@ScottTriGuy
That seems unlikely to me. There have been misrepresentations from them in the past, but they've generally not put a lot of time and effort into it.
I think that any implication of fabrication is likely to be used against us and presented as evidence of an unhinged conspiratorial mentality... but this is complicated. It seems Crawley has lied about the Times 'harassment' cover being a threatening e-mail that she had received, and there was an example someone posted of an anonymous commentator seeming to have fabricated a patient call to send threats to Wessely (under the Science Based Medicine PACE blog - just found
the link). I think it's best to be cautious about these things.
Any unfounded speculation about anyone connected to the BPS crew making up examples of abuse could be quoted by a journalist looking to make patients seem unreasonable. This is an area where it's vitally important that we stay cautious and grounded in the evidence with the claims and suggestions we make. Even with the Crawley case, where the evidence appears to be pretty clear-cut, I feel hesitant about mentioning it just in case there's been some bizarre series of co-incidences and misunderstandings.
There are going to be nasty, unpleasant and stupid people who get ME/CFS, just as there are people who get any other condition. A computer game developer got death threats for not
including butterflies in their computer game - I'm sure that some patients will have behaved in an abusive way towards those like Wessely.
I do see some stupid things posted on twitter. It's easy to imagine people like that sending abusive e-mails and imagining that they were engaging in useful advocacy.
Any time there's an attempt to challenge abuses of power, there will be people supportive of the movement who behave badly or unreasonably. It's not practical for everyone else to then spend their time investigating every possible instance of this and condemning those individuals deserving of condemnation. We've got too many other important things to do. I'm sure that there are thousands of ME/CFS patients who have posted a misguided message somewhere on the internet at some point in their lives. It's much more important to investigate the misguided claims and actions being made by authority figures, and condemn them when they deserve condemnation. The different levels of power and authority different people have should affect our commitment to challenging their bad behaviour.
2. The ME community needs to first make a public statement distancing ourselves from the harassment of BPS researchers, and was at fault for not doing so when they happened. Specifically a single instance of a nasty YouTube video making credible threats against Simon Wessely that was briefly posted sometime between 2009 and 2011 and quickly taken down. And other evidence she says she has received in confidence.
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My problem with this is that I see no reason why the 'ME community' should have to apologise or take any responsibility for something criminal done by one or a few shadowy figures who may or may not have been part of the ME community and who made threats most of us were completely unaware of. Nor do I see why it is up to the law abiding majority to have to pro-actively 'distance ourselves' from a few unknown criminals. The fact that the media or anyone chooses to associate the rest of us with criminals is ridiculous.
She didn't say 'apologise', but 'condemn' - 'apologise' would annoy me. I do feel like VES's piece rather side steps the fact that almost no-one seems to have seen the video she described, or any other evidence of death-threats, so it's difficult to see how any united statement about it could be made.
When these stories were being promoted Charles Shepherd was making lots of condemning statements to the media. I understand why he did so, and I'm supportive of condemning any individual patients who are behaving badly, but as a media strategy I got the impression it may have been unhelpful - seeming to validate widespread coverage of the bad behaviour of a few individuals on the internet that was then used to smear and promote prejudices against a wide group of patients concerned about the quality of work coming from Wessely and his colleagues, and the ways in which their lives were being made worse by it. Maybe it would have been better to only speak about specific individuals? I feel like that vaguer the accusations are the more they feed in to prejudice and stigma.
There was a clear strategy to conflate any abuse PACE/etc receive with legitimate complaints about their work. They had positions of authority they could use to do this, and I don't think that any plausible actions by patients would have been able to prevent this smear campaign when it was at its peak.
Also, I think it's worth recognising that the poor impression many journalists have of ME/CFS patients is influenced by the fact that the UK media has spent much of the last decade promoting misinformation and prejudice. That's inevitably going to lead to animosity. I'm sure that some patients will have responded to this in stupid and counter-productive ways, but that's not something advocates are going to be able to control. It's just random people who are falling ill and then being justifiable outraged by the crap work a lot of journalists do - that's always going to lead to some problematic responses.
Also, we have things like the recent Kate Kelland piece:
https://uk.reuters.com/article/us-h...mid-patient-activist-complaints-idUKKCN1MR2PI When we have people conflating Courtney's careful and reasonable complaints (the substance of which were entirely ignored) with activists over-riding scientific evidence with unreasonable behaviour then this will encourage the very worst behaviour. There will always be propagandists in the media who are happy to stigmatise minority groups.
My rule of thumb for effective advocacy is: if it feels good, it's probably not useful. If it feels like a boring chore, you might be doing something helpful.
I think the responsibility for changing the narrative on harassment lies with the BPS people and the SMC who have, as a deliberate policy to discredit any criticism of their 'science' made the conscious decision to use the actions of a few criminals to distract from genuine criticism of science. That was their choice. Sharpe and Crawley do it all the time. It was done recently when the news of the Cochrane review being challenged came up. Harassment had no relevance to the Cochrane case, but the media egged on by a chum of Wessely, and presumably on the advice of the SMC chose to tell it that way.
I can't see how a public statement from the ME organisations now distancing the ME community from a few nasty criminal acts that have nothing to do with us will help. It's asking us as innocent sufferers to take the blame for something we had nothing to do with and that has gone on being used by the BPS crew as a smokescreen to perpetuate false information about us as people and our illness and to protect their careers.
I largely agree with that.
I would also say that if you see a patient behaving in a way that could be unhelpful then it's worth letting them know. Some people are really clueless. I also think that a lot of patients can think expressing their pain and anger about their mistreatment will persuade others to take the problems around ME/CFS more seriously, and I get the impression that this is not right. It is shitty that lot of people who fall ill and lose so much in their lives really need to also quite rapidly learn that they are now part of a stigmatised minority group that needs to be very careful and cautious in order to be taken seriously.
Is it just me or does this analysis of the media message situation come across as if it was written a couple of years ago? Or am I just being naively optimistic in thinking that the situation nowadays has improved since then?
I'd have thought the same other than that recent Kelland piece, which seemed to take us years back and completely ignore all of the substantive problems with Larun's work, PACE, etc, as well as presenting Blakemore as an independent expert despite him having led the MRC when they funded PACE, and the MRC now relying on Larun's work to evade criticisms of their decision to fund PACE.
Hopefully that was just a blip. I does seem like we've made progress more generally.
