Search results

Maybe they've done another one. :)

Good point - though even if it's posted, I don't know if many will now read it. I can't remember where I saw that link.

You just click on the 'forums' tab on the menu bar, chose a subforum (Advocacy Action Alerts, probably), click Post New Thread and you're off. :) :thumbup:

Doug Altman has just died, alas - that must be why this resurfaced.

Argh! So sorry. I linked to it from something current and didn't check the date. Sorry I made you waste your time writing a response. o_O:oops:

And @Jonathan Edwards! :)

Edit: Argh, it's four years old! :( Interesting, and one can make comments, @dave30th! https://blogs.bmj.com/bmj/2014/01/31/richard-smith-medical-research-still-a-scandal/

Welcome back! Since you're making a call to action, would it be good to start a new thread specifically about that? Not everyone who might respond might be reading this thread.

I think that part of the reason that patients have been so powerless in direct advocacy in the past has been that not all groups have professional-level communications skills, which is important if you want to appear credible to professionals. One of the strengths of #MEAction is, IMO, its...

For anyone who didn't see this, it will be well worth watching the playback. Chris Ponting stuck a polite boot into the PACE trial more than once, and did an excellent job. In future, I'd like to see the conflict between the objective and subjective outcomes in PACE played up more - I think...

@Emsho, you were brilliant! One of the MPs mentioned 'leadership and courage' and you just demonstrated that in spades. Your presentation at the beginning was so brave, eloquent and moving. Thanks so much for doing this for all of us. I hope you don't get too much PEM payback!

ME bit on right now! @Simon M

I didn't realise Chris Ponting would be giving evidence! :thumbup: It's streaming now - they're talking about various petitions but not the ME one yet.

A bump for this, which is on today. Do we know what time it starts?

And, importantly: and

Thanks for posting, @Gecko - I've given it a new thread so it can go in the calendar. https://www.s4me.info/threads/uk-21-june-2018-3-hour-me-debate-in-westminster-hall-secured-by-carol-monaghan.4468/

I misread that as 'I think it is great captive people with ME are getting together'. :confused:

Well done to Carol for getting this done. Details here: https://www.meaction.net/2018/06/06/uk-secures-westminster-hall-debate-on-me/ I don't know whether this precludes a debate in the House of Commons...

@Simon M posted a blog a few days ago about this clonal expansion work and the fact that Chris Ponting at Edinburgh has got funding for a PhD student to follow it up (with some help from the Sanger Institute to make the underlying technology much faster and cheaper to throughput more patients)...

Hi @Emsho - thanks for the info, and good luck for tomorrow. Take it easy! :)