Norway: Article about ME seminar with security

[Kalliope]

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/

 

[Kalliope]

Psychology professor Silje Reme is behind the qualitative study on Lightning Process from some years ago from UK and she is involved in the ongoing study on LP in Norway with LP coach Live Landmark. Reme is one of the leaders of MindBodyLab, a research group doing research on the "complex interaction between the brain and the rest of the body". Live Landmark is part of the team.
https://www.mindbodylab.no/team

ETA: .. and Professor Wyller is listed as someone who cooperates with the team

 

[Esther12]

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/

I'm having trouble getting access to that, so thanks for the summary.

This is the story that the keep promoting as a strong card. Any patient that isn't very careful with their language can be used to make things worse for us.

 

[duncan]

This is the story that the keep promoting as a strong card. Any patient that isn't very careful with their language can be used to make things worse for us.

I'm not sure sitting in the back of the bus is the right way to proceed.

 

[Kalliope]

Here is a google translated quote about why they thought they needed security:

In the past, she has experienced that activists have tried to sabotage by shouting through speeches, or have become aggressive and "thrown chairs".

She says they contacted the security and central service at the University of Oslo, where the seminar was held, and the police, who together must have carried out a risk assessment and concluded that they should be on guard. They were also asked to send the police an advance warning, so they were on standby.

- But should we let this affect our view of ME sufferers? Is this a small minority?

- You can say the same about death threats: the average ME patient would not do that. But the activism we see, where they systematically go after people, is widespread, replies Reme, who believes it comes from despair at not experiencing getting help to recover.

 

[Jonathan Edwards]

Interesting to speculate whether this might happen in the UK, or for that matter France or Spain or USA. Some time back we had an aggressive American journalist 'libelling' an ME researcher at one of her talks I seem to remember but I don't remember any police and for the last few years the woo brigade have seemed to stay below the parapet.

My guess is that if LP enthusiasts started having research meetings in the UK they might find themselves in an uncomfortable situation - but I am not sure quite what that would be these days. Things seem to have changed, but in different ways in different countries?

 

[Lou B Lou]

Hmm .... Silje Reme comes across as quite the Nordic Noir dramatist .... "They are trying to get us"

 

[Solstice]

I'm not sure sitting in the back of the bus is the right way to proceed.

I'm sure it's not. When has pussyfooting about the issue ever effected any dramatic change on any front in anything? Actual threats are wrong, but to have people come to your congress and disagreeing with the bullshit you're spouting as an example of "terror", give me a break.

When I had a semblance of health I coached youth soccer players, I had constant dealings with parents, board members etc. about pretty much everything. Have had more than 1 confrontation where they said I wasn't doing my "job"(I volunteered) properly or where they wanted to intervene on specific things. It's not always pleasant to be scrutinized like that, certainly not in my somewhat disabled state. But I'd like to think I became a better coach for it.

Now if I with no professional background in dealing with that sort of stuff can cope with it quite easily whilst also dealing with being sick. How come professionals trained to deal with "unstable" patients can't even cope with someone that comes to their congress just to disagree with them. Disarm them with arguments, make them your allies. But you can't cause you're wrong about everything and you don't really give a rats ass about us anyway.

 

[Hoopoe]

Sounds like they're preparing to publish a study that is crap and, following in the steps of their UK colleagues, are seeding the idea of dangerous activists to put critics at a disadvantage.

Best response would be to publish an article where the critics precisely point out what is being done: "Researchers who promote harmful therapies with weak studies create stories of dangerous activists to shift the narrative away from factual criticism of studies."

Activism is done out of necessity because of the unbelievably dysfunctional healthcare approach to the illness, and psychologization, disregarding patient views and silencing is very much a big part of the problem.

 

[rvallee]

So they made a spectacle of pretending to be threatened by... *checks notes*... people who can barely walk and collapse at slight exertion. What a bunch of clowns. We are a spectacle to these people, and they just keep lying and lying.

To be fair, having patients protest mistreatment and negligence is a bad look. Even if it's just a dozen or so who need to sit down for most of it. This reminds of a recent thing where an accused told a judge they made him look bad by exposing all the bad things he did. Technically, it's not a good look for anyone when their awfulness is exposed.

Here's the whiny baby bullies after being threatened by dangerous vandals with our deadly stink eyes:

 

[bobbler]

I'm not sure sitting in the back of the bus is the right way to proceed.

@Esther12 have they actually identified for sure that these are actual ME activists. If there was anyone who caused the specific trouble she mentioned - ie any chair was thrown, that it was actually someone who is an 'ME activist' whatever defines that but.. not 'rent-a-mob' is basically what I'm saying?

 

[bobbler]

I'm sure it's not. When has pussyfooting about the issue ever effected any dramatic change on any front in anything? Actual threats are wrong, but to have people come to your congress and disagreeing with the bullshit you're spouting as an example of "terror", give me a break.

When I had a semblance of health I coached youth soccer players, I had constant dealings with parents, board members etc. about pretty much everything. Have had more than 1 confrontation where they said I wasn't doing my "job"(I volunteered) properly or where they wanted to intervene on specific things. It's not always pleasant to be scrutinized like that, certainly not in my somewhat disabled state. But I'd like to think I became a better coach for it.

Now if I with no professional background in dealing with that sort of stuff can cope with it quite easily whilst also dealing with being sick. How come professionals trained to deal with "unstable" patients can't even cope with someone that comes to their congress just to disagree with them. Disarm them with arguments, make them your allies. But you can't cause you're wrong about everything and you don't really give a rats ass about us anyway.

academia as a profession is about as competitive and cut-throat as you get, heated debates/arguments will be happening all the time. Maybe not chairs thrown but who knows what happens at all academic conferences or university meetings.

If they want to use theatre to put themselves in the same league as talks from contentionalist speakers where prep meetings have to be had as to whether to invite them and what preps to make I guess it's a distraction from whether the research is interesting in itself - it has after all been done about 2gazillion times before almost exactly the same way, whatever unblinded questionnaire it is.

'oh no if we turn them down because of their rubbish methodology and same old stories vs the better people working on the same condition/in the bigger subject-area, then we better be bullet-proof as they will email the boss or student's union pretending 'it is because of being controversial' just give them an invite in the middle of reading week or something and make your life easy' is an imaginable conversation happening in response to a request to speak.

I don't know whether Norway has got the same 'freedom of speech' campaigns push going on of recent years. In UK universities was a prominent issue for them, as well as govt saying too many speakers were being turned down due to students unions etc not wanting to 'offend students' as the UK had - and was particularly hammering away as a campaign before covid? e.g

https://freespeechunion.org/about/
https://lordslibrary.parliament.uk/freedom-of-speech-in-universities/
https://www.telegraph.co.uk/news/20...on-set-take-university-court-shunning-gender/

 

[Esther12]

@Esther12 have they actually identified for sure that these are actual ME activists. If there was anyone who caused the specific trouble she mentioned - ie any chair was thrown, that it was actually someone who is an 'ME activist' whatever defines that but.. not 'rent-a-mob' is basically what I'm saying?

I've never heard this accusation of throwing a chair before. I've no idea.

We've seen how other people have spun legitimate forms of advocacy work as abusive harassment, so it's worth working out exactly what happened and why before making a judgement about it. But regardless of that, and to their advantage is that, any patient that isn't very careful with their language can be used to make things worse for us. We've seen previously how that can happen, and how that can be used to support more broadly misleading narratives.

It's not about 'sitting on the back of the bus', or being too scared to raise concerns about powerful people behaving badly, but it is worth realising that we're in a weak and stigmatised position and need to be careful and thoughtful with what we do and say in order to avoid risking making things worse for other patients.

 

[Solstice]

I've never heard this accusation of throwing a chair before. I've no idea.

We've seen how other people have spun legitimate forms of advocacy work as abusive harassment, so it's worth working out exactly what happened and why before making a judgement about it. But regardless of that, and to their advantage is that, any patient that isn't very careful with their language can be used to make things worse for us. We've seen previously how that can happen, and how that can be used to support more broadly misleading narratives.

It's not about 'sitting on the back of the bus', or being too scared to raise concerns about powerful people behaving badly, but it is worth realising that we're in a weak and stigmatised position and need to be careful and thoughtful with what we do and say in order to avoid risking making things worse for other patients.

It really doesn't matter what happened. We've seen "them" using gathering online on forums against us, we've seen them using a single act of mild-mannered defiance against us when "defending" PACE. They will attack us regardless of what we do and say because it is all they have. The science isn't at their side and a lot of the big institutions aren't anymore either. Any patient that is very careful with their language can be used against us too, has been used against us. It's high time we call a spade a spade as I think @Jonathan Edwards has repeatedly said and let go of the dread of it being used against us.

We have every right to get emotional too. We're lying in our bed sick and they have the gall to label us dangerous activists? There can't be enough dissenting voices against that.

 

[FMMM1]

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.

Maybe the meeting was low key due to the fact that they didn't wish to deal with difficult challenges --- a compliment to those who are challenging them. Paul Garner seemed a tad annoyed with a response to his recent Twitter post i.e. someone pointed out that when he was ill his "records"/statements indicated that he was walking 5KM/day --- more than the average for healthy people. These folks may not like scrutiny. Also, why focus on patients --- folks like Professor Brian Hughes +++ have pointed out the flaws, misrepresentation in their reports of their "treatments", "research" base --- surely they should consider those objective voices?
Yea I'm hoping the Norwegian police, and other police forces, are looking closely at the lightning process! I suggest the Norwegian groups should formally ask for a review via the health Minister, minister for Justice ---

 

[rvallee]

So, taking a step back, this is an article about something that didn't happen. Which is impressive. Basically speculative journalism about things that could have happened but did not.

And those are people who keep saying we don't have an open mind, but they close all discussion of their thing, never mingle with actual scientists, and don't want to hear about any actual research. With hundreds of trials of CBT, there is nothing left to research anymore. It's debunked, and they can't handle the truth.

But I did see some discussion on (Norwegian?) twitter about the chair and if that's the "incident", then it was someone standing up too quickly to speak and a chair fell back. Which is about as detached from reality as how it went from death threats to being "heckled" at a conference, then trolling on the Internet, which both Wessely and Sharpe admitted is false.

So, basically this is what they endured, the poor things, how will they possibly survive this ordeal?

 

[Solstice]

But I did see some discussion on (Norwegian?) twitter about the chair and if that's the "incident", then it was someone standing up too quickly to speak and a chair fell back. Which is about as detached from reality as how it went from death threats to being "heckled" at a conference, then trolling on the Internet, which both Wessely and Sharpe admitted is false.

Can I pester you for a source? I've been having a search on twitter myself but can't find much.

 

[rvallee]

Can I pester you for a source? I've been having a search on twitter myself but can't find much.

I'll be on the lookout if I see it in my twitter feed. I have to use the browser translate function on tweet threads so it's hard to search.

The only thing I'm pretty sure of is that it was a discussion about this article or "activism" in general, you know, the bad kind.

Normally I would be able to remember this without effort, having seen it yesterday. I had a very good memory. Now it's harder for me to remember this small thing I read yesterday than it would be to remember something from years ago. What nonsense that memory isn't affected just because a few short-term tests aren't appropriate for it.

 

[Kalliope]

I can only contribute with hearsay, but as far as I understand the "throwing chair" thing is from the same incident as when Crawley got heckled during a lecture in Oslo for several years ago, and which she referred to as evidence of harassment in the PACE tribunal. The person who heckled had to leave and apparently a mug was thrown. This seems to have developed into a chair.

 

[Solstice]

I'll be on the lookout if I see it in my twitter feed. I have to use the browser translate function on tweet threads so it's hard to search.

The only thing I'm pretty sure of is that it was a discussion about this article or "activism" in general, you know, the bad kind.

Normally I would be able to remember this without effort, having seen it yesterday. I had a very good memory. Now it's harder for me to remember this small thing I read yesterday than it would be to remember something from years ago. What nonsense that memory isn't affected just because a few short-term tests aren't appropriate for it.

Don't put yourself out on my account. The memory thing is all to familiar offcourse.