UK Genome Wide Association Study (GWAS) project: indicate your support and/or willingness to take part and/or join the mailing list

An email that has been sent to all who signed up for updates. Still possible to sign up for updates at https://mebiomed.org.uk/get-involved/
Thank you for signing up to show your support of the application and to be kept updated. We are emailing to let you know that we have submitted our application. It has been a massive amount of work but made much easier because of the fantastic support we have had from people like you.

The involvement from the community, patient and public alike, has informed and influenced the research design; we have made decisions based on what you have told us. Our website has changed drastically, thanks to the feedback from many community members and the Patient and Public Involvement Steering Group has provided feedback on, and input to, the application documents themselves.

While we wait for a decision on funding, we are continuing to work on our recruitment plans using the detailed ideas and suggestions from over 550 community members to help shape it.

We will be in touch again soon!

The ME/CFS Biomed Team

PS. We're not able to respond to emails just yet, and instead have answered questions you've sent us so far in our website FAQ, which we aim to update as regularly as we can.
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obeat said:
I am signed up for updates but didn't receive an email. I've checked spam/ junk files.
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Thanks, I will double check but I'm sure that we will have done a single mailshot to everybody on our list so, if you haven't received it, then either the details we have for you are incorrect or your email providers spam filter has intercepted it (on a personal note I had to abandon one of my email addresses due to how aggressive the providers spam filter was). Once (/if) we have our funding, we will be moving our current temporary mailing list over to a dedicated one so if it's being intercepted that might solve it or at that point you could try signing up again.

Appreciate none of those are ideal and/or immediate solutions, however I will obviously keep the forum updated and we will put out social media updates as well when appropriate (we currently have Facebook and Twitter accounts).
 
Apologies for a bit of cross-posting, but on the FAQs page of the DecodeME website, it says:

How long will the GWAS study take to complete?
In total, four years but we will release preliminary results as soon as we can, prior to publication. The sooner we can recruit participants, the sooner the results will be released.

So if we can get 20,000 eligible patients by March 2021, it looks as though we can knock four years off this thing.

Let's email our PwME friends!
 
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