DecodeME - UK ME/CFS DNA study underway

Somehow I missed that Chris Ponting was involved in Dementia research



Chris Ponting

• UK DRI Associated Member
  
  https://ukdri.ac.uk/team/chris-ponting

 

https://twitter.com/user/status/1297900262728912897

 

DecodeME email and website update.

Email


Website update, which expands on the above, https://www.decodeme.org.uk/funding-announcement-gets-a-big-response/

If you are signed up and haven't seen the email by tomorrow, please check your spam folder. If it's not there, I'd suggest that the best next option would be to try to sign up again. Finally, if you haven't received it and can't sign up again, let me know below - we may not be able to solve individual problems but it's useful for us to know.

Remember, once recruitment opens we will need everybody to sign up seperately to that, so you won't miss out in the chance to take part even if you don't get these updates sent to you.

https://twitter.com/user/status/1298640883424923648

 

Not sure why media link not working but it says today is the start of DecodeME funding as it’s 1 September!

 

https://twitter.com/user/status/1306892493926150144

 

Excellent news! Hopefully there'll be more once it's being recruited through GPs, as some people aren't big users of social media, some may hesitate until they see that the study is being promoted via trusted NHS practitioners, and some may prefer to receive the information in their own languages (which primary care clinics are often reasonably good at doing).

 

https://twitter.com/user/status/1309149563572416512

 

For all of those who have signed up to the DecodeME contact list, an email has been sent out by the communications team about future updates from the DecodeME team. It contains a link to a short (5 question) Surveymonkey survey.

If you haven't seen this in your inbox, please check your junk/spam folder. If you still can't find it then the next easiest troubleshooting step would be to try signing-up again at the bottom of https://www.decodeme.org.uk/ to make sure that you are in the system.

 

Already sorted.

 

Was the survey email only sent out to people in the UK? I got this yesterday, but no message about a survey:

 

Same here.

 

I'm waiting on feedback from the comms team on the points raised by Trish and Dolphin. I'll come back when I know something more.

 

I'm yet to get a reply to my enquiries but in the meantime these have been posted.

Code:

https://twitter.com/DecodeMEstudy/status/1312033391609556997

https://twitter.com/user/status/1312033391609556997

Code:

https://www.facebook.com/decodeMEstudy/photos/a.144895943633950/221221226001421/

 

just to say I had the email with the survey link, i think it was yesterday but it could have been wednesday

 

Me too.

 

I've received no email.

 

I deleted my previous post. I received the following message yesterday, but no link to survey. Could it be because i am out of country? Edit: from post above, yes, because i am not from UK. It may be necessary to mention UK residents only.




Thanks again for signing up to receive updates on the DecodeME study. It’s great to have you onboard. The project is now officially underway and we are doing the necessary work so that we can recruit people into the study from next spring.

As we said before, we are aiming to recruit all participants from the UK, but will recruit internationally if necessary. We will continue to keep you posted with developments and will share more news when we have it by social media, blogs and e-newsletters. In the meantime, we thought you would like to know that we have formally started on the journey.

Best wishes,
The DecodeME team

 

I've had the same message, I think (haven't checked) and I am definitely in the UK! No link to survey.