Closed UK: DecodeME updates, was recruitment thread.

TV chef Jamie Oliver has said his wife has
Long Covid. Maybe worth a contact?

 

Thanks. I think he is on the list of potential contacts already, if not I'll ask that he is added.

 

This is such a good idea; it would reach a really different kind of audience than what we normally get

 

"Did you know that tomorrow is the International Day Of #WomenInScience? We’re proud to have many strong women on the DecodeME team. Here are just a few of them (who we could convince to share photos!) working hard on DecodeME behind the scenes! https://decodeme.org.uk"


[Click image to expand]

Facebook: https://www.facebook.com/decodeMEst...Y6Ro8FbRDH7vsjFxJ7CCEJ3dycY1or1LW3R3VViQd3fql

 

National Institute of Health Research's Clinical Research Network South West tweet

"Are you 16 or over, living in the UK with an ME/CFS diagnosis? @DecodeMEstudy wants to pinpoint the causes of ME/CFS and ultimately help find treatments. Sign up and complete the questionnaire about your symptoms and experience via the link below. decodeme.org.uk"

AfME tweet

"Episode 8 of our Learn about M.E. podcast is live! We’re excited to release the next podcast episode in our Learn about M.E. series, focusing on the ground-breaking @DecodeMEstudy and why it's important to #pwME."

"You can listen here: ow.ly/qiEp50MSOzL The episode discusses the great need for this genetic research into such a neglected health condition and its potential to uncover new treatments for M.E. It also outlines how people can sign up to take part in the DecodeME study."

 

That's awesome! I hope lots of people sign up.

 

A trick of a sort on a Facebook group is an admin can write @everyone and all members get a message that they are tagged in the thread.

A lot of messages to a Facebook group are only seen by a small number or percentage of members. Doing this would dramatically increase the numbers who would see a message. I think there are tens of thousands of people in the UK on ME/CFS Facebook groups if they could only be reached. This method might help reach more if people could persuade admins to do it for DecodeME messages.

 

Thanks. I realise now my message is a little ambiguous: I wasn't expecting it to be done for every DecodeME message.

 

Blog: A visit to the UK Biocentre, https://www.decodeme.org.uk/a-visit-to-the-uk-biocentre/

"Claire Tripp – Patient and Public Involvement Team Member

Last month, I visited the UK Biocentre in Milton Keynes, along with Prof Chris Ponting and Dr Diana Garcia, the DecodeME project manager at the University of Edinburgh. The purpose of the visit was to personalise the work they are doing at the Centre for DecodeME and explain where they fit into the wider project. To look beyond the science, and the data, and instead to make it about the people who we are studying and why."

Facebook: https://www.facebook.com/decodeMEst...KmdN8QPY1T3RTDYxAZoMcBQgH8CdxfDyNrC421F8MXRrl

 

This German newspaper article says a new group Mirame Arts are going to help with the marketing of DecodeME.

 

Key passages Google translated:

The rest is an amenable discussion of ME/CFS (one heading reads, "Recognized as a physical illness since 1969, but still psychologized") and overview of the new organization:

 

I think Martin is a member here, I can't remember his user name.

 

I tweeted this yesterday, and I'm sharing because I think it's important. @Andy would you or someone from DecodeME be able to raise this with the MEA?

https://twitter.com/user/status/1630594071897989122

 

Honestly, I don't feel that it would be right for us, as DecodeME, to ask a particular charity to copy what another charity might have done in terms of promoting us. We are grateful for all the support shown to us in all different forms; I know that the MEA has featured us in their members magazine, and I get the impression that they are the most active in terms of social media posts that promote us.

 

Just reported via the website that I've received a mail today inviting me to take part, even though I submitted both the questionnaire and my sample last year (the sample has been received, but may not yet have been analysed).

Hopefully it's just an isolated glitch, but I thought I'd send a heads-up in case other registered participants have received the email as well.

 

If anyone else finds it useful -- QR code to the DecodeME website/ 'ways to share' attached.

(Created by https://goqr.me/ )

 

Just heard today that they were able to extract my DNA from my sample.
It was posted 17th Oct, it appeared to have gone astray, but turned up end of January.

 

I received an email today or yesterday saying the same. Was yours an email?