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Just a reminder that the topic of this thread is a question posed to AfME concerning their current position on PACE (though I can understand the temptation of the digressions!)... :cool:

https://twitter.com/mayadusenbery/status/976910927449620480

Also worth a new thread, IMO. :) Why not write in to the papers with that offer, @Jonathan Edwards? Very effective bit of advocacy.

Worth starting a new thread for that to draw attention to it?

Well done and thank you to all the individuals and charities concerned. :balloons:

It may be a bit late but it's not too late for AfME to turn things around and start acting in the interests of patients. I'm glad to see your name on the letter to The Times complaining about GET, Clare - @Action for M.E. - but we need a positive statement from AfME on its own website and the...

Interesting to see that Clare Ogden of AfME co-signed that letter in Times. :thumbup:

This is an excellent article - and refreshingly includes no horseshit from the SMC. Comments are disabled, sadly - it would have been good to praise the journalist. But please do click through to demonstrate to the editor that people are interested in this story.

What about a new thread to draw attention to that request, @Andy?

I'm not sure that's an accurate description of adapative pacing therapy in PACE, @Invisible Woman - the idea with that was to stay within certain limits, IIRC. But there are signs lately of the term 'pacing' being hijacked and used to mean essentially 'graded activity'. But I'd like to keep...

They twist and they twist and they twist. Can they really not hear themselves?

Thanks for all your information on this, @B_V. This is a hugely important study and I'm glad to hear the detail of how it's proceeding. It sounds very impressive indeed. If recruitment is a major roadblock, would it be worth writing something that could be put out widely via Solve, #MEAction...

The Wilshire et al. paper is also covered in the print edition of today's Times – on page 2! It's different to the online coverage. It's written by Tom Whipple, the science editor: Findings of £5m ME study 'worthless' A landmark £5 million study that formed the basis for NHS treatment of ME...

That's complete and utter horseshit. There'd been tons of studies about selective reporting - it was already a huge scandal, years before PACE.

I hope people will retweet @Simon M's tweets! Even the 'nutshell' is a highly useful summary for the non-technically minded (which includes most journaists, apparently). Let's get the story far and wide! Who's on Twitter? @Andy, could S4ME tweet it?

@Action for M.E. - I note AfME's public comment today on the Wilshire et al. critique of PACE: Action for M.E. comments: We welcome this latest re-analysis, which adds to the ongoing scientific debate around the methodology, conduct and clinical value of the PACE trial, and a growing lack of...

How do you gather that? I realise I'm challenging people's statements on the forums sometimes and I hope I don't seem rude. But I think it's important that we're clear on what are facts about an organisation such as BACME that are supported by evidence, and what is supposition. If someone has...

Interesting. It would be good to have that response made public, if the MEA deems that appropriate. It's not good for an organisation such as BACME to be allowed to hide any strangeness behind closed doors. These are members of the NHS and, as such, they work for us. I agree.

Excellent blog, @Simon, very clear. Thanks for putting so much work into what will be a very helpful summary for the lay reader. I highly recommend it to those unable to tackle the BMC Psych paper! :thumbup:

Can't remember if the ME Association's (very good) press release has been posted: http://www.meassociation.org.uk/2018/03/reanalysis-of-the-pace-trial-finds-impressive-claims-for-recovery-following-cbt-and-get-are-not-statistically-reliable-22-march-2018/