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

Two decades before PACE! Perhaps I had better repost the link to that 1987 paper on mass hysteria.

 

Frances emailed me and explained that she had a limited remit and space. I think she did a good job within that. I think she has her own limits. I do wish Monbiot would bite the bait on this.

 

Just a reminder that Ian Sample is the head science editor at the Guardian.

His bioscience PhD is from QMUL. Even in the case of ME this may have nothing to do with anything but then again . . .

 

I think she did a great job too! I thought the comment was positive and insightful.

 

It has nothing to do with anything... It's about cognitive biases...
(I've met Ian personally...)

 

Pretty strong biases I would think. Unravelling the fact that PACE didn't show what they said, that it was not a great trial and that the voices of people with ME have been calling this out without being heard for a long time isn't rocket science.

 

Sorry to do a 'drive by' but i've been trying to stay away & limit the personal effects of all this awful. Am trying not to engage, for my own sanity. You are all marvellous for all your efforts to counter, analyze, comment etc.

In terms of the possibility of getting a 'proper' journalistic article written I wondered if anyone knew anything about Ian Leslie? He wrote this peice about a similar thing happening to the scientists trying to call out the poor science behind the whole low fat/sugar thing decades ago & how they were vilfied?
https://www.theguardian.com/society/2016/apr/07/the-sugar-conspiracy-robert-lustig-john-yudkin

(sorry i dont know how to embed a proper link, too goofy tonight)

The article has been raised on here before but i sorry i too ill to search for it tonight. might be some more info on a thread somewhere, but he seems like has a curious mind.

might be a useful ally even if he didnt do a full article?

https://twitter.com/mrianleslie

 

Re George Monbiot, for any who might not have already come across it, this piece from 2003 is an illuminating read:

https://www.theguardian.com/education/2003/dec/09/highereducation.uk2

Invasion of the entryists
How did a cultish political network become the public face of the scientific establishment?

George Monbiot, December 9, 2003

 

Wow.

 

"Is all this a coincidence?" - actually, it might be? Never underestimate the human power of a good conspiracy. We are pattern seekers by default.

 

That does not mean that the patterns we find are always random chance. I find it extremely unlikely for instance that the SMC are not willingly subject to external influence.

 

she then tweeted-

And there will be articles of the kind “How British psychiatrists sold bad science by smearing their patients.” Who does that???

Or, “How British psychiatrists placed their academic careers and social standing above actual human welfare by deeply stigmatizing an entire class of people for generations.”

At dinner a psychology professor friend (academic, not clinical) was talking about the psych replication crisis and unbidden she brought up the PACE trial. I asked, “Oh, did you see me tweet about it or something?” thinking it was a concern of my narrow neck of the woods.

And she said “No, we all know about and talk about it. It was a horrible trial.” So let’s stop pretending somehow this isn’t about science. That patients are the only or even chief critics.

Or that the *tens of thousands* of patients fighting CBT/GET somehow represent a “militant fringe.” You will be able to put that narrative into the media better than anyone but no need to gaslight us on the side.

At the end of the day, before your a researchers or anything else, you are *doctors.* Tens of thousands are saying, “You have harmed us.” I would hope you’d have the curiosity to ask why rather than use such big platforms to nurse your feelings of injury/harm.

 

Yep. I think I already said that I think Porter's piece is more damaging than Liddle's. It perpetuates a lazy self-satisfied approach to primary care - the Jack of All Trades approach.

 

Someone , somewhere pointed out that there had been amendments to the original article with partial corrections.

There seems to be another interesting amendment. I have earlier said that the tweets complained of should be seen in their entirety and in context. A screenshot of the @Paul Watton tweet is now shown, indicating that it was in response to a tweet from MS to Allen Frances advising that he read the actual papers and systematic reviews before drawing conclusions. The complaints now made remind me of the joke that used to go around.

Pompous ass: I've never been so insulted in my life!

Comedian: Well you should get out more.

The screenshot now shown does not strongly support the case. What is more interesting is the potential reason for failing to show a similar screen shot of the Anton Mayer tweet, which was more severely edited. In these circumstances one would have expected the full screen shots of both to be displayed side-by-side. Why the modesty? Does the full Mayer tweet further undermine the case that has been made.

 

I may be wrong about this, but I don't think Anton Meyer's tweet even mentioned Sharpe by name. I remember him tweeting last year that the PACE authors - rather than Sharpe specifically - had behaved like abusers by claiming they were helping patients when in reality they were harming them.

I assume this is the tweet that Kelland was referencing (the timing would seem to fit) although it's possible that @MECFSNews has tweeted something along these lines more than once.

 

Thanks info. I agree these sorts of activity diaries and so on are incredibly tedious to plan and keep.

Are we saying that there was more homework (more work) involved in the APT group, than CBT or GET?... I wouldn't have expected that, that would be another twist, haha.

 

I don't have sight of the phase III rituximab trial data, but I thought what was remarkable about the early work was that when patient reported improvement occurred, it had a distinct pattern to it, that, to me, suggested something more than a simple placebo effect was going on in a subgroup of patients. In that the improvement wasn't immediately associated with the dose of 'medicine', it followed a delayed repsonse curve correlating with b-cell depleation, and was actually completely unexpected in the early cases where the treatment was for cancer, not ME/CFS.

 

Is this the MECFSnews tweet that was classed as abuse?

 

I can see why Sharpe found that tweet terrifying.