Norway: Article about ME seminar with security

[cassava7]

The problem is that most of the time they are bombarded with the media saying it is yuppie flu and oh so clever psychotherapists saying it is all BPS. People are fickle rather than anything. But they would understand the mug throwing perfectly if it was presented to them as it really happened.

And anyway, the stuff about ME people being militant doesn't really implying on the general public consciousness. It is just a meme used in medical circles to denigrate critics.

I wholeheartedly agree. Unfortunately, the crux of the issue is that patients do not control what the media put out on ME. Influential doctors do, for the most part, and, sometimes, the media seek responses from patients in articles that are already spun to fit the BPS narrative.

Rarely (although more often these days) do we get to read a news article that presents the patients’ perspective and the background context. These articles, such Sean O’Neill’s in the Times, or the recent ones in the Irish Times and on the Norwegian TV2’s website, are very helpful in that they can change minds indeed. However, we need many more of these, and far fewer with a BPS spin, before most people are sufficiently aware of ME to understand why a researcher was thrown a coffee mug at.

 

[cassava7]

With regards to an act of activism, I think it would be amusing if people stood up in the middle of an awful talk and spilled their coffee on the ground at the same time. Or turned their chairs upside down, rather than throwing one at the speaker. Then there would be no accusation of physical violence, though it would be wise to record video footage of it!

 

[bobbler]

I believe your own experience is insightful, @Jonathan Edwards. You came to this realization because the BPS spin on ME patients did not fit your values as a doctor. However, the general public respects doctors’ opinions, especially on subjects that they do not know much about, such as ME, and many people will simply take their word for granted (unless it influences them directly in a bothersome way, such as Covid related restrictions).

While activism needs to change minds on ME within medicine, it also needs to do so with the general public, and that is difficult if it abides by the mainstream medical opinion it has been presented with. Throwing a cup of coffee and similar actions might be seen as an act of frustration indeed, but people will side with medicine and see them as misguided rather than legitimate. I doubt that they will seek to understand the reasons behind them.

I don't even think it is that anymore tbf. People are just choosing who it's best for themselves to be 'friends' with. And the rhetoric is programmed through other avenues too. And most just can't be bothered with justice for others anymore as they think they've got a hard life so why should they care. Nothing also cuts through about how bad it really is - they think we are whinging about small things because none of these messages from patients get through and it's just a big of fatigue after all.

I think the general public thinks 'don't want to get involved', particularly when they think they don't want to end up in the same situation as you. They think it is people being 'political' rather than scandal and being hurt because what is said is technical on the 'issues' rather than drilling out how it all comes together to remove rights and leave people in some pretty dystopian situations.

Most people don't complain about the NHS because they are warned not to from an early age because it will close down your access to treatment. BPS tentacles now reach all the way through education, social care, jobs etc. A most common sudden about turn with my friends happened when they had kids at school or became a manager and were given the programming of 'send to mental health' for any old thing (it's not your job to decide it's not being the line). As long as they think it is just 'a bit of a rubbish GP' and 'under the weather' they really aren't going to get the magnitude.

The ones who chose to work in allied professions were lost many years before that. Spouting the party-line seems to be a key performative behaviour to get oneself promoted in those. I think the 'embedded CBT' (from a 2 day course making them an expert in 'mental health') and certain lines is more about as they say it they internalise and believe it than passing the message onto us. Like companies who have 'mottos'.

We need to actually find the people who are independent of it/not somehow feeling associated to defend or stay silent so not to agree in some way. Whole family often won't speak certain things if a member is in the NHS or a teacher at a certain level or social worker. And in certain parts of the country that is bigger % of people than others.

Sadly there are too many of a certain personality type that a video of people being upset or desperate wouldn't do us any favours that I think there is a fine line ever here. But a bit of outrage for someone's story (and lost productivity/independence that needn't happen) along with a nice total of what some of these BPS-and associated in other professions have earned for what (recycled 'research', soundbiting the same wind-ups) over the years feels the button (so people know that it isn't a case of treating us better would take money away from another deserving cause), that has come from their taxes etc.

 

[Hutan]

before most people are sufficiently aware of ME to understand why a researcher was thrown a coffee mug at.

Or turned their chairs upside down, rather than throwing one at the speaker. Then there would be no accusation of physical violence, though it would be wise to record video footage of it!

I don't recall the details well, but I'm pretty sure that the mug was not thrown at anyone, researcher or otherwise. I vaguely recall that the mug was assisted to fall to the floor as the person was leaving. My memory of the account is that, as an act of physical violence, it was of the mildest sort. I actually find the incident quite useful - we can say 'this is the worst incident we have any evidence for, and it is laughably tame'.

I always think back to the 2014 Bristol CMRC conference where Peter White was qui9te unspeakably rude about patients to an audience which was half professionals and half patients. As I set there I thought. to myself why the hell aren't people 'throwing mugs'. It was absurd - inhuman. I kept my cool only because I had did not yet know the ground. If it was now I would have given what for. I simply do not understand why someone should not express their feelings in this way. I have seen it happen at medical meetings and in most cases it was very instructive and chastening. The idea that somehow this is 'bad form' is crazy. Doctors are supposed to be sensitive to these sorts of emotions - what the heck!!!

This comment brings to mind the time I had just been elected onto the ANZMES (the NZ charity for ME/CFS) committee at the AGM. And Dr Ros Vallings started going on about the ME personality and quoting Dr Partinen during her annual presentation. I was appalled - this was the patient charity's medical advisor, the only doctor in NZ claiming expertise in ME, saying things that, if said about nearly any other disease or community of people would result in complaints and make holding the advisory position untenable. And everyone in the audience, all the people with ME/CFS, the parents sitting with their children who had ME/CFS, all the people delivering support services, they all just nodded. When I politely asked was there any evidence for Vallings' statements and noted the harm that could be caused by incorrectly suggesting that ME/CFS is caused by a problematic personality, it's not an exaggeration to say the crowd turned on me. One man told me about the personality flaws of his wife who had ME/CFS and was too sick to make it to the meeting. People at the meeting chastised me after the meeting, telling me to not be so sensitive. The next day, I was told that I had been voted off the committee because I had been aggressive - before I had even had a chance to attend a committee meeting.

The meeting had been recorded, and I wanted the President, who had left the AGM before Dr Vallings' talk, to view the video so that she could see that I had not been aggressive. But, the video somehow was "lost" and the meeting was never put on You Tube as had been intended. Professor Tate, who was at the AGM, stood up for me, telling the committee that I had not been aggressive. But, that counted for nothing. Dr Vallings' authority had been questioned and the majority on the committee, many of whom hadn't been at the AGM, would not go against her desire that I not be on the committee. That incident had a big impact on me, in understanding just how marginalised I had become when I developed ME/CFS, and how people will straight-out lie to avoid feeling embarrassed or uncomfortable.

One point from the incident is that many doctors and the BPS researchers are a big part of the problem, yes. But the patients who happily nod when someone in authority says something like patients' defective personalities have contributed to them being ill and who tell anyone questioning ideas like that to be quiet, they are also a big part of the problem. If we can, we should challenge unevidenced statements and prejudice. The more of us who do that, the easier it will be.

Another point is that even a question, delivered politely and not at all laboured, just having the temerity to challenge someone who regards themselves as an expert and who many others see as an expert, was effectively spun as aggression. People who challenge patient charities to be better are labelled as ungrateful and unreasonable. We are painted as rude and aggressive and vexatious. I think we need to take reports of patient misbehaviour with many grains of salt.

 

[Jonathan Edwards]

I don't recall the details well, but I'm pretty sure that the mug was not thrown at anyone, researcher or otherwise.

this is the quote we are given, so that seems right:

Yes, by accident. Because I threw a coffee cup on the floor in anger on the way out, which ricocheted into the glass door. However, a door was not "kicked in" as I see many claim. And the door was only "smashed" at the bottom.

To me that is entirely reasonable in the circumstances.

 

[Andy]

So long as no actual harm is done to anybody and nothing illegal is done, then I think anything that brings more attention to the fact that there is another side to the BPS story is ultimately good for the overall cause. Even when the BPSers hold up exaggerated examples of the destruction caused by ME activists and make fake claims about death threats, they are themselves are highlighting that there are people who do not agree with them.

While I do not doubt that it must get tiresome every time that a representative of one of the Scandinavian ME charities has to talk to the media and deny or explain the truth of the latest claims from 'the other side', that is actually a publicity opportunity for the community that they might otherwise not have had.

Also something to keep in mind - we are extremely limited within the ME community with the number of advocates that we have. The subset of patients who have the energy, time, and other resources as well as the inclination to advocate for themselves and others is very small, so appreciating their efforts, especially if the rest of their work is something that you agree with, rather than focusing on one small incident and continually criticising them for it might be the more constructive way to go.

 

[Trish]

No one has said the cup was thrown at the speaker. The tweeter who threw the cup made it clear it was thrown at the floor on the way out.

I don't think anyone has suggested throwing hard objects 'at' speakers would be a good idea. The point is harmless physical or vocal actions can be part of advocacy in such situations. Acts of violence against the person are a different category and I would never advocate that.

I do see value in demonstrations of anger, disgust, frustration - call it what you like - at talks by BPS people. That could take all sorts of non violent forms. For example, dozens of people booking to attend using wheelchairs or lying on the floor, booking lots of seats and putting on each empty seat a photo of a pwME lying in bed with a label explaining that BPS treatment resulted in them becoming bedbound. And of course well prepared questions challenging the research.
I wouldn’t personally recommend pouring coffee on the floor - think of the cleaners having to clean it up!

 

[Sid]

and everyone in the audience, all the people with ME/CFS, the parents sitting with their children who had ME/CFS, all the people delivering support services, they all just nodded.

One man told me about the personality flaws of his wife who had ME/CFS and was too sick to make it to the meeting.

This sort of meekness and docility when confronted with pseudoscience is unfathomable to me. To see some people tone-policing is really disappointing. Our lives are destroyed because of these people's "research". We are being systematically destroyed (and in some cases [e.g. very severe ME/CFS] killed by state institutions) precisely because they are not afraid of our pushback in the slightest. Despite all their protestations to the contrary, they know that we're harmless.

 

[TiredSam]

The coffee cup thing happened six years ago:

Post #145 here:

https://forums.phoenixrising.me/thr...ian-research-seminar.43876/page-8#post-730222

Chalder responded to a question about research by threatening police and having the questioner thrown out, just like Crawley did with David Tuller who tried to ask a question at a lecture she was giving. You can't win with these people, and there's no point in hand-wringingly cautioning each other or acting as if the BPS mob's abusive attitude is anything to do with how we ask questions or express our frustration at the situation we have had to endure at their hands. I refuse to be conditioned in this way. One coffee cup becoming a hapless victim of gravity six years ago - really.

 

[TiredSam]

Claims of being bullied or harassed rarely seem to be subjected to scrutiny, the instinctive reaction of most decent people is to jump to the defence of the victim without it occurring to them that they have just been lied to. Who would believe that there are people who behave like that, especially if the liars have managed to cultivate an air of status and respectability? Well the BPS crew know it works and it's a tool they are happy to use. They are not just abusing us, they are taking advantage of everybody's good nature.

Stories like this are increasingly in the news lately - instances of angry white women calling the police on black people minding their own business can make the headlines, as can gamers sending SWAT teams to each other's houses. So it wouldn't theoretically be impossible to get a story on how we are maligned by angry BPS fraudsters, especially now that anyone can pull out a phone and film what really happened.

It's also about time the police scrutinised such claims more thoroughly, especially if they've got time and it isn't an emergency situation, and charged a few people with wasting police time.

 

[TiredSam]

Rather than hoping that the police may charge people with wasting their time and send them a bill for the man hours wasted policing their events, we should also bear in mind that they may enthusiastically side with the BPS brigade and get up to this sort of behaviour:

https://www.theguardian.com/uk-news/2020/oct/28/secrets-and-lies-untangling-the-uk-spy-cops-scandal

Are we all sure we know everything about our partners?

I'm sure it'll all come out in the public inquiry into ME in about 30 years from now. In the meantime I'm going to be taking a long hard look at some of my fellow committee members.

Yes, I know, I should have stopped posting two posts ago. Oh well.

 

[Solstice]

So it wouldn't theoretically be impossible to get a story on how we are maligned by angry BPS fraudsters, especially now that anyone can pull out a phone and film what really happened.

Might actually be an advocacy opportunity. They complain about a cup getting broken while our lives are. Selling M.E.-cups or whatever. A whole string of us (trying to) knock over cups while lying in our beds or whatever. I don't know, too tired to think of something witty+good.

 

[Jonathan Edwards]

What a good idea merchandise mugs.
Yoiu could have one saying 'Thrown for ME'.

 

[Andy]

Or perhaps unbreakable mugs?

"These mugs are so tough, even chronically ill ME patient activists can't break them!"

"With these unbreakable mugs you too can provide a safe space for all BPS researchers!"

 

[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/

Rolf Rønning, Professor Emeritus at Inland Norway University of Applied Sciences has a response today to the article in Morgenbladet. The opinion piece is behind paywall, so here's a summary:

He says the article about an ME seminar with guards and police on stand-by fits into a well-directed scheme from those who promote a psychosocial approach to ME, led by the organisation Recovery Norge (RN). They have for long managed to present themselves as victims of an aggressive and violent patient group, but he misses documentation of any violent behaviour.

He says it's been documented beyond reasonable doubt that ME is a biomedical disease. and refers to the 2015 report from NAM as well as the more recent NICE guideline.

If the RN movement had kept to themselves, he believes ME patients would have left them alone. But when RN actively are selling their outdated knowledge and have peers in National Competence Center for CFS/ME it becomes a problem.

He further writes that the treatment of ME patients in Norway is the story of a group of patients who have been subjected to mistreatment and abuse for years.

What the RN movement has reason to fear isn't violence and abuse from ME sufferers, but acceptance that RN's understanding of knowledge is outdated.

https://www.morgenbladet.no/ideer/d...gerne-av-kognitiv-terapi-mot-me-er-ikke-ofre/

 

[rvallee]

With regards to an act of activism, I think it would be amusing if people stood up in the middle of an awful talk and spilled their coffee on the ground at the same time. Or turned their chairs upside down, rather than throwing one at the speaker. Then there would be no accusation of physical violence, though it would be wise to record video footage of it!

This is a great idea. Only ridicule works against ridicule. They want to pretend they are being assaulted by savage vandals who can barely walk? Let them, all they ever had is the fact that we can't even get out to counter their lies.

 

[rvallee]

The coffee cup thing happened six years ago:

Post #145 here:

https://forums.phoenixrising.me/thr...ian-research-seminar.43876/page-8#post-730222

Chalder responded to a question about research by threatening police and having the questioner thrown out, just like Crawley did with David Tuller who tried to ask a question at a lecture she was giving. You can't win with these people, and there's no point in hand-wringingly cautioning each other or acting as if the BPS mob's abusive attitude is anything to do with how we ask questions or express our frustration at the situation we have had to endure at their hands. I refuse to be conditioned in this way. One coffee cup becoming a hapless victim of gravity six years ago - really.

And I was reminded a few days ago that the death threats seem to have come from a single instance of a comment on PR clearly posting song lyrics. IIRC a Bob Marley song about political oppression? Which is fitting and appropriate. Just like the "trolling" tweets cited in the Reuters report were completely benign and no reasonable person would ever agree, in a neutral context, that this is a concern to anyone.

It would be great if all those "incidents" could be listed in the same place to easily post whenever lies come up. We already have something similar about private correspondence of BPS ideologues trying to get people fired for simply pointing out flaws in their work. Everything they say about us is projection of things they did themselves. And the thing is that all of this basically seems to amount to a handful of things, all benign. Shouldn't be too hard to put together. It's the ambiguity that makes it work. It can be removed.

 

[rvallee]

Or perhaps unbreakable mugs?

"These mugs are so tough, even chronically ill ME patient activists can't break them!"

"With these unbreakable mugs you too can provide a safe space for all BPS researchers!"

I like where this is going. This is smart disinformation countering.

Also: the "we will rebuild" chair meme I posted here is well-known and fits well here, symbolizes something that should have been a destructive storm ended up being a small breeze

 

[TiredSam]

What a good idea merchandise mugs.

"Who's really being mugged?
Time to spill the beans."

 

[EzzieD]

And I was reminded a few days ago that the death threats seem to have come from a single instance of a comment on PR clearly posting song lyrics. IIRC a Bob Marley song about political oppression? Which is fitting and appropriate. Just like the "trolling" tweets cited in the Reuters report were completely benign and no reasonable person would ever agree, in a neutral context, that this is a concern to anyone.

If it's the same post I remember, it was a verse from a Bob Dylan song, Masters of War, and the verse was aimed at Wessely:

And I hope that you die
And your death'll come soon
I will follow your casket
In the pale afternoon
And I'll watch while you're lowered
Down to your deathbed
And I'll stand over your grave
'Til I'm sure that you're dead

https://www.azlyrics.com/lyrics/bobdylan/mastersofwar.html

I read some time later that Wessely appeared on a radio interview in which he mentioned that post in the context of it being a 'death threat'. I can't find a reference to that show now but a google turned up this page in German https://www-cfs--aktuell-de.transla...tr_sl=de&_x_tr_tl=en&_x_tr_hl=en&_x_tr_pto=sc , from which I took this translated extract:

Simon Wessely claims to have received death threats from "extremists" among ME/CFS patients. And the only evidence he or the BMJ can muster of these "death threats" is the last verse of that very Bob Dylon song from The Masters of War ...

I remember having a conversation years ago with members of a 'skeptics' site who presented me with that post as 'positive proof' of a 'death threat' against Wessely. They were very deflated when I told them that was simply a verse from an old Bob Dylan song - they'd never heard of it before. Really, if that's the best someone can come up with as a death threat against them, that's pretty poor!