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I think it's difficult to define 'pacing' particularly for a trial in this way. My big problem with both the trial and that letter is in the description of 'pacing' as a form of treatment. It's not, at least as far as I am concerned. It's a way of coping with effects of the illness in the hope...

I agree. I don't think in itself it puts AfME in a particularly bad light. The problem is that he/they seemed to think so long as pacing (or rather the PIs' definition of pacing) was included they'd support the trial to the extent they did. They should have looked more closely at the whole...

I appealed the MRC's redaction of the AfME letter in support of PACE. In light of my complaint to the ICO, the MRC has reconsidered its decision and has now released the letter. It's not all that interesting. It seems to be simply that as long as pacing is included, Clark would support the...

I spoke to Jaimini on the phone. She emailed me recently to say there is going to be a presentation in HoC in the next few weeks. Grim serendipity: I received an Assessment form in the post last week: to be completed and returned by 14th November. Great. Edit: Oops. Seems HoC reception was...

New report: https://www.inclusionlondon.org.uk/wp-content/uploads/2018/10/ESA-WRAG-Report.pdf Article about it: https://theconversation.com/constant-anxiety-of-benefit-sanctions-is-toxic-for-mental-health-of-disabled-people-105067?utm_medium=Social&utm_source=Twitter#Echobox=1540217904 I was...

Though there is a third sister, Gemma. My guess that would be the one who has/had 'CFS'. Now if I was into all that psychology stuff, I could make a number of speculations about Fiona and Claire's utter conviction that Gemma's illness is one of unhelpful beliefs, including stuff about birth...

Interesting, Peter. I have also written on SMC's handling of COIs. https://johnthejack.com/2017/10/20/a-response-to-fiona-fox/ I'm coming late to this thread, but I find the bit about Wessely amusing. I've had a couple of (courteous) email exchanges with him. I did in fact say right from the...

Incidentally, for those not aware, Nick is a data thug. http://www.sciencemag.org/news/2018/02/meet-data-thugs-out-expose-shoddy-and-questionable-research

Just to say, Nick is joining the forum and will be responding to 'interesting thread', in particular about the TEC scale.

Good luck with that. I've learnt that sometimes I need to let things go... Though I am grateful to those who do understand.

I didn't even try. Hehe. I got the gist, but the technical stuff went way over my head.

No, from the study conclusion: Sexual harassment emerged as the most important predictor variable. Nick does discuss this a bit.

Data look dodgy but the authors won't share them with Nick. https://steamtraen.blogspot.com/2018/10/just-another-week-in-real-world-science.html?m=0 Blog post about this study: https://www.sciencedirect.com/science/article/pii/S0924933817322605

Last time the committee to appoint the committee was named. Does anyone know who appointed these?

Beadsworth is an old colleague of PACE's and AfME's Alastair Miller.

Why is MEA wanting to talk to Fox? The SMC are poisonous and Fox made up her mind about the illness decades ago. They shouldn't have anything to do with her or them.

Some of us have written to @Action for M.E. about this statement. The exchange is below. While it's not everything we wanted, I think it is a good reply from Sonya. Thanks to all those involved, including one other who helped with the drafting. Dear Sonya, We are writing to thank Action For...

One further thought on this approval by 'two independent oversight committees'. There was only one member of the DMEC present and there were only four voting members of the TSC at the meeting that approved the changes. The minutes group TSC members as 'Independent' and 'Non-voting'. I presume...

Yes, thanks. And on seeing the post by @MSEsperanza I contacted Jan. Not sure if I fit the bill but I've made myself available.

Based on this review, though he has tried to explain it away.