Lightning Process study in Norway - Given Ethics Approval February 2022

I don't think I can handle this level of absurdity. Reality feels rather surreal at the moment.

 

Scary how they changed their language to make an esoteric quack method look like a slight modification of what is seen as established methods. They use words like stress management technic and CBT-based, NLP is droped and sometimes even LP.

 

The level of absurdity are of epic proportions. The entire text, and especially Flottorp, sets a new all time low. Some parts of medicine, cause that’s what it is?, are so broken and unethical, that it is beyond what any reasonable person in their wildest dreams and nightmares could imagine. Patients have had to put up with decades of this now and extremely little progress. I guess it is appropriate to quote Einstein now, when he defines insanity like doing the same thing over and over again, but expecting different results.

 

yes. And they never used the word "patient" about people with ME. Maybe "patient" is too close to people in need of medical treatment with documented effect based on high quality research..

 

Doing the same thing over and over again is how the pyramids were built, it's how societies, and to some extent people, deal with problems which are bigger than they are - which is virtually all problems.

Attrition - it's how we get things done, from obtaining the raw ingredients for a mammoth barbeque to building a city.

 

I think Einstein was meaning when the result one gets from repeating a behaviour is not the desired result. To keep doing the same thing at that point is an error in judging what outcome to expect.

 

Yes the language of what LP is supposed to be changes constantly. For a long time it was never treatment, but some kind of training, to avoid getting in conflict with marketing laws. It was never CBT or something like that, now it seems to be all kinds of things. An element of this and that from here and there,and suddenly it is school medicine? Astonishing.

 

I am sorry to ask, and it is a rhetorical question: Is Dagbladet being paid to publish articles about LP these days?
I have to ask, because their focus looks like targeted propaganda. As if "LP is good. If you think otherwise, you are a ME-activist". My ass. Objectivity is a nice sheep (sounds better in Norwegian).
"Breaking news"/"Dagbladet reveals". What is this?! These articles do not deserve a single click!
In fact, I thought this ME-saga were come to a better place by now, as past this LP chaos.
I am so angry. My Norwegian heart is bleeding right now.

 

I think LP will be shown to have no effect on the underlying illness (if it is ever tested rigorously), although it could be quite good at putting some people into highly optimistic state of mind where they are convinced they can control the illness and live again. They will then attempt to break free of the illness, and probably succeed to some degree for a while, but ultimately the the illness will continue to shape their lives. Perhaps while the patient continues to be highly optimistic, in a way that over time becomes a denial of reality.

 

I fear we have now reached a new era - the era of post-medicine.

 

Would like like to add that it is a straight forward lie, when Flottorp states that LP dosent make way or mean that you should suppress symptoms, you should just interpret them in a whole different way.

Youre «doing» ME cause of fear and avoidance of symptoms, so they are not real, symptoms are nothing to care about, so you just keep on pushing. If experiencing any symptoms, something that is not real cause you’re not thinking right, just use the magic word STOP! to yourself and carry on. Symptoms are not real, nothing to bother, just carry on. It can’t hurt you?

It is all contradictory BS.

 

Follow up article in Dagbladet today where the experts who want to carry through with the Lightning Process study answers to some of the criticism against the study.

It is about a petition against the study, which is mentioned earlier in this thread. When the article was published, the petition had 1 797 signatures.

Dagbladet interviews Victor Håland, who is behind the petition. His arguments against the study are then answered by professor Kennair who will lead the study, professor Wyller who also will assist and research director Signe Flottorp from the Norwegian Directorate of Public Health.

Vil stoppe ME-forskning
google translation: Want to stop ME research

ETA: Sorry, cross posted with @Caesar

 

@Kalliope That's fine. I deleted my post, yours was much better

 

In a previous presentation of the planned study, the intervention group will participate on a Lightning Process course, and the control group will also participate on a Lightning Process course, a few weeks afterwards.

But in this article prof. Wyller says that the study will be a randomised trial, with some getting treatment, and some not.
- This is the gold standard for how medical treatment is tested, and through the study we will be able to answer whether those who receive LP treatment get better or worse than those who do not receive treatment

Have they even talked with each other?

 

I think he means that the one group wont get treatment, before after two months. But that doesnt sound as good..

 

@Jonathan Edwards could you write a letter to this newspaper? I think the article is rather biased.

I think it means that as I predicted, it will be a wait list control group which is totally inadequate. This means that either the people behind this are naive amateurs or there is no intention of giving LP even a small chance to fail.

 

I'm really saddened to see that they're presenting ME patients as anti science. Just for being critical of a study where the effects of a product will be researched by one of its biggest salespersons. A product patients have reported being harmed from.

ME patients are doing an enormous effort for research world wide and have been for decades by lobbying for more research, raising funds, analysing research papers, raising critical concerns, organising research conferences, participating in trials, collaborating with clinicians and researchers and much, much more. This forum is an excellent example of ME patients' involvement in and engagement for research.

We have an expression in Norwegian about the importance of checking your map against the terrain. If there's a discrepancy, it's always the map that needs fixing.
That's why you can't do research from an ivory tower and why it's so important to have an actual dialogue with the people you are doing research on. It gives you as researcher the opportunity to keep checking your map against the terrain.

All positive initiatives that are taking place within the ME field have one thing in common - a collaboration and dialogue between researchers and their research subjects. All negative initiatives have been lacking it.

 

I am doing my best to do that at present.

 

Given what we already know and the history, a LP-study is not where money should be spent, but as stated previously, it would be nice to settle LP once and for all. To try to stop a study is possibly not a good approach. And as far as I understand it, that is not the case either, though the newspaper runs all kinds of headlines. What one wants,
is to amend the protocol. That must be a legitimate demand.

It is of absolute importance to do a study like this as transparent as possible. You could talk about objective measures and so on as taking care of quality, but that is just a part of it. It is essential above everything else, to include long-term patients, patients who have not surrendered to fear/avoidance or whatever, manifested empirically through doing and participation over years. But how? These are more severe patients that may not take any chance on LP, knowing the nutty model behind it, and knowing what they have done for years. The really troublesome and scary part, is that you select only patients with short duration, with a good start early on, and patients that for different reasons believe that the solution is to avoid all activity, stressing all. If choosing the latter subgroup, it won’t be strange at all that you could measure some improvement. But the problem is that the majority of patients don’t have that start, and they simply don’t cave in to thoughts of fear/avoidance. What about these patients, patients that’s sort of been doing what LP says in a practical way and managed it that way. These patients have probably done a typical push-crash, maybe gone from so-called mild to moderate and severe.

But there must be mechanisms in place that will secure that you just don’t select only new patients and skew the results for ME-patients in general. One would imagine, but if there is one thing experienced, it is that low quality research can be sold as brilliant and thing of beauties.

 

This is beginning to look like PACE. Deluded but well connected reseachers that find it easy to prevail over patients that are desperately trying to warn there are problems with what is being planned. A media campaign that misrepresents the treatment by carefully avoiding all the problematic aspects and presents patients as anti-science. Researchers that promise there will be objective outcomes (but history shows any null results on objective outcomes don't matter). A flawed clinical trial design presented as gold standard.