Norway: Article about ME seminar with security

can't something be looked into about the 'follow the money' type audit trails for it too? I mean I'm almost sure it might already have been raised or done but intrigued to know how the set-up works there given it seems pretty 'pyramidy' which is unusual for standard genuine health treatments.

 

Aha the classic 'darned I should have remembered to take my heavy coat/bag etc off the back before I stood up' issue perhaps too?

 

Those are the only known incidents. No evidence of any actual incidents has ever been shown, this is all using inuendo to suggest the worst, leaving people to fill in the blanks however they feel like (with definitely an inclination to think it's as bad as bombs in the mail).

Maybe those are not the incidents they present as storms in a teacup. Maybe they are. But from the start it never mattered, there never was a need to do anything more than allude and wink-wink with a synchronized eyebrows dance.

But this is entirely on brand with the history, this pattern of taking completely banal non-events, or perfectly normal and proper things like criticizing bad research, and keeping all the details of unspecified allegations out while recklessly comparing us to vandals, even borderline terrorists.

From people who moved from allegations of death threats, then of harassment, then having been debunked by a panel of judges who, shockingly, wanted evidence, they moved on to allegations of trolling on the internet, then admitted it was all false.

So making accusations of rampages, throwing chairs or harassing people out of dropped cup and a chair that fell back is frankly expected. The pattern of behavior leaves this as the likeliest explanation: when in doubt, they probably lied about it. Because it works for them.

Not that any of this is any relevant in trying to apply this unspecified behavior of unknown individuals to people's right to protest mistreatment, all accurate and factual, and strongly alluding and hinting and suggesting that all millions of us should be condemned to endless discrimination and lies for it. If anything, every one of those people have far more in common with Andrew Wakefield than we do, we are not a licensed profession, have institutions and a legally-binding framework. We are millions of independent people with no more in common than people who have freckles. But there is no such thing as guilt-by-association with such a large and diverse group, literally made of millions of people.

We have every right to be angry anyway. Even angrier than this, but we know they use our vulnerability to beat us, never hesitate to.

 

So, again, no way of knowing if those are "the incidents" they are trying to make into tempests in a teacup, but those are such incidents and amplifying those to allegations of far worse behavior has been consistent from the start. But if so, the tempest was a teacup. Or close enough.

This appears to be the "cup" and "door" incidents, the same event:

https://twitter.com/user/status/1584250296100085760

https://twitter.com/user/status/1584495648702750720


This "incident" follows the usual pattern of making false claims in public, which should be disputed, truth matter, then refusing any questions or comments and throwing out whoever asked the question. There are several such incidents, where even the simple act of asking questions is met with ejection.

 

this was Chalder, not Crawley. I have also confused the two at times.

 

Thanks for looking it up. The "funny" thing is we're on the defensive again disputing their bullshit and there really is no way to come out of these sorts of arguments looking good bar maybe ridiculing it beyond recognition.

 

I think that debunking will work over time. But that's why they only ever use hints and allusions of unspecified behavior, can't counter a made-up story if it's made-up. Just like the fake threat letter.

The only way we seem to know anything about those is from the people present, so that's hard.

But it really does appear as if no one gives a damn whether the accusations are true. Even when presented with clear debunking. The demonization campaign against the chronically is, ironically, one of the most wildly successful thing medicine has ever done, in terms of achieving all goals. It doesn't even matter what's said, people fill in the worst all on their own.

At some point it will look completely revolting, so it's still worth debunking. But clearly facts are completely irrelevant to an emotional struggle.

 

People misrepresenting the incident, especially to try to smear a wider group of patients, is obviously terrible, but it's also important to recognise that throwing a coffee cup in anger is a bad thing to do and not the way people should behave when challenging researchers, no matter how those researchers have behaved. If patients aren't confident that they can control their temper then they should try to avoid placing themselves in advocacy situations they might find infuriating imo.

 

Thank you! Not the first time I've done this. Good to hear I'm not the only one.

 

Throwing a coffee cup in anger after you've overlooked the smoldering ruins of what's left of you life after it has been demolished by treatments, neglect, demonizing and everything more caused mainly by these people is very mild. As long as they don't actually threaten or harm these so called therapists that did such things and more to us, it's all good with me. They're gonna paint us any way they like us, so why would we care at this point?

 

The double standard of behaviour between the HIV/AIDS activists and ME activists should be noted. Who sets the standards for how a patient should behave in any given situation? If we accept the current interpretation certainly in the media on how the HIV/AIDs activists challenged researchers and scientists and then compare it to a person with ME acting alone and being physically confronted and removed from a meeting and throwing a coffee cup in a moment of unplanned frustration then we are applying a very high bar to how we behave.

I'm not prepared to accept this standard. Things happen. This was minor. That the opposition would seek to blow it out of proportion is where the fault lies.

 

Do you not think it has helped powerful people dismiss and stigmatise the patients criticising them?

Do you not think that a culture where patients are all good with behaviour like this will make progress more difficult?

In-groups of people can feel a sense of loyalty and understanding for the shared hardships they face that makes them dislike critical judgements about others within the group, yet leaves them happy to judge outsiders. I think that this is an important part of the way many of those within EBM have responded to justified criticism of their colleagues and the culture they are a part of. An instinct towards some form of tribalism may be natural, but it needs to be fought against, especially amongst groups that hold power over others.

We don't have much power, but I still think that it's important to try to hold ourselves to the same standards we want to hold others to.

If Chalder turned up at a patient conference, didn't like what she heard and didn't feel her questions were being answered, so made a scene, threw and mug in anger and damaged a door, would we think that this was bad behaviour? Should we judge others or not?

I judge the behaviour of people like Chalder, and draw attention to the problems I find there. I think that the problems with her behaviour are more serious and important than this example of someone throwing a mug, but that doesn't mean I think that there's no problem with throwing a mug in anger at an academic conference.

I agree with a lot of that, but also think that we need to recognise the actual situation we're in, the current culture around ME/CFS, broader cultural assumptions about 'activism', etc. We're in a very different situation to HIV/AIDS activists and approaches that they took often will not work for us. To me it seems that we have little leeway. It's absolutely right to draw attention to the unfair way ME/CFS activists can be judged, but if we want to avoid making things worse I don't think we can wish-think that if HIV/AIDS activists were recognised as being justified in doing something 40 years ago, us doing a similar thing now will be beneficial.

 

No and no.

The powerful people that have been screwing us over have done so for about 3 decades and have managed to invent ways to frame us as malignant activists or terrorists even without any help from us.

On the second paragraph I think that a culture where we are all quiet, obedient and subservient to them helps them a lot more than getting angry at them ever could.

 

I certainly don't want anyone to be quiet, obedient and subservient.

Researchers have been able to spend decades distracting attention from justified concerns about their behaviour by pointing to and exaggerating examples of behaviour from patients that that is not worse than we saw from AIDS activists. It has been a really valuable tool for them and any bad behaviour from patients makes it easier for them to get away with. I worry that some people here do not appreciate how successful a tactic it has been for them. Why behave in a way that makes it easier for them to make our lives worse? Why not judge the behaviour of those who make it easier for them to make our lives worse?

I'm sure I've made bad mistakes that have made life worse for other patients - and I think I should be judged by myself and others for this. We need to be critical with ourselves and others to try to improve things imo.

Also, regardless of all else, it is just bad to throw a mug in anger at an academic conference.

If this was distorted and turned into a media story, that is a reflection of the stigma around ME/CFS, but that can be criticised without pretending that there's no problem with the mug throwing.

 

Oh dear. Strikes me as maybe just a tad antebellum.

 

Got to admit that I don't get the reference - the top google result was for a horror film, so that doesn't sound good.

 

https://www.merriam-webster.com/dictionary/antebellum
Definition of antebellum
: existing before a war

Not sure if that's helpful.

 

Sorry. I try not to post as much because I have trouble anticipating how people interpret what I write.

Antebellum. I'm afraid it's a US thing. Think "Gone With The Wind". A sort of built in cultural bias that helped sustain slavery in the US decades after it was abolished in the UK and many other European contemporaries - up to and even after the US civil war.