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I think that the fact it's clearly is an 'unprofessional' letter from parents makes me more sympathetic to it, but it's also important that people don't feel that stops them from making criticisms that we might all be able to learn from for the future.

I'm starting to feel dizzy trying to take in all these letters!

There are often things I disagree with in things like this, but judging this as just a letter put together by parents, I think it shows that advocacy efforts are in a much better place now than they were a few years ago. For people who haven't been able to properly investigate every detail, just...

There was a discussion of this a while back in this thread, but I could only find it via google: https://www.s4me.info/threads/rethinking-the-treatment-of-chronic-fatigue-syndrome%E2%80%94a-reanalysis-and-evaluation-of-findings-from-a-recent-major-trial-of-graded-exercise-and-cbt.3114/page-11

I think Invest in ME do some good work, but also that their comments on social media can seem weirdly prickly, and a bit self-absorbed. eg: "Yet this document seems to have been timed to be released on the wave of success and publicity from our events - yet without our input, and at a time...

Small study, and the exclusion of an outlier was required for them to report a significant difference... I guess we'll see if other groups replicate this or not.

Fingers crossed. A bit late now, but probably wouls have been particularly helpful to write to the members of the committee: Member Party Ian Mearns (Chair) Labour Bob Blackman Conservative Colin Clark Conservative Patricia Gibson Scottish National Party Nigel Mills Conservative Jess Phillips...

That David Jameson account comes out with some stuff. PACE did look at employment as an outcome, and found no significant difference between groups: "There was no clear difference between treatments in terms of lost employment."...

LOL - this is the key part imo: Their journal clearly requires trials to have been prospectively registered - how can anyone claim SMILE was prospectively registered? How can it take them months to realise SMILE was not prospectively registered?

Looking at the history of disability rights, whatever the problems with the social model it seems that it's been politically useful.

I'm after some insider gossip about the Science Media Centre, but don't know how to phrase a question on that without it sounding like a trap. Why did the CMRC choose to part ways with the SMC? What do you think of the 'fact-sheet' they put out about CFS, or they way they profess to speak for...

It already shows up for me in your previous post, ta.

Looking at that exchange, I think Sharpe was saying that the tweeter had mischaracterised the content of the manual in the earlier tweet.

I see @Lucibee already tried to 'censor' Sharpe by pointing out that corrections aren't censorship. If they thought that correcting people who misrepresent important issues is some sort of censorship, that could help explain their outrage at criticism of the PACE trial.

Sharpe now seems to be just tweeting random patients and telling them that he disagrees with how they're living their lives. Is this sort of thing normal on twitter?

Yes - exactly. And that all means it's well worth being cautious and utterly rigorous in ones criticisms. There's no benefit in saying anything that could be viewed as remotely exaggerated.

Sorry - I don't think I'd meant to object to what you'd said! I can't remember exactly what you wrote now, but I think I'd meant to just say that I thought you'd raised a relevant issue, but that it still did not fully undermine claims that PACE seemed to indicate GET (as carried out within the...

For a psych trial PACE was unusually good at monitoring harm. Their measure for 'harm' relied upon subjective self-report outcomes, and there slightly more adverse events in the GET group, which the PACE researchers then decided were not related to GET, and there have since been participants...

Given that Wessely won the inaugural prize, and Crawley was praised last year, I think any nomination for Tuller would have to be done largely on the basis that the most we could reasonably expect is to try to explain to the judges how badly they've fucked up in the past.

Also, isn't the HPV vaccine is given around the time when there appears to be a natural increase in onset of PoTS and CFS? That could lead to it looking like an association, even if those who do not receive the vaccine are not more likely to come down with symptoms. The politics can be...