Thank you and what's next

 As we move into the next phase of the study, we want to say a huge thank you to the incredible ME/CFS community who have made DecodeME possible. 

 

DecodeME is not stopping, it’s transforming. While some of our team will be leaving, the data and its potential remain, and the research continues. 
We will:  

• Continue analysing the DecodeME dataset and publish updated findings. 
• Encourage other bona fide researchers to use the world’s largest ME/CFS dataset. 
• Welcome the start of the PRIME project in October, which will build infrastructure and connections for research, as well as training people with ME and carers to get involved in directing research. 
• Seek funding for Sequence ME and Long Covid, which will use DecodeME data to analyse the entire genome. 
   

Staying up to date 
Going forwards, we will no longer be able to respond to emails or check our social media. We still aim to let you know of any key updates to the study, through our newsletter and on our website.  
 

Your data 
If you took part in DecodeME, your data will continue to be held securely by the University of Edinburgh. If you gave consent for wider use or recontact, that still applies and will remain available to bona fide researchers through our Data Access Process. 
 

How to contact us 

• To update your details or consent, email: decodeme@ed.ac.uk Please detail in your message your name, date of birth, and what change you wish to make.  
  (this email will be checked periodically – we will be unable to answer other queries). 
• For general information or support, we recommend visiting Action for ME’s support page
   

Thank you 
As we step into this next phase, we want to say how much this study has meant to us. We are proud of what we’ve achieved together, and incredibly grateful to every participant and supporter. DecodeME would not be where it is today without you – thank you.  
 

Miriam