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

Sly Saint

Sly Saint

Senior Member (Voting Rights)
Reuters:
LONDON (Reuters) - The emails, tweets and blog posts in the “abuse” folder that Michael Sharpe keeps on his computer continue to pile up. Eight years after he published results of a clinical trial that found some patients with chronic fatigue syndrome can get a little better with the right talking and exercise therapies, the Oxford University professor is subjected to almost daily, often anonymous, intimidation.
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A Twitter user who identifies himself as a patient called Paul Watton (@thegodofpleasur) wrote: “I really am looking forward to his professional demise and his much-deserved public humiliation.” Another, Anton Mayer (@MECFSNews), likened Sharpe’s behaviour to “that of an abuser.”

Watton and Mayer have never been treated by Sharpe for their chronic fatigue syndrome, a little-understood condition that can bring crushing tiredness and pain. Nor have they met him, they told Reuters. They object to his work, they said, because they think it suggests their illness is psychological. Sharpe, a professor of psychological medicine, says that isn’t the case. He believes that chronic fatigue syndrome is a biological condition that can be perpetuated by social and psychological factors.
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full article here:
eta: link deleted please use this one
http://archive.today/lwDNQ
 
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And if anyone ever questioned where Colin Barton (Sussex ME Society) stands:
Colin Barton, chairman of the Sussex and Kent CFS/ME Society – a patient group in southern England – said talking therapies and graded exercise helped him recover to the point that he can lead an almost normal life. He told Reuters that in his experience, patients who talk about having been helped by psychological or graded exercise therapies come in for abuse just like the researchers. They face accusations that they were never ill in the first place; that their condition was misdiagnosed; and that their recovery is therefore fake, he said. As a result, he said, many recovering or recovered CFS/ME patients feel forced to withdraw from the debate.
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A Twitter user who identifies himself as a patient called Paul Watton (@thegodofpleasur) wrote: “I really am looking forward to his professional demise and his much-deserved public humiliation.” Another, Anton Mayer (@MECFSNews), likened Sharpe’s behaviour to “that of an abuser.”
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I guess these are the worst abuse they could find. When you compare that to real online harrassment (I don't know for other countries, but in France, many people have been on the receiving end of death and rape threats, insults...), well... these are not pleasant messages, but calling this abuse is a bit over the top.
 
What a relief that this is so weak. They really just have nothing of substance.

It does again show how personalised criticism of researchers on social media is used to distract attention from substantive issues, but I don't see any way of us controlling every persons stray tweet.

It would be great if I could control every patients social media post and ensure that not of them ever say anything stupid, but that's not the way the world works, and it's not what's expected of disability advocacy outside of the world of ME/CFS.

edit: Actually, I did read it knowing the context, and knowing how it was part of an attempt to manipulate the narrative. I can't really judge how it will be viewed by those who are new to the topic.

edit 2: I get the impression that much of the general public falls for the 'science' vs 'activists' spin.
 
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Sly Saint said:
And if anyone ever questioned where Colin Barton (Sussex ME Society) stands:
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Hopefully @Russell Fleming and everybody else at the ME Association will take note of this and have nothing else to do with this man, as they've been requested to do before.

As for the article, I don't even intend to click through to it, it's a desperate attempt by the BPSers to recover some/any of the ground that they are continually losing.
 
How the hec are those tweets abuse or harassment anyway, it’s Twitter, the place to express opinion including contempt. If that isn’t the case about a third of twitter needs to be sanitised. There would have been a context, totally erased, if there was a genuine line crossing why only report cases before investigation. Jeus that’s a long paper, establishment protecting interests and bleating To play victim. Patients have tried to engage about the complexities with these psychiatrists so they are well aware of the reasons for opposition but our arguments are reduced in a deliberate way to rubbish them. The portrayal of tullers involvement suggests bias and a spiteful spoon feeding by those desperate to protect their reputations. They’ve obviously found a reporter able to be poisoned by their narrative, I just hope this isn’t going to do the rounds of the press In a co ordinated attack b
 
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The author obviously did not even look at the well explained evidence showing PACE is obviously fraudulent or refuses to believe evidence over the spoon fed narrative from the PACErs. So much for "balanced and fair" coverage.
The funny thing is it would be great if the CBT/GET crowd stopped doing "research". We could only be so lucky.

Since they have reams of evidence of harassment i'd like to see it (since it *obviously* exists). Interestingly the reporter took them at their word and failed to realize (or didn't want to know) they lost in court when they could not produce any of this "evidence".
Finally i have yet to see any prosecutions, if they are under constant threat many people should be going to jail constantly.
 
I think an outsider reading that piece might wonder if the “activists” have a point!

The article may be slanted from the other direction, but it gives enough detail of concerns about the science, for the establishment of reasonable doubt on the therapies of CBT/GET.

Not all bad at all.
 
"It's still the same old story.
A fight for love and glory,
A case of on-line activists against scientists."

This is a familiar tune.

How is the author defining scientist? Is the implication the two sides can reduce down to Science vs. Anti-Science?

Not sure I want to be cast in that light.

ETA: This strikes me as a false dichotomy. Shouldn't the article be about scientists opposing scientists? Who were those 35 researchers or whatever that signed the letter supporting the International ME Criteria? On-line activists?
 
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So I succeeded in refraining myself from reading the Reuters piece. Anybody saw who the author is?

Will try to not further comment the quoted bits (eta: because it would cost me too much energy to do so -- not suggesting it was generally not worthwhile to comment...)

For me, it is helpful to have known before that something like this will be published.

Thanks again, @dave30th for your work on behalf of sound science for ME.
 
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I find this piece very heartening. "Scientists" for the purporses of this article means "BPS activists", so it is wonderful to hear that that they are finding it hard to recruit new members and that their number of research projects is falling dramatically.

The writer ignores all the real scientists working on ME. This piece is so badly researched and badly written (its bias and manipulations are so easy to analyse and demonstrate) that it should be another easy own goal by Sharpe.

I notice that none of his abusive tweets are referred to.

Tuller cut his teeth as an AIDS activist in the 1980s.
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That's impressive. What a shame the author wasn't able to write that he cut his teeth as a climate denier or anti-vax activist. She undermines her piece in so many ways. 10,000 people signed a petition did they? I wonder why. Any fair minded person encouraged to take an interest in ME by this article will find that they only have to scratch the surface to see that patients are right, and we will win more friends, as we have done before. Send them all to the virology blogs by all means Ms. Kelland, and thanks :thumbup:.

Lillebeth Larun, a scientist at the Norwegian Institute of Public Health who led the Cochrane Review, is one of several scientists who vociferously disagreed with Tovey’s decision to withdraw it.
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Vociferously. Nice.
 
Link to article using archive, as per Tom Kindlon's suggestion, so that it doesn't get the clicks:
http://archive.today/lwDNQ

Wonder if you want to edit your original post @Sly Saint to include this link instead?

Also #MEAction are proposing radio silence on this across this on social media, no sharing, no responding, no nothing. It's often us as a community who do more to boost this sort of piece in our outrage than anyone else. Hence trying a new strategy: silence.
Read more here: https://www.meaction.net/wp-content...tive_erroneous-press-about-ME-Feb.-2019-2.pdf
 
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