A Messiah in the Norwegian health system? Lightning Process and the Norwegian medical establishment - Blogpost by Nina E. Steinkopf (2019)

[benji]

For crying out loud. Every single author is involved in neuro-linguistic programming or the Lightning Process. Shall we have a guess what the outcome will be?

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I have a guess: although there is no mention of me/cfs in the protocol, it will be an essential part of the paper.

 

[Caroline Struthers]

Well if they are paying for it they should be accountable for its use, as I see it!

Prospero comes under NIHR. It is clearly not simply a registering tool. The idea is to guarantee quality, as in:

'We hope that this will reduce the potential for bias by reducing the opportunity for data extraction to lead to conscious or subconscious effects on the review, for instance by influencing decisions to include or exclude certain items in order to shape a review so that it reaches a desired conclusion.'

What is the point of including reviews where bias is guaranteed?

I agree totally. They always say "hope to reduce potential for bias" so they cannot be held responsible or actually police what people do. It's exactly the same as the trials registers - no guarantee of research quality. I would love to set up a Research Police Force/Ombudsman. Like a souped up HRA with teeth and power. Where should we start? Carol Monaghan?

 

[Skycloud]

I would love to set up a Research Police Force/Ombudsman. Like a souped up HRA with teeth and power. Where should we start? Carol Monaghan?

I have been wondering in my more idealistic moments why there isn’t one, but I don’t know about this sort of thing. It seems a good idea to me.

I’d be interested to know if there are any good reasons why this isn’t a good idea in principle.

 

[Mithriel]

I think that is what cochrane is supposed to be.

 

[chrisb]

Would it work? "Regulatory capture" seems to be the norm.

 

[Skycloud]

I think that is what cochrane is supposed to be.

But Cochrane doesn’t have power to regulate or teeth to sanction does it? To me it seems more like a highly influential cross between a library and a marketing tool.

 

[Mithriel]

It is meant to be an organisation that checks out papers so scientists don't have to read them all, a bit like a version of "Which" for the research world. In this it fails spectacularly as far as ME is concerned.

Like everything else with ME the rules and procedures are fine, just that they are never applied to anything to do with us.

 

[benji]

Another interesting fact from the blogpost, already in 2012 nearly 5000 Norwegians have attended LP. And surely some thousand after 2012. So for example 7000 in total.
Recovery Norway counts perhaps a hundred of them, to be -very- generous. And they have promoted themselves and looked for new members in the main newspapers in Norway, in sosial media and comment fields, tried to recruit new members. For nearly two years now. And they found 100 out of 7000? What about the other 6900?? It’s kind of a good argument. 1 out of 70 is not a very good succesrate.

 

[Marky]

"PP and LL are affiliated with the Lightning Process.Therefore the research team has expanded to include those with no direct interest in Lightning Process"

This is a joke right? Surely there must be some rules which don`t allow publication of such an obvious case of commercial bias?

 

[Caroline Struthers]

I think that is what cochrane is supposed to be.

Yes! I used to work for Cochrane and realised after a few months that they are ideally placed to do the job. They have thousands of willing volunteers who could do the systemativ surveillance work. But they spend all their time training people to shoehorn dodgy data into meta-analyses which (as we know) are usually worse than useless.

 

[rvallee]

It is meant to be an organisation that checks out papers so scientists don't have to read them all, a bit like a version of "Which" for the research world. In this it fails spectacularly as far as ME is concerned.

Like everything else with ME the rules and procedures are fine, just that they are never applied to anything to do with us.

Exhibit #1: the brutal peer review of the exercise review, which nonetheless received high grades. Exhibit #2: correspondence about the review clearly showing it did not pass the laugh test.

What's the point of peer review when it's just shrugged off because some people want predetermined conclusions to be true? Like the rule of law, enforcement is 9/10. But when the same people who did the research are reviewing their own work, how can people even pretend this is legitimate? Horton hyped PACE as a neutral investigation by honest researchers with no allegiance, despite knowing fully that Sharpe, White and Wessely have been hyping their product for decades and had enormous conflicts of interest that they did not declare as mandated. The failure is blatant and nearly universal.

NICE did the same in 2007, downplaying contradictory evidence and hyping weak "supporting" evidence that would never normally be included because of how unreliable and biased it is. The process was only followed superficially, like simply noting conflicts of interests but letting them influence the outcome.

I'm not sure what people expect out of the upcoming loosening of already broken rules. Whatever is behind this is essentially breaking the entire scientific method in the very field where life and death is the outcome. It's like medical science is following in the footsteps of the politics of the last few years. Makes no damn sense given how evident and well-documented the failure is.

 

[Caroline Struthers]

But Cochrane doesn’t have power to regulate or teeth to sanction does it? To me it seems more like a highly influential cross between a library and a marketing tool.

Exactly right. But their reputation is as an incorruptible infallible group of independent scientists. The people with real power in the organisation are not scientists and they trust their volunteers to get it right. If the volunteer authors screw up due to incompetence or conflict of interest there are no sanctions. They always defer to rules and policies because they don't understand how and why research is corrupted to be used as a marketing tool for interventions - and not only by drug companies. Their endless defence is being more strict in their rules and policies than other top tier journals. This is neither difficult (because most journals are so poor) or true.

 

[MSEsperanza]

https://www.recoverynorge.org/2019/01/20/arild-berg-me-cfs/

From wikipedia:

On 22 June 2019, Berg died at the age of 43. According to a statement from his family, "Arild chose to leave us", indicating that he died by suicide.[1]

https://en.wikipedia.org/wiki/Arild_Berg

Tried to save the page to the webarchive, don't know if it worked?
http://web.archive.org/web/20190911...coverynorge.org/2019/01/20/arild-berg-me-cfs/

(Apologies if this post is misplaced, brain-fogged and just popping in)

Edited to add from Recovery's English language version:

In June 2019 Arild Berg died, choosing to leave us. This reminds us that leaving ME/CFS behind does noe mean life becomes easy or problem free. [...] We continue to publish his story as it is still full of insight in agreement with his family.

https://www.recoverynorway.org/2019/01/20/arild-berg-me-cfs/

ETA 2: It seems that this wasn't originally written as a testimony for Recovery Norway and isn't about LP either:

Arild Berg has previously described his story in an interview with Bodonu.no, and a lot of this personal story is based on that article.

The bit about LP in fact states that it didn't help him:

When it comes to the Lightning process (LP) that others – including many members of Recovery Norway – have had positive experiences with, it is also based on a theory that ME is caused by a long-term stress response.

I also tried it. During the course I saw several people get considerably better and some that recovered completely. I myself experienced more symptoms and stress when I used LP. Nothing long term, but I got temporary symptoms each time.

This is easy to explain in hindsight. The LP-instructor had suggested that I ‘take myself back’ to playing on the football field again and ‘bring back the energy’ I had in those days. As football was a big reason for my ME in the first place, this wasn’t helpful. I tried for a while, but concluded that it wasn’t for me. The solution became a combination of gradual retraining and a total absence of football.

ETA 3: About how Recovery Norway is linked to the Lightning Process see the post below: https://www.s4me.info/threads/a-mes...ina-e-steinkopf-2019.11210/page-2#post-200942

(Apologies again for the many editions -- I really shouldn't post when that brain-fogged.)

 

[Hoopoe]

His first symptom was a high pulse that wouldn't go down. I wonder if he had POTS?

 

[MSEsperanza]

Professionals about 'Recovery Norway':

Rona Moss-Morris, Professor of Psychology as Applied to Medicine, Head of Health Psychology, King’s College, London, UK:

“We can learn a lot from these stories about recovery from CFS – look forward to more”.

https://www.recoverynorway.org/about-us/professionals-on-recovery/

 

[MSEsperanza]

Henrik Vogt, founder of 'Recovery Norway' :

"[...] the focus has beed one-sided on those who are still suffering, on the dark side. More should be written on those who make it into the light".

https://henrikvogt.com/2016/08/31/cfsme-listen-to-those-who-got-well/

 

[MSEsperanza]

Nina Steinkopf mentions the affiliations of Recovery Norway with the Lightning Process in her article:

[... ]in September 2017, physician Henrik Vogt created the "patient organization" Recovery Norway on Facebook. A few days later, Aftenposten published the debate post written about and by the members of Recovery; "Listen to those who have recovered." Among the 46 members who signed the post, there are 13 LP instructors / coaches, commercial players or others associated with them - all of whom have financial interests in LP being promoted. [google translate]

https://translate.google.com/transl...com/2019/09/08/en-messias-i-norsk-helsevesen/

I'm sure the affiliations have been discussed on the forum, too, but not able to look that up at the moment.

Only some additional hints on Recovery N.'s somewhat contradictory claims:

None of the first recruits to Recovery have any commercial interests. After a while, some members joined that were also offering services, for example Lightning Process (LP) courses, because they had themselves recovered using these methods.

However, it must be underscored that these members are not members because they are coaches, but in the capacity of being recovered sufferers. We do not see it as appropriate to exclude them as their recovery stories are also valid, but members with commercial interests do not sit in the Recovery board, and they do not have any particular position in Recovery.

Henrik Vogt works as a general practitioner and has never has economical conflict of interests in a specific method.

https://www.recoverynorway.org/about-us/

and

January 22nd 2017: the first member of Recovery Norway is recruited by founder Henrik Vogt (Thomas Overvik, who had been very ill with an ME/CFS diagnosis).

https://www.recoverynorway.org/about-us/milestones/

From Henrik Vogt's website:

The documentary is about a Norwegian man called Thomas, who has been given the diagnosis CFS/ME, and is lying in a dark room, non-functioning for a long time. It shows his recovery, which is striking, beautiful and important.

The method involved is called the ”Lightning Process” (LP).

For me, as a professional and academic, the important thing is not this specific method. It is what such a story, and many stories like it, can tell us about these serious health problems. Some would argue that these are mere anecdotes, that one needs controlled trials to say anything. From an epistemological (theory of knowledge) point of view, I would disagree. [...]

https://henrikvogt.com/2016/08/31/cfsme-listen-to-those-who-got-well/

 

[rvallee]

https://www.recoverynorge.org/2019/01/20/arild-berg-me-cfs/

From wikipedia:


https://en.wikipedia.org/wiki/Arild_Berg

Tried to save the page to the webarchive, don't know if it worked?
http://web.archive.org/web/20190911...coverynorge.org/2019/01/20/arild-berg-me-cfs/

(Apologies if this post is misplaced, brain-fogged and just popping in)

Edited to add from Recovery's English language version:



https://www.recoverynorway.org/2019/01/20/arild-berg-me-cfs/

ETA 2: It seems that this wasn't originally written as a testimony for Recovery Norway and isn't about LP either:


The bit about LP in fact states that it didn't help him:


ETA 3: About how Recovery Norway is linked to the Lightning Process see the post below: https://www.s4me.info/threads/a-mes...ina-e-steinkopf-2019.11210/page-2#post-200942

(Apologies again for the many editions -- I really shouldn't post when that brain-fogged.)

The Guardian article on his death is an insult. The cognitive dissonance and amorality are stunning.

 

[benji]

ETA 2: It seems that this wasn't originally written as a testimony for Recovery Norway:

That is true. There was some media attention when he died, and some people used that to promote his success story from Recovery on Twitter. I got involved, saying it is not good to promote a member of recovery’s success story at this time (even before the funeral) and also that he had had issues with health lately.
Then I got a direct message from another member of recovery, saying A B was never a member. Huh? That he did not want to be a member, and never enrolled. I argued that AB was member with proof, and he/she argued against, also with proof. He/she had better proof as he/she was member of the closed FB group for Recovery.

But, AB agreed to let them use his story, and the relatives also did. He was an inspiration for and helped make some of the other succes stories presented on the Recovery-page.
Also, he did not use LP. He used a doctor in Nothern Norway. That’s where he lived, too.

ABs story even made it to the guardian
https://www.theguardian.com/football/2019/jul/27/arild-berg-norway-bodo-glimt

 

[Kalliope]

Nina E. Steinkopf has had an email exchange with the Norwegian Public Health Institute after her blog post A Messiah in the Norwegian health system?
This has resulted in a new blog post which includes the correspondence between them with themes as Lightning Process and the Cochrane review on GET. NPHI writes among other:
- as an institute we do not have any defined view on this but seek and compile knowledge whilst requiring quality to the knowledge we obtain. It’s founded in a desire to understand and thereby contribute.

Folkehelseinstituttets kontroversielle ME-forskning
English translation: The Norwegian Public Health Institute's controversial ME-science

The Norwegian Public Health Institute's assignment is to share quality-assured information, advise on public health and prevent illness and health damage. When it comes to the illness ME, however, NPHI refers to controversial science that aggravates the situation for patients.

Tagging @Michiel Tack and @dave30th