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

Its laughable that they claim we are trying to silence them when we are actually trying to engage them in dialogue. That dialogue being hampered by their refusal to release the data for their claims, amongst other things, and stifling the debate.

They have silenced themselves if anything. Their silence in answering scientific questions in the scientific arena is telling, whilst their shouting out via their tabloid and other popular uncritical press connections is absolutely deafening.

Scientists answers scientific questions in scientific publications and scientific arenas and via data release without the need for FOI hearings in court ordering them to release their data and in parliamentary hearings etc not through gaslighting in the New York Post.

 

No, it likely means there is other news--Brexit, plane crashes--that are taking up people's attention this week.

 

How are you silenced by everyone else also getting a voice?

Being so used to the privilige of going mostly unchallenged, that's - special...

...

Edit: Just a stray thought after reading the very good Davenport twitter-thread, and it's contrast to the reuters piece.

 

Even so, this does feel different. It is as though they are all just going through the motions. It is hard to discern any strategic purpose or any clear understanding of how any such purpose, had there been one, might best have been put into effect. One has to wonder whether they were overtaken by events and had to withdraw a part of the material "pending the result of ongoing enquiries", as they say.

The examples of supposed intimidation are pathetic. Its handbags at dawn-rather like leaving a rugby field and complaining that at the bottom of a ruck, the opposition hooker was heard to question the marital status of one's parents. It might be interesting to see how Sharpe reacted at the time to these tweets and see whether there were any behavioural changes consistent with intimidation. He often seemed to react in a very polite manner which suggests that he took it all in his stride, as one would expect him to.

EDIT this was written following Dave's post above and is not an answer to the intervening ones

 

I would say this article is mostly about planning for saving some face as the tides are turning against the BPS-model, CBT and GET. They know this. But admitting beeing wrong doesn't seem to be an option - better blaiming patients for leaving the field. As long as things are moving forward, I can live with that. There are plenty of scientists actually listening now.

They lost the tribunale to release the data, everyone know they tweaked their results - it's even indirectly admittted in the piece, the parliamentary hearing and 'the medical scandal of the century'. They know, however hard they're fighting, Tovey seems determent on at the very least downgrading the Cochrane review. The US and the Netherlands don't recommend GET - the NHS is on their way to change something.

It feels like a swansong. To me at least.

Edit - spelling.

 

This could very well be true, especially if the original draft included material from Professor Crawley. Given that her work is now under investigation, it would have been difficult to include quotes from her about horrible patients or my supposed "harassment" of her without mentioning that my investigation has brought her work under serious scrutiny.

 

It doesn't help that the best they could come up with is a few anonymous forum posts and some tweets that basically amount to "these people are causing me harm", which happens to be true.

Which kind of makes me think that the information tribunal decision may have forced them to do a reset on their debunked claims. They still trotted out the Wessely scanning his mail trope but that's just a weak hypothetical. So they had to come with brand new claims of abuse, likely why Sharpe was going out of his way to be hostile and get angry response on Twitter, but could not come up with anything better.

As always: judicial courts > court of public opinion. A tribunal ruled their old claims were wild speculation at best. That took the wind out of their sail. Another very important reminder of how critically important Alem's work was. Without that FOI request there is no "you made this shit up" opinion by a tribunal and Wessely would have uncritically repeated his crap about feeling more safe in war zones.

Every small bit counts because it accumulates. Their work has nowhere to go and can't stand the tiniest bit of scrutiny. Ours is filled to the brim and streaming through the cracks. It really does feel different, although there could still be a media blitz by the SMC to fluff it up a bit, but it's unlikely that the attention span will work to their advantage when major news make their high school clique drama an irrelevant issue.

 

It would also have been hard to avoid mentioning that Crawley is still running and publishing well-funded research. Kinda puts a wrench in the whole "silenced out of the field" trope when two of the PACE researchers suck up most of the research funding and have kept a steady pace of publication.

Then again, Sharpe and Wessely continue to publish on ME and related (in their mind anyway) topics and that was also conveniently left out. What was left out would actually make for a very interesting article, painting a very different overall picture.

 

We know that the article was severely delayed - it was supposedly intended to be published towards the end of last year - and that changes were apparently requested by editorial. I suspect that one of their main goals was (and probably still is) to provide support to Larun et al as they attempt to defend the Cochrane Exercise review. In my opinion the key sentence of the article is "As well as dissuading researchers from working in the CFS/ME field, scientists fear that pressure from campaigners has also begun to show in the wording of guidance for patients and doctors from national health authorities."

That's what I think this is about - building a narrative that Cochrane and NICE need to resist pressure from 'activists' who are opposed to 'science'.

 

#MEAction's letter to the editor:

https://www.meaction.net/2019/03/14/fighting-for-rigorous-science-and-accurate-reporting/

https://twitter.com/user/status/1106259093432557576

 

I'm afraid I don't know where to put this but Graham Linehan who wrote the comedy Father Ted has tweeted this article conflating the ME situation as outlined in the article with trans activists threatening doctors and surpressing science that does not support their cause.
He has 650,000 followers on twitter and is an active tweeter.
I'm not good on twitter myself but it ought to be pointed that he is wrong and is a very different situation. I'm not sure how to go about it for the best as he can be thorny but maybe someone here will know?

I can't seem to add a direct link but his handle is @glinner and name is Graham Linehan.

 

David Tuller is silencing us by asking us questions and offering to place any responses we make unedited alongside his own work!

 

Commenting on the article itself is cool -- sharing it on social media less so, IMO. This article is bait. And our rage and suffering is literal money in the bank for Reuters.

Anyway I definitely agree with sharing articles that have good scientific information. I'm also definitely not chastising anyone for doing what they think is right in this situation.

 

Over the past year or so, Graham Linehan seems to have taken it upon himself to fight the corner of being incredibly transphobic under the guise of being a male feminist. My personal view is that I’d just ignore him, as he tweets so much that this retweet will soon be old news anyway. If he ends up tweeting more about it then maybe it’d necessitate a response but as it is might as well just ignore it.

 

Great letter, @JaimeS !

Just one little remark though: I don't know if this is accurate:

As far as I know, only the recent Australian survey by Emerge indicated such high percentages.

 

"Two surveys from the UK with over 1000 respondents each reported that over 80% experienced worse health outcomes following GET."

Does sound a lot higher than I've heard. Crucial not to over-egg the numbers.

 

Is one the recent Forward ME one ? I don' t think figures are available for that one yet? ( Could be wrong)

 

The original tweet has now been deleted:
https://twitter.com/user/status/1106317322401312768

but he did also retweet this message:
https://twitter.com/user/status/1105960066899861504

 

Well, this is quite a headline...



https://www.dailymail.co.uk/health/...e-researcher-QUITS-online-trolls-hostile.html



Well, that's better than the Reuters article already...


Whoops. This thread has more vitriol in it but I didn't see the point in reproducing it here & it's easy enough to find. Not good. Not smart.