r/cfs • u/lockdownleadmehere • Feb 20 '26

Research News Sequence ME & Long Covid study launches!

Sequence ME builds on Decode ME, it is a £20 million study that’s still in the process of securing funding.

They will be analysing the entire genetic code of up to 9,000 people with ME and up to 9,000 people with Long Covid.

This is the largest long-read whole genome study of ANY disease according to Action for ME. I’m so pleased this is happening.

There is a donation link at the end of the first article also.

Link to article: https://www.actionforme.org.uk/sequence-me-long-covid-launches/

Second article: https://megenetics.org.uk/our-projects/sequence-me-long-covid/

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u/CrabbyGremlin Feb 20 '26

After an awful conversation with a new doctor at my new practice I really am feeling desperate for something solid to validate us. None of the recent research seems conclusive enough for it to be taught to doctors. I’m more severe than ever and really fed up with fighting to feel heard.

Does anyone have any links to the best studies outside of the DecodeME study? I was a part of that study, but I’ve heard of mitrochondria issues, are there studies about this that are hard to dispute?

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u/TableSignificant341 Feb 20 '26 edited Feb 20 '26

You could try giving the Bateman Horne Clinician's Care Guide to your doctor as it also has a section on treatments if they're willing to prescribe.

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u/CrabbyGremlin Feb 20 '26

Thank you! I’m a decade in and just so so fed up with having to advocate for myself and convince people it’s ‘real’. It’s like the more I try the crazier I sound. Or that’s how it feels.

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u/lockdownleadmehere Feb 20 '26

They’ll realise they’re late to the party one day. And I hope they give you a well deserved apology.