For those of you who don’t use Facebook, below is a list of the external links shared within our Facebook Group during March:

The ME Association newsletter


Progress of Decode ME study

For those of you following the progress of the DecodeME study. We have recieved the following update:

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 has been awarded to extend the project until August 2025. This will give us sufficient time to finish the project.

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. We remain fully committed to completing this research to the highest possible scientific standards, ensuring that our findings are as robust as possible.

Webinar Recording and Transcript – March 2024




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