Search results

Absolutely Annie I think this is very important.

Location says Brighton, so I assume it will involve Neil Harrison.

At the AGM of AfME, they said that when they get a significant legacy donation they try and use it for a specific project that they would not be otherwise able to fund and had decided to fund this advocacy project via an organisation in Geneva. I think their members and the rest of the ME...

Invest in ME is a small charity that mainly runs the annual International Research Conference in London. Richard and Pia have two "children" - with ME and their Chair has ME herself. Jo Best posts on here on their behalf. They do not have members as such. So I do not know whether any of their...

Could have been drawn with him in mind!

@Sly Saint Love the picture. Maybe it could be part of a placard at Millions Missing, with several different obnoxious statements in the speech bubbles? Do you have a suitable cartoon for Sharpe or Crawley?

BUT, aren't exercise and antidepressants contra to the IOM report as AHRQ (or whatever the appropriate entity) have removed recommendations for CBT and GET. IOM also clearly stated that ME is not of psychological origin, so why antidepressants?

Good to see you on here@jaimeS

#Justice4ME gets my vote

Link to the Southampton event https://www.facebook.com/millionsmissingsouthampton/ They are also happy to provide suitable footwear, so you can just send a message for the tag, and they will do the rest.

this is a gargantuan waste of research money... Good for further motivation to support DT.

For those who are interested in Gregor Purdie as medical Adviser to AfME here is something he authored in 2010, for Scotland. http://www.scot.nhs.uk//wp-content/uploads/2015/06/GoodPracticeStatement.pdf " Graded exercise therapy (GET) is intended to redress decline in physical fitness due to...

have been enjoying retweeting and liking these, along with some of Mick's other howlers. It's worth joining twitter if only for retweeting ME comments

A way around regulations is covert advertising, e.g. by getting 'personal experience' or 'recovery stories' in the media. .......or persuading someone to do an unethical trial on vulnerable people, who then skews the results to show improvement where there was none

Thanks again for all your meticulous work over the years, following this complicated process. Your perseverance and dedication is admirable. I propose that all the above Pic'n'Mix be renamed YUMS. Yet to be Understood Medical Symptoms!

Hello Clare Thank you again for your participation in this forum. People above have made good comments about PACE showing that PACE-style GET and CBT do NOT lead to significant improvements in ME. Also that either can result in significant harms and deterioration. However there are several...

Wonder if DT could be a rep for invest in ME?

William Weir was at the last one.

I think I may even try and see mine!

Mary Dimmock et al's paper on economic cost of ME in USA, was a good starting point over there. As JE says above it can be a good starting point to say " this is likely to be an underestimate of the costs, due to x,y,z".