Lightning Process study in Norway - Given Ethics Approval February 2022

Sorry, this is probably just poor translation from my side. Norway is not member of EU, and FOI was the only translation I could think of on the spot. The literal translation from Norwegian of its "FOI" law is the "right to insight".

ETA: It's quite easy to do, and you can do it through a website and seek through documents there as well. According to the website they receive about 40 000 requests a month.

https://einnsyn.no/

 

Norway is a member of EU single market so quite a lot of EU regulations/rules apply to Norway.
This may be the "parent" EU legislation i.e. one reason why Norway has FOI - it was "inconvenient" for the UK PACE authors too!
https://commission.europa.eu/about-...rinciples/transparency/freedom-information_en

If you're challenging this then you can rebut the "anti research" argument by highlighting research by Fluge & Mella - they actually used actimetry [objective assessment] in the rituximab trial. We're not actually "anti research" rather "anti" poor research. [EDIT - NICE] found all of these studies to be "low or very low" quality - unusable --- so why fund unusable research with "my" tax?

EDIT - should have added that the research is offensive to people with ME/CFS and there are a lot of people with ME/CFS + family members, friends --- lot of votes! Predominantly affects women too and women are more likely to vote!

 

Nina herself uses the term Freedom of Information in her blogs. I think it's a perfectly fine translation as it refers to the principle of public access to information, rather than particularly referring to the UK's legislation and exact way of processing this sort of request.

 

That’s not really what this hit piece was about.

They framed this as patients advocates trying to get access to internal project documents and privat discussions among researches for an ongoing research project.

Totally a spin to create outcry towards ‘terrible activists patients’ and paint the picture of abuse.

So of course several other entities made public annoncements siding with Reme and co, internal documents in ongoing research is of course not part of FOI laws.

Reme just ‘forgot’ to mention the request have been about communication around the project - funding, ethical approval etc. Not insight into the research data themselfs etc.

This was a hit piece.

Remember requests for insight have exposed both Flottorp and Reme trying to influence the etichs commitee. They probably didn’t like that…

Don’t know what bearing EU might have had on Norways laws about right to insight, but it’s in general well established, supported and easy to get access via online platform.

 

Yes I hadn't picked up on the context.
You obviously understand this - great.
Possibly you could point out that there are exceptions/exemptions from FOI --- & quote them & highlight that they are not relevant --- so these folks are just trying to mislead!

Yes, not sure it's necessary or useful but in the UK & Ireland the EU angle has caused national government a lot of hassle --- they are/were under pressure, from the EU, to implement legislation --- not just publish a press announcement & then not implement the law!
Wouldn't happen in Norway of course!

 

It's going to be pretty wild in the next few years when we'll be able to use AIs to not only automate the FOI process but also its analysis and synthesis. All this nasty stuff used to go unrecorded, or at best on paper left in boxes no one opens. Soon this will be over, all the info that's been digitized and is subject to access to information will be trivial to dig through and do the kind of analysis that would normally take several years to a graduate student.

All their lies and scheming will be exposed. They are not ready for it. They used public money, resources and positions for their scam. There will be accountability, even if it won't bring any justice for the lives they destroyed.

 

Wasn’t sure where to post this.

https://twitter.com/user/status/1631401289094496257


Would be good to get a transcript in English and I can look into creating English subtitles

Direct link:

https://tv.nrk.no/serie/dagsnytt-atten-tv/202303/NNFA56030223

 

That's wonderful, @Midnattsol !

I'm too brain fogged to write a summary, but am sure it's of interest to the forum. Thank you!

 

Excellent, do you want me to see if I can generate a transcript, to make it easier? I'm not sure if I can but might save some effort?

 

A good argument against LP to make in public is that it tells people they must pretend they are healthy and tell others they are healthy, and that patients can be vulnerable to this sort of thing, and that this is why the promoters of LP do not want to reveal what exactly is involved in LP.

The proposed study is unethical for this reason, and also because it is designed so that distinguishing between pretend improvement in health and real improvement is not possible.

 

Well, it's not hard to see the problem here. You can't fix conceptual flaws after the fact, and they are not "up for debate". In fact anything you do following a conceptual flaw is useless. In literally every profession this principle is applied, it's not even an option. It's pretty much the most embarrassing kind of failure, even.

Here we are, patients denouncing reckless harmful pseudoscience, and the medical profession is obsessively pushing forward with even worse pseudoscience, after decades of failure, not caring about what outcomes it causes.

There have been hundreds of trials and experiments of the exact same thing. Every new study is just a copy of every one that came before, all weak and biased, pretending it hasn't been decades and hundreds of studies affecting millions. You can't "show promise" after all this time.

We're going to have to build our own medicine, uh? They can't do it, just can't. Because this system has major conceptual flaws. And you can't fix those, you have to build it right.

 

Thank you so much for transcribing, I really appreciate it!

I'm deeply impressed by Nina Steinkopf, over and over again. She's phenomenal.