Norway: Article about ME seminar with security

DokaGirl said:
Some parents of children with ME place them in LP programs. The parents think the child is ill. This understanding may also have been validated by medical personnel. However, it seems the LP then goes about delegitimizing the parents' and others' authority and understanding that the child has any illness at all.

What a confusing time for the child, whose trust and belief in their parents may be shaken or damaged. This could in turn make the child feel very alone with their situation. Are the potential negative ramifications of this process ever examined? It appears not.
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I agree bad enough to be ill, only to find yourself in receipt of this "help".

Apologies for the shorthand but these folks [Lightning process etc.] are nutters --- but I get annoyed when the Government/officialdom buys in --- there are plenty of nutters on Facebook etc. but Government/officialdom doesn't buy in to that. Why doesn't Government/officialdom stick with the Brian Hughes +++ i.e. rational views?

I consider myself to have plenty of unreliable/un-objective views by the way.
 
Patient advocate Nina E. Steinkopf did the digging the journalist who wrote about this seminar with security should have done. There seems to be no record of communication between the University and the police about this seminar. Professor Reme has said it's easy to document threats and harassment against ME researchers, but when Steinkopf got in touch with her and asked which threats and harassment against ME researchers have been reported to the police, and also which police unit was contacted regarding the conference – and when, Reme did not wish to answer.

Steinkopf: Secret ME conference in Norway: Were the police on standby?
 
Kalliope said:
Patient advocate Nina E. Steinkopf did the digging the journalist who wrote about this seminar with security should have done. There seems to be no record of communication between the University and the police about this seminar. Professor Reme has said it's easy to document threats and harassment against ME researchers, but when Steinkopf got in touch with her and asked which threats and harassment against ME researchers have been reported to the police, and also which police unit was contacted regarding the conference – and when, Reme did not wish to answer.

Steinkopf: Secret ME conference in Norway: Were the police on standby?
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I smell burning pants.
 
Kalliope said:
Patient advocate Nina E. Steinkopf did the digging the journalist who wrote about this seminar with security should have done. There seems to be no record of communication between the University and the police about this seminar. Professor Reme has said it's easy to document threats and harassment against ME researchers, but when Steinkopf got in touch with her and asked which threats and harassment against ME researchers have been reported to the police, and also which police unit was contacted regarding the conference – and when, Reme did not wish to answer.

Steinkopf: Secret ME conference in Norway: Were the police on standby?
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The police made general risk assessments in advance of this academic gathering, and we followed their recommendations. We do not wish to go into the specifics of the assessments
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Sounds about right. I'm sure they did that, ask the police for recommendations, and were probably given generic answer with some amount of confusion from the police, who don't know the ins and outs of conspiracies in the BPS bubble. But the idea that police were on standby is beyond laughable. They have, you know, real work to do. This would be campus security anyway, or community police.
In a podcast with comedian Harald Eia on 21st October, Reme says that the debate climate concerning ME is harsh and that this is easy to document
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And yet, this is the whole documentation:
.
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They want to present this as argument about science, but they aren't doing science, they are trying to directly influence the lives of millions of people, somehow without wanting to hear anything from the patients whose lives is impacted. This is simply not serious. There are loads of jobs in real science where no one is directly affected by their work. This is as coherent as a politician aggressively pushing a policy saying they don't want to hear from the people who will be affected by it. Childish nonsense.
 
In a new blog post from patient advocate Nina E. Steinkopf it's revealed that Research Director from the Norwegian Institute for Public Health, Signe Flottorp participated, at the seminar. She has since deleted e-mail correspondence with the organiser.

Steinkopf also shares the invitation to the seminar;

Quotes from the invitation:
"This seminar is by invitation only, and following the Chatham House Rules, there is no recording allowed"

"The handpicked researchers selected to this event want to contribute thru science and collegial collaboration to share knowledge and experience towards the "truth" in concern for the people that experience long term symptoms and reduced function after an infection".

Research Director at the Norwegian Institute of Public Health attended secret seminar; deleted evidence
 
Patient advocate Nina E. Steinkopf has collected more details about the seminar, who participated and their network.

Steinkopf: Chief physician for the Norwegian Labour and Welfare Administration Marit Hermansen attended a secret ME seminar

quote:

This is a network that fights for one particular understanding of ME and Long Covid that is contrary to scientific consensus and promotes undocumented treatment methods.

It is disturbing when people with power gather in secret meetings with only specifically selected people to discuss the one «truth» about the lives and health of sick people. The participants have made an active choice not to listen to what biomedical research and the vast majority of patients say, but instead choose to gather at a secret seminar to explain why other countries’ health authorities and the patients are wrong.

A secret network has been exposed. It is a scandal that such key figures as Hermansen, Flottorp and Helland took part in the event, and it is a scandal that the University of Oslo was the organiser.

Thank you to those of you who requested access to the documents relating to the seminar – and didn’t give up.
 
He is a former consulting doctor at the Labour and Welfare Administration (NAV) and a medically knowledgeable legal member of the National Insurance Court. In 2020, he told the newspaper VG that «ME is a fashion diagnosis» (Norwegian text).
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I truly don't understand how it's acceptable to have such bigoted opinions, opinions!, about an illness affecting millions. Opinions that are then acted upon, there is no separation of private and professional views here. This isn't like separating private religious beliefs with a duty-bound profession, the beliefs are entirely about the job and put into real life outcomes.

The claim itself doesn't even make sense, this has been known for over a century. Nothing in life works like this, this is the stuff of elves and leprechauns.
 
Kalliope said:
The newspaper Morgenbladet has a paywalled article today about a recent ME seminar in Oslo.
The title is: Seminar for ME researchers required security and police on standby: - They are trying to get us

The article begins with psychology professor and the organiser for the seminar Silje Endresen Reme who warns journalists against writing about ME.
- When we as much as hint that psychological factors can be part of the illness, we are not just met with disagreement, but with personal attacks. They are trying to get us.

The seminar was for ME researchers who research CFS as a biopsychosocial illness. They chose not to have any announcements on social media on beforehand and only let leaders on the top of the involved organisations know about the seminar. Otherwise there would be a lot of pressure from the activists, who according to Reme are in a minority of ME patients.

Trude Schei from the Norwegian ME Association comments and says it's sad if anyone felt they needed security. Nobody wants a situation like that. She is also sad that this perspective is repeated when it comes to ME, and says it overshadows the professional debate. If anything it's strange ME patients aren't even more angry.

- When they are insinuating that a whole patient group is aggressive, they have to show documentation for this having happened on the level it's claimed to have happened.

The article says the biopsychosocial side wants to investigate treatments as CBT, while the biomedical side thinks the illness should be investigated as a "physiological" illness. It says USA and UK stopped recommending CBT and GET, but that the countries have not chosen any sides.

Psychologist and ME sufferer Frøydis Lillesalen says the main reason for the frustration, beside the illness itself, is the lack of research and lack of help.

- ME patients have tried psychological treatments for 40 years. If these interventions had worked, we'd be left with very few ME patients in Norway.

Henrik Vogt, MD and leader of Recovery Norge says that Recovery Norge would never have had a function, had those who recover been welcome or listened to by the Norwegian ME Association.

Frøydis Lilledalen is sceptical that an organisation with 2-300 recovered people, is used to represent a patient group of 20 000 people.

https://www.morgenbladet.no/aktuelt...hold-og-politiberedskap-de-forsoker-a-ta-oss/
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The article has now been corrected as there are no verifications of the claims from professor Silje Reme that the police in any way was involved as security or backup for this secret ME seminar. The newspaper Morgenbladet has printed a correction together with an apology in today's edition and edited the article from 2022 by removing the parts about the police. The newspaper mentions the work of patient advocate Nina E. Steinkopf who has investigated the claims through FOI-requests.

Steinkopf has written an article about the correction. She also reminds us that professor Silje Reme in another media article claimed that she has received a "storm" of FOI-requests. Those requests turned out to be zero.

Steinkopf: Morgenbladet retter; Ikke riktig å slå fast at ME-seminar utløste politiberedskap

google translation: Morgenbladet corrects; Not right to state that ME seminar caused standby by police
 
To my knowledge, there has been no such confirmed incident. Unless someone wants to count someone throwing a cup after being unfairly ejected, which no reasonable person would. I heard some people saying they saw letters that were angry and still don't think it qualifies much, certainly not for this hysterical reaction. A rare case where it actually applies.

But this has been several debunked claims now. More than confirmed claims, even if we're generous and go with what people agree they saw from private correspondance and cannot share.

The entire timeline before PACE was debunked by the information tribunal. It's simply not credible that in making sweeping claims they wouldn't have used any and all evidence, from Wessely's proclaimed stack of threatening letters, but had to admit that there was none. It was later turned into claims of harassment, then later changed to trolling comments on the Internet, which are actually meek and mostly factual.

But I have no doubt such claims will be made in the future because it never makes any difference. A retraction two years later doesn't get 1% of the original headlines. I still occasionally see random comments, usually on Reddit, about the bomb threats. Doesn't matter that they're false. Doesn't matter that Sharpe made a very public claim of leaving the research with his Reuters special report, only to get back in when Long Covid money started flowing in. Although we haven't seen anything other than his name being mentioned being involved in a clinic. And Wessely doing a lot of work after his own claims.

Meanwhile we have been pretty much right about everything, LC has made it very clear, although most are still in denial. And still it makes no difference. Absurd.
 
Kalliope said:
The article has now been corrected as there are no verifications of the claims from professor Silje Reme that the police in any way was involved as security or backup for this secret ME seminar. The newspaper Morgenbladet has printed a correction together with an apology in today's edition and edited the article from 2022 by removing the parts about the police. The newspaper mentions the work of patient advocate Nina E. Steinkopf who has investigated the claims through FOI-requests.

Steinkopf has written an article about the correction. She also reminds us that professor Silje Reme in another media article claimed that she has received a "storm" of FOI-requests. Those requests turned out to be zero.

Steinkopf: Morgenbladet retter; Ikke riktig å slå fast at ME-seminar utløste politiberedskap

google translation: Morgenbladet corrects; Not right to state that ME seminar caused standby by police
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I hope there is a lot of social media able to make this change published far and wide to counter the ‘when retractions are made they are in small type on page 18’ type thing.

it should be a news article in itself

at least hopefully that way if she does it again then should anyone Google her the old claims being ‘debunked’ would hopefully come up to show it’s perhaps a bit of a pattern with her
 
Sid said:
Spread huge libellous lies, quietly issue a correction two years later.
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I don't know if anyone has the energy, or the motivation knowing it would probably be for nothing, but it really should be asked of the reporters and the editor for this claim what fact-checking, if any, they did, or if they simply took them at their word.

Because if they issue a correction, it's because they accept that they got it wrong. They probably asked for any evidence that Reme could provide and received none that they could vouch for. Maybe the same old vague threats, but again there was no evidence for any of them. But how could they get it wrong in the first place? This is not acceptable, it's yellow journalism.

But given the way this has been put together, no one was libeled. There is no actual accusation to any specific person regarding any act based on any past behavior. It's simply a generic non-specific threat. Which makes it especially malicious since it was put together this way precisely to make an accusation by, hell not even association, but by mere existence.

The people who made this lie knew very well what they were doing, that they were amplifying past lies precisely for the effect it had, and knowing that it was so vague that it specifically accused no one of anything, while suggesting that we are all guilty for... whatever.
 
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