Closed UK: DecodeME updates, was recruitment thread.

putting up posters, another old friend also saw my tweet and asked if they could help

 

@chillier

Great idea. What size is your poster?

 

I think A3

 

Fantastic, thank you.

 

Do we know when the kits will be getting sent out. It's quite a few weeks since my wife was told she would be getting sent one, but no sign of one yet, nor the email to say one was being sent.

 

It's only just been three full weeks since we sent out the invitation. Has she clicked on the button in the invitation email to indicate that she would be happy to donate a DNA sample?

 

Sorry, yes we just double checked and realise it was only 26 June she did it and the email did say it would be a few weeks, and she did get confirmation of having applied. Just feels like a long time when keen to be part of it , should have double checked first. Our apologies.

 

We're are obviously delighted that she's so keen to take part. The kits are sent out in batches, and then the Royal Mail have to get it to you, so sadly it isn't as quick as we would like. If it hasn't turned up by the end of next week then send the team an email at info@decodeme.org.uk and they will be able to check on it for you.

 

Thanks Andy.

 

"We’ve have over 18k DNA participants!
Thank you to everyone who has taken part so far and for the great support in helping us spread the word!
We are 75% of the way there and still need more so keep sharing!
We are so thankful for the response after inviting more participants to provide DNA. Thank you for your support and enthusiasm. This change has made a great impact!
You can still sign up to #DecodeME: https://rb.gy/sbpzd"

Facebook: https://www.facebook.com/decodeMEst...M3s6ePUtgLW6G8xxr5ToSZQzXanwu74hYXegqsJScGR8l

 

Yes, that's right.

 

Great news! I'm guessing maybe that means 14-15k DNA samples actually being received with an ~80% sample return rate. Fingers crossed we'll get there and thanks for all you do.

 

About to put my wife's sample into the post box shortly .

 

(I know over 2000 NZers with post-Covid ME, most of whom would be mad keen on the opportunity to contribute - shame we're not in spitting distance!)

 

Last Friday I got my spit kit in the as part of the new wave under the extended criteria. Got it sent back yesterday, when my PA was here to post it.

 

A short blogpost by a participant:
DECODEME STUDY
https://lizakarlewriter.wordpress.com/2023/08/04/decodeme-study/

 

I just listened to Wednesday's episode of Woman's Hour:

https://www.bbc.co.uk/sounds/play/m001pmkp

Martine McCutcheon was on to talk about menopause but the interviewer was keen to talk to her about her ME/CFS. The interviewer, Nuala McGovern, also brought up, of her own accord, the new govm't consultation on ME/CFS. I thought she seemed like she was quite interested in ME/CFS and that maybe would be interested in hearing more about DecodeME? Could DecodeME or the ME Association pitch a piece about the research and perhaps about the consultation too? Maybe it would be a good way to get the word out about Decode. I've written to them in the past to ask them to cover ME but with this new presenter, maybe it's worth asking again?

 

Thanks for the suggestion Tia, I'll pass it on to the DecodeME team.