"Building Gold Standard Patient and Public Involvement - DecodeME Conference Presentation"

https://www.youtube.com/watch?v=S3SScaC0L1o

Video posted by Action for ME, a recording of the Nov. 12 'Patient Advocacy Panel' session.

"Learn how Patient and Public Involvement worked within the world's largest ME/CFS study - DecodeME, presented at The International Conference on Clinical and Scientific Advances on ME and long Covid in Porto, Portugal."

@mecfs

#MEcfs #DecodeME #PatientAdvocacy #ActionForME

#ActionForME with the ex-health-minister #SajidJavid MP have, at very-short notice, arranged a UK parliamentary debate in #WestminsterHall on #MyalgicEncephalomyelitis #MECFS. It commences, I believe, at 16.30 BST. Hopefully the link to the UK’s #ParliamentTV follows:

https://www.parliamentlive.tv/Event/Index/0c36b6f9-7b6b-4607-8219-24b6db5bc132

#PwME, especially those of us with #SevereME, need the UK charities for #MyalgicEncephalomyelitis to actually become proactive in support of our causes. Such as #ActionForME, #MEAssocation & #MEActionNetworkUK.

Time to step up, speak up, act up!

OK, I am fucking angry about this.

Talked for the first time on a Zoom call to a doctor today about IBS and the first Facebook Ad I see?? Begins with a man saying 'DIARRHOEA!'

I scrolled away as fast as I could, but not before I saw the text underneath confirm it was about IBS.

This is the EXACT REASON Zoom should be sued into oblivion and fined vast quantities of cash for their data harvesting policies. #ActionForME need to GET OFF ZOOM. Your clients' personal info is being stolen.