DecodeME - UK ME/CFS DNA study underway

[NelliePledge]

Just checked - she retweeted the one Sasha linked above and a couple from Sam O'Neill, the Times journo, without adding any comment.

Ok not as helpful as when a comment is added and you can retweet that but good her followers may have seen.

 

[Sasha]

That’s the AFME tweet not Miranda Hart’s

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

 

[Andy]

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

 

[Andy]

Got questions about Decode ME? Join our free webinar!

Huge thanks to everyone who has shared and signed-up to support Decode ME so far. It’s brilliant to see the huge, hopeful reaction from the M.E. community.

Since our exciting announcement about the £3.2 million funding for this ME/CFS DNA study, lots of you have had questions on what it involves and who can take part.

On Monday 6 July at 4pm our Management Team is hosting a free webinar Q&A, open to all. You can already find answers to a range of questions on our FAQ page (www.decodeME.org.uk/FAQs) – and please do come along on Monday to find out more.

To take part in the webinar, please register in advance, and you will receive details on how to join. It will take place on Zoom and a recording will be made available afterwards.

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

 

[lunarainbows]

@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?

 

[Andy]

@Andy, if you join the zoom meeting, do you have to introduce yourself or talk or have your video on?

No, I don't think so.

Can I join and then just listen in without speaking / participating / turning my video on?

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.

 

[Andy]

Numbers signing up to support/take part in #DecodeME at decodeme.org.uk:
8,144 since we applied for funding in Jan/Feb
Plus 14,213 since we launched on 23 June
Out of 22,357 sign ups, 16,532 live in UK with #MECFS and want to take part.

 

[lunarainbows]

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?

 

[Kitty]

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.

 

[Andy]

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?

Yep

 

[Sasha]

@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?

@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...

 

[Sasha]

@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?

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

 

[Hoopoe]

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?

 

[Andy]

@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 would hope that will be the case.

 

[Andy]

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

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

 

[lunarainbows]

Yep

That’s amazing!!

 

[NelliePledge]

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?

14k plus in a week is pretty damn good

 

[rvallee]

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

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

Computer security is.... not exactly great.

 

[Kalliope]

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

 

[boolybooly]

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.