From an email update:
As a valued supporter of our work, we are delighted to share the exciting news that we have secured funding for phase 1 of
Sequence ME & Long Covid - the world’s largest long-read whole-genome study of any disease.
The study will analyse the entire genetic code of 9,000 people with ME and 9,000 people with Long Covid. The initiative is designed to explore the causes of Myalgic Encephalomyelitis (ME) and Long Covid using large-scale, long-read whole-genome sequencing.
Building directly on the success of the
DecodeME study, this project aims to unlock deeper genetic insights that could accelerate the development of diagnostics and future life-changing treatments.
Find out more about Sequence ME & Long Covid
The Schmidt Initiative for Long Covid and CODA (Complex Disorders Alliance) have provided $200,000 and $50,000 respectively towards the cost of the project’s first phase.
In this first phase we will:
- establish the project’s Management Group, Scientific Advisory Board, and build on the existing involvement of people with lived experience who have driven this study from the start
- develop the research criteria for Long Covid
- collect expressions of interest from 15,000 people with Long Covid
We are delighted to be able to begin this ground-breaking research, however the total cost of the initiative is £20million, with phase one lasting two years and costing £388,138. The funding provided by project partners CODA and The Schmidt Initiative for Long Covid will enable us to recruit a full-time Partnerships and Business Development Manager to help drive this work, including seeking further funding and partnerships for the study.
Once further funding is secured, we will immediately move into sample collection and analysis – aiming to sequence 9,000 Long Covid samples, as well as the 9,000 samples already collected through DecodeME.
We are now in a position to take donations towards the project from those who are able to.
If you would like to support the project, you can make a donation here.
We will share future updates on the study’s progress with you as soon as possible. Our ability to develop research partnerships such as these is only possible due to the support of people like you.
Thank you for helping us create real change for people with ME and Long Covid, now and in the future.
Warmest wishes,
The Action for ME Team
P.S. We still have some seats available at our Breakthrough ME fundraising dinner in London on Thursday 15th October 2026. For more information or to book your seat, please contact breakthrough@actionforme.org.uk
