Lightning Process study in Norway - Given Ethics Approval February 2022

Why this PR-campaign, for a study without ethical approvement?

So the regional ethics commitee(REK) has not even gotten an application yet. Actually glad to hear that.

It would be quit a downfall, if this suggested LP-study, as other proposals before it, didn’t get approved.

I’m not sure how many tries there have been from Landmark, Wyller and co. But REK have seen through bad study design before, and denied approval.

So why this PR-campaign, even before entering an application?

Trying to bias, or put pressure on REK....?
 
But even if REK looks at the method, they are primarily an organ that looks at the ethics. And if the method can harm participants or not. Yes there's something in there about the research being valid for the future, but different methods have different goals and not everyone is concerned about future. A "stepped wedge" design is a vald method even if it doesn't suit those of us that want long-term data on a control group.

I'm not sure if I get this campaign, and even if I did is REK really the place to send it first? If scientific misconduct is believed to be happening, the first place to go is the institution in question, no? And then REK. We don't even know if they will apply to REK before starting, they could even be hoping to get it approved after they begun (which is risky, but still). And I'm sure someone somewhere will argue that REK is not necessary. :wtf:

It wouldn't be the first time with an LP study. :banghead:
 
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Esther12 said:
I'm sure SMILE had ethics approval.

I agree that there's good reason to think carefully about what message is appropriate for whoever is being petitioned, and that care is taken to understand the way the researchers in the room will be able to respond to it.
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What I meant by that is they didn't apply to an ethical commitee specifically for SMILE. There was something about previously aquired approval for some other thing I don't remember.

From Virology blog:
Remarkably, Professor Crawley and her co-investigators decided that this school absence study was exempt from such a review. The paper included the creative claim that the study did not need one because it qualified as what was called “service evaluation.” In publishing the paper, BMJ Open implicitly endorsed that questionable argument.
https://www.virology.ws/2018/01/02/trial-by-error-the-school-absence-study-revisited/
 
Midnattsol said:
What I meant by that is they didn't apply to an ethical commitee specifically for SMILE. There was something about previously aquired approval for some other thing I don't remember.

From Virology blog:
Remarkably, Professor Crawley and her co-investigators decided that this school absence study was exempt from such a review. The paper included the creative claim that the study did not need one because it qualified as what was called “service evaluation.” In publishing the paper, BMJ Open implicitly endorsed that questionable argument.
https://www.virology.ws/2018/01/02/trial-by-error-the-school-absence-study-revisited/
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That was a different piece of Crawley research, not SMILE.
 
Trish said:
That's a different trial, @Midnattsol.
SMILE had ethics approval. The problem was they rolled a feasibility study into a full trial with outcome switching which should invalidate the trial.
https://www.s4me.info/threads/trial-by-error-a-letter-to-archives-of-disease-in-childhood.2171/
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There are so many ethical and methodological violations that it's hard to keep track of. Is it the one that was super shady or the other one that was extra unethical?

But sure, let that person hold statutory authority over vulnerable children in a very controlled setting that has long been devoid of accountability and filled with bizarre exemptions from normal rules.
 
rvallee said:
There are so many ethical and methodological violations that it's hard to keep track of. Is it the one that was super shady or the other one that was extra unethical?
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I'm sure a spreadsheet of Professor Crawley's papers and associated methodological/ethical violations, and whether they have yet been corrected officially, would be useful to future generations of researchers.
 
Esther12 said:
That was a different piece of Crawley research, not SMILE.
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Trish said:
That's a different trial, @Midnattsol.
SMILE had ethics approval. The problem was they rolled a feasibility study into a full trial with outcome switching which should invalidate the trial.
https://www.s4me.info/threads/trial-by-error-a-letter-to-archives-of-disease-in-childhood.2171/
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Thanks for correcting me, I'll just quote rvallee :)
rvallee said:
There are so many ethical and methodological violations that it's hard to keep track of. Is it the one that was super shady or the other one that was extra unethical?

But sure, let that person hold statutory authority over vulnerable children in a very controlled setting that has long been devoid of accountability and filled with bizarre exemptions from normal rules.
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Article about the study in the newspaper Dagsavisen Fremtiden.

Assistent general secretary in the Norwegian ME Association Trude Schei says: If it really was that simple, that a small seminar could change everything - that you can think yourself well, then ME wouldn't have existed.

Previous general secretary in the Norwegian ME Association Anette Gilje tells about a survey they did where half of the responders who had tried LP, reported of deterioration afterwards. She says: I can't fathom that research on a quack treatment as this, on severely sick people, receives financial public report.

LP coach Live Landmark didn't wish to comment, as she in this connection is a doctoral research fellow.
Professor in psychology Leif Edward Ottesen Kennair will be the supervisor of this research project and promise to do everything he can for the treatment effect to be assessed in an independent, fair and scientific way. He has no qualms regarding Landmark being both a research fellow and LP coach.

Prof. Per Magnus from the Norwegian Directorate of Public Health will also be advisor in the project and says in an email that in this connection Landmark is a researcher and that she runs a risk if the project won't show any effect.

Dagsavisen Fremtiden: - Hvis det hadde vært så enkelt at du kan tenke deg frisk, så ville ikke ME eksistert
google translation: If it was as simple that you could think yourself to recovery, then ME wouldn't have existed
 
Kalliope said:
LP coach Live Landmark didn't wish to comment, as she in this connection is a doctoral research fellow.
Professor in psychology Leif Edward Ottesen Kennair will be the supervisor of this research project and promise to do everything he can for the treatment effect to be assessed in an independent, fair and scientific way. He has no qualms regarding Landmark being both a research fellow and LP coach.
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The study will be tremendously independent, fair and scientific. Bigly! It will be the greatest study you've ever seen! :rolleyes:
 
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I have never had much success with shouting at things.

Glaring at things, whilst finger tapping, is however a tried, tested, and often successful method of achieving the desired results.

It works with virtually all electronics, as well as washing machines.

It does not work on fridges. (ETA - or cats)

It sometimes needs the additional treatment approach of picking the item up and dropping it an inch or so.

But shouting - that doesn't really work on anything.
 
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Kalliope said:
Assistent general secretary in the Norwegian ME Association Trude Schei says: If it really was that simple, that a small seminar could change everything - that you can think yourself well, then ME wouldn't have existed.
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Exactly. Trying to resist the illness, ignoring it, and doubting it is normal and everyone does it at some point. If that was all it took to get better most people would recover on their own in little time.

The BPS people, thinking themselves smart and patients very unintelligent, say "have you tried to just not let symptoms interfere with your life?" Then they are thrilled with their trivial suggestion, fully expecting it to do miracles.
 
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Kalliope said:
promise to do everything he can for the treatment effect to be assessed in an independent, fair and scientific way
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That would actually be the first. Of hundreds. There are decades of precedent showing these people are completely incapable of that, that every time they face outcomes they don't like they simply lie and cheat, and that's when they don't bias things so heavily that it's basically a formality.

I would say don't insult our intelligence but that's basically the starting point of pretending this infantile pseudoscience garbage is serious so whatever.
 
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