Thread by @_Lucibee

It's been a while since I blogged, so what shall I blog about today?
I know; how the SMC uncritically reinforces the orthodoxy (without much regard to the actual evidence)
#BeyondTheHype
lucibee.wordpress.com/2022/05/30/smc…

OK. That was the TL;DR version.
Do I blog the rest of my thoughts as a long rambling essay, or in short chunks?

https://twitter.com/_Lucibee/status/1532068999865204736

Fox: “If a group of scientists … can be silenced or discredited in this way, what’s to stop other activists doing the same with other findings they don’t like?”

Does that really justify the nasty chapter title?

https://twitter.com/KatyBruce108/status/1531973490890375171

Far from being silenced, this particular group of scientists have been given a platform by the SMC to present their flawed treatment studies, and then to moan endlessly in the press when patients complain about being harmed. 🙄

One of the revelations was particularly surprising:
Apparently, one of the researchers was so scared, that he didn't want SMC to publicise the PACE 2-year follow-up study.
No mate. He didn't want it publicised because it was a null study. It showed no effect. 🙄

A few other corrections are needed:
NICE did not announce a guideline review as a result of “a sustained campaign by activists”. NICE had been promising a review for some time, as the 2007 guidance was very out of date.

Although the review panel did consist of more patient representation than previously, lay members were still in the minority (5 out of 21 members), so weren't able to outvote the clinical representation.

The 3 committee members who resigned did so at the 11th hour, yes, but only *after* the guidance had been signed off by the whole committee (including those 3 members).

It is simply untrue to say that NICE "bypassed its standard processes and buckled". They stayed strong and stuck to their guns for the sake of patients and for the sake of the actual evidence.
The RCs put them in an impossible situation.

Elsewhere...
Contrary to what Fox claims, the HRA did not "exonerate" the PACE trial; they merely said it was beyond their remit to do so.
thesciencebit.net/2019/02/07/the…

There's a strong implication/assumption (whatevs) that FOIA requests made by "activists" are used as a form of harassment, to take researchers away from their jobs, to stall research, rather than the more mundane search for information.

Also, that those who make such requests are not representative of pwME - “they claim to represent all ME/CFS patients, but they do not.”
It's the "patients would surely be too ill to produce so many complaints and FoI requests" thing again.

What I found quite stunning, though, was that the SMC seemed to be behind most of the "we're being harassed and silenced" hit pieces over the past decade or so, including Hanlon's dreadful Sunday Times article in 2013...

... all the way up to Kate Kelland's Sharpe-goes-fishing-on-Twitter exercise in 2019
reuters.com/article/uk-sci…

Is that really a suitable thing for a science media organisation to be involved in?
Are they proud of how it makes patients feel to read stuff like that?
I can only presume that they really don't have a clue what it is they think they are doing! 🤦‍♀️