DecodeME - UK ME/CFS DNA study underway

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Andy said:
I don't know what is usual, but in our specific example I don't think images were supplied. Given that the ME Association were trying to build up a portfolio of realistic pictures of pwME for general press usage, my guess is that most press releases don't contain images.
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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.
 
Thanks @Simon M for your valuable role in this and for your excellent article.
Thanks Sonya Chowdhury for all your efforts on this, and to your son for being interviewed for the Times article.
Thanks Luis Nacul, Eliana Lacerda, Caroline Kingdon and the rest of the Cure ME biobank team.
Thanks Nina Muirhead for the excellent interview.
Thanks again Chris Ponting and Andy.
And thanks to anyone else involved.

You are all amazing.
 
ringding said:
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.
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I think the Decode ME research team could ask the ME Association to supply them with photos they have already collected to send out with any future press releases.
 
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.
 
Andy said:
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.
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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.
 
Andy said:
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".
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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?
 
Sasha said:
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?
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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.
 
Andy said:
On a personal note, I want to thank all the members of the DecodeME team for making this possible, but I'd especially like to highlight the enormous contribution that Sonya, from Action for ME, has made. Here on the forum we may have our disagreements about some of the wording that AfME currently use, but she has made tremendous efforts to get this study funded - in my opinion we would not have achieved this without her.
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In which case, very sincere thanks @Action for M.E.
 
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