The amazing DecodeME ME/CFS DNA project that just got funded, is holding a webinar on 6 July. Details to be announced later, presumably - this info is from emails that went out to people who registered for updates about the study.
I registered for the above and got this email in reply: @Andy, how can people who aren't registered with FB submit a question? Do I understand from the above that it will be both on Zoom and FB at the same time?
Yes, I believe so. This isn't the only one that we plan to do, so if you don't get your question answered, or it's not answered later in the FAQ on the website, then there will be other opportunities. As of Friday, we had 1400 people registering for this, so we won't be able to get to everybodies question tomorrow.
https://twitter.com/user/status/1280086817358917632 https://twitter.com/user/status/1280099337469558784
Facebook Live link (no Facebook account needed). Code: https://www.facebook.com/decodeMEstudy/videos/738883713564071/
thanks for updates @Andy my Brain not in gear at the moment so I’ve cancelled my booking so appreciate the opportunity to catch up later. The question I wanted to ask is about recruitment. Some areas don’t have local ME charities or Facebook support groups. I would be happy to try to publicise the study in my area but it is a big challenge for an individual person with ME is there any help available from AFME/MEA in contacting local press, local organisations/charities?
Thanks @Andy. We are spreading the word as requested. Looking forward to what emerges already. Keep well. edited: first sentence
While we are working on the details we will be looking to enable and help patients advertise the study, so watch this space, essentially.
Hi @Andy Good work today. After tuning into the webinar today, I have one suggestion: A prominent timeline or progress chart on the website would really help. Something that clearly shows what stage we are at. People are asking about the questionnaire, whether they've missed the application deadline etc.
If you missed this, or didn't want to watch it live, then this link can be used to watch on demand. It's also now been edited so that the video starts at the start of the Q&A.
Just to say a belated thanks to @Andy and the rest of the team for the presentation yesterday. It was so good for people to be able to put faces to the names, and see a team genuinely engaging with patients.
Q&A is now available on YouTube, both in full and as individual questions. Playlist showing all of these can be found here. Full Q&A Code: https://youtu.be/3dpOFmkW_qM https://www.youtube.com/watch?v=3dpOFmkW_qM
