposten earlier today, and I did not see it then, and I could not find it there now. To bad if they took it off too soon! People need to read this! We should contact Aftenposten and tell them to make it sticky :)
     
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  17. Adele

    Adele

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    I can still open it by clicking on the link I posted above @optimist . But it may be for subscribers only? Some of Aftenpostens articles are I think.
     
  18. Sasha

    Sasha Fine, thank you

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    That's OK - I think perhaps you have confused me with someone with actual power! :devil: I'm not on the PR board.
     
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  19. optimist

    optimist Senior Member

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    I see now that I formulated my self very badly :) I meant that I could not find it on the front page any longer. The link opens just fine :thumbsup:
     
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  20. Snow Leopard

    Snow Leopard Hibernating

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    I am curious as to how much awareness, impact and debate there is in Norway though, or is it still pushed to the fringes like it is elsewhere?
     
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