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Thanks for that - its sounds like there really isn't any good evidence though. re CFS vs ICC - you were citing Montoya's instructions for CFS patients, so I continued to use that label. In the case of this claim, it seems that we're lacking in real evidence supporting it for either CFS or ICC...

This sort of lumping is pretty consistently a bad sign.

This sounds like the sort of thing that the silliest patients confidently assert, encouraging others to think that concerns about work like PACE is founded on pseudo science. It would be good if that all went away now.

I wasn't even aware there was such a group. Though I guess this could help explain the smattering of really unhelpful comments I sometimes see from patients... is Hyde responsible for those people?!

But is there any good evidence that this is what's happening in CFS? re "We need the narratives about ME to accurately reflect the science we now know about the disease." - I agree with that, but when so much of the evidence is weak or contradictory it largely involves meaning we have to try to...

My understanding is that this switch came before they had started analysing data, as a part of other changes to the primary outcomes, but (I thikn) after data from the FINE trial had shown that for FINE a change from bimodal to likert would have allowed them to report a statistically significant...

Nope. Given the piss-poor justifications provided in their paper it seems fair to suspect that it does not exist.

True... but also, it looks to me as if the 2013 PACE recovery criteria was decided upon after they had been analysing data for their 2011 Lancet paper. They've always been evasive on this, but have more recently been describing their recovery results as a 'secondary analysis', and QMUL's 2011...

I just got re-annoyed by this bullshit statement from the University of Oxford promoted at the Science Media Centre: https://www.sciencemediacentre.org/expert-reaction-to-journal-of-health-psychologys-special-issue-on-the-pace-trial/ There's a lot to be annoyed with there, but "the criteria...

I'm not a fan of the 'quiet phonecall' approach to science... that seems to end up costing patients in the long run. Wessely is great at it.

8.6% of the general population? That is absurd.

These are important points. When pseudo-science is being used against patients to class them as undeserving of financial support, having pseudo-science to fight back with can be genuinely valuable. It's absurd that we're in this situation, and I think that any associaition with Myhill and...

There are parts of the article that I think should have been phrased more carefully, but I can find it difficult to know how critical to be of a piece like this, which is clearly intended as such a personal story. I feel like some people may be reading more into it than was intended, or is...

"I believe that if patients had been more involved in trials design and prioritisation of research" Unless it was fools like Sir Peter Spencer from Action for ME!

I don't see many people talking about 'aggressive rest therapy' as a treatment, but it always made me uncomfortable when I did see it. When there's so much variety amongst the people being diagnosed with ME/CFS it's very difficult to presents one's personal experiences in a way that could be...

Very difficult to believe Kelland is so ignorant that she did not realise she was misleading people.

Thanks for all of your work Mike. Best wishes to you and your family.

I suspect that the regulations offer very little protection... otherwise the UK press wouldn't be so consistently terrible!

I think we've made things more difficult for ourselves with premature confidence. Looks to me as if they're winning, and now seem quite likely to get away with their BS. When was the last time there was a competent story about PACE in the mainstream media? And this is before Cochrane have...

Hmm... that paper is making some rather strong claims. That sounds exciting. Don't see much evidence to support it. Smells like BS to me.