Lightning Process study in Norway - Given Ethics Approval February 2022

There are no objective criteria for ME, so there is no possibility of requiring objective outcomes.
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Horseshit.

If the entire measurable benefit of their therapy is a modest and temporary shift in questionnaire scoring behaviour, then they got nothing, and they know it.

There must be broader tangible sustainable real-world benefits, like increased physical, cognitive, social, and economic activity. Don't tell me they are not measurable, relevant, and primary outcomes. Indeed, improving those outcomes is pretty much the end game for all non-terminal conditions.

Has Kennair ever claimed that his therapy can improve any of those outcomes? If so then he is a hypocrite. If not then he has nothing to offer us or the world.
Snow Leopard said:
Which conveniently eliminates the possibility to collect long term followup comparisons.
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Just one of the methodological perversions they learned from the PACE experience: Do not use robust long-term follow-up.
 
Snow Leopard said:
Leif Kennair
- That's a terrible exaggeration. It's not about thinking positively. There are no objective criteria for ME, so there is no possibility of requiring objective outcomes.
No matter how many times they say this, it is simply not true. It is so frustrating that they keep insisting on this nonsense.
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Unbelievable. Yea if what they are selling doesn't lead to improvement, measured by objective outcomes, then why give them the funding? As @Snow Leopard has said - why not give it to the patients? At least that way you'd cut out the useless middleman (Leif Kennair).
 
FMMM1 said:
Unbelievable. Yea if what they are selling doesn't lead to improvement, measured by objective outcomes, then why give them the funding? As @Snow Leopard has said - why not give it to the patients? At least that way you'd cut out the useless middleman (Leif Kennair).
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The funding for this project is part of a program in Norway to increase competence found in state institutions in Norway(I don't think state is the right word), such as hospitals, schools etc. It is a "first come first serve" thing, where funding is given as long as you pass the inclusion criteria (employee at such an institution, that you have a supervisor at a university and can be admitted to the institution's PhD program and more I don't remember).
 
LP surely had its 15 minutes of fame. Everything is probably said, and people are fed up. But more than ever, 2021 shows us that some things are moving in circles and progress far away. Many people have an interest in status quo no matter if it ruins patients health totally.

Would like to focus more on the totally irrelevant model for LP. Not sure of what kind of language they preach these days, but previously and with the “cure” rhetorics, LP clearly been sold in as dealing with cause. It is truly amazing that the STOP, “you are doing ME”, so easy just seems to slip away of interest and concern. If someone bothered to look at the model, at data, experiences and the literature, this mess should have stopped a long time ago. It is unbelievable and just sad, that it has made it this far. Amazing what massive lobbyism with great undocumented promises, combined with gross professional negligence, can result in, here with the National institute of public health as primus motor.
 
Invisible Woman said:
Wait. What?

Did this guy have a straight face when he was doing that interview?

Once again I'm struggling here to believe someone can genuinely have a blind spot the size of a large planet.

If Kennair genuinely can't see the problem then he really shouldn't be involved in patient research.

If he can see the problem....then, he still shouldn't be let loose.

The good thing is he can't deny he has expressed either viewpoint.

The third option is genuine discrimination against pwME.
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Good old Dunning-Kruger.

Edit: correction, it's a special case of Mass Dunning-Kruger, not the good old singular type.
 
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Snow Leopard said:
Which conveniently eliminates the possibility to collect long term followup comparisons.
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Followed by the usual: "no difference in outcome between treatment arms but in-group benefits in secondary measures of blah-blah-blah". I have no idea how such laughable nonsense came to be standard but the fact that hardly anyone sees any problems with it is very much the underlying problem we are facing here. A license to do as they please is just about the weirdest possible thing to do in this context.
 
Edit to insert quote-
Correct. The plan was to have a waiting list control group who would receive the same intervention ten weeks later than the first group.
Which conveniently eliminates the possibility to collect long term followup comparisons.
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It also conveniently introduces another lot of bias because when most people join a trial they do it because they'd like to try the treatment.

So if they say they improved on their own, even a little bit, it might reduce their chances of getting a go at the treatment.

So the ones on LP are biased by virtue of the treatment itself to answer positively and the one's in the (laughably called) control arm are biased to answer negatively thus amplifying the difference between the two groups.
 
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rvallee said:
Good old Dunning-Kruger.
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I think you're being over generous there by putting the kindest possible interpretation on it.

Even if this person has over estimated his ability, the people around him should have spotted the problem by now.

Unless he has somehow managed to hold them all in some kind of thrall & persuaded them his work is a thing of beauty. Maybe that's led him to believe he can get anyone to believe anything he comes out with, however self contradictory & that's where the Dunning Kruger effect comes in.
 
There's another thing - please forgive the slight aside.

In the ME world, at least this corner of it, while most of us have the shared objectives of research leading to effective treatment we don't always agree on the finer details.

So we discuss them. Without name calling and strawman arguments we disagree with each other and explain why.

How come patients, mere riffraff in the scheme of things, can manage to disagree and discuss these things in a productive way and yet these people whose jobs rely on having the ability to do the same don't seem to manage it.

We often mention that many patients here have a better grasp if science and methodology than many so called experts, but we also seem to be better at working together to improve each other's understanding.
 
Invisible Woman said:
I think you're being over generous there by putting the kindest possible interpretation on it.

Even if this person has over estimated his ability, the people around him should have spotted the problem by now.

Unless he has somehow managed to hold them all in some kind of thrall & persuaded them his work is a thing of beauty. Maybe that's led him to believe he can get anyone to believe anything he comes out with, however self contradictory & that's where the Dunning Kruger effect comes in.
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You're right, this isn't good old D-K, it's a special case of Mass Dunning-Kruger. Which ironically manifests through socially spread beliefs about illness. So Mass Projected Dunning-Kruger?
 
Invisible Woman said:
There's another thing - please forgive the slight aside.

In the ME world, at least this corner of it, while most of us have the shared objectives of research leading to effective treatment we don't always agree on the finer details.

So we discuss them. Without name calling and strawman arguments we disagree with each other and explain why.

How come patients, mere riffraff in the scheme of things, can manage to disagree and discuss these things in a productive way and yet these people whose jobs rely on having the ability to do the same don't seem to manage it.

We often mention that many patients here have a better grasp if science and methodology than many so called experts, but we also seem to be better at working together to improve each other's understanding.
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That's something I noticed that is actually one of the biggest red flags. Typically, scientists argue. A lot. And disagree with each other. A LOT. It can get bitter, arguments on substance and the like. And the disagreements are substantial, they aren't merely preferences or points of view.

In the field of clinical psychology? There is virtually no disagreement on substance. Only style. Everything is to be praised. Everyone is doing useful work all the time. Every little piece of work gets praise, applaud and congratulations. It's all a big friendly mutual admiration society and this is also true in peer review. There is virtually no disagreement or criticism on substance, only style. Where there is such criticism, it's always from people outside the field. The criticism is always welcomed but ignored, thanked for it being pointed out but no thanks, they just agree to disagree, the critic simply doesn't understand the problem, only initiates do.

Which is about as problematic as there being no disagreement ever between judges and prosecutors in a judicial system. It simply can't happen, there is supposed to be substantial disagreement, it's a cornerstone of real science. So where there is no disagreement or criticism of substance within a profession, it can be argued that it is simply not based on science.
 
Midnattsol said:
The funding for this project is part of a program in Norway to increase competence found in state institutions in Norway(I don't think state is the right word), such as hospitals, schools etc. It is a "first come first serve" thing, where funding is given as long as you pass the inclusion criteria (employee at such an institution, that you have a supervisor at a university and can be admitted to the institution's PhD program and more I don't remember).
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That doesn't seem reassuring - I mean where is test of public benefit [people with ME/CFS] for public money?
 
A local department of a small political party (way on the left side) has written about Lightning Process as an example of a health service they DON'T want.

They refer to "line-of-work"/arbeidslinja which is the word used when arguing for keeping health benefits low in order to add a financial incentive to not quitting work if you get sick.

Quote:
There is no doubt that the idea of a 3-day quick fix of sick people, and then all of a sudden they are back at work is an appealing thought to many supporters of the line of work, but the reality is that if something sounds too good to be true then that's exactly it.

Instead of being dazzled by nice words and marketing strategies, we should see what is happening in the LP course's birthplace at the moment.

During the revision of the new NICE guidelines, they have clearly stated that the Lightning Process should not be recommended as treatment for patients with ME / CFS.

This is an example we should take note of.

Sick people, people who need help, support and treatment should receive knowledge-based, good treatment based on solid research conducted by professionals with relevant, health professional education.


Rødt: Lightning Process - en "helsetjeneste" vi IKKE ønsker oss
google translation: Lightning Process - a "health service" we do NOT want
 
Midnattsol said:
Henrik Vogt has been interview by Khrono:

Frykter etisk avgjørelse har satt stopper for visse typer forskning
Fearing ethical decision has put a stop to certain types of research

These important people involved in research does not have time to write similar complaints about biomedical research, says the guy who was part of a group that asked REK to pull their ethical approval of a study at Haukeland.
Also Recovery Norway is again a ME-patient organization.
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Just adding a couple of quotes. I thought he'd keep his head low this time, as he tried to stop the CycloME-study, so I don't understand why he's complaining. But I guess there are different rules for different people.

quotes from article:

- Not everyone has the same amount of time to sit and complain about researchers they do not like. In practice, this decision sets a precedent for making it more difficult to conduct research on this side of the field. It is problematic in terms of patients' interests and the integrity of research in the area, which is already under pressure, he says.

...
- Just google Esther Crawley - the only one who has done a randomized study on the Lightning Process in the world. See how she is attacked and how her research is picked apart. This field is exposed to massive pressure, which is different from what researchers are otherwise exposed to, he says.
 
Kalliope said:
Just adding a couple of quotes. I thought he'd keep his head low this time, as he tried to stop the CycloME-study, so I don't understand why he's complaining. But I guess there are different rules for different people.

quotes from article:

- Not everyone has the same amount of time to sit and complain about researchers they do not like. In practice, this decision sets a precedent for making it more difficult to conduct research on this side of the field. It is problematic in terms of patients' interests and the integrity of research in the area, which is already under pressure, he says.

...
- Just google Esther Crawley - the only one who has done a randomized study on the Lightning Process in the world. See how she is attacked and how her research is picked apart. This field is exposed to massive pressure, which is different from what researchers are otherwise exposed to, he says.
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Amazing lack of self-awareness and inability to see consistency for what it is. This is truly a religion, or a religious-type of belief.

Blatantly obvious that what they call "attacks" are just basic criticism. It's truly alarming that hardly anyone recognizes how obvious this is. Especially given how hard this is being pushed in the media, despite having no merit. It's as if an entire country was in the grips of madness pushing for Flat Earth or other weird stuff.
 
Kalliope said:
- Just google Esther Crawley - the only one who has done a randomized study on the Lightning Process in the world. See how she is attacked and how her research is picked apart. This field is exposed to massive pressure, which is different from what researchers are otherwise exposed to, he says.
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Maybe that Crawley study was criticized because it violated multiple rules of scientific research?
 
Thanks for posting the quotes @Kalliope, I was a bit too tired (and I skipped quite a bit of whatever Vogt said and just read the brillian answer by Trude Schei).

After the dax18 piece I have seen some very nice discussion (in Norwegian) about LP and ME, by people not involved with ME. Makes me happy to see how they are in support of patients.
 
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