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MElivet - Blog posts by Nina E. Steinkopf

Discussion in 'General ME/CFS news' started by Kalliope, Jul 25, 2021.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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    As Nina E. Steinkopf provides many of her excellent blog posts in English, I thought it could be useful to from now on have a separate thread for them, instead of them mostly being shared in the thread for news from Scandinavia.

    This blog post of today is related to the planned Lightning Process study in Norway which recently had its ethical approval rejected. It is also about the placebo effect in general and that the medical field has a lot to lose when alternative therapies are piggy backing on the placebo response.

    She shares a long quote (with permission) from professor Fabrizio Benedetti from his 2019 article in Clin. Pharmacy titled: The Dangerous Side of Placebo Research: Is Hard Science Boosting Pseudoscience?"

    English: Is placebo research boosting pseudoscience?
    Norwegian: Bidrar placebo-forskning til økt pseudovitenskap?

    Quote:
    - when hard science started investigating placebo effects, it unconsciously produced a shift in quackery thinking. In fact, charlatans are becoming more and more aware that their bizarre interventions could work through a placebo effect. Indeed, whereas hard science has so far denied any scientific basis for nonconventional therapies, now the very same hard science certifies that the placebo effect has scientific grounds. Therefore, quacks are no longer interested in showing that their pseudo-interventions work; rather, they justify their use on the basis of the possibility that these bizarre interventions may induce strong placebo effects…
     
    Ash, bobbler, Hutan and 22 others like this.
  2. Kalliope

    Kalliope Senior Member (Voting Rights)

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    New blog post from Nina E. Steinkopf in English translation. This time about Lightning Process which she compares with classical red flags of religious sects.

    Is the Lightning Process a sect?
     
    Helene, cfsandmore, Florence and 10 others like this.
  3. alktipping

    alktipping Senior Member (Voting Rights)

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    i do not see it as a sect more like a pyramid selling scam
     
    Florence and Sean like this.
  4. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Doesn’t it have features of both pyramid selling and a cult? It’s structure is that of a pyramid selling scheme and I suspect for some devotees income generation is central but also you read of others displaying cult like behaviour where belief is their motivation.
     
    bobbler, Helene, alktipping and 6 others like this.
  5. Trish

    Trish Moderator Staff Member

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    I think it has features of both.
     
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  6. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Recovery Norge claims no Lightning Process coaches were part of the startup of the organisation. Nina E. Steinkopf provides documentation showing that this claim is untrue.
    She also says that of 15 000 Norwegians having taken the LP, Recovery Norge is able to tell of only 34-37 unique recovery stories about someone diagnosed with ME having recovered by this method.

    Still they have apparently no problem to qualify as a user organisation for the planned Lightning Process study by LP coach Landmark or to a study by prof. Wyller on Long Covid and adolescents, without being neither an ME patient organisation or a Long Covid patient organisation.

    Recovery Norge er en Lightning Process-organisasjon
    Google translation Recovery Norge is a Lightning Process organisation
     
    Ash, bobbler, Michelle and 15 others like this.
  7. Kalliope

    Kalliope Senior Member (Voting Rights)

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    The article is translated into English. It's quite a saga..
    Recovery Norway is a Lightning Process organization
     
    rainy, Mithriel, MEMarge and 10 others like this.
  8. rvallee

    rvallee Senior Member (Voting Rights)

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    I don't know who the @cfs_research account is and how they fit in that, but they said that Henrik was the only founder.

    A "patient" organization, founded by one MD along with a group of therapists working for LP. Right. Very credible.

    Basically RN is a front to work around laws that LP would be subject to as a business. And instead of protecting patients, medical authorities are playing along. Norway will seriously need to complete clean house in their medical authorities. There is zero chance that such dysfunction is limited to this issue.
     
    bobbler, Missense, rainy and 6 others like this.
  9. Trish

    Trish Moderator Staff Member

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    That is really shocking. I feel sad for Norwegians with ME/CFS and Long Covid.
     
    Ash, bobbler, Missense and 10 others like this.
  10. Kalliope

    Kalliope Senior Member (Voting Rights)

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    That may not have been Vogt's idea and plan for the organisation, but he should take responsibility when LP coaches are using the organisation as a way to promote their product.
     
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  11. Kalliope

    Kalliope Senior Member (Voting Rights)

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    And it's pretty unusual I hope that a researcher founds the user organisation for her trial..
     
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  12. dave30th

    dave30th Senior Member (Voting Rights)

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    I think Vogt conceived of himself as a patient. He said he cured himself of tinnitus.
     
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  13. rvallee

    rvallee Senior Member (Voting Rights)

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    And I'm the king of Siam. I have a paper somewhere. Don't ask for confirmation.
     
  14. Sean

    Sean Moderator Staff Member

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    And tinnitus is exactly the same as having ME.
     
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  15. Art Vandelay

    Art Vandelay Senior Member (Voting Rights)

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    I would take anything said by that twitter account with a grain of salt. The person behind that account has been trolling people with ME/CFS for decades after they refused to recognise his genius and buy his book.
     
    Last edited: May 15, 2022
    Ash, EzzieD, TiredSam and 7 others like this.
  16. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Yes, as they are both categorised as MUS. Vogt was obsessing with his tinnitus and got helped by a therapist to learn to cope with it, so the same must work for ME, no?
    :banghead:
     
    Ash, bobbler, Missense and 13 others like this.
  17. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Link above includes:

    "This is an email Stranheim sent to the Norwegian Ministry of Health and Care Services on behalf of RN following a meeting about Long Covid. One of the participants was Paul Garner. Garner claims he recovered from Long Covid and ME after a phone call with Landmark. That he, at the time he claims he was ill, went for 5 km long walks every day and was diving in Grenada, is not as well known. Sissel Sunde writes: «What Dagbladet knew about Paul Garner» (Norwegian text)."
     
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  18. rvallee

    rvallee Senior Member (Voting Rights)

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    Not a credible source but from past interactions, they seem to know Vogt personally and interact with, so maybe just a slip.
     
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  19. Art Vandelay

    Art Vandelay Senior Member (Voting Rights)

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    His story is on the RN website so anything is possible. (He didn't do the LP but I suppose they were desperate for mind-over-matter anecdotes.)
     
    Last edited: May 16, 2022
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  20. Esther12

    Esther12 Senior Member (Voting Rights)

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    I didn't see any supporting evidence for that claim about Garner and Landmark.

    The linked to blog makes this claim, but doesn't provide any evidence for it:

    https://lifewithmebysissel-wordpres...uto&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp
     
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