Moderator note: This post and subsequent discussion have been moved from this thread: May 2019 - Awareness Week including Millions Missing Were any U.K. “protests” visibly demanding research funds from our state funders? I’ve watched a few videos where the “general picture” or life stories etc are the focus to raise awareness, I’m just surprised that protests aren’t more part of this than raising awareness. It’s action >> tangible effects/attention >>> change & progress I’m interested in. I realise being ill nearly thirty years I’m at the opposite end to some, particularly those able to do activism and clearly desperate in my posts... I still feel some organisers are at the stage of “wouldn’t it be great if our stories were heard” rather than what’s our five year plan to make definite progress in key areas and what can we do fo facilitate or even , dare I say in the ohsdo polite UK, force this. We had more events in the UK this year but less big press coverage, evidenced by the fact MEA didn’t have to mention it on their page at all this year, whereas other year significant media meant they could not ignore it. Is that really progress? #MEAction are saying give us money to Campaign and we will magnify that into significant research funds, but that isn’t happening and I don’t see why it should on the back of awareness raising days. What I see as really happening in the UK: 1) wait to modify NICE 2) wait for MRC to do what the hec they want, hopefully with at least a token crumb of funds to cover the next years 3) wait for NICE & research to eventually change the nature and number of “CFSME” services 4) wait for more research before name and criteria are improved One woman working on medical education.