DecodeME - UK ME/CFS DNA study underway

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Somehow I missed that Chris Ponting was involved in Dementia research

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Chris Ponting
 
DecodeME email and website update.

Email
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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.

 
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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).
 
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.
 
Andy said:
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.
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Already sorted.
 
I didn't get the email, despite registering and receiving previous ones. I have just re-registed. It said 'thanks for registering', which suggests to me I had somehow fallen off the list.
My daughter hasn't received it either.

Edit: I then immediately received 2 identical emails thanking me for registering, but no email yet inviting me to do the survey.
 
Andy said:
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.
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Was the survey email only sent out to people in the UK? I got this yesterday, but no message about a survey:
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
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Trish said:
I didn't get the email, despite registering and receiving previous ones. I have just re-registed. It said 'thanks for registering', which suggests to me I had somehow fallen off the list.
My daughter hasn't received it either.

Edit: I then immediately received 2 identical emails thanking me for registering, but no email yet inviting me to do the survey.
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Same here.
 
I'm yet to get a reply to my enquiries but in the meantime these have been posted.
If you opted into email updates when you signed up to the #DecodeME study, check your inbox for our latest email update. For UK-based people, this email includes a survey asking for comms preferences between now and when recruitment begins. Please comment your thoughts below
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Code: 
https://twitter.com/DecodeMEstudy/status/1312033391609556997



Yesterday we sent out an email update to everyone who has signed up to the DecodeME study and opted in for email updates. For UK-based sign-ups, this included a link to a survey on Survey Monkey asking about what future updates you’d like to see.
If you’ve not received an email, it could be for one of the following reasons:
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Your email has categorised the email as spam (check all folders)
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the email has bounced
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you didn’t opt-in to email updates when you signed up
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you registered yesterday and our contacts info hadn’t updated by the time the email went out.
If you didn’t receive an email, feel free to comment below on the nature of updates you’d like to receive between now and when recruitment launches in spring 2021 (e.g. info on ‘the science’, updates on proceedings, numbers updates).
As always, spread the word to sign up at decodeme.org.uk/
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Code: 
https://www.facebook.com/decodeMEstudy/photos/a.144895943633950/221221226001421/

 
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
 
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