DecodeME - UK ME/CFS DNA study underway

Sorry - Miranda retweeted it but I can't see how to pick that up.

 

https://twitter.com/user/status/1278705394832101377


I believe numbers are limited to 100 watching/taking part live, as it says it will be recorded and available afterwards.

 

Code:

https://www.facebook.com/decodeMEstudy/posts/196765338447010

 

@Andy, if you join the zoom meeting, do you have to introduce yourself or talk or have your video on? Can I join and then just listen in without speaking / participating / turning my video on?

 

No, I don't think so.

Yes, I think so.

As I understand it, we will have somebody helping us out, collecting live questions from Zoom's chat function. In case everybody just wants to see us live and has no questions, we've collated a number of questions that have cropped up since the funding announcement.

 

https://twitter.com/user/status/1278718826041888775

 

Are these all 16,532 individual people? Just wondering because I signed up to both websites so did you account for the double sign ups?

 

It's great that numbers have gone up so quickly. I saw a Facebook survey from the MEA earlier, asking whether people had signed up – quit a few were saying they hadn't yet, but planned to do so.

 

Yep

 

@Andy, is it possible to set things up so that, by default, people's videos and mics are off? Otherwise, people watching in their jimjams might get some unfortunate exposure...

 

I have a piece of card taped over my laptop camera so that I'm never accidentally visible!

 

Ah, so not 10000 in a few days. That was hard to believe! Still great interest and enthusiasm.

Do you have information on what percentage meets the entry criteria?

 

I would hope that will be the case.

 

No, because actual recruitment into the study doesn't start until March next year.

 

That’s amazing!!

 

A good practice that everyone should follow. Unplug if possible, obstruct if not.

Computer security is.... not exactly great.

 

Nice to see chief reporter in The Times excited about these excellent numbers and encouraging people to sign up

https://twitter.com/user/status/1278719961213497345

 

I hope that a large data set will overcome the obstacles that obstructed Dr Kerr and his gene expression experiments since he had only about 50 patients and the computer analysis was unable to find predictive patterns of gene expression.

This experiment should avoid the problems of changes in patterns of gene expression over time in individuals, which may have obscured the gene expression studies but it will still have to contend with multiple subtypes. So I hope the data analysis will be up to the task. Good luck.