2025 DecodeME News Alert thread

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Hutan

Hutan

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This thread has been created to provide a way for members to be alerted when a DecodeME preprint is posted. To be alerted, 'watch' the thread (by clicking 'watch thread' at the top right of the thread). You can choose to receive an email as an alert.

Posts will be made in this thread in order to alert members that a DecodeME preprint or paper has been posted, or to give important news about likely timing of publication of DecodeME results.
 
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Email sent to our mailing list.

"We are writing to let you know that the initial DNA results from the DecodeME study will be available in the next few days. We plan to send you an email with our findings on Wednesday 6th August around 7pm. We will also be announcing the results on our website at this time.

We're letting you know the timing in advance so you can pace yourself if needed.

Thank you for your continued support and we look forward to sharing more very soon.

Warmest wishes,
The DecodeME Team"
 
Email newsletter:

After sharing our initial DNA results two weeks ago, we have been delighted by the community response, as well as the widespread media coverage.

As we approach the end of August, DecodeME's study team will change, and some staff will be leaving, but the project - and the data - will live on.

The new DecodeME website will now be the central place for our updates and to find our contact information. To ensure everything remains accessible long term, we’ve moved it across to the University of Edinburgh. The site contains all the same content, including results and contact details, and will continue to be updated as new findings are shared.

Visit the new DecodeME website at https://institute-genetics-cancer.ed.ac.uk/decodeme

Thank you to the 2,500+ people who joined our genetic results webinar last week! We hugely appreciate your engagement. For those who couldn’t attend live, you can find the recording and transcript on our new website.

Watch the initial results webinar at https://institute-genetics-cancer.e...study/initial-dna-results-august-2025-webinar

As we move into this next phase of DecodeME, our data access will continue to be open for applications, and we encourage researchers to analyse and explore our rich dataset. We are also looking to build on DecodeME through new research projects, which you can support here: Donate via Action for ME.

Thank you for all your kind messages in response to our initial DNA results. Whilst we are unable to respond to them all, we are grateful for your continued support.

Warmest wishes,
The DecodeME Team
 
Email update:

"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. 

Warmest wishes,
The DecodeME Team"
 
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