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

fivetowns said:
and raises a more pertinent question of why he would allow a national news outlet to run a news story about him that he knew to be false.
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Just realised this is bit probably a bit of a logical leap. We don't know what he said to the interviewers - or how much editorialising went on. It would be difficult to prove culpability here. This doesn't change the fact that he has factually invalidated some of the press coverage.
 
Dolphin said:
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OK so they basically just destroyed the arguments they just put forward? Wow.

Sharpe: "it's not really the trolling", which was half of the outrage
Wessely: "it's certainly not about militant patients either", which was the other half

Did that really happen? They just basically admitted the massive international news coverage pushed out for their benefit was based on misrepresentation? Because it's entirely implied and left to the imagination so I appreciate that they admit that the conclusion that everyone jumped to (based on deliberate innuendo) is false and can be corrected.

The "attempts to damage" is a whole other story that does not concern patients since our concerns are irrelevant in the matter of published research. Complaints to the GMC is definitely Myhill and it's bad form to suggest such complaints are illegitimate on principle. Other than that there's really just the peer-reviewed papers and commentaries or science journalism articles, which is even worse form to suggest should not be allowed. Sharpe and Wessely basically seem to suggest no one should have the right to criticize them, otherwise it's just not clear what the basis of this complaint should be at all, especially why it warranted such massive coverage.

How do we get that corrected now? It was not sustainable to leave hanging that they agree that patients with legitimate complaints are just trolls, it's unbecoming, so it's appropriate that they addressed that. But this undercuts everything about a campaign that has already lead (again) to very nasty attacks from random strangers who accuse us of unspecified misconduct that range from being deranged cultists to whiniest and fabulators.
 
fivetowns said:
Just realised this is bit probably a bit of a logical leap. We don't know what he said to the interviewers - or how much editorialising went on. It would be difficult to prove culpability here. This doesn't change the fact that he has factually invalidated some of the press coverage.
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The impact of which has been deleterious. Like last time with a Reuters article, we have been accused of unspecified misconduct, of being whiners, trolls, fascists, cultists and deranged lunatics because of this coverage. This is against a vulnerable and stigmatized population, making it unacceptable.

This demands redress. Wessely even admits he is still seeing patients (*shudder*) so he's hardly been pushed out. Did the reporters not ask those basic questions or decided to ignore the implications? What is this clown show?
 
One of the ironies not lost on me is that there is suddenly so much biomedical ME/CFS research, it's difficult for me as a patient to find the energy to participate in it all.

I'm in a study this week (exercise), a different study next week (just a blood draw), and I'm supposed to call back in three weeks for yet another study (orthostatic intolerance).

If ME/CFS researchers are truly leaving the field, why does there appear to be so much more research happening now than in the past?
 
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".
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I’d like a link so I and maybe other can save it.
 
MSEsperanza said:
I agree with both.

The problem on Twitter is that when abusive tweets are posted as endorsements of your own tweet they are displayed on your personal Twitter account.

So I won't endorse any tweet from a person who does not distance herself from tweets being displayed on her account that contain extremely abusive language or false accusations of murder made against whatever person.

Apologies for being focused on this today. However, I see this as an ethical concern of relevance with regard to advocacy for pwME.

Edit: Deleted the term "death threats", because in legal terms the tweet I meant most probably is not a death threat, but--don't know how to word it--vile, violent rhetoric/ a rhetorical death threat.
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That’s one way of looking at it. However, for many or post people Twitter is only a small part of their lives. Challenging posts you don’t agree with could be both time- and energy-consuming particularly if the tweeter is angry. I know I could get many hundreds sometimes a thousand notifications in a day between retweets, likes, likes and retweets of posts I’m tagged in, likes and retweets of tweets I’ve retweeted, replies to my Tweets and then replies to conversation threads I have ended up in (which include images or any threads I have been tagged in and tweets I have retweeted). Twitter would be a lot less enjoyable if I had to challenge tweets I disagreed with. I sometimes don’t even read comments from some people if they tend to aggressive or make the same points repeatedly. I think many regular users of Twitter wouldn’t expect people to challenge tweets they disagree with. They can be seen as comments sections under online articles. Or perhaps like a thread on a discussion forum where one wouldn’t necessarily need to feel compelled to challenge others in a thread if you start a thread.
 
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Esther12 said:
I get the impression a lot of academics are appalled by the idea that their colleagues might be treated on twitter in the way that politicians are.
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That is something I would like to find out a bit more about. However, I have the very strong impression that the only academics who are 'appalled' are those with a vested interest - like might lose their jobs if the whole psychotherapy business is blown open. Presumably Dr Kate Stein is likely to fall into that category. And then of course there are cheerleader wives and old college friends (whoops some of which turn out to be on the other side) and so on.

I would have thought that most academics would take the view that any academic who fires off self congratulatory posts on twitter deserves whatever they get in return.
 
fivetowns said:
This renders the Times and Daily Mail headlines factually incorrect (and in need of correction) and raises a more pertinent question of why he would allow a national news outlet to run a news story about him that he knew to be false.
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News outlets run factually incorrect articles all the time, regardless of what the people interviewed in the article think. (especially the latter publication)
 
Jonathan Edwards said:
This is why the medical not mental approach is so damaging for ME advocacy.
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The problem is this mental vs physical narrative is not driven by patients, but primarily driven by people who naively or deliberately mischaracterise patient views... Patients have always been on the back foot, on the defense since the 80s, with the yuppie flu etc nonsense.
 
Snow Leopard said:
The problem is this mental vs physical narrative is not driven by patients, but primarily driven by people who naively or deliberately mischaracterise patient views
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Sadly, I don't think that is the case. The medical versus medical push in the UK in the early 2000s came from patient-based groups and patients and advocacy groups continue to push the idea. The UK Parliamentary debate hinged on the medical versus mental idea. The IOM report hinged on the medical versus mental idea. Forward ME have always focused on it. MEAction make use of it, as does IimE.
 
Dolphin said:
That’s one way of looking at it. However, for many or post people Twitter is only a small part of their lives. Challenging posts you don’t agree with could be both time- and energy-consuming particularly if the tweeter is angry. I know I could get many hundreds sometimes a thousand notifications in a day between retweets, likes, likes and retweets of posts I’m tagged in, likes and retweets of tweets I’ve retweeted, replies to my Tweets and then replies to conversation threads I have ended up in (which include images or any threads I have been tagged in and tweets I have retweeted). Twitter would be a lot less enjoyable if I had to challenge tweets I disagreed with. I sometimes don’t even read comments from some people if they tend to aggressive or make the same points repeatedly. I think many regular users of Twitter wouldn’t expect people to challenge tweets they disagree with. They can be seen as comments sections under online articles. Or perhaps like a thread on a discussion forum where one wouldn’t necessarily need to feel compelled to challenge others in a thread if you start a thread.
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I realize my suggestions were a bit too strict. And even though @Robert 1973's first approach seems ideal to me, this will in most cases prove impracticable whereas reporting fellow sufferers may seem too harsh.

My impression is however that Quasar is being defended and excused by other pwME and now feels encouraged to add more vitriol and unproven accusations to their tweets. That shouldn't happen IMO.

Also, I find the tweet containing death threat rhetoric (not directed against Sharpe & Co, but against another manipulative, provocative twitter user), utterly intolerable. I won't link or quote this here, but it's from an otherwise apparently rather reasonable fellow sufferer, not an extremist at all, who wrote this after the publication of the Reuters' article.
dave30th said:
I think you'd probably prefer a one-click button that says "I am deleting your offensive tweet"! :)
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Yes, that would be great. As long as Twitter does not provide such facilities, I would suggest at least to not defend and not encourage abusive language and to mute or block offensive people more often, at least temporarily, and, when appropriate, to make use of the report function Robert mentioned.

It seems that we are facing a new campaign by several, still powerful PACE apologists that might provide some meaner surprises yet. So we should focus our anger and energy on exposing the provable and already sufficiently proven flaws within their research and within their efforts to defend it. To bring unproven accusations into the debate or to excuse and thereby encourage abusive language only distracts from the tasks ahead.

Edited for clarity
 
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I don't twitter but:

I would be interested to know what Dr Wessely DOES think this is about.

If it is not about the science there was never an issue of 'standing up for science' or any need to withdraw from the research (which was not much of a stand).

If it is not about abusive patients because they are all charming, then what IS it about?

Dr Wessely continues the smokescreen conflation between:
1. A small number of angry irrational people suffering from a condition he thinks requires psychiatric help - surely psychiatrists are trained to cope with that?
2. A very large number of academics, other intellectuals and patients who see that the 'science' has been poor throughout.

That the criticism goes back before PACE just reflects the poverty of the programme of using CBT for ME/CFS dating back to the 1989 paper with David, Butler and Chalder, that repeatedly tells colleagues how they 'should' treat patients before any evidence has been gathered. No further useful evidence has been gathered in 30 years because all the study results are consistent with subjective bias - as seen in unblinded studies of rituximab in ME/CFS (for up to 3 years), which were disproven by a blinded trial.



Edit: I realise that should have been 30 years.
 
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rvallee said:
Sharpe and Wessely basically seem to suggest no one should have the right to criticize them, otherwise it's just not clear what the basis of this complaint should be at all, especially why it warranted such massive coverage.
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My impression is a big part of doctors seem to think no patient has the right to file a complaint due to medical error, but that a doctor has every right to commit a medical error.

But there are medical rules when to diagnose what. That limits the right - there are always limits to a right. It's not "anything goes". There are rules to prevent damage.

In my personal opinion, treating ME with psychotherapy (like CBT, GET and the like) or diagnosing a somatoform disorder/depression instead of ME (and then treating the "somatoform disorder" with psychotherapy etc.) is a medical error. It would also be a medical error to treat ME with radiation therapy or by removing an organ or whatever...
I would be happy to actually see legal decisions on this.
 
Jonathan Edwards said:
In May that will change when I present a Grand Round on the problem of Unblinded Trials of Therapist -Delivered Treatments to the UCH Department of Medicine.
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Hopefully there will be bodyguards on duty in case any BPS activists are planning to turn up and politely disagree.
Webdog said:
If ME/CFS researchers are truly leaving the field, why does there appear to be so much more research happening now than in the past?
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The problem for Wessely, Sharpe & Co isn't that researchers are leaving the field, but the opposite. An increasing number of new scientists and researchers are entering the field, not only threatening the cushy little number they've virtually had to themselves for a long time, but also sometimes criticizing the BPS narrative. Even fellow psychologists are doing it!

But they can't even mention the new scientists and researchers, so just keep going on about the patients and hope no-one notices. The true story is:

Special Report: Scientific researchers are entering our field and criticizing us, BPS Psychoquacks say
 
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