DecodeME - UK ME/CFS DNA study underway

Yes, we don't want to confuse people!

 

It's going off topic a bit but I wonder how much it'd cost to get some professional photos taken that truly represent ME for sending out with press releases. The photos are often what draw people to articles, it could be money well spent in awareness raising.

 

Desktop, Windows 10, Firefox 77.0.1. Do you receive a confirmatory email after registering? I haven't received one but don't know if that's a sign I didn't register properly or whether no such emails are sent.

 

What a brilliant bit of news to wake up to! Amazingly well done to all those involved.
I have shared link as widely as I can- it would be great to hit the 20,000 mark within a few months if we can.

I know people have already signed up this morning on the back of the press coverage - we need to try and ensure we can get more coverage after a few months to keep it in news.

 

https://twitter.com/user/status/1275373973635764224

 

Thanks, I've passed the information on. I don't believe that a confirmation email is sent, if I'm wrong then I'll let you know.

 

No, I don't think one is sent. Would have been a good idea. However, making that change now might cause more confusion.

 

On the old mebiomed site, it said: 'We do not yet have funding in place and are temporarily using SurveyMonkey so that you can register your interest. Please note that you will not receive a confirmation email when you register.'

If it's possible to send out a confirmation email via the new site, I think it should be done - people expect one. I don't think it will be confusing - people who haven't signed up via the old site won't be aware of the old practice.

 

https://twitter.com/user/status/1275388698008444929


Interview starts at the 12:20 time stamp.

 

No, but it won't hurt if you did it again. Once recruitment opens, even if people have signed up for the updates, they will need to sign up "properly".

 

But doesn't that just mean that we'll get an email via signing up to the old site asking us to do that at a later date?

 

Wow. Really amazing! Thank you so much to everyone involved for making this happen.

Besides the image in the Guardian and the Whipple bit in the Times we saw some pretty good coverage.

Times are changing! Good job!

 

Thanks a lot to everyone involved.
This is fantastic news for all ME / CFS patients. This gives motivation and hope.
Thank you again.

 

That assumes that a. we wouldn't email both lists at the same time, and b. that we wouldn't clean the lists by removing obvious duplicates. I don't know, at this stage whether we will or won't do those things, but they seem, hopefully, to be obvious and sensible things to do. But, on balance, I think I would still prefer to send people two emails asking them to do the same thing rather than risk not sending them any at all.

 

https://twitter.com/user/status/1275386728229068806

 

In which case, very sincere thanks @Action for M.E.