Lightning Process study in Norway - Given Ethics Approval February 2022

Midnattsol said:
Some of the replies Forsmo gave made me unsure if she had read the complaints at all,
Kielland told her she was wrong on more than one account (we have data of people worsening from LP, patients have been pressured by NAV to undergo treatment they (and their primary care team!) know will make them worse) and everything Kielland and Agledahl brought up has been part of the complaints and I can't understand how NEM have had two meetings to discuss this and Forsmo still gets it wrong when she explains what the issue is (from her point of view among other things the issue is that the ME Association is against research on LP in general and have a fixed view of what the illness is).
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Is there a recording of this that youtube could automatically transcribe and translate?
 
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Midnattsol said:
There is a clip of Kielland's part on the Tjenesten og MEg facebook page, but it is uploaded to fb not youtube.
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Thanks. Does facebook do things like transcriptions and translations? If not, could it be worth asking them to upload on youtube? If they have the file lying around that could be super easy for them.
 
Sly Saint said:
I haven't been following this in detail but surely one of the biggest red flags is that the LP practitioners tell people that for it to work you must tell people that you're cured.
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And that their evidence that it works is... people saying it works. A tiny %. Most of whom now work as, I guess they call them coaches? Defining "working" as saying that it works, of course, since how else are you going to assess such major improvements? If they say so, what more do you want, people?!

How do we know that Theranos' technology works? Why if we can't take Holmes saying so and some comments from some unnamed engineers working for the company, what, we can't just take people at their words?

And, really, let me rage a bit, but if we can't trust the good executives at VW telling us that their diesel engines are not only more efficient but also have good emissions quality, who can we even trust anymore? Surely we can't start doubting the good folks at tobacco companies who were paid to say that their product was smooth as silk coming down smokers' throats? You can tell it's healthy by how much lung mucus people are cough hacking.

Honestly on the medium term this will backfire, but it will be very stupid for a while. The reason stuff like CBT and GET were somewhat accepted is because they're so generic. LP is built out of NLP and osteopathy, which aren't considered scientific. I don't know whatever is scientific about CBT and exercise, but somehow that's accepted. Somehow.
 
Looks like the person defending the LP study in that clip (Siri Forsmo) has some prior comments on ME and Live Landmark:

Not being able to speak the language limits my ability to really comment.

I wish I could speak the language and keep up as Norway seems to be really keen to try and take over from the UK on CFS dodgyness.
 
Twitter translate —

And now a number of screen shots appear from previous proposals from Siri Fosmo which show that she has very low thoughts about ME patients, and has also previously portrayed the patient group in a negative way. And that she obviously has a personal knowledge of just the person behind this study. Quite typical #MEpasienterfaring in other words. Can it end soon?

Siri Forsmo is a member of NEM and has approved the LP study. The statement from 2012 weakens confidence in her integrity.

@ LiveLandmark Who has catastrophic thoughts, apart from the journalist? And maybe the ME Association
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This whole debacle seems to bring attention to LP from people who aren't involved in the issue. I've been seeing comments over the last few days from people saying this all looks corrupt and medical authorities are really screwing the pooch here, especially with public money going to this and how it's inexplicably pushed from the top by medical authorities, who are clearly abusing their authority with this. Potent Streisand effect. And seeing the obvious bad faith from people involved like the comment above this one, really doesn't make anyone involved look good. They all seem to be bullies and in an alternative universe where medicine is accountable, a lot of people would lose their job and career over this, if not prosecuted.

Mostly there seems to be serious issues with how medical authorities are working around issues with alternative medicine. I can't read everything, only comments, but it flows from the decision of the alternative medicine body a few years ago labelling LP as alternative medicine, how it would prevent such a project from being considered legitimate, and it appears that the bureaucratic sleight-of-hands is being done by classifying LP as not medical, I think it's being categorized as psychoeducation, which is not really a thing, even though it's loosely being applied as a medical treatment to a medical condition. This really all looks incredibly corrupt and abuse of power.

Especially given the bizarre framing from some of the people behind this, how they say it's important to do research and understand the causes and treatments of the condition. Which makes no sense at all, especially given the insistence that it's not a medical treatment, alternative or not, but it's still relevant medical research, or whatever. It really all looks rotten in, uh, Norway, I guess, for a change.
The LP instructors work hard in secret to remove all critical mention of themselves. They have previously also tried to pressure HDir to no longer define what they do as alternative treatment. As well as trying to pressure Tjomlid to remove a critical analysis of LP.
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There's a lot more to it but I can only read glimpses with most of the information being in scans of documents.
 
rvallee said:
This whole debacle seems to bring attention to LP from people who aren't involved in the issue. I've been seeing comments over the last few days from people saying this all looks corrupt and medical authorities are really screwing the pooch here, especially with public money going to this and how it's inexplicably pushed from the top by medical authorities, who are clearly abusing their authority with this. Potent Streisand effect. And seeing the obvious bad faith from people involved like the comment above this one, really doesn't make anyone involved look good. They all seem to be bullies and in an alternative universe where medicine is accountable, a lot of people would lose their job and career over this, if not prosecuted.

Mostly there seems to be serious issues with how medical authorities are working around issues with alternative medicine. I can't read everything, only comments, but it flows from the decision of the alternative medicine body a few years ago labelling LP as alternative medicine, how it would prevent such a project from being considered legitimate, and it appears that the bureaucratic sleight-of-hands is being done by classifying LP as not medical, I think it's being categorized as psychoeducation, which is not really a thing, even though it's loosely being applied as a medical treatment to a medical condition. This really all looks incredibly corrupt and abuse of power.

Especially given the bizarre framing from some of the people behind this, how they say it's important to do research and understand the causes and treatments of the condition. Which makes no sense at all, especially given the insistence that it's not a medical treatment, alternative or not, but it's still relevant medical research, or whatever. It really all looks rotten in, uh, Norway, I guess, for a change.



There's a lot more to it but I can only read glimpses with most of the information being in scans of documents.
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The story behind this is that the LP practicioners organization in Norway got someone at the Minsitry of Health to declare that LP was not "alternative medicine". After this the LP organisation then went to our public body in charge of research on alternative therapies (NAFKAM) and asked them to remove LP from their site as LP is "not alternative therapy". The ministry of health have since retracted their statement, and NAFKAM anyway defined LP as alternative therapy and refused to remove their writing on LP (a few years back they sent a concern to the ministry of health, as they do when they get reports of harm from a therapy, and they restated this warning in 2020). This is the letter where NAFKAM tells the LP org. they define LP as alternative therapy and thus write about it as is their job.

It's also a nice touch that they refer to academic freedom, an argument the LP proponents have used a lot up here :p

Signe Flottorp from our national institute of health has in the media been critical of NAFKAM for their verdict around LP.

NAFKAM is located at UiT, the same university the leader of NEM (who was against giving ethical approval to the LP study). I've had a few gripes with UiT as a disabled student, but this makes me happy :)
 
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I have a feeling that this LP study could go badly due to recruitment process. If I understood right the patients will be referred by the government agency responsible for welfare payments to sick people. These patients might feel like they have no choice but go along with the process, including the step where participants are asked if they are truly motivated, which normally should ensure that nobody who openly expresses doubts would be recruited. I suspect these kind of believers are not very common and that means the majority of the study participants could end up being people who felt like they're forced to attend and pretend everything is OK. The pretense could stop very quickly once the participants feel they've done what was expected, and then they might turn against the study. Maybe at followup the outcomes will be especially poor.

The people involved are setting themselves up for a PR disaster.
 
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strategist said:
I have a feeling that this LP study could go badly due to recruitment process. If I understood right the patients will be referred by the government agency responsible for welfare payments to sick people. These patients might feel like they have no choice but go along with the process, including the step where participants are asked if they are truly motivated, which normally should ensure that nobody who openly expresses doubts would be recruited. I suspect these kind of believers are not very common and that means the majority of the study participants could end up being people who felt like they're forced to attend and pretend everything is OK. The pretense could stop very quickly once the participants feel they've done what was expected and then turn against the study. Maybe at followup the outcomes will be especially poor.

The people involved are setting themselves up for a PR disaster.
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True. But it might be difficult to tell NAV (welfare) that you haven't improved when improvement according to the LP is dependent on your motivation. Then the participants are telling NAV they are not motivated to get better > end of disability benefits (which of course also happens if they get well...).
 
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rvallee said:


There's a lot more to it but I can only read glimpses with most of the information being in scans of documents.
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I've tried to get, via google, a translation of that document. It's probably a bit rough, but here it is:

UiT Norwegian Arctic University The Faculty of Health Sciences Your ref .: email-18. January 2022

Our ref .: 2022/1365 Date: 09.02.2022 Norwegian Association of Lightning Process instructors v / Kristin Blaker, leader

Recommendation for removal of mention of Lightning Process

Reference is made to your e-mail of 18 January 2022 with a recommendation to remove mention of Lightning Process from NAFKAM's website.

In its assignment from the Norwegian Directorate of Health, the National Research Center for Complementary and Alternative Medicine (NAFKAM) is responsible for researching and offering the population knowledge-based and objective information about alternative treatment. This means that NAFKAM must decide what is considered alternative treatment in accordance with the Alternative Treatment Act $ 2, third paragraph.

The purpose of NAFKAM's website is to contribute to knowledge-based health choices and increased patient safety. The website presents published research on the safety and efficacy of widespread alternative therapies, health products, diet and lifestyle programs and other types of self-help techniques based on articles from reputable and independent research databases. More information about this work can be found here: Quality assurance | NAFKAM.

Universities and colleges shall promote and protect academic freedom, cf. the Universities and University Colleges Act § 15. This means that we have a responsibility to ensure that teaching, research and academic and artistic development work maintain a high academic level, and are exercised in accordance with recognized scientific, artistic, pedagogical and ethical principles. Researchers also have the right to choose the subject and method for their research and development work, and the university has a duty to ensure transparency about results from such work.

NAFKAM therefore has both the right and the duty to publish such results. Academic freedom means freedom not to have to act contrary to one's own professional beliefs, and professional employees have the right to produce and disseminate knowledge in line with personal professional beliefs. This freedom also includes the choice of how knowledge is to be disseminated. Furthermore, researchers have freedom of sources, some of which means that they themselves choose research methods, and researchers have the freedom to use the methods they believe give the most accurate picture of reality.

For Lightning Process, there is peer-reviewed original research that documents health-related uses and purposes. Following the assessment of available research, the Lightning Process is considered to be “health-related treatment provided outside the health and care services, and will therefore be covered by ABL $ 2, third paragraph.

Their recommendation to remove the article is considered an attempt to prevent the performance of NAFKAM's social mission and to limit academic freedom, something we as a university neither have the opportunity to, nor want to comply with.

Sincerely

Torkjel M. Sandanger Head of Department
Miek Jong Leather NAFKAM

torkjel.sandanger@uit.no 77 64 54 04 miek.jong@uit.no 77645276

The document is electronically approved and does not require a signature Copy: The Norwegian Directorate of Health Publications about Lightning Process in Pubmed, as of 9.2.22 PO Box 6050 Langnes, N-9037 Tromsø / 77 64 40 00 / postmottak@uit.no / uit.no / org.nr. 970 422 528
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So, attempting to prevent LP from being seen, by some vested interests, as a 'health related treatment'...is a freedom of speech issue? Where only the people making money out of it, causing harm to patients, have the right to freedom of speech?
 
I've seen a lot written about this recently and although I'm tempted to dismiss it as there being a missing detail somewhere, it wouldn't be especially surprising. It's one of those things where if true it should lead to immediate action, and since it's not happening it seems reasonable to think it's a misunderstanding, but that would only apply to normal circumstances, it's essentially standard for BPS quackery to use shady tactics like this.

The gist of what I understand is that the PhD position Landmark is using to market her product (let's be honest here about what it is) is only open to people who meet specific conditions for employment in the public sector, which she did not meet. A position was created for her, despite that position not being her job, and it didn't go back far enough anyway. If accurate, it's as clear-cut as the zero-tolerance policy that several of Crawley's papers violated, but as we know in BPSland, rules are just words written for other people, especially when the people who enforce the rules want it to happen.

It wouldn't even be the most corrupt aspect of all this, and it would be pretty black-and-white violation of the terms, but so are many other violations happening around this in general that it's just one more to the pile. This seems to be about working around safeguards that exist explicitly to guard against pseudoscience, and how RN are trying to redefine their program as not alternative medicine, on grounds of not being medical, it's psychological education, or whatever.
So not only does the research project violate central principles in the Declaration of Helsinki, guidelines for medical ethics committees, and group competence considerations, it also violates the Research Council's own rules? I thought the Olsen gang had clearly done better.
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In more details:
"Cf. the Research Council, it is a requirement that "The candidate must be permanently employed in the public sector, at the latest from the time of application." The Research Council received the application on 3 March 2020 and informed the project that the application had been granted on 8 April 2020. Landmark was employed in a 100% temporary position on 15 August 2020. In other words, Landmark was not employed by Lørenskog municipality at the time of application"
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