Closed UK: DecodeME updates, was recruitment thread.

Andy said:
New blog

Inviting More Participants to Donate DNA

  • DecodeME can now invite even more people to donate their DNA.
  • This is because we will apply an additional scientific method to ensure that our genetic findings are due to ME/CFS and not to common co-occurring conditions.
  • This new opportunity came after reviewing our genetics analysis steps, and after positive discussions with our Scientific Advisory Board.
  • The new plan will make DecodeME more inclusive and more likely to increase its number of discoveries
  • DecodeME study criteria are still based on two internationally-applied sets of criteria, the Canadian Consensus and IOM Criteria, both of which require post-exertional malaise. Furthermore, participants are still required to have an ME/CFS diagnosis to participate.
  • Some, but not all, participants who were previously unable to donate their DNA, will now be invited to do so by email.
Read more at https://www.decodeme.org.uk/inviting-more-participants-to-donate-dna/
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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.
 
Barry said:
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.
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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?
 
Andy said:
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?
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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.
 
Barry said:
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.
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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.
 
"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"

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Facebook: https://www.facebook.com/decodeMEst...M3s6ePUtgLW6G8xxr5ToSZQzXanwu74hYXegqsJScGR8l
 
SNT Gatchaman said:
(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!)
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Maybe that's a research project worth doing? Perhaps ANZMES would fund some work to make a proposal to take to the NZ government? It would be in ANZMES' interest to do that, as it would build links with the Long Covid groups.
 
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?
 
Tia said:
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?
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Thanks for the suggestion Tia, I'll pass it on to the DecodeME team.
 
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