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.

 

Does not the realisation of the depletion of one's bank account count as a downside or unpleasant side-effect?t

 

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.

 

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.

 

I'm inclined to think if you have paid a lot of money for something, then it becomes more difficult to objectively accept if it failed to work.

 

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

 

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.

 

Google translate page didn't work for me there, but here's the version got from posting it in manually:

 

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.

 

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.

 

Yup, a 'scientific' seal of approval of sorts. That would be really scary and harmful.

 

Phil Parker starting to 'cash in' on this and CV already........

trading standards?

 

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.....