Latest from Decode ME.

 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