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

[large donner]

Allegedly representing.

Do we know for sure they are legit?

Could be a plant trying to stir up trouble against us.

Yes its interesting, when was the date this tweet was published? For the whole period of Sharpes seemingly goading on twitter to attempt to collect examples of "online silencing" or worse, the best they could come up with was someone saying his professional demise will be seen as a positive once the truth is fully evaluated.

Yet the day this puff piece comes out Sharpe links to a tweet with someone using the C word.

 

[Kalliope]

I meant it as a joke about Dave's encounter with Esther Crawley in 2017 - I probably should have added a smiley...

Not at all, it was clear you meant it as a joke. I was just adding some info.

 

[Stewart]

Not at all, it was clear you meant it as a joke. I was just adding some info.

Whew! I'm never sure whether I should make it more obvious when I'm trying to be funny...

 

[Stewart]

Sharpe: "I've quit the field because of abuse."

Also Sharpe: "Here's my new paper in the field I just quit."

In the same vein...

Sharpe: "I don't work on ME any more - it's just too toxic. The toxicity permeates everything."

Also Sharpe: "My co-authors and I are very keen to get our response into the public domain as soon as possible to inform the ongoing public debate."

 

[rvallee]

I'm disappointed with the NYT. They certainly saw how biased this piece is.

The NYT has fallen a lot over the years. It's not the journal it used to be. They still have some very good journalists but those make up less and less of the overall pool of reporters.

 

[rvallee]

It's still not a great article - but it's better than the Reuters one.

Hands down. It's still bad and yet the Daily Mail reporter did a far better job than Reuters. Kelland's piece is filled with small factual errors that just show how lazy her work was. The DM article has a heavy bias but the facts actually make Sharpe look like a massive jerk.

 

[Sly Saint]

And this makes Wessely look a complete twerp:

is it just me or is SW shrinking?

eta: just spotted SW 'engaging' with activists

 

[rvallee]

One of the standards and values of Reuters' journalistic code is "Always strive for balance and freedom from bias".

It would be an almost unprecedented coincidence if this story was not coordinated to be synchronous with publication of the new Sharpe et al paper. This seems to provide prima facie evidence of bias. One wonders how Reuters might rebut that presumption.

Reuters and other outlets are just publishing what the SMC send them. Kelland just happens to straddle both. We've all seen how the SMC boasts about basically being able to do newspapers' job for them on science publishing. This is no surprise, news organisations just outsource the work because it's cheap, they probably don't pay much attention to the substance and just trust the SMC is competent.

It's clearly a PR campaign and the coordination and alignment is obvious, but not much we can do for now. It will backfire spectacularly over time.

 

[Esther12]

Hands down. It's still bad and yet the Daily Mail reporter did a far better job than Reuters. Kelland's piece is filled with small factual mistakes that just show how lazy the process is. The DM article has a heavy bias but the facts actually make Sharpe look like a massive jerk.

I feel like the Daily Mail author was trying to do a fair job, but rushing out an article about a topic they didn't have time to try to understand. Almost all of it is bad for us, but I think that's different to Kelland's piece which is clearly constructed as a piece of propaganda.

 

[Wonko]

This threads too long and grew too fast for me to have read most of it, but if it hasn't already been mentioned;

I'm interested in which dictionary the definition of 'silencing' includes using worldwide media to promote their cause, such as it is, at the same time as slandering (or is it libelling) us.

Surely if 'we' could silence them this wouldn't be all over the media?

Isn't this like, I dunno, a world famous singer releasing a worldwide hit about how they are totally mute now? Bad example but I'm sure my point is clear.

 

[chrisb]

This threads too long and grew too fast for me to have read most of it, but if it hasn't already been mentioned;

I'm interested in which dictionary the definition of 'silencing' includes using worldwide media to promote their cause, such as it is, at the same time as slandering (or is it libelling) us.

Surely if 'we' could silence them this wouldn't be all over the media?

Isn't this like, I dunno, a world famous singer releasing a worldwide hit about how they are totally mute now? Bad example but I'm sure my point is clear.

Yes. I think it may all be a result of hysteria. Or perhaps it is the correlative in doctors of what Abnormal Illness Behaviour is supposed to be in patients. Perhaps it's Abnormal Medical Behaviour.

 

[Jonathan Edwards]

Surely if 'we' could silence them this wouldn't be all over the media?

I think that it may be relevant to think of the silencing, as perceived by PACE authors and colleagues, going on within medicine itself. Viz:

Shedding of Peter White and Esther Crawley by the CMRC.
Absence of any place on NICE committee for psychiatrists.
Asking Larun and Price (Sharpe's departmental colleague) to withdraw their Cochrane exercise piece.
Abandonment of the planned Cochrane update that included these and several PACE authors.
Removal of ME/CFS from Cochrane Mental Health Section.
Rejection of Brurberg's submission to J Health Psychol.
Changes in policy in Holland and the USA.
Parliamentary vote to withdraw recommendation for CBT and GET.

 

[Wonko]

I think that it may be relevant to think of the silencing, as perceived by PACE authors and colleagues, going on within medicine itself. Viz:

Shedding of Peter White and Esther Crawley by the CMRC.
Absence of any place on NICE committee for psychiatrists.
Asking Larun and Price (Sharpe's departmental colleague) to withdraw their Cochrane exercise piece.
Abandonment of the planned Cochrane update that included these and several PACE authors.
Removal of ME/CFS from Cochrane Mental Health Section.
Rejection of Brurberg's submission to J Health Psychol.
Changes in policy in Holland and the USA.
Parliamentary vote to withdraw recommendation for CBT and GET.

None of which were done by pwME as far as I know. If anything pwME had vastly less influence than entrenched 'experts'. So pwME haven't 'silenced' them. Their own actions and statements have. Only, as I said, they are hardly 'silenced' if it's all over the media.

 

[Inara]

I do take a UK-centric approach, and that is where things are worse.

At least ME/CFS is diagnosed in UK. In UK BPSers say it's a biological disease. There is political awareness, and there were some successful FOI tribunals. In that the UK is much better off than Germany, for example, and maybe than Austria and Switzerland. In Germany, ME is a "cultural phenomenon that is very rare" (it's rare because Neurasthenia and somatoform disorder are diagnosed instead), and although the Parliament excluded ME from the group of "functional disorders", the general consesus is that it is one. We have no voice here, the few voices aren't heard, and it's really difficult.

So not all is bad in UK.

 

[Esther12]

So not all is bad in UK.

True. I don't really know enough about other countries to comment - we gave the world PACE though!

eta: just spotted SW 'engaging' with activists

Has the quality of criticism of PACE/Wessely/etc on twitter gone down, or was it always bad but I just only looked at a few accounts from people I thought were good. It used to be that when I looked at Sharpe's twitter feed the responses were generally good points, accurate criticisms, etc. Looking through the recent stuff it seemed to be lots of people using the 'fraud' label but not backing it up, more confusing points about mental health, inaccuracies, more empty insults in tweets.

Of course, people can choose who they block on twitter, which controls who can reply to your tweets. Sharpe didn't block @quasar9uk, but I saw he did block Lucibee and others. I guess that could help explain things.

 

[Hoopoe]

I think that it may be relevant to think of the silencing, as perceived by PACE authors and colleagues, going on within medicine itself. Viz:

Shedding of Peter White and Esther Crawley by the CMRC.
Absence of any place on NICE committee for psychiatrists.
Asking Larun and Price (Sharpe's departmental colleague) to withdraw their Cochrane exercise piece.
Abandonment of the planned Cochrane update that included these and several PACE authors.
Removal of ME/CFS from Cochrane Mental Health Section.
Rejection of Brurberg's submission to J Health Psychol.
Changes in policy in Holland and the USA.
Parliamentary vote to withdraw recommendation for CBT and GET.

Thanks, this cheered me up. They are losing ground where it matters. Not because of online trolls but because their work is indefensibly bad.

 

[Stewart]

Of course, people can choose who they block on twitter, which controls who can reply to your tweets. Sharpe didn't block @quasar9uk, but I saw he did block Lucibee and others. I guess that could help explain things.

I think you've hit the nail on the head. If you try to engage Sharpe in polite reasoned debate on Twitter, he blocks you. If you direct abuse at him he doesn't block you but instead files your comments in his 'abuse' folder (and occasionally interacts with you, presumably in the hope that you'll say more).

If he genuinely was as sick of the 'toxicity' of social media as he claims to be, his injudicious use of the block function would be spectacularly self-defeating.

 

[chrisb]

He makes positive use of selection bias.

 

[NelliePledge]

I wouldn’t choose to use the specific swear word Quasar used in that tweet. But I’ve seen much worse stuff on Twitter and as someone able to get to football matches in person I am absolutely au fait with bad language. I think it’s use is pretty common place. I use it (bad language) myself. Let’s face it Quasar is a person with ME who like all of us has challenges to face including pain. If the worst thing they’ve ever done is drop the C bomb it’s hardly a major crime. They’re not a Cabinet Minister or a Bishop or Professor who may be expected to meet a certain standard in their pronouncements.

 

[Jonathan Edwards]

None of which were done by pwME as far as I know.

If it hadn't been for PWME I doubt any of these would have occurred. Some I know to have been as a result of the actions of PWME, even if the pathway complex.