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News from Scandinavia

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

  1. TiredSam

    TiredSam Moderator Staff Member

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    :laugh: What a fabulous verb, I'll teach it to my students.
     
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  2. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    If only that were true. Then everyone would see through them. But we live in the age of goopism.

    Science is meaningless, sales pitch is what matters. Wyller knows his audience.

    It's getting really hard to tell fact from fiction and no-one is going to fact check--that's why they can pretend that the BMJ article is a defense when it's no such thing. Even if someone miraculously read the article unless they were reading critically they would see that all the boxes were checked and might still come away thinking that all is as he said.

    They know this. I think that's why they bother to keep on writing this stuff. Their nightmare is that people of influence and with the relevant skill in parsing information of this sort if they get exposed to it they might have a problem.

    For us this is the issue. To get the right people exposed to all the facts. Many of those people had been poisoned against people with ME from the beginning but at least that is now changing.
     
  3. Sean

    Sean Senior Member (Voting Rights)

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    Liar. It did not assess methodology.
     
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  4. inox

    inox Senior Member (Voting Rights)

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    Sigmund Olafsen is a 'civil engineer / senior researcher in acoustics. He is also a relative'. He also have written some good articles about PACE and highlightning it's faults, mainly focusing on that the data never supported the researchers claims, in a very factual style.

    April 24 he had another good chronicle in 'Dagens medisin' (=todays medicine):
    "ME treatment needs to enter a new track" [norwegian - google english]

    It's not really anything new in this piece, as such. But his writing style and authority as a researcher himself, in another field, still making an impact. As can be seen by the responses in the comments field... Nina Andresen, the psychologist and ex-patient that have written several negative pieces about ME-patients is there - as is several others who have a hard time swallowing there is no data to support their claims.
     
  5. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    Nina Andresen in one of her comments states:

    If facts are important for Olafsen, then I can state that the CDC (the health authorities in the US) still recommends both CBT (cognitive behavioral therapy) and GET (graded exercise therapy), as this is recommended in the treatment guide for health personnel, the link on their website

    Is this correct? I think she is playing the conflating game as per BPS usual and the CDC is referring to activity pacing which she is suggesting is what they are doing (only differently as they are concerned with increasing activity but this is not said).

    Here's the relevant page: https://www.cdc.gov/me-cfs/treatment/index.html
     
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  6. Esther12

    Esther12 Senior Member (Voting Rights)

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    Seems she's referring to the fact that there's a link on the CDC webdsite to these Canadian guidelines that mention CBT and GET: http://www.topalbertadoctors.org/cpgs/0242896
     
  7. Andy

    Andy Committee Member & Outreach

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    Closest reference to CBT on that page
    and closest reference to GET
    So I think that confirms that she is being deliberately inaccurate in what she says.
     
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  8. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    Well that shows me the TOP site but where did you find it at the CDC? Is it obviously accessible or did she go digging? It may be that the CDC need to be made aware.

    ETA: She is being disingenuous if it is not actually the CDC
     
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  9. Esther12

    Esther12 Senior Member (Voting Rights)

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    I found it by searching for what she quoted.

    It's the 'Clinical Care of Patients with ME/CFS' link at the bottom of this page:

    https://www.cdc.gov/me-cfs/healthca...-mecfs/treating-most-disruptive-symptoms.html
     
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  10. inox

    inox Senior Member (Voting Rights)

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    That sums up most of her statements really, as with Landmark we've learrned to always check sources and claimes made.

    Olafsen and others are doing a very good job in the commentaries :)
     
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  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  12. Rick Sanchez

    Rick Sanchez Senior Member (Voting Rights)

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    Bizarre article in Denmark about ME/CFS and functional neurological disorders (FND)

    https://translate.google.com/translate?sl=da&tl=en&u=https://dagensmedicin.dk/lad-os-tale-om-funktionelle-neurologiske-lidelser/

    Does anyone even know what to make of this? I'm honestly so confused

    I thouht FND had nothing to do with 'Funktionelle lidelser' / 'functional disorders' / 'bodily distress syndrome'?

    Also the debate in Denmark was about having ME/CFS taken out of the entire functional disorders (funktionelle lidelsser), it had absolutely nothing to do with FND. Why is the author brining it up?

    What does ME/CFS have to do with FND? How do they even overlap / have anything to do with each others?
     
    Last edited: Apr 27, 2019
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  13. Esther12

    Esther12 Senior Member (Voting Rights)

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    It looks like you need to log in, so google translate isn't working for me.
     
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  14. Rick Sanchez

    Rick Sanchez Senior Member (Voting Rights)

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    Doesn't work for me either now, I was a naughty boy and copy pasted in my original comment.
     
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  15. strategist

    strategist Senior Member (Voting Rights)

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    If you can't explain it, that means you can't explain it. It doesn't mean that you have gained evidence that these symptoms have a particular cause.
     
    Last edited: Apr 27, 2019
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  16. rvallee

    rvallee Senior Member (Voting Rights)

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    It's a logical fallacy that can be used to argue that astrology is real.

    Stars and planets exist

    Stars and planets have an influence on us (gravitational and electromagnetic)

    Their influence coincides with events on Earth

    Those events can be argued to be influenced by stars and planets

    Ergo astrology is real

    The real problem is that institutions are enabling this nonsense. It's normal for fringe ideas to be proposed. What's not normal is that they are propped up despite making no sense whatsoever.
     
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  17. TiredSam

    TiredSam Moderator Staff Member

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    Yes, that's how I read it:
    Hopefully this is the first of a series of 12 articles, I'm looking forward to reading what they say about Taurus.
     
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  18. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Professor Montoya has been visiting Store Sköndal outside Stockholm, Sweden. Stora Sköndal has been running an outpatient clinic for ME patients for several years. They have a biomedical approach, does assessment, treatment (which I believe is mainly about managing symptoms) as well as research.
     
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  19. Kalliope

    Kalliope Senior Member (Voting Rights)

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    For almost 30 years, Norway had two ME patient organisations. One of them, MENIN, decided in 2017 to close down and to donate their profit to research into ME.

    This month they gave a huge donation on 2,1 million NOK (241682 USD, 216756 EUR, 187147 GBP) to the researchers Olav Mella, Øystein Fluge and their team at Haukeland university Hospital

     
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  20. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I wouldn't mind if a certain UK charity did the same.:speechless:
     
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