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

That @quasar9uk tweeter is vile.

 

In case this is of any use to anyone:
https://twitter.com/user/status/1106333751741681670


The Daily Mail usually allows comments and if you don't have the energy to write one to write one, you can always simply upvote or downvote comments.

 

The Times sort of picked it up, not exactly, but kind of, sort of...

https://www.nytimes.com/reuters/2019/03/13/world/europe/13reuters-science-social-media.html

@MSEsperanza
@dave30th

 

Unfortunately I spoke too soon about other outlets not picking it up.

One wonders if Sharpe has ever considered that people with ME do not have the choice to walk away, despite the daily abuse and harrasment we experience from doctors or the child protection orders and sectioning that leads to physical abuse by forcing GET on people, that is directly linked to his psuedo science and his maligning an entire patient group.

Perhaps he and these 'journalists' should speak to patient groups about the medical profession's frequent insults and maligning of patients.

Kate Kelland put work in looking for comments about Prof Sharpe and did not come up with anything particularly significant, how about now looking at the patient forums to find examples of patients experiencing insults from the people who are supposed to help them.

 

I think that it's important people don't underestimate how harmful this stuff is for us. Even before the recent press coverage, PACE trial critics being viewed as 'radical and abusive' was an important impediment to making progress with the science. Excellent and skilled advocates being well informed, reasonable and cautious are still held back by this reputation causing problems. This is an important issue that makes it difficult to gain support amongst those whose support we need - and even before that, makes it difficult to get academics and researchers to take the time to even look seriously at the issue. It's drives away potential allies.

I don't see what we can do to improve things though. I think that there's value in constantly reminding one another of the importance of being cautious and reasonable with all on-line comments, but there is always going to be a minority that makes life worse for everyone. Can we do anything better? It breaks my heart that we've got @quasar9uk representing PACE trial critics in the UK media instead of someone like Tom Kindlon.

PS: The @quasar9uk story is the fifth main story on the Daily Mail's website.

 

I'm disappointed with the NYT. They certainly saw how biased this piece is. At least they should have fact-checked the information given about David Tuller who also has written for the NYT:

former journalist? Only has a doctoral degree but otherwise not affiliated with the UCB?
That's what his homepage at UCB says:

https://journalism.berkeley.edu/person/david_tuller/

For his recent contributions to "Bekeley Wellness", an online resource for evidence-based wellness information, see here: http://www.berkeleywellness.com/author/davidtullerdrph

Also, I think it would be good to confront Reuters and those papers that publish the article with @Jonathan Edwards' comment:

Edited for clarity.

 

I've got mixed feelings about this to be honest. Although @quasar9uk's comments are in some ways a gift to Michael Sharpe - worse than anything that appeared in the Reuters story - he/she *still* manages to shoehorn into the published tweets that Sharpe spent £250,000 suppressing trial results, and that ill people are denied appropriate medical treatment as a result of Sharpe's work. And there's mention of Ron Davis in the article - including a picture of Whitney which helps show how serious the condition is - making it clear that he doesn't think much of Sharpe's research. And several of the people who've taken the time to comment are asking why on earth this scientist allows himself to be so easily distracted and dissuaded by social media comments...

It's still not a great article - but it's better than the Reuters one. And while I don't approve of @quasar9uk's abuse, I don't think their tweets are as damning as Michael Sharpe obviously does.

 

interesting timing...

https://twitter.com/user/status/1106456782271057920

 

https://twitter.com/user/status/1105982816142135300

 

Perhaps, but most probably not. I don't think it helps to suggest abusive people can't on occasion have an ME/CFS diagnosis. We are made up of all kinds of people.

It's up to the judgement of people on twitter, but surely they can challenge or report the behaviour.

edit changed one word for tone and spelling.

 

cleverly orchestrated offensive; must be all that studying of Military history by someone.

 

One has to wonder how far up the management chain decisions about this reached. The new paper seems to be dated 12th March, the article was Wednesday so that was 13th March. Is there no thought of reputation for independence and the dangers of appearing to be just an arm of a particular campaign. We have come to expect that of the BBC so perhaps it is just the modern way. Perhaps reputation no longer counts for much.

EDIT cross posted with Sly

 

That will not be useful when someone is making a CFS related FOI and quasar9uk's tweets are being quoted to the ICO!

Who is going to be persuaded that Sharpe's work is causing problems for patients by quasar9uk's tweets?

Anything like this is really harmful.

There's nothing 'mixed' about quasar9uk's tweets. They're vile and they're going to be used to define the social media response the PACE trial researchers face. That's going to be terrible for anyone trying to challenge their work.

Someone just tweeting "charlatan" at Sharpe is completely unhelpful too. What would anyone think the benefit of it is? Are these news stories encouraging the view that insults and abuse on twitter are an effective way to get those responsible for poor quality work to leave the field, so people then think sending insults is a useful form of advocacy?

 

It would be a sad condemnation of psychiatrists if they were unable to distinguish problematic behaviours from normal responses and react appropriately to each. What could be the possible point of them. I am sure that most have no difficulty in this regard and do valuable work with those who need their services.

 

I am still trying to ‘catch up’ with all this - been a poor week - does anyone please have an archived version of the Mail article, because, in the same way as the original Reuter’s piece, I do not want to give the paper the satisfaction of my “click” on their article.

Thank you!

 

I completely agree with you that the tweets aren't helpful. But if readers of the Daily Mail can read quasar9uk's comments - embedded in an article that is broadly sympathetic to Sharpe - and conclude that Sharpe is exaggerating the scale and nature of the abuse he faces, I would imagine that the ICO will also take some convincing.

That's what I meant when I used the word 'mixed' - quasar9uk's tweets are clearly more abusive than anything that Sharpe fed to Reuters and yet it *still* stretches credibility beyond breaking point for him to claim that social media comments like this have forced him to stop working in this field.

 

At least they are honest I suppose, and I guess that at least they will, hopefully, be posting biomedical stuff.
https://twitter.com/user/status/1106497345661870081

 

The ICO already classes some requests related to CFS as vexatious seemingly for no reason other than that the request is related to CFS and there is a concern about a campaign of intimidation. Things are already really bad for us, and tweets like this are going to make them even worse. We need to gain influence within the UK Establishment, and that culture is not keen on outsiders challenging authority figures to start with.

edit: Also, I think that there are lots of academics who would not want to work in a field that led to them receiving comments like that.