MElivet - Blog posts by Nina E. Steinkopf

[Kalliope]

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…

 

[Kalliope]

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?

 

[alktipping]

i do not see it as a sect more like a pyramid selling scam

 

[Peter T]

i do not see it as a sect more like a pyramid selling scam

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.

 

[Trish]

i do not see it as a sect more like a pyramid selling scam

I think it has features of both.

 

[Kalliope]

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

 

[Kalliope]

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

The article is translated into English. It's quite a saga..
Recovery Norway is a Lightning Process organization

 

[rvallee]

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.

 

[Trish]

That is really shocking. I feel sad for Norwegians with ME/CFS and Long Covid.

 

[Kalliope]

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.

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.

 

[Kalliope]

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

 

[dave30th]

A "patient" organization, founded by one MD

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

 

[rvallee]

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

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

 

[Sean]

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

And tinnitus is exactly the same as having ME.

 

[Art Vandelay]

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.

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.

 

[Kalliope]

And tinnitus is exactly the same as having ME.

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?

 

[MEMarge]

The article is translated into English. It's quite a saga..
Recovery Norway is a Lightning Process organization

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)."

 

[rvallee]

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.

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

 

[Art Vandelay]

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

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.)

 

[Esther12]

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)."

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:

Dagbladet writes:

“But Garner did not go to the ME clinic. He received a tip from a medical colleague that he should talk to a Norwegian doctoral student in psychology who had previously had ME. And get well. ”

The medical colleague is Henrik Vogt, head of Recovery Norway, and the student is Live Landmark - whose doctoral study at Lightning Process lost ethical approval in June 2021. Dagbladet does not mention this.

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