Lightning Process study in Norway - Given Ethics Approval February 2022

You read it right.

One ACT UP protest shut down the FDA for a day. The protesters chanted "Hey, hey, FDA, how many people have you killed today?". This resulted in at least 120 arrests.

They also did other even worse things. It's an interesting read. When one's life depends on a competent response by health authorities to a crisis, people are willing to do transgressions they would otherwise not do. https://en.wikipedia.org/wiki/ACT_UP

 

A good comparison is being beat up by a police officer and being charged with destruction of property... for bleeding on their uniform. It's a very specific example but it also happens to be something that happened, absurd as it sounds.

We are perfectly in our right to complain, our lives are at stake, and people who argue that we have no right to complain at all are completely in the wrong. In fact we would complain 10x as much if we could, but we are too sick to actually do anything like that. Which makes those vile lies about us being damaging all that much worse. There is no right to hurt people, for ideology or any other reason. It is only because it has been absurdly accepted that we be deprived of the right to testify to our own life experience that this is tolerated.

It's clear they think we are stupid and basically losers. I don't know how they will react when we recover some health, that some of us are able to wield political and legal power, against which they will be completely out of their depth, these people are not exactly the straightest tools in the shed.

In the end it's inevitable that these people will be recognized in the same vein and as damaging as HIV deniers. They are essentially the same. It's only a matter of time, but the judgment of history will be extremely harsh. It's amazing that they can't see that but then again, if they could see anything beyond their little selves, they wouldn't be doing any of this here.

 

Under normal circumstances, inappropriate behaviour would not be acceptable. The circumstances are however extraordinary. I would happily support ACT UP style protests, if we had the capacity to organize them.

And PACE authors need accept that they can't harm patients with lies and be loved by patients at the same time. I'm honestly not sure what else they were expecting besides being called a fraud and similar things.

In every country where the situation of patients has been described to me, the problem is more or less the same. This is a relatively common illness that destroys lives and is in the same category as other major diseases like multiple sclerosis and it is being totally mismanaged despite patients trying to communicate and improve the situation. If ordinary ways to communicate do not work, you must somehow get heard in other ways. The situation is unlikely to fix itself after several decades of malfunctioning.

If we had proper protests, we could make much progress in a short amount of time. But we are too sick, so this remains a fantasy. Maybe there are enough patients to create the needed pressure in other ways.

 

As an early member of ACT-UP, I didn't consider these actions to be harassment. They were legitimate non-violent tactics, even if shocking to the establishment. As someone who has been accused of harassment in this case, I find that researchers in this field, and perhaps people in the UK overall, have defined harassment way, way down.

 

Surely it is us who have been harassed by psychs with no understanding of our illness advancing their careers without a thought for our well-being? They are using our illness for their own self-aggrandisement without regard to the cost which we are bearing. Having no medical answers is bad enough, but to have harm forced upon us? Surely that qualifies as harassment? If they just stood outside our houses throwing red paint and chanting "no research, no treatment" that would be one thing, but to force additional harm upon us is downright cruelty.

 

Harassment? Where are the context of years and decades of quackery that patients have had to put up with? That’s just silenced. How thin skinned can you be, and should patients that have gone through much much worse year after year not speak up? There certainly are no limits when it comes to pushing pseudoscience. Done with blindfolds to the rest of the world, especially patients, and harming immensely. To portray themself as sufferers...? Actually looking at the facts, I agree that patients overall have acted in a stunningly behaved manner.

 

It's not just the quackery, they have an organised and coordinated PR campaign against patients which is still ongoing. I'm sure that meets the definition of harassment.

 

In addition to actively encouraging and giving governments and insurance companies excuses to use to deny much needed financial and practical assistance.

 

New blog post from Nina E. Steinkopf

In the project application for this Lightning Process trial it's claimed that the Norwegian Labour and Welfare Administration (NAV) will play an active role. The Labour and Welfare Administration on the other hand denies having anything to do with the study.

NAV avviser nok en gang å ha en aktiv rolle i omstridt studie
English translation: Researchers claim NAV has an active role in a controversial study. NAV rejects this

 

It looks like someone built a firewall around the information so that NAV could claim innocence.

The above link and all the imbedded links have been saved on the internet archive. I admit I'm placing some hope there that all the information will not be lost and will be accessible for future forensic analysis.

 

New blog post from Nina E. Steinkopf where she looks closer at the application for the study to the Regional's Committees for Medical and Health Research Ethics. She raises several questions and concerns.

Studie på ME-syke: Kynisk, uetisk og uforsvarlig
English translation: Study on ME patients: Cynical, unethical and indefensible

 

https://twitter.com/user/status/1297205668353650693

 

Perhaps someone would like to point Sten Helmfrid to this thread:

https://www.s4me.info/threads/discrepancies-from-registered-protocols-and-spin-occured-frequently-in-randomized-psychotherapy-trials-–-a-meta-epidemiologic-study-2020-stoll-et-al.16397/

Edit to add: I don't think I was clear in that the reason is to use the research to back up what he (SH) says and I didn't mean the thread so much as the actual paper.

 

Moved post

It will be interesting to see how REK (regional ethics committee) in Norway judges the mess of an application they have received for an LP-study. I believe they did it last week, but verdict is not out yet.

They have gotten a lot of thorough background and methodological feedback from me and other patients, so I will only totally lose hope in the system if the study goes through At least in its suggested form.

 

Nina E. Steinkopf with new blog post where she exposes that the Labour and Welfare Administration HAS played a role in preparations of this Lightning Process study, despite previously having denied any connections with it.

Nav innrømmer å støtte omstridt studie
English translation: NAV admits supporting controversial study

 

It seems they must have learned something from the UK. David Owen, an English politician, has been giving evidence to the Contaminated Blood Enquiry. He said that when he was a Minister in what was then the Department of Health ans Social Security, it was known internally as The Department of Stealth and Total Obscurity.

 

I am shocked, SHOCKED, that gambling is going on in here. Shocked!