Norway: Article about ME seminar with security

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.

 

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!

 

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.

 

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.

 

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.

 

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.

 

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.

 

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.

 

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.

 

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.

 

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

 

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!"

 

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/

 

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.

 

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.

 

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

 

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

 

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:

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:

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!