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

But some birds do both tweeting and twittering, don't they?

 

Absolutely. One of the spin offs of our discussions is to discover how sloppy technical terms like 'controlled trial' are. 'Matched' here sort of means 'parameter matched' for a particular context parameter and very often an experiment needs matches for several parameters. In immunochemistry we might have up to about six sorts of matched control.

Again, absolutely. In my advice to the NICE committee i am intending to point out not only that we know to expect a potential big placebo effect (from the rituximab experience) but that therapist-delivered treatments pose much greater problems of these sorts you mention than most drug studies, so PACE is the worst case scenario on almost all counts for bias.

Like this.

 

They had homework for APT?

It's been said before but APT isn't even what patients practice and they certainly don't use a therapist to pace themselves, who does in any illness?

The PACE trial told us nothing about pacing as practised by patients didnt it?

 

Yes, and it seems Sharpe is aiming for some own goals again.

I have to catch up with this thread yet, but so many new posts on this and other threads are cheering me up after my passages through some Twitter ravines.

I chose to be not on Twitter for diverse reasons, but I actually find it a very helpful platform. And thanks to Twitter Mike Godwin joined the list of signatories of the Open Letter to the Lancet.

It's good to see so many forum members in such a short time debunking the recent Pace Trial authors' and apologists' efforts to defend their flawed work.

 

Yes. It was a complicated program. The homework was keeping several kinds of diaries, planning activities and so on. https://me-pedia.org/images/8/86/Apt-participant-manual.pdf

Ironicall, I think one of the first things I would drop from my life was such a complicated program because it's not essential.

 

I agree. The tide is definitely turning, and they’re feeling it turning away from them. And over time we’re just gaining strength: new researchers, more allies (SW’s own goal with Mike Godwin comes to mind). These are people trying to hold onto their legacy, their reputations, and their power, but it’s slipping through their fingers. Their tactics often backfire on them now (I’m thinking of how the PACE story moved beyond our the community during the ICO process, via the open data community, many of whom were astounded at the lengths the researchers went to to avoid having to share their data). It must be so frustrating for them, living in this new world where they can’t just pull the SMC strings and have the media hype their work.

 

Since worsening of symptoms after activity is a key feature of the condition they were trying to study it would have been sensible to match the activity levels required for each intervention.

Edit: Removed superfluous 'a' in first sentence .

 

It would help make the point but I think the background on placebo effects is well enough understood. I have limited space so will focus just on ME/CFS trials. What happened with the rituximab trial was pretty similar to what happened with the anti-viral trials.

 

Mike Godwin re-joins the conversation:

https://twitter.com/user/status/1107020809191731202


https://twitter.com/user/status/1107022544962576385


https://twitter.com/user/status/1107062245949915136


https://twitter.com/user/status/1107061372809084928



Meanwhile, Dr Kate Stein appears to have deleted her tweets supporting Sharpe. I infer this because the Tweets now appear as “unavailable” on my Twitter feed but when I click on her Twitter handle I do not appear to be blocked:

 

I didn't really see defence (I could well have missed it - I've found the last few days wading through twitter a bit dispiriting), but alongside the criticism I saw people talking about how the pain, suffering and hardship that's a part of ME/CFS can make bad behaviour understandable. But almost all bad behaviour in understandable when you think about it. The bad behaviour of those in positions of authority is understandable. So?

Some people on twitter seem a bit ego-driven in a way that ends up harming any advocacy efforts they're linked to. If people want to use twitter to express their pain and anger without thought ofthe consequences, that's up to them, but it would be good if they first tried to disassociate themselves from any sort of advocacy effort related to ME/CFS. If anyone wants to contribute to advocacy work then they are going to have to start thinking about whether their actions will hurt or harm, persuade or put-off. Sending insults to researchers only benefits those trying to discredit patient concerns. It wouldn't surprise me if that Quasar tweeter was happily hurting other people's advocacy work in order to get the ego thrill of being in the newspaper.

 

As it seems that Reuters has the capacity to identify and locate those who tweet, perhaps they could do the same with this individual and run a story on his motivations and expectations and the effects he might have on advocacy attempts.

 

Something struck me though with whats going on in the twittersphere;
pwME are condemning the likes of Q for their behaviour yes; but aside from that this whole current onslaught from the Psychosocial camp does appear to have galvanised the ME community as a whole and 'drawn a line in the sand'.

 

That is the core of their grievances. Their triumph was eliminating the competition and that making it to the finish line was the victory. Now the race is back on and their shortcuts have been eliminated, they don't stand a chance. They've been privileged, carried the whole way, for so long that they treat a level playing field in which their ideas compete on substance as fundamentally unfair.

 

The mutual admiration society lives on.

 

But it's fundamentally an issue of mischaracterization. The response would be identical if podiatrists or chiropractors had pushed their own "mechanical" or gait or subluxations or whatever model. It's not the specifics of why it's wrong, it's that it's fundamentally wrong because it contradicts our experience.

And they know that. There are several physicians out there with their own treatments. Hardly anyone particularly vouches for them for the same reasons: they don't work. Myhill's intentions are good but her treatment proposals seem to not be much more useful than the psychosocial paradigm and they are basically treated the same way. If either worked it would show.

The entire framing of mental vs medical is meant to change the conversation from the real issue, that it is contradicted by lived experience and a decades-long body of research, to a fake one. But the debate and controversy exist only because their model has achieved dominance. Yet it's ironic that they insist they do not claim (officially) that it is mental anyway so this debate is just fundamentally dishonest because it depends on mischaracterizing the words of thousands, including hundreds of academics.

 

A finish line that, until recently, was all of their choosing.

 

Absolutely and on equal grounds. The psychosocial model is just as wrong, not more or less. It's wrong for the same reasons: it's fundamentally flawed. The nature of the flaw is irrelevant.

 

Classic Streisand effect