Closed UK: DecodeME updates, was recruitment thread.

isn't he just @Trish

 

Wow, I missed the broadcast but just now watched the YouTube video posted here, thanks for the link. So fantastic to see Channel 4 take this topic up again! Another very well-presented, thoughtful and realistic piece .Huge kudos to them.

 

DecodeME launches data access process

29 April 2024

• With your help, DecodeME has built the world’s largest data set on ME/CFS.

• 86% of DecodeME participants consented to sharing their de-identified data with other researchers and 95% of participants consented to being recontacted for new research projects.

• By allowing other researchers to access this data, we hope to accelerate research towards possible diagnostic tests and treatments for ME/CFS.

• The Data Access application process is now open.

• All applications will be reviewed by our Data Access Committee and will only be approved if they meet our high standards, are ethical and worthwhile.

More at https://www.decodeme.org.uk/data-access/

 

Blimey, that's a novel approach to research!

Seriously, it's great news. Well done to everyone on the team.

 

Some days when it's hard stringing a sentence together I let songs speak for me, big shout out to the DecodeME team working incredibly hard, with appreciation and thanks.

Clean Bandit - Rather Be (feat. Jess Glynne) (Radio 1's Big Weekend 2014) - YouTube

 

Great

 

This makes me wonder whether this was asked of PACE participants. The authors made a big deal of hiding the data because of the potential for abuse, which as it turned out was completely unfounded, but we don't know what PACE participants agreed to. I wouldn't be surprised if similar % agreed to the first, although probably lower on being recontacted for new research projects, given how likely it would be that such new research would be similarly wasteful.

 

"The study also aims to see if there's a difference in iciHHV-6 frequency between ME/CFS patients who initially had symptoms suggesting an infectious disease and those who didn't"
https://twitter.com/user/status/1790703094201753805

 

Super cool to see that this second project based on the DecodeME data will be launched. I hope more people have sensible ideas for useful projects and that more and more projects can follow.

Since there appears to be other viruses that are also capable of Chromosomal Integration, including EBV, that could already lead to different projects similar to the one above in the years to come.

 

I've created a new thread for this new study, Uni of Glasgow: Inherited chromosomally integrated human herpesvirus 6 (iciHHV-6) in DecodeME [Analysis completion planned for end of Sept 2024]

 

In ME Assoc: How Many People in the UK have ME/CFS?, Simon M said:

Wow, if 100k Brits have a diagnosis under G93.3, that means DecodeME managed to scoop up almost 20% of the entire population with ME. I don't know how often researchers try to recruit a significant fraction of all eligible people, but I'm impressed. This shows the ability of DecodeME researchers to build trust and promote their study, but also the dedication and willingness of pwME to contributing to research. It's hard to get even healthy people to participate in things like this, but for many participants, doing the questionnaire or giving a sample was the only thing they did that day or even that week. Thank you.

 

Job description

Summary:

Job Title: Communications and Engagement Officer

Reports to: Research Manager

Salary: Up to £30,000 FTE

Annual Leave: 30 days + 8 bank holidays / annum FTE

Contract Type: Fixed Term Contract to 31st August 2025

Hours of work: Full time (35 hrs per week). We consider part-time/job-share and flexible working requests including condensed hours.

Office Base: Fully Remote

Application Closing Date: 12:00hrs, 19th June 2024

https://actionforme.recruitee.com/o/decodeme-communications-and-engagement-officer

 

I am out of the loop so I apologize as this must already have asked previously — I recall that the first results from DecodeME were expected to be publicly released in August or September, is this timeline still holding up?

 

I'm not sure if there are some preliminary results planned to be released, but they pushed study completion back a year to August 2025.

From their FAQ:

"DecodeME will now be completed before August of 2025 – the results will be released as soon as possible before this date."

Blog with details about timeline extension.

 

Unfortunately not. As explained in the blog that forestglip linked to above, third-party supplier delays forced us to apply for an extension of a year from our funders.

 

That's somewhat sad. I'm anticipating your results because I'm hopeful we'll learn a lot from them. It might be the second major event in ME/CFS history since I became familiar with the disease in 2021 and saw the publication of the new NICE guidelines.

 

Thank you @Andy and @forestglip. I am as eager as everyone else to see the results but I would much rather that you take the time you need to conduct this study rigorously rather than having to compromise because of these supplier delays.

 

The team have sent out an end-of-year review newsletter to all those signed up. Full text below

"As we approach the end of the year, we wanted to thank you and provide an overview of everything we have achieved together in 2024:

• All of your generously donated DNA samples, over 18,000 of them, have now been processed and the genetic information received by the University of Edinburgh team.
  
• With all of the data back at the University of Edinburgh, we worked through the painstaking process of cleaning and preparing the sample data for analysis. This stage took a significant amount of time, but was essential to ensure we can complete the research to the highest possible scientific standards and ensure that our findings are as robust as possible.

• We are now deep into the exciting stage of analysing the data and comparing it to the UK BioBank healthy controls.

• In addition, over 15,000 participants completed and returned our second questionnaire. Thank you to all of those involved, many of whom we know went to great effort to take part. We are now in the process of analysing your answers and will publish the results when complete.

• With your help, we have also built the world’s largest data set on ME/CFS. 86% of participants consented to sharing their de-identified data and 95% of participants consented to being recontacted for new research projects. After piloting data access with two projects, we have opened applications, and we are continuing to encourage researchers to make use of this valuable dataset.

Looking Ahead

We remain acutely aware of the urgency to deliver the study results to you as soon as possible.

• We anticipate the DNA analysis to be complete by the middle of next year and we will share the results with you first through this newsletter and on our website.

• You can also expect to hear the results of the second questionnaire analysis shortly after the DNA results.

Social Media

For those who might have accounts on BlueSky and Threads, we wanted to let you know that you can now find DecodeME there too. Links to all our social media accounts are available at the bottom of this email.

Finally, the DecodeME office, phoneline, and email will be closed for the holidays from 20 Dec 2024 to 3 Jan 2025.

Sending you Happy Holiday greetings from all at DecodeME!
Thank you for supporting the study, we couldn’t do this without you!

Warmest wishes,
The DecodeME Team"

 

It's all great news, but that's fantastic to hear.

 

Read this email earlier, all really good stuff to hear. The numbers involved, the DNA data having been processed, extra questionnaires. The work involved must have been massive. Thanks to all involved. Now the hopefully fun bit for the science team!