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The Norwegian ME Association withdraws tonight as co-organisers of research conference

Discussion in 'General ME/CFS News' started by Kalliope, Nov 19, 2018.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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    The Norwegian ME Association has been working on organising a two day research conference next week in collaboration with the National Competence service for CFS/ME and the Norwegian Institute of Public Health.

    Suddenly during last weekend LP coach Live Landmark appeared on the final programme. The Norwegian ME Association requested a removal of this talk. The request got dismissed by the other organisers, and therefore the ME Association has decided to withdraw themselves as co-organiser.

    There was a research conference also last year with the same three organisers. The ME Association asked to include a talk about the PACE-trial, but was dismissed. Instead they decided to agree upon basing the conference on consensus and to avoid the most controversial subjects. It appears this agreement doesn't any longer stand.

    The Norwegian ME Association has tonight written a statement explaining why they've taken this action.

    The Norwegian ME Association: ME-foreningen trekker seg som medarrangør for CFS/ME konferansen 2018

    I wasn't able to google translate the whole page, but here are some google translated extracts from the statement:

    The draft to the conference program includes a post titled: "A Systematic Review of the Evidence Base for the Lightning Process". This is identical to a systematic review reported by Phil Parker, the founder of Lightening Process (LP), to the British National Institute of Health Research
    https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=104336

    LP is a commercial treatment, created and trademark protected by Phil Parker. It violates basic scientific and ethical principles of independence that commercial actors themselves should carry out such systematic reviews of the effects of their own treatments. This in itself is sufficient reason to reject this type of post at a research conference.

    ......
    Norway's ME association welcomes an open and critical debate on the effects of various treatments, but we oppose that a research conference should be used as an arena to market and legitimize commercial and partly harmful alternative treatments.

    The board of the Norwegian ME Association has requested that the post be removed from the program. This has not been met, and Norway's ME association therefore retires as the organizer of the conference


    Edited for clarity
     
    Last edited: Nov 19, 2018
    Inara, SallyC, BeautifulDay and 41 others like this.
  2. Esther12

    Esther12 Senior Member (Voting Rights)

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  3. Kalliope

    Kalliope Senior Member (Voting Rights)

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    The research conference will take place Nov. 26th-27th
    As far as I know it was the ME Association's initiative to organise the research conference last year together with the National Competence service for CFS/ME and the Norwegian Institute of Public Health. Afterwards they decided to repeat it this year.

    I am so disappointed by the other organisers for putting LP on the programme, and frankly a bit embarrassed on their behalf.

    There's been a petition against the National Competence Service for CFS/ME and their biopsychosocial approach to ME. The petition demands the removal of the people at the Competence Service and has reached over 5 600 signatures. I thought this strong message would make some impression on them, but obviously not..

    The last day of the conference ends with some open lectures by two ME researchers and David Tuller.
    This is organised by the ME Association only, and I assume will go ahead as planned.
     
  4. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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  5. Kalliope

    Kalliope Senior Member (Voting Rights)

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    JaimeS and Snowdrop like this.
  6. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    Maybe you could provide the original Norwegian and we can translate at this end? because I'm still getting an error when I click through.

    404 - File or directory not found.
    The resource you are looking for might have been removed, had its name changed, or is temporarily unavailable.
     
    Kalliope likes this.
  7. Kalliope

    Kalliope Senior Member (Voting Rights)

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  8. Barry

    Barry Senior Member (Voting Rights)

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  9. inox

    inox Senior Member (Voting Rights)

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    Good on them for taking action :thumbup:

    Will have to process a bit, what I think of the FHI and the NKT..... But just HOW...??! How can they think a discussion on PACE is to controversial to include in an actual research conference - but see no problem with including a "review" of a VERY controversial ALTERNATIVE treatment - done by the person that developed the program and OWNS it......???

    I'm flabbergasted.

    The FHI is supposed to be the gate keepers of good science and knowledge in general. The NKT patients have mostly given up on, but that the FHI don't intervene.....? :( Also - The FHI (The Norwegian Institute of Public Health) are where both Larun/ Brurberg and Cochrane Norway is situated, to give some context to the exercise review. They now also publicy support and front LP, and an obviosly very biased review.... :(



    @Kalliope - I'm also having trouble with google translate there days? But have found that Bing translate will often translate the pages google don't load :)

    http://www.microsofttranslator.com/...m-medarrangor-for-forskningskonferansen-2018/
     
  10. Sean

    Sean Senior Member (Voting Rights)

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  11. inox

    inox Senior Member (Voting Rights)

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    This is what Vegard Bruun Wyller said about LP when the SMILE study came out, in a medical journal (Dagens Medisin = Todays Medicine)


    https://www.dagensmedisin.no/artikler/2017/09/21/-ikke-overraskende/

    https://www.microsofttranslator.com...in.no/artikler/2017/09/21/-ikke-overraskende/

    Our "BPS-crowd" isn't really about re-learning that symptoms are normal bodily sensations - aka anxity about health and unhelpful illness belifes of the Wessley school. But more into Wyllers theory about a hung up stress-respons, and re-training the brain itself into normal functioning. LP fits like a glove into his thinking.

    Wyller and Landmark have had a huge impact on how health professionals view ME over here. For years they were the main "ME experts", giving their opinion on anything ME in public. And also made talks for health professionals etc.

    So many health professionals don't think of LP as an alternative treatment, but a more pointed and effective version of cbt - able to actually change patients brains into normal functioning. This is the backdrop as to why the FHI and the KT loose all their scientific rigor when it comes to LP, Phil Parker etc - it is viewed as a very exiting, real possibility to treat patients. Belive it or not.

    Trying to change that story have been hard, impossible. Because Landmark is very good with media, and twisting things around etc.
     
  12. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    Thanks @Kalliope I can read it now. So PP throws together a salad and calls it science. Oh boy.
    I bet his next recipe is hash.
     
  13. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Just more tripe
     
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  14. JaimeS

    JaimeS Senior Member (Voting Rights)

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    My Norwegian housemate found this horrifying but my attempted explanation of the Lightning Process made him laugh at least. :confused:

    Also read it aloud to the office when I worked at Stanford. Unfortunately now Alex will ask me if I'm "doing a bad day" when I feel poorly.
     
  15. andypants

    andypants Senior Member (Voting Rights)

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    I’m so angry. Unfortunately I can’t really get angry of course, as that would make me crash in about half a minute. I’m holding on to this anger for later use. Someday it’s going to blow up in someone’s face, preferably someone who deserves it.
     
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  16. Milo

    Milo Senior Member (Voting Rights)

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    Great decision by the Norwegian ME Association. It’s so disconcerting when countries such as Norway wants to push the psycho agenda.it will make them look really bad when we have papers publishing about biomarkers and hopefully it is not far out in the future.
     
  17. Amw66

    Amw66 Senior Member (Voting Rights)

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    All the more important that @dave30th makes an appearance .
     
  18. Peter

    Peter Senior Member (Voting Rights)

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    I think the decision is good and right. There is no way you really could have confidence in the institute, that sort of made entry to ME around 2011. C. Stoltenberg and P. Magnus wrote a pretty bad piece in the major newspaper Aftenposten, most of all revealing very little knowledge, not really addressing the real problems and concerns.

    Since then almost nothing of value has happened. There is this odd partnership with Landmark and corny interest in LP. Thats it, and the situation in Norway may be very close to the grim situation in UK. I sometimes get the impression that people outside Norway think the situation here is quite good or better, but that is not the case!

    Yes, we have some bold researchers in Bergen, that at least have done a hell of a job. Some credit also to the research council for patient involvement, but except from that - alarmingly bad.
     
  19. Kalliope

    Kalliope Senior Member (Voting Rights)

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    :rofl: No worries. Just do a STOP-movement with your hand and visualise a palm tree, and you'll be fine. It'll change your brain, honest! And it works for EVERYTHING, so the rest of your office really should join in.
     
    Last edited: Nov 20, 2018
  20. Peter

    Peter Senior Member (Voting Rights)

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    Dont forget to raise your back for good body posture and speak in a positive tone, - STOP DOING ME! I guarantee you it will make you «live the life you love», as the quacks like to put it..

    quack, quack.
     

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