DecodeME - UK ME/CFS DNA study underway

That does not look right but maybe I am not understanding and maybe it is irrelevant.

 

No, you're correct. I'm only out by a couple of decimal places, which is nothing between friends, right?? I'll edit my post accordingly.

 

It's not an important point.

 

DecodeME Twitter wrote

https://twitter.com/user/status/1334904710780874757


Link in full, https://www.decodeme.org.uk/join-our-winter-webinar-qa/

 

Science behind DecodeME uncovers potential Covid-19 treatments

https://www.decodeme.org.uk/science-behind-decodeme-uncovers-potential-covid-19-treatments/

 

Email update.

 

I read through the FAQ on the website this morning, which says it might possibly be delayed slightly due to the change in lead centre on recruitment.

 

@Andy - did you want to create a calendar entry / new thread for the webinar that's on today?

 

Honestly, no, I didn't intend to. I am tempted to create a new thread for the study, focusing on updates, perhaps I'll do that for next year.

 

Fair enough - just a bit concerned that people might not realise there's a Q&A on today.

 

@Andy these Q&As are really helpful - thank you.

 

Thanks Tia, always nice to get feedback.

Should be available to rewatch now via Facebook at the link below. It will also be uploaded to the DecodeME YouTube channel soon, https://www.youtube.com/channel/UCcZO9TwFK7dSJUruzYqJj9A

Code:

https://www.facebook.com/decodeMEstudy/videos/399977841104754/

 

Solve M.E. has announced their involvement in the DecodeME study

https://solvecfs.org/you-me-has-joined-the-worlds-biggest-study-of-me-cfs/

 

Lots of good could come out of this. I often see people requesting about tracking apps and usually the complaints are that it's nice and everything but people don't want to track stuff just to track stuff, they want it to be used for research, or at the very least to count things, to make it meaningful.

I've never really done this journal thing. It's obvious that nobody cares about it, you can be super rigorous about it, tracking for months with annotations and at best a GP will give it 10 seconds of eyeball time, most of it rolling up.

The point isn't to be busy. The point is for relevant data to become relevant information, then turned into useful knowledge. This app is the right thing for the moment, it sure would be great if some big powerful research institutions found such things interesting. Or we can just do it ourselves I guess that's another way of doing things when the people whose job it is to solve those problems badly do not want to even try.

 

From the FAQs, https://www.decodeme.org.uk/faqs/#latest-updates

 

Full webinar can now be viewed via YouTube.

Code:

https://youtu.be/z7lXOYQnyH4

https://www.youtube.com/watch?v=z7lXOYQnyH4

 

Administration Manager

https://elxw.fa.em3.oraclecloud.com...en/sites/CX_1001/job/168/?utm_medium=jobshare

 

All the questions and answers have been time stamped, so if you don't want to watch the whole thing, you can jump to what you are interested in.

https://twitter.com/user/status/1340998070511824897

 

I thought the webinar came across really well.

Very positive about involvement with Solve.

 

https://twitter.com/user/status/1344955007750303744