Lightning Process study in Norway - Given Ethics Approval February 2022

"says Flottorp.

- However, I have full confidence that the members of NEM think for themselves, and do not allow themselves to be pressured by committed professionals, friends and acquaintances expressing their opinion, she adds."

but they are in danger of being 'pressurised' by 'activists'?? (she said in her email:

"The regional ethics committee has now approved the study again, after some changes where done (again I don't know the details). I have understood that the ME activists again have complained about this decision. I don't know if the national ethics committee will get the study for review again, but I have understood that you are a new member of the national ethics committee. That is the reason I contacted you."

 

At this point, we should look beyond each individual misdeed and talk about the pattern, the fact that this kind of unethical behavior is the norm with these people. Everywhere you turn you find the same backroom deals, influence operations in what are supposed to be independent proceedings, threats to get people fired, overstepping their role in the promotion of a very conflicted and biased ideology.

This is no longer about individual acts, the pattern is clear. And unlike the millions of us who barely know each other, these people know each other very well, they work together, collaborate in a coordinated fashion. They have the same interests and biases. They are not guilty by association, they are guilty by coordination.

And that pattern happens to exactly match what they accuse us of and we are obviously incapable of doing. Which basically shows that they understand that doing this is unethical, but if they don't do this none of it would have worked, they have to lie and overhype everything or no one buys it. And really it has to be said: lying is part of the pattern. Call it mistruths if you badly want to be PC but these people lie with ease and no shame at all.

 

The debate continues here in Norway.

Professor in psychology Jonas Kunst and psychologist Sidsel Fjelltun wrote an opinion piece a few days ago in Nettavisen criticising Flottorp and the LP study:

Overraskende at forskere tviholder på slike utdaterte påstander
google translate: It's surprising that researchers are holding on to such outdated claims

Quote:

When you have got all the big patient organizations in most countries against you, it is highly unlikely that this is due to an effective treatment that nobody wants.

Then it is time to come to terms with one's own point of view and take a more critical look at the research literature.

Theories that one has built up over many years become personal and part of one's professional career. But they do not become more correct by regularly repeating outdated positions in the media and thus artificially maintaining an "ME debate" that belongs to the past.

 

Anne Kjersti Befring is associate professor of law at the Faculty of Law at the University of Oslo and also deputy chairman at the National Research Ethics Committees (NEM). She is interviewed today for the research news site forskning.no and in short asks some researchers to pull themselves together. She receives replies from Signe Flottorp and Atle Fretheim (Fretheim was in heated dialogue with Cochrane's former editor about keeping the GET review by Laurun et al) from the Norwegian Institute of Public Health.

Forsker om konflikten rundt ME: - Nærmest krigstilstand
google translate: Researcher on the conflict around ME: - Almost a state of war

Quote:

Befring says she does not know the history of the ME conflict and does not know why the climate between groups of researchers and patients has become so bad. She says she is not concerned with placing blame, but is aware that work must be done to sort things out.

- I believe that it is time that researchers and other professional actors make a targeted effort to stop this polarization about ME, says Befring to forskning.no.

- The way out of this state must start with an increased degree of humility and responsiveness when patient groups protest. When many patients do not feel heard, the resistance increases, says Befring.

 

There's only one side to blame here. If anything, the patient community has been way too lenient, because we know it would backfire on us. Even when we do everything by the book, as with the IOM and NICE, we are still bullied and attacked for it, the outcome dismissed as the product of "activism", even though the BPS guidelines they pushed without evidence was exactly that.

It really has to be made clear that there is only one group of people to blame here. It's not clear here. Pretending that this is about anything other than people bullying their pet theories by abusing their power is missing the entire point. This is the history here, it's clear and simple because it's the exact same history that repeats itself constantly over the same issue: what medicine doesn't easily know it rejects as non-existent. Always has. Always will be until stopped.

 

Yep I'm not sure I've seen something so full of fallacial arguments such as 'Live Landmark might have economical conflicts of interest, but they must be much smaller than those of the pharmaceutical industry'

erm - pharm don't have a treatment on offer, and aren't part of this review or lobbying. And money into an individual's pocket is pretty powerful - pretending that's OK because it could be more doesn't make it not a financial interest. It's like saying it's OK to have someone who is married to the head of a company on a bid review, because their financial conflict isn't as much as the theoretical 'MNCs of the world who have financial interests' - what has that got to do with the price of eggs?

But she does have a point, maybe researchers should be banned from leading the research for treatments they will have a career and therefore financial interest in taking forward - just like happens in other areas.

Anyway, what I want to know more about is the following from her:

Having seen the 'robust exchange' between Atle and the methods dept/then Karla at Cochrane over the exercise review rating their 'result' as low vs moderate but not significant (and then dropping the latter bit) I think the communications over this latter 'robust exchange' where FLottorp apparently stopped it from being withdrawn are due too - can they be got by FOI etc to go alongside the emails from the review in the first place.

If only so that the public can be aware it isn't 'ME activists' that are doing the lobbying and arm-twisting? And yes, because of the pattern

 

INsightful of their attitude towards patients as human beings and their level of personal responsibility as medics/researchers.

About as trustworthy and concerned for safety as a garage that has a load of people saying their brakes failed 6mnths in and just waving their hand saying something similar.

 

If I'm right in interpreting the dates on these. Her daughter still has ME, and the LP thing was years ago - so it wasn't 'a cure'?

 

Dear goodness! that should ring massive alarm bells in anyone new to a job! How worrying and blatant

 

Agreed. I'm frustrated that people of this type are employed, particularly when it is institutions of any kind with any funding other than their own (or maybe some whatever commercial backer).

It really is beyond inappropriate behaviour that should have left them unemployable and untrustworthy for the areas they are involved in. I know that for some reason most of these areas don't have a clause of 'due/good character for the position you hold' ie bad things like this exclude you from them, but it seems obvious they should.

These are positions of power over others jobs, careers, research agendas, and patients. Not to mentioned the indirect and downwind impact of such individuals using the job titles forevermore in order to claim credibility for whatever else they do even after they have moved on.

It isn't like they don't have actual official meetings and written submissions so one really does have to ask whether they do it this way in part to avoid this all being in the minutes etc.

Anyway making it a strict offence that affects employability would put a swift end to this sort of thing surely? It can't be nice for honest people to receive these sorts of things and sit there thinking how does this make me look, what on earth do I do etc.

 

Oh my goodness, I've just looked more closely at your first link - the lightening process page: https://lightningprocess.com/esther-rantzen-i-am-now-confident-the-lightning-process-has-worked/

This is so, so naughty - they've presented these as if they are live testimonials that are still active and YET they are from 2007, and 2008 and link through to Daily Mail articles.

I'm guessing as if they were testimonials they would have to have taken them down 1. if it turns out they no longer agree it cured her and 2. because you can't have 15year old testimonials without an update - and her daughter still has ME. If CMA compliant then you'd contact the writer every 2 years at least (I would do it annually) and need to update these as well as renew permission because things change.

SO instead they've misrepresented a 15 year old newspaper article as if it were a testimonial from today by not including any dates (when you click on 'read more here' you redirect to these old daily mail articles):

This is at best skirting a loophole in the regulations of what you are allowed to do regarding testimonials, one I'm not sure actually exists..

 

There is conference or something happening today where Flottorp is lying a lot about her past lies. Even as those words are cited by German psychosomatic ideologues to justify the same coercive system where they're right and we're wrong and that's final.

Keeps saying she didn't say things she said many times. She seems to claim that she does not call ME patients activists, it's other people, clearly a lie, but no pushback or follow-up on who does she mean then. Very different claims depending on the audience.

Dishonorable medicine.

https://twitter.com/user/status/1611716890933723137

 

I do love Norwegian.

Mrs Floptop being snakked for dissing the ME activistens.
Go for it Tostrup!

 

Since the question wasn't asked on the panel, several twitter users asked her the question directly: who then are the "activists", if not the patients she has been demonizing for so long? No replies as far as I can see. All power. No responsibility.

 

I would love to know the answer to that. The people making these claims about illegal activities (because making death threats is illegal in the UK, as far as I know) need to give explicit examples, and name names. After 30 (or more?) years of accusing people with ME of various illegal activities it is time for them to tell the world who has been arrested, charged, tried and sentenced for these activities, rather than just flinging mud at a large group of very sick people.