Lightning Process study in Norway - Given Ethics Approval February 2022

Yes, it's probably not a good idea to write as a patient, particularly not while having brain fog

It would be wonderful if someone had the capacity to write a piece. But I also fully understand the necessity of picking one's battles when there are so many to choose between.

 

My letter can be used or modified in format if necessary. I am busy with some family things at the moment but if anyone wants to explore options and dump a text in from me that is fine.

 

Not sure I agree, having experienced debate in another journal/newspaper that gives gives a certain professor free speech no matter what he says,

I think the campaign started by Victor backfired (I suspected that) and that this would too, just like the debate in Morgenbladet some years ago.

 

I had a response from Dagbladet just thanking me for input. No indication of publication.

 

It is not my fault i got called by a biased journalist choosing to spin the headline and then denied It to be changed. Its not my fault either that people on social media dont read what the campaign is about, and just support whoever they follow.

The petition is very CLEAR, i am NOT against research on LP, but have a lot of issues with the current design. That was clear, and I still think its correct to point that out, rather than do nothing.

 

Patients are complaining nobody’s, that just ought to shut up. They have no insight in their own disease, have no ability to understand anything on methodology, frankly no right to speak up. Be quiet and applause everything that comes your way in the name of science. Thats the attitude, not only this time, but always.

Yes, it kind of backfires again and again, but I thank the ones engaging. It is absolutely necessary. Hard to accept than one just should be silenced by pseudoscience. And it is is really shameful that so few journalists are able to do proper journalism on this topic. It might be hard to dig into, but far from impossible.

 

Maybe the Dagbladet won't publish letters in English?

I think it would be good to publish it here on S4ME so anyone who wants to use it could link to the complete text; also if anyone wants to translate it into Norwegian they could add the link to the original so you won't have to authorize a translation?

 

I have no confidence that Dagbladet is going to be anywhere near fair in this matter.

But publishing the letter here is a very good idea. Maybe it can become useful later or in another setting

 

The reason opposition to these studies doesn't work well is because we haven't been able to make the public understand just how fraudulent the whole research scene in this area is.

It's the norm for researchers to spin their results so that they show the opposite of what they actually show. Normal to switch outcomes, turn efficacy into feasibility studies, label sick people are recovered, claim the findings support a psychosocial cause when they show there is little to no relation, and all the other things and who knows what else they do that can't be discovered by reading published articles and data.

 

Based on the recent articles on this trial on Lightning Process, Norway's National Research Center in Complementary and Alternative Medicine (NAFKAM) has issued a statement concerning LP. They will also contribute to cooperation by organising a conference about LP in order to advance further knowledge and increased patient security "in a field that is difficult to follow and where in general there are no requirements of medical competence nor any governmental inspection of the offerer"

There is still limited documentation on the effect and risk of LP. A polarized debate is neither for the benefit of the patients nor for the benefit of the development of this service, which according to §2 of the Act on Alternative Treatment of Disease etc. is to be regarded as an alternative form of treatment.

In order for ME patients and other users of alternative treatment to make informed and knowledge-based choices for their own health, NAFKAM believes that more knowledge is needed. This should be done both on the basis of research results and experiences of patients and clinicians. Well-designed and completed clinical efficacy studies on LP will be very important parts of this.

NAFKAM: Uttalelse om Lightning Process (LP)
google translation: Statement on Lightning Process (LP)

 

I wonder who will attend the conference?

 

In a third thought; instead of Dagbladet, that maybe @Jonathan Edwards could adress the problems with a study like this to the Ph.D counselor at NTNU, Kennair. And if possible, short story of the problems with the SMILE study as well.

 

Gonna need some high-quality ointments for that burn. Oof.

When the alternative medicine industry is very slowly telling medical authorities "this looks very fishy and you should reconsider because even for us the woo is laid on way too thick", again, is as good a sign as any that the medical authorities have lost their way.

What I still don't understand is that this self-coaching thing is for people who feel aimless in life, there are hordes of such people, why the focus on ME? It makes no sense whatsoever and is completely irrational. It's an even larger population, one that has far more access to the finances necessary to pay for it and who may even find some benefit, though I couldn't really imagine how or why but whatever this is simply not something I can relate to.

Other than cheapening the meaning of ME by associating with yet another clearly BS treatment. But that's just complete dereliction of duty. Which is consistent with how these people behave towards us so it's by far the most consistently logical explanation here.

 

New blog post from Nina E. Steinkopf

She writes about the article in Dagbladet last Saturday, about the planned LP study and the petition against it, about what LP actually is, what other experts have said about LP, about the study design, Wyller, and what questions should have been raised in the Dagbladet article.

We were many who in disbelief read that Dagbladet claims to have "revealed the ME battle" over a 6 page long report on Saturday 16 May. The message appears as an uncritical speech tube for patient harassment and advertising for alternative treatment aimed at a specific diagnosis.

Dagbladet-journalistikk - en belastning for ME-syke (1)
google translate: Dagbladet journalism - a burden for ME sufferers

 

I would be happy to help with translation, or to publish a letter on the Norwegain ME Association website from you, if the paper doesn't want it.

Sorry for the late reply, I am not on the forum that often.

Trude Schei

 

Ah, but if you can get public services to pay for some of this training you can expand your customer base in all directions.

Imagine if the GP could refer someone for LP as easily as to a MUS clinic? Then they can claim to be recommended by the NHS & maybe use their logo. This would undoubtedly make it seem much more "sciency" & health focussed. Get your worried well onboard.

 

Despite my cynicism, even in the worst-case scenario I cannot imagine any health care system, public or private, would ever cover such nonsense as a legitimate health care thingy, no matter how flexible the idea of social prescribing may become.

Maybe the absurdity of it all can be taken all the way to 11 but somehow I can't imagine BPS folks not understanding this would expose their entire thing as a bunch of quackery. It would even cheapen the golden calf of CBT in the process. Maybe they truly are that delusional but that seems excessive even by the usual standards.

I'm sure it could be in quasi-official practice, with GPs recommending it to some if they can afford it, kind of equivalent to an expensive day spa or whatever. But prescribed and reimbursed? That would be such a strategic mistake that would backfire entirely on the very concept of evidence-based medicine and how it has clearly failed if this is what it leads to. Licking an electric socket twice would be a smarter move.