Closed UK: DecodeME updates, was recruitment thread.

There is a bunch of articles in the media at the moment about our initial analysis of questionnaire answers. The separate thread for this publication can be found here, Typing myalgic encephalomyelitis by infection at onset: A DecodeME study, 2023, Bretherick et al, and obviously we hope this extra coverage will help reach people who haven't yet participated.

 

Guardian has an article on analysis of questionnaires, page 13. Written by Hannah Devlin, Science Correspondent. It's good apart from starting by calling it CFS but then morphs into ME/CFS.


edit: change to page number 13

 

Thanks Binkie. Does it link to the DecodeME website in that version?

 

No it doesn't. No reference to inviting more participants that I could see.

 

Just saw this tweet from the famous musician and ME sufferer Stuart Murdoch.

His twitter account @nee_massey has 36.5K followers and his band account @bellesglasgow 98.6K followers.

I searched his twitter history and haven't seen any mention of DecodeME (although it's possible he may have retweeted as the advanced search doesn't cover those).

Considering his large follower base it could be worth reaching out and asking him to make a post about it / retweet it. It looks like he's done advocacy work before with Charles Shepherd so I think he might be receptive. Happy to try myself but again would mean more coming from someone in the community with more clout that myself ( maybe @Tom Kindlon ?) Or otherwise the decodeME team could reach out if they wanted (not telling you how to do your job ofc).

The search parameters I used: (DecodeME OR ME/CFS OR decode OR GWAS) (from:nee_massey OR from:bellesglasgow)

 

He has tweeted about DecodeME previously, see https://www.s4me.info/threads/uk-de...-12pm-12th-sept-2022.29463/page-6#post-437454

as for the "self interest of charities", the less said about that ridiculous claim the better.

 

Latest newsletter from DecodeME,

"As we approach one year since DecodeME’s full launch, we’d like to update you on how things have been going.

• Firstly, we can confirm that over 23,000 people have signed up and completed their questionnaire, over 19,000 of whom have also been invited to provide a DNA sample. This is great news, thank you to everyone who has participated!

• However, we are still only 75% of the way to reaching our goal, so we still need more participants! Please continue to help us spread the word to people with ME/CFS about the opportunity to take part in the world’s largest ME/CFS research study! You can find resources to help you do this on our Ways to Share page.

• We recently became able to invite more participants to donate their DNA to the study, you can read more about this change in our blog post: Inviting More Participants to Donate DNA.

• Initial findings from the DecodeME Questionnaire Data Published. Having analysed the questionnaire data from the first 17,000 participants, our findings, have been published by NIHR Open Research. You can read the summary of the findings on our blog.

• DecodeME’s Investigator Professor Chris Ponting recently spoke about the study and the importance of ME/CFS research in Thomas McCann’s documentary ‘Living With ME’. You can watch the full documentary on YouTube. (Trigger warning: the full documentary contains conversations on suicide).

If you haven’t yet signed up as a participant in the DecodeME study, but would like to do so, please visit www.decodeme.org.uk/portal.

Thank you for supporting the study, we couldn’t do this without you!


Warmest wishes,
The DecodeME Team"

 

I'm a bit confused, what is the "self interest of charities" in reference to?

EDIT: Just seen you mean the embedded tweet that Stuart Murdoch is replying to - yes, I of course agree that it's a ridiculous claim

 

I hope one or move statistics relating to ME/CFS following Covid are realised by the team before recruitment closes as it is a useful hook to get it shared widely among the Long Covid community.

 

“Over 23,000“ completed the questionnaire before this newsletter but 17,074 of them were included in the questionnaire paper having completed the questionnaire between 12 September 2022 and 19 December 2022.

Shows how things slowed down. Hopefully there was a decent bump from the recent media coverage.

 

Posted on DecodeME’s Facebook page yesterday:


We believe there are no better spokespeople on ME/CFS than the people who live with it.

For our last participant recruitment campaign, #DecodeME would love to hear from anyone, who would be happy to share their experience of ME/CFS and taking part in the study with the media.

If you have participated in the study, will be available to be interviewed at some point during the last two weeks of September, and are comfortable with talking about:
• Your personal experience of ME/CFS and how it has impacted your life.
• How you found the survey experience
• What the DecodeME study means to you and why more people should participate
we would love to hear from you.

Please email us at contact@decodeme.org.uk with your name, phone number and home location (just nearest town is good) and we will get in touch.

Please be reassured that we are conscious how important it is to not make too many demands on your time, energy, and emotional wellbeing, so each interview can take place either remotely (via email, telephone or video call) or in-person, subject to location. We are also happy for a family member or your carer to be involved.

#MECFS #PwME

 

Note how it says “last participant recruitment campaign”: if people are going to try things to highlight it to others, best not delay too long.

 

From Facebook:
4,000 spit kits have been sent out and not yet returned. If you still have yours, please try to return it soon.

We understand producing a sample can be tricky, see our FAQ for advice: https://rb.gy/om2il

Every sample returned strengthens the results of our research.

 

Over 18,000 DNA participants now

 

Email newsletter

"Firstly, a big, one year since launch, thank you to everyone who has participated in the study so far. We couldn’t do it without you!

We now have some important information to share:

We are now in the final stage of participant recruitment and, if you haven’t already done so, you have until the 15th of November 2023 to complete your online questionnaire.

At 5pm on the 15th of November, we will be closing our registration portal to both new participants and to those who have signed up but not completed their questionnaire.

Participants, who sign up and complete their questionnaire by the 15th of November deadline, and who are invited to participate in the DNA stage of the study, will be sent a spit collection kit. Final deadline for posting these back to DecodeME is the 31st of January 2024. As there can be unpredictable delays with the post, especially over the holiday season, please post your kit back to us as soon as possible and before this date, if you can.

This is the last call to sign up and be part of the DecodeME study. Please join those in the ME/CFS community who are doing something extraordinary by taking part.

Almost 25,000 people have already signed up and completed their questionnaire, and almost 20,000 participants have also been invited to provide a DNA sample. This is great news, thank you to everyone who has participated!

However, we still need more people, and this is the last chance to be part of this ground-breaking study. So, if you, or someone you know, are 16 or older, live in the UK and have a diagnosis of ME/CFS, please do take part now to help us decode ME/CFS at http://www.decodeme.org.uk/portal

Finally, we currently have over 4,000 spit kits that have been sent out and not yet returned. If you have received your kit, but have not yet returned it, please send it back to us as soon as possible. If you have questions about returning your sample, then our FAQ page has a number of answers that might prove useful. Each sample returned will strengthen the results of our research, so we appreciate every kit sent back.

If you have been waiting more than three weeks for your kit, since receiving an invite to take part in the DNA stage, please contact the DecodeME team, email info@decodeme.org.uk team or on 0808 196 8664, and we will investigate and order you a replacement kit, if required. The final deadline for requesting replacement kits is the 15th of November 2023.

So, if you are yet to complete your questionnaire or haven’t yet signed up as a participant in the DecodeME study, but would like to do so, please visit www.decodeme.org.uk/portal before the 15th of November.

Thank you for supporting the study,

Warmest wishes,
The DecodeME Team"

 

Might be a bit too late, but I wonder if the ME Association would agree to do one of their regular polls on reasons for not returning a spit kit? Or whether a Twitter/X poll would be worthwhile?

It would be interesting to know the reasons for some of those kits not being returned. Some possibilities that come to mind:

I can't get to a postbox to return it
It's too difficult to give a sample
I haven't received a kit yet
I've received a kit, but it got lost/damaged
I've already returned mine, but I still get reminders to send it back
I'm going to do it but I haven't had time yet

It might give the team an idea of whether it would be useful to to highlight particular things – e.g., to remind people that Royal Mail can collect packages, or if someone's mislaid their kit it's fine to ask for another one, or if they're still getting reminders it could mean their sample got lost in the post.

 

If I remember correctly, everybody we send a spit kit to gets two email reminders. Like everything else we have tried to balance things so that reminders get sent out but hopefully not too soon after the participant should have received it. Equally, we only send two, obviously what we hope is reasonably spaced apart, because we don't to overload someone who might be struggling with it.

 

I’m now confused by this given what the newsletter says:
—-
Almost 25,000 people have already signed up and completed their questionnaire, and almost 20,000 participants have also been invited to provide a DNA sample. This is great news, thank you to everyone who has participated!
[..]
Finally, we currently have over 4,000 spit kits that have been sent out and not yet returned.
—-
These don’t suggest over 18,000 people have successfully submitted DNA samples?
—
The August newsletter said:
—
over 19,000 of whom have also been invited to provide a DNA sample.
—-
So I presumed the 18,000 DNA participants didn’t refer to this as such a number should go up, not down.

 

Apologies on behalf of the team for this not being clearer. The "18,000 DNA participants" referred to in August would have been more accurately described as "18,000 participants invited to donate DNA".