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Closed UK: DecodeME updates, was recruitment thread.
- Thread starter Andy
- Start date
Andy
Retired committee member
New blog, https://www.decodeme.org.uk/study-extension/ - emails are currently being sent to all participants and those on our mailing list.
DecodeME completion date extended to August 2025
We have an important project update to share with you.
DecodeME participants have done a great job completing questionnaires and returning spit samples. But the next step – extraction of DNA at UK Biocentre – has faced operational and capacity issues.
We have been working hard with UK Biocentre to resolve as many of these issues as possible and to avoid delays. While some issues were mitigated, it became obvious that we simply would not have enough time to perform all necessary data analyses by August 2024, the planned end date.
We discussed this situation with both our Scientific Advisory Board and funders. They agreed with our assessment and funding was awarded to extend the project until August 2025. This will give us sufficient time to finish the project.
We remain fully committed to completing this research to the highest possible scientific standards, ensuring that our findings are as robust as possible. We are acutely aware of the urgency to deliver the study results as soon as possible and we continue to work as hard as we can to fulfill these goals.
A message from our team:
“On the Patient and Public Involvement Steering Group, we recognise that this delay may be disappointing for you, as it is for us. We live with, and see the impact of, ME/CFS on a daily basis. We’re grateful the funders are continuing to support this project with additional funding. DecodeME will deliver results as quickly as possible and we remain hopeful that the study will give us clues that lead to treatments”. Sian Leary, DecodeME PPI Steering Group member.
Watch our video message below.
What’s next?
We continue to formulate plans to build on DecodeME. This includes discussing with other researchers plans for the replication and potential validation of any findings, and working towards securing the longer term future of the DecodeME cohort of participants. We’ll share details of these plans as soon as we can.
We continue to be grateful for your support of, and engagement with, DecodeME. Your ongoing involvement, as a participant, continues to be essential for successfully completing the search for genetic causes of why people become ill with ME/CFS.
DecodeME completion date extended to August 2025
- DecodeME was due to be completed by August of this year
- Extraction of the DNA from samples has taken far longer than anticipated
- Our funders have agreed to a funded timeline extension
- DecodeME will now be completed before August of 2025 – results will be released as soon as possible before this date
We have an important project update to share with you.
DecodeME participants have done a great job completing questionnaires and returning spit samples. But the next step – extraction of DNA at UK Biocentre – has faced operational and capacity issues.
We have been working hard with UK Biocentre to resolve as many of these issues as possible and to avoid delays. While some issues were mitigated, it became obvious that we simply would not have enough time to perform all necessary data analyses by August 2024, the planned end date.
We discussed this situation with both our Scientific Advisory Board and funders. They agreed with our assessment and funding was awarded to extend the project until August 2025. This will give us sufficient time to finish the project.
We remain fully committed to completing this research to the highest possible scientific standards, ensuring that our findings are as robust as possible. We are acutely aware of the urgency to deliver the study results as soon as possible and we continue to work as hard as we can to fulfill these goals.
A message from our team:
“On the Patient and Public Involvement Steering Group, we recognise that this delay may be disappointing for you, as it is for us. We live with, and see the impact of, ME/CFS on a daily basis. We’re grateful the funders are continuing to support this project with additional funding. DecodeME will deliver results as quickly as possible and we remain hopeful that the study will give us clues that lead to treatments”. Sian Leary, DecodeME PPI Steering Group member.
Watch our video message below.
What’s next?
We continue to formulate plans to build on DecodeME. This includes discussing with other researchers plans for the replication and potential validation of any findings, and working towards securing the longer term future of the DecodeME cohort of participants. We’ll share details of these plans as soon as we can.
We continue to be grateful for your support of, and engagement with, DecodeME. Your ongoing involvement, as a participant, continues to be essential for successfully completing the search for genetic causes of why people become ill with ME/CFS.
Binkie4
Senior Member (Voting Rights)
Thank you for telling us so clearly the status of the project and your plans to build on Decode which includes the continuing involvement of participants.
We hope so much that findings of interest emerge that will help in a fuller understanding of ME and eventually lead to treatments.
We hope so much that findings of interest emerge that will help in a fuller understanding of ME and eventually lead to treatments.
The Decode ME project has a huge amount of patient trust, to the extent that I answered fully about my mental health history in the questionnaire, even in the wake of the NIH paper.
Thank you for communicating so clearly about this delay and the reasons for it. I hope that preliminary results come out as soon as possible but know that everything has to be done rigourously. I am glad more funding was forthcoming. We all have our fingers crossed for a fruitful result.
Thank you for communicating so clearly about this delay and the reasons for it. I hope that preliminary results come out as soon as possible but know that everything has to be done rigourously. I am glad more funding was forthcoming. We all have our fingers crossed for a fruitful result.
Clear comms 
You can only work within the capacity that’s available to you.
You can only work within the capacity that’s available to you.
Andy
Retired committee member
You’re invited to the next DecodeME webinar.
This webinar will be a chance to hear updates about the study's progress and have your questions answered.
It’s on Friday 15th March 02:00pm (GMT) on Zoom and Facebook Live.
There are only 500 spots to watch the webinar on Zoom on the day. Don't worry though, if you don't manage to get a place this time (this can happen even if you registered in advance), you can also watch on Facebook live via our Facebook page, or watch the recording when it becomes available on our website.
Register here, https://us02web.zoom.us/webinar/register/WN_BZA99JxPQTKvnC0MhumtAw
Friday's webinar will be a chance to hear updates on the project including our recently announced project extension.
Join Chris Ponting, Sonya Chowdhury and Andy Devereux-Cooke from the DecodeME team to hear the latest news and what's next for the project.
There will also be a Q&A session at the end.
Send us your questions ahead of the webinar by replying to this email [Contact@decodeme.org.uk].
If you can’t make the webinar, don’t worry. There will be a recording available afterwards on our website.
You can watch the recordings or read the transcripts from our previous webinars HERE.
This webinar will be a chance to hear updates about the study's progress and have your questions answered.
It’s on Friday 15th March 02:00pm (GMT) on Zoom and Facebook Live.
There are only 500 spots to watch the webinar on Zoom on the day. Don't worry though, if you don't manage to get a place this time (this can happen even if you registered in advance), you can also watch on Facebook live via our Facebook page, or watch the recording when it becomes available on our website.
Register here, https://us02web.zoom.us/webinar/register/WN_BZA99JxPQTKvnC0MhumtAw
Friday's webinar will be a chance to hear updates on the project including our recently announced project extension.
Join Chris Ponting, Sonya Chowdhury and Andy Devereux-Cooke from the DecodeME team to hear the latest news and what's next for the project.
There will also be a Q&A session at the end.
Send us your questions ahead of the webinar by replying to this email [Contact@decodeme.org.uk].
If you can’t make the webinar, don’t worry. There will be a recording available afterwards on our website.
You can watch the recordings or read the transcripts from our previous webinars HERE.
Andy
Retired committee member
Recording of the webinar is now available on YouTube here
Transcript will follow in due course.
Andy
Retired committee member
Transcript can now be found here, https://www.decodeme.org.uk/webinar-recording-and-transcript-march-2024/
If anyone is interested, I have the free Glasp extension on Chrome and it will generate transcripts of any Youtube video. I think it's pretty good.
https://glasp.co/youtube-summary
Dolphin
Senior Member (Voting Rights)
Peter T
Senior Member (Voting Rights)
They had it in the headlines at the onset of the program, so presumably it will be in second half of the program.
Jonathan Edwards
Senior Member (Voting Rights)
If that's 18,000 data points it is very encouraging. I doubt the difference from 20,000 is going to be statistically critical. It is also quite interesting to see the numbers that are achievable as a very indirect index of prevalence and diagnostic rates etc.
Jonathan Edwards
Senior Member (Voting Rights)
Good programme.
Well done Chris and the lady with ME.
Well done Chris and the lady with ME.
Now up on the C4 News Youtube channel.
Peter T
Senior Member (Voting Rights)
An excellent piece. Particularly well done to Jo Bruce. (I wonder if she is related to Robert the Bruce, I went to the same school as him but he was a few years above me.)
I had watched the whole news bulletin so was struggling by the time they got to this feature, particularly the sciencey bit. I will have to watch the specific clip again later.
I had watched the whole news bulletin so was struggling by the time they got to this feature, particularly the sciencey bit. I will have to watch the specific clip again later.
Thank you. A massive hug to the lady and her husband, and huge wave to team at DecodeME
and great big to Channel 4. "you can never underestimate.... it didn't just steal from me, it stole from him too and you have no idea how guilty I feel about that sometimes." Currently crying with her.
