Lightning Process study in Norway - Given Ethics Approval February 2022

I may want to take on just a minor point from the radio-programme, just need to confirm that over 30% of the participants in the GET arm of PACE did indeed not do the walking test after a year. That is right, isnt it? It can be documented, if asked?
EDIT, I found it.
 
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Kalliope said:
Wyller and Live Landmark seems to turn this on the head; if someone claims adverse effects from Lightning Process, it means there IS an impact.
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Yes, through sophistry. The sort of thing that any health authority should see right through.

They claim as long as the patient uses the technique and follows the practitioner's advice then there is no harm or downside. That assumes that their pre treatment assessments is 100% accurate at weeding out any applicants which might be harmed. In one short phone call?

100% effectiveness simply isn't possible. Even the safest of drugs that have undergone rigorous testing and been in use for years don't claim that. So it's not possible that their pre therapy screening is 100% effective either.

Even if the process was very good, people are people and have off days and make mistakes. Unless the practitioners are claiming that, like the pope, they are infallible?

The wilder the claim the more sceptical people should be.
 
Nina E. Steinkopf has written a blog post about the media coverage of the trial. She also writes that the trial has not yet been approved by the Regional Committees for Medical and Health Research Ethics.

I have been in contact with Regional Committees for Medical and Health Research Ethics (REK) at NTNU in Trondheim today and asked if the project is approved. They respond that:
"We have not received any application for this study yet. It looks like the study is in the planning phase and has not started. The study must be approved by us before start-up so I expect there will be an application for us in the near future. ”

Omstridt LP-studie er ikke godkjent enda
google translation: Contested LP study is not approved yet
 
Kalliope said:
The project description states, among other things. that "there seems to be a" social contagion "of the diagnosis and incidence may be higher in a small part of the municipality than in the municipality as a whole. This may indicate that there are more factors than the purely medical ones at play. "
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A clear suggestion that there is mass hysteria

Of course maybe the higher incidence is down to purely medical reasons or reasons that have nothing to do with hysteria. Like these places having a few doctors that are actually diagnosing the illness.
 
Kalliope said:
Nina E. Steinkopf has written a blog post about the media coverage of the trial. She also writes that the trial has not yet been approved by the Regional Committees for Medical and Health Research Ethics.

I have been in contact with Regional Committees for Medical and Health Research Ethics (REK) at NTNU in Trondheim today and asked if the project is approved. They respond that:
"We have not received any application for this study yet. It looks like the study is in the planning phase and has not started. The study must be approved by us before start-up so I expect there will be an application for us in the near future. ”

Omstridt LP-studie er ikke godkjent enda
google translation: Contested LP study is not approved yet
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Google translate page didn't work for me there, but here's the version got from posting it in manually:

Contested LP study is not approved yet
April 30, 2020 · at melivet

For two days in a row, NRK P2 / Ekko has had information about the controversial, planned study in which ME sufferers will be treated with the alternative method Lightning Process:

"Now, large sums will be invested in researching a treatment for ME sufferers".

I have been in contact with Regional Committees for Medical and Health Research Ethics (REK) at NTNU in Trondheim today and asked if the project is approved. They respond that:

"We have not received any application for this study yet. It looks like the study is in the planning phase and has not started. The study must be approved by us before start-up so I expect there will be an application for us in the near future. ”

The REK's website states that the next scheduled meetings are May 5, June 9, August 18, September 22, November 3 and December 8. The treatment time is approx. three weeks after the committee has considered the application.

Adverse effects

The radio broadcast stated that the strict Canadian criteria should be used in selecting study participants. Prof. Vegard B. B. Wyller, who is a project co-worker in the study, said that the study must have the same strict research method requirements as in drug research.

General Secretary Olav Osland of the Norwegian ME Association was also interviewed. He expressed concern that public institutions are investigating alternative treatment that has been shown to harm patients. To that Wyller replied that:

- In the studies we know of similar techniques, no harmful effects have been detected at all. The research project is there to map this out - well, right ?! The benefits we think are far greater than the disadvantages - we think it is ethically justifiable to do so.

Wyller has long recommended that ME-sick children be treated with LP. Read more in NRK: 13-year-old attempted suicide after ME course

The Research Council granted up to NOK. NOK 1,767,000 for the project on April 3. The project manager is Professor of Psychology, Leif Edward Ottesen Kennair. 20 municipalities in Viken are invited to participate. Currently, it is known that 2 municipalities have accepted yes; Lørenskog and Aurskog-Høland.

The project description states, among other things. that "there seems to be a" social contagion "of the diagnosis and incidence may be higher in a small part of the municipality than in the municipality as a whole. This may indicate that there are more factors than the purely medical ones at play. "

Read more about 17 patient experiences here: Lightning Process is harmful to ME patients

Posted by Nina E. Steinkopf
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Kalliope said:
Those who want to take LP should then be divided into two groups, with one group on the waiting list and the other taking LP. Those on the waiting list are the control group - and should also take the LP. Then you can get a placebo effect in the group that gets treatment (which is the whole point of LP) but also the nocebo effect in the group that is waiting - because they will think that they are waiting for something that they think has an effect .
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A wait list is not a suitable control group. It is not controlling for any reporting (placobo) biases and effects from the treatment (telling patients to ignore symptoms). All it does is compare reporting from those told to wait for treatment (who may also have an incentive to downplay any improvement) and those told they will get better if they ignore there symptoms.
 
Marky said:
Its impossible to do research on LP due to the very fact that the method itself demands of the participant that they ignore symptoms, hence they cant trustfully report their actual function.

And subjective outcomes is already a huge problem in ME-research due to all the possible bias

Add this to the fact that by design comparable long term follow up here is impossible, and we will surely get some false conclusion that LP works. Im willing to bet on it.
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I wonder if they really claim this is a cure then they could use a measure of patients getting back to a normal life (able to work full time and do social activities). A protocol which just counted the number of patients who after a year were back to a normal life vs a observation group to see how many of them got back to normal may seem okish?
 
It's hard to know what to make of this.

On the one hand, we know that this therapy has been around for, what, 20 years and that thousands of ME patients have spent money pursuing it. Many new people get roped into doing it each year and we've heard reports of patients being pressured into doing it by their families or even doctors. Given that it's lingered around for so long and the never-ending controversy surrounding it, I would welcome a well-designed trial that could settle this question once and for all.

But my suspicion is that the government and the commercial interests (both of which benefit from showing that a three day workshop can cure a potentially lifelong disability) will design the study in such a way that will enable 'positive' results to emerge due to vague outcome measures like PACE. If the outcome measures were "Are you back to full-time employment? Yes/No" and CPET before and after, then I would be in favour of doing the study. No bullshit questionnaires or step counters that can be rigged by the honeymoon period.
 
Sid said:
It's hard to know what to make of this.

On the one hand, we know that this therapy has been around for, what, 20 years and that thousands of ME patients have spent money pursuing it. Many new people get roped into doing it each year and we've heard reports of patients being pressured into doing it by their families or even doctors. Given that it's lingered around for so long and the never-ending controversy surrounding it, I would welcome a well-designed trial that could settle this question once and for all.

But my suspicion is that the government and the commercial interests (both of which benefit from showing that a three day workshop can cure a potentially lifelong disability) will design the study in such a way that will enable 'positive' results to emerge due to vague outcome measures like PACE. If the outcome measures were "Are you back to full-time employment? Yes/No" and CPET before and after, then I would be in favour of doing the study. No bullshit questionnaires or step counters that can be rigged by the honeymoon period.
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Agreed. My suspicion is that the main goal here is to have something with a positive result in the academic literature for future sales pitch.
 
Phil Parker starting to 'cash in' on this and CV already........
Sale!
packages-lp-cfs-and-immune.-png.png

Part 1 of the Lightning Process for CFS/ME, Post Viral Fatigue & Fatigue – plus Immune Download
£24.98 £19.99


Combining the first steps of the Lightning Process with a separate download to boost your immune system, this is the perfect package if you’d like to find out more about how the Lightning Process can help with CFS/ME, Post Viral Fatigue & Fatigue. The Part 1 audio download will introduce you to the core concepts of the Lightning Process, the science behind it and help prepare you for taking the seminar itself.
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trading standards?
 
strategist said:
A clear suggestion that there is mass hysteria

Of course maybe the higher incidence is down to purely medical reasons or reasons that have nothing to do with hysteria. Like these places having a few doctors that are actually diagnosing the illness.
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The inconsistency among these people are truly amazing. They spin same things in every possible direction, always blaming patients.

So what does “social contagion” imply? A logical take, would be that the numbers aren’t real, that patients make up a diagnose all by themself. How can that be?Who is responsible for making diagnosis? It makes no sense.

A couple of years ago Landmark made som remarks in a Swedish newspaper, kind of warning Sweden that there was some kind of epidemic in Norway. That was not the case in Sweden and Denmark, but it could be if they didn’t watch out? Can’t remember the exact numbers that were juggled without any modifications whatsoever, but they were out of proportions, truly not reflecting the reality.

Hmmm. Why, if the numbers were true, could it be like that? Should be no particular reason for extreme differences among “equal” countries. But as always, there was no attempt to clarify anything.

So let’s try. It may be that you actually catch more real cases in Norway, it might just be that the knowledge is a little better among firstline physicians. If so, that’s good. But still, this don’t make up for the fact that knowledge in general is way below par. So, if you catch some more cases, it might just be that the general lack of knowledge includes a whole lot of cases that don’t belong in the category. Knowledge all over, including the so-called special ward, varies greatly and play a big part.

At last; if it really was an epidemic, that these numbers were correct, how in the world could you blame it on some kind of social spread? That is just absurd. Who’s supposed to diagnose patients correctly if not physicians?
 
When I worked alongside salespeople there was a technique called FUD. I utterly loathed working with anyone who in any way endorsed it.

Fear Uncertainty and Dismay.

Scare people into thing there's this tide of demand about to sweep in.

No one knows how bad it will possibly be, but you need to do something to put a stop to it. These guys aren't actually sick as such.....

They'll hog all your health service and take up a lot of resources in terms of benefits and social care ....

The solution is.....
 
Peter said:
The inconsistency among these people are truly amazing. They spin same things in every possible direction, always blaming patients.

So what does “social contagion” imply? A logical take, would be that the numbers aren’t real, that patients make up a diagnose all by themself. How can that be?Who is responsible for making diagnosis? It makes no sense.

A couple of years ago Landmark made som remarks in a Swedish newspaper, kind of warning Sweden that there was some kind of epidemic in Norway. That was not the case in Sweden and Denmark, but it could be if they didn’t watch out? Can’t remember the exact numbers that were juggled without any modifications whatsoever, but they were out of proportions, truly not reflecting the reality.

Hmmm. Why, if the numbers were true, could it be like that? Should be no particular reason for extreme differences among “equal” countries. But as always, there was no attempt to clarify anything.

So let’s try. It may be that you actually catch more real cases in Norway, it might just be that the knowledge is a little better among firstline physicians. If so, that’s good. But still, this don’t make up for the fact that knowledge in general is way below par. So, if you catch some more cases, it might just be that the general lack of knowledge includes a whole lot of cases that don’t belong in the category. Knowledge all over, including the so-called special ward, varies greatly and play a big part.

At last; if it really was an epidemic, that these numbers were correct, how in the world could you blame it on some kind of social spread? That is just absurd. Who’s supposed to diagnose patients correctly if not physicians?
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Now you are forgetting that the pesky patients go doctor shopping if they don't get the diagnosis they want (or worse, get told they aren't sick!) :whistle:
 
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