Special Report - Online activists are silencing us, scientists say Reuters March 2019

@Trish Excellent comment. Thanks.

For anyone considering submitting their comments as a letter to the Editor (for publication) the address is letters@thetimes.co.uk

You must include your full name, address and tel number. Also best to keep it less than 250 words.

Of course, if you happen to be an emeritus Professor of medicine the probability of getting your letter published may be greater @Jonathan Edwards

I’ve emailed Carol Monaghan, Nicky Morgan and Ben Lake to suggest a multi-signatory letter to the editor from MPs who supported the motion in the ME debate.

[Edit - typo]
 
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The Reuters story has been picked up in Denmark. My impression is that some people prefer that this article isn't shared, so won't link to it.
The article presents the story as if activists have gotten the Danish Parliament (who recently voted for excluding ME from the umbrella term "functional disorders") to oppose science.

Professor Per Fink is interviewed. He says the activists are angry because he said some CFS patients can be cured. The activists thought that he therefore didn't recognise that the illness is serious. He worries for the recruitment of young researchers to the field, because it's so tough.

Most of his patients are happy with his treatment, which is CBT and GET. These treatments are the only ones with documented effect. He is shocked that the Cochrane review on GET and ME is temporarily withdrawn (according to the article). "GET is the most effective treatment we have, and I'm truly shocked that Cochrane lets itself be pushed by activist groups", Per Fink says.

"It is very problematic that politicians rejects the science and prefer to believe what comes from activists. It's a sign of fact denial", he continues.

He also tells about Unrest, that he was made into a villain. "They have used different pieces from different TV-programmes I've participated in, and put it together in a way that attributed lots of opinions I don't have".
 
Kalliope said:
He says the activists are angry because he said some CFS patients can be cured.
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Just quietly propagating the idea that ME patients do not want to get cured. These people have really, really not an inch of ethics at all. If they had, they wouldn't spread clichés that are detrimental to patients.
A few years ago, in France, a schizophrenic patient killed two nurses in a psychiatric ward. Many psychiatrists came to speak to the media, saying that this was tragic but extremely rare, and that people suffering from schizophrenia are more often victims than attackers. That's what psychiatrists are supposed to do, protect their patients from abuse.
Here, the abusers are the psychiatrists.
 
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edit: I don't know how much this post is the manifestation of a bad mood.

Robert 1973 said:
I’ve email Carol Monaghan, Nicky Morgan and Ben Lake to suggest a multi-signatory letter to the editor from MPs who supported the motion in the ME debate.
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Could that play into a narrative of dangerous interference in science? When it's been sold as a story of 'activists vs science', we're probably best off making it clear that it is 'poor science being challenged with the assistance of scientists'.

Kalliope said:
The Reuters story has been picked up in Denmark. My impression is that some people prefer that this article isn't shared, so won't link to it.
The article presents the story as if activists have gotten the Danish Parliament (who recently voted for excluding ME from the umbrella term "functional disorders") to oppose science.

Professor Per Fink is interviewed. He says the activists are angry because he said some CFS patients can be cured. The activists thought that he therefore didn't recognise that the illness is serious. He worries for the recruitment of young researchers to the field, because it's so tough.

Most of his patients are happy with his treatment, which is CBT and GET. These treatments are the only ones with documented effect. He is shocked that the Cochrane review on GET and ME is temporarily withdrawn (according to the article). "GET is the most effective treatment we have, and I'm truly shocked that Cochrane lets itself be pushed by activist groups", Per Fink says.

"It is very problematic that politicians rejects the science and prefer to believe what comes from activists. It's a sign of fact denial", he continues.

He also tells about Unrest, that he was made into a villain. "They have used different pieces from different TV-programmes I've participated in, and put it together in a way that attributed lots of opinions I don't have".
Click to expand...

A lot of harm can be done by abusive messages to PACE researchers from just a few people on twitter, which can then be used to present legitimate advocacy efforts as extremist interference in science.

Having patients raise concerns about poor quality research and pushing for changes within medicine, with political assistance, is going to seem weird to lot of people, especially when we're encouraging more sceptical views about treatment options. Even when we're entirely in the right some people will view it as a worrying interference with 'science' - which is something many people have faith in without an awareness of the problems surrounding the 'replication crisis', tollerance for poor methods that happen to be cheap, etc. What we're doing is going to be embarrassing for a lot of influential and respected medical figures, and they and their colleagues would love to be able to pretend that we're making a fuss about nothing. When they're also able to point to abusive messages, or even just slightly misguided comments, it plays into pre-set assumptions about know-nothings interfering with the work of wise scientists. Most people are not going to check the details of a statistical analysis, they're going to see a Professor talking about the dangers of stigmatising mental health interventions, and then someone swearing at him.

It feels like we're reaching the point of about equal levels of international press coverage of some insulting tweets and 8 years of effort to draw attention to problems with the PACE trial. And in response to this, some people have decided it would be a good idea to send more insulting tweets, and Quasar sent out clear abuse.

The people we need to be reaching out to and persuading at medical institutions are also members of the public and I fear they're likely to be influenced by this stuff. I get the impression that lots of senior figures don't really take the time to look at the details of things, but are guided by their hunches and by a desire to fit in with what is seen as the 'respectable' position. That's one reason why it took so long for us to even start to get traction with the clear problems with PACE: we already had so many prejudices against us. I think there's a real possibility that this sort of media coverage, and the actions of a few people on twitter, is going to do real harm in important areas where it shouldn't matter at all.

Hopefully I'm wrong, but I do worry that some people are underestimating how much we already had against us, and how well this stuff played into the preformed assumptions and prejudices of those we will need to get on our side in order to make progress. Because I do not share these assumptions and prejudices I think that I underestimated what an effective piece of propaganda Kelland's piece was until I saw how other people were responding to it. An effective propaganda piece needn't have been a serious problem, but the way some people have responded to it has made things worse. It's just been amazing to see that people will tag in Kate Kelland when they send counter-productive tweets - what is the plan with that?

I also get the impression that some patients are in a bit of a bubble with PACE, and do not realise that we still have a lot of careful work to do to make sure the problems with it are properly acknowledged. We never won on that, we just started making some slow progress. People choosing now to express their anger is just going to make things more difficult and create more suffering - why do that?
 
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Kalliope said:
The Reuters story has been picked up in Denmark. My impression is that some people prefer that this article isn't shared, so won't link to it.
The article presents the story as if activists have gotten the Danish Parliament (who recently voted for excluding ME from the umbrella term "functional disorders") to oppose science.

Professor Per Fink is interviewed. He says the activists are angry because he said some CFS patients can be cured. The activists thought that he therefore didn't recognise that the illness is serious. He worries for the recruitment of young researchers to the field, because it's so tough.

Most of his patients are happy with his treatment, which is CBT and GET. These treatments are the only ones with documented effect. He is shocked that the Cochrane review on GET and ME is temporarily withdrawn (according to the article). "GET is the most effective treatment we have, and I'm truly shocked that Cochrane lets itself be pushed by activist groups", Per Fink says.

"It is very problematic that politicians rejects the science and prefer to believe what comes from activists. It's a sign of fact denial", he continues.

He also tells about Unrest, that he was made into a villain. "They have used different pieces from different TV-programmes I've participated in, and put it together in a way that attributed lots of opinions I don't have".
Click to expand...
I just stumbled across that one, at least I hope it's the same one and that there aren't several equally appalling examples of 'journalism' circulating.

They really swallowed the Reuters piece hook, line and sinker and actually managed to make it worse - quite a feat! - by adding the "politicians cave in to patient pressure" angle. A very disappointing piece of work from that particular science news outfit, normally they at least try to put two sides and assess matters critically, not this time.

Does anyone have the energy to tell them, politely and rationally, what a poor piece of biased 'science' journalism this is?
 
Jonathan Edwards said:
Sir Simon Wessely, of King’s College London, said that he had also stopped researching CFS treatment after “relentless internet stalking”.
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Is he on twitter and other internet outlets voluntarily or is someone forcing him to be there?

Does he understand the notion of the WORLD WIDE WEB wherby if you are on twitter you have invited people to communicate with you?

Or does he just prefer to be online spouting his voodoo nonsense unchallenged by real evidence?
 
Esther12 said:
Could that play into a narrative of dangerous interference in science? When it's been sold as a story of 'activists vs science', we're probably best off making it clear that it is 'poor science being challenged with the assistance of scientists'.
Click to expand...
I guess it could. But I welcomed the House of Commons debate and I was disappointed that it didn’t get more coverage in the media.

Sadly, ME research has become a political issue, and I therefore think it is right that MPs should represent the concerns of their constituents who have been so badly served by Government departments and agencies.

If MPs wrote a letter which resulted in a public discussion about whether politicians should get involved in medical research issues, I would welcome the publicity about the issues – provided the MPs are well enough informed to make the right arguments. Let us not forget that MPs have got involved with dementia and brain cancer research, resulting in huge increases in (ringfenced) funding.

But I do understand your caution.

I also agree that it is unfortunate that a small number of people persist with foul-mouthed personal insults on Twitter, which do us no favours. Although I would hope that most thinking people would consider the reasons given, along with the sample tweets, to be a rather feeble and disingenuous excuse for leaving ME research. I mean, why didn’t he just close his account or make it private? And don’t most psychiatrists deal with a lot worse than this on a regular basis?
 
Esther12 said:
edit: I don't know how much this post is the manifestation of a bad mood.



Could that play into a narrative of dangerous interference in science? When it's been sold as a story of 'activists vs science', we're probably best off making it clear that it is 'poor science being challenged with the assistance of scientists'.



A lot of harm can be done by abusive messages to PACE researchers from just a few people on twitter, which can then be used to present legitimate advocacy efforts as extremist interference in science.

Having patients raise concerns about poor quality research and pushing for changes within medicine, with political assistance, is going to seem weird to lot of people, especially when we're encouraging more sceptical views about treatment options. Even when we're entirely in the right some people will view it as a worrying interference with 'science' - which is something many people have faith in without an awareness of the problems surrounding the 'replication crisis', tollerance for poor methods that happen to be cheap, etc. What we're doing is going to be embarrassing for a lot of influential and respected medical figures, and they and their colleagues would love to be able to pretend that we're making a fuss about nothing. When they're also able to point to abusive messages, or even just slightly misguided comments, it plays into pre-set assumptions about know-nothings interfering with the work of wise scientists. Most people are not going to check the details of a statistical analysis, they're going to see a Professor talking about the dangers of stigmatising mental health interventions, and then someone swearing at him.

It feels like we're reaching the point of about equal levels of international press coverage of some insulting tweets and 8 years of effort to draw attention to problems with the PACE trial. And in response to this, some people have decided it would be a good idea to send more insulting tweets, and Quasar sent out clear abuse.

The people we need to be reaching out to and persuading at medical institutions are also members of the public and I fear they're likely to be influenced by this stuff. I get the impression that lots of senior figures don't really take the time to look at the details of things, but are guided by their hunches and by a desire to fit in with what is seen as the 'respectable' position. That's one reason why it took so long for us to even start to get traction with the clear problems with PACE: we already had so many prejudices against us. I think there's a real possibility that this sort of media coverage, and the actions of a few people on twitter, is going to do real harm in important areas where it shouldn't matter at all.

Hopefully I'm wrong, but I do worry that some people are underestimating how much we already had against us, and how well this stuff played into the preformed assumptions and prejudices of those we will need to get on our side in order to make progress. Because I do not share these assumptions and prejudices I think that I underestimated what an effective piece of propaganda Kelland's piece was until I saw how other people were responding to it. An effective propaganda piece needn't have been a serious problem, but the way some people have responded to it has made things worse. It's just been amazing to see that people will tag in Kate Kelland when they send counter-productive tweets - what is the plan with that?

I also get the impression that some patients are in a bit of a bubble with PACE, and do not realise that we still have a lot of careful work to do to make sure the problems with it are properly acknowledged. We never won on that, we just started making some slow progress. People choosing now to express their anger is just going to make things more difficult and create more suffering - why do that?
Click to expand...
Strategies have to adapt to context. Disease advocacy has had to go around medical institutions and force change in the past. It's not bizarre in itself. It's actually pretty remarkable how similar our situation is to efforts like the AIDS movement, something that will be reflected in a good light with time.

We got where we are by speaking truth to power and building on tiny achievements, most of which happen without us being aware of it. We can't censure ourselves out of fear of being misrepresented, that will happen regardless. PACE ideologues are in a self-preservation fight to evade accountability, they will stoop as low as it takes. It's actually sad that they repeat the same flaws that their research is criticized for: cherry-pick and misrepresent. They have the benefit of the doubt for now. That won't last and it will look ghoulish and corrupt in hindsight.

Keep in mind this isn't just Kelland's piece. It's a coordinated blitz by the SMC going completely outside their role and acting as PR representatives. That's why it's so successful. But this is something that will be possible to get by FOI some time in the future. It's nice to be able to weaponize a public charity as an attack dog. Except that it leaves a lot of traces. Media packages were sent out, emails that have to be preserved for record-keeping. It all adds up.

Surprisingly, this is progress of sorts. The last PR push made apocalyptic claims of vicious terrorists making death threats and being more dangerous than two war zones, or something to that effect as it was mostly left to the imagination. This time it's been reduced to "some people are mean on the Internet". The bias and framing make it seem like a win, but it's not. It will backfire spectacularly.
 
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Robert 1973 said:
Sadly, ME research has become a political issue
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I personally think it has been a political issue for a long time, just not openly. I was a great fan of Yes Minister, and I suspect it was pretty much on the nail. I don't find it far fetched for the cheapest forms of treatment to be gently nurtured in the murkier corridors of power, with highly ambitious, politically oriented scientists taking the forefront - against all rational odds - in researching such treatments, and magically coming up with the 'right' results.
 
large donner said:
Is he on twitter and other internet outlets voluntarily or is someone forcing him to be there?

Does he understand the notion of the WORLD WIDE WEB wherby if you are on twitter you have invited people to communicate with you?

Or does he just prefer to be online spouting his voodoo nonsense unchallenged by real evidence?
Click to expand...
It's a political strategy. The details don't matter. The only thing that matters is that Wessely is trusted so people don't bother looking into it and take him at face value. That's another thing that will backfire.

One thing that does matter is the PACE tribunal decision that exposed their allegations to be grossly exaggerated. It completely changed their tune, even though they kept the implication. I would bet a fair amount that it played a big role in delays. It's difficult to whine about being attacked when allegations are ruled to be exaggerated by a tribunal. That has real effect and it's how we grind down the suspension of disbelief.
 
Robert 1973 said:
I also agree that it is unfortunate that a small number of people persist with foul-mouthed personal insults on Twitter, which do us no favours.
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I think a strategy is needed to deal with this, maybe even turn it to our advantage. If we can show how blatantly obvious it must be to any unbiased person how extremist individuals are just that, extremists, and nothing whatsoever related to the main arguments about the science, then it should speak for itself that they are totally unrelated to discussions about the science, and should be disregarded by all sides. It should then be clear to sane people that anyone trying to dismiss genuinely presented scientific arguments, by making a false association with extremist views, are themselves smear-campaigning genuine good-science advocates. This may not be the clearest explanation of what I'm trying to say here, but I think it is very important. There must be a great many precedents that could be cited.
 
Robert 1973 said:
I also agree that it is unfortunate that a small number of people persist with foul-mouthed personal insults on Twitter, which do us no favours. Although I would hope that most thinking people would consider the reasons given, along with the sample tweets, to be a rather feeble and disingenuous excuse for leaving ME research. I mean, why didn’t he just close his account or make it private? And don’t most psychiatrists deal with a lot worse than this on a regular basis?
Click to expand...

I largely agree. It seems though there is now a least one worse, completely unacceptable tweet spreading.
For me it's primarily not a question of tactics but of ethics to distance myself from abusive language or false allegations. I am not on twitter but if I were I would react accordingly.
 
Robert 1973 said:
And don’t most psychiatrists deal with a lot worse than this on a regular basis?
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This, exactly. I worked in a psychiatric unit for several years and the staff were routinely subjected to bad behaviour and sometimes quite scarily threatening behaviour. Someone being mean to someone on the internet doesn't come even close. I suspect that Sharpe, Wessely et al have only worked exclusively with people with ME or fatigue and not people with psychiatric conditions, therefore they have had it quite soft and cushy compared to most psychiatrists (certainly the ones I worked with) and so their judgment of what constitutes real threatening behaviour is skewed.
 
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