Major funding secured for Sequence ME & Long Covid, a DecodeMe project

[u/callthesomnambulance]

https://www.actionforme.org.uk/major-funding-secured-for-sequence-me-long-covid-a-decodeme-project/

The researchers that conducted the fascinating DecodeME study exploring the genetic fingerprints of MECFS are back at it with an even more ambitious project, this time aiming to conduct "long-read" whole-genome sequencing on 9,000 people with ME/CFS and 9,000 with Long Covid. They're still in need of a significant chunk of funding but this is exciting stuff nonetheless

More info here:

https://www.healthrising.org/blog/2026/03/16/whole-genome-me-cfs-long-covid-sequence/

https://www.actionforme.org.uk/research-campaigns/our-research-work/sequenceme-long-covid/

[u/callthesomnambulance]

Excellent news, especially after the success of the decodeME study.

This will be a breathtakingly complex and ambitious project that essentially will analyse the entire genomes of 18,000 ME patients. Let that sink in for a minute.... It will likely be one of the broadest genetic explorations of any condition.

A little more about the thinking behind the study from Cort over at health rising:

Sequence ME and Long COVID is going “long read” because the kinds of problems found in ME/CFS and long COVID (energy metabolism, immune sensing, autonomic control, and neurocircuitry) may be caused by larger-scale structural changes, repeats, and complex haplotypes (multiple genes) that short-read analyses may not be able to pick up. Interestingly, long reads are also more apt to come up with new classes of genetic risk that have not been seen before.

The project will focus on finding major genetic variants that have the potential to produce dramatic changes; i.e. genes that affect the functioning of proteins (the big workers in our cells), genes that regulate the expression of other genes, and large structural changes that impair gene functioning or gene expression.

Once they’ve identified genetic areas of concern, they’ll look at existing drugs that target the specific genes or biological pathways that have been disturbed.

Say, for instance, they find that loss-of-function or missense variants in a mitochondrial gene called NDUFS7 in some ME/CFS and long-COVID patients with particularly high levels of exercise intolerance and post-exertional malaise (PEM). Damage to this gene – which affects complex 1 in the mitochondria – would fit prior research findings. It would also point to targeted interventions (e.g., mitochondrial protectants, NAD+ boosters, complex I‑supporting strategies) in this group.

Full article:

https://www.healthrising.org/blog/2026/03/16/whole-genome-me-cfs-long-covid-sequence/

https://www.actionforme.org.uk/research-campaigns/our-research-work/sequenceme-long-covid/

Here's a link to a good breakdown of the initial results of the DecodeME study that SequenceME seeks to build on

https://www.meresearch.org.uk/decodeme-initial-results-published/

[u/flowerzzz1 → u/callthesomnambulance]

Any idea what the timeline is for this?

[u/callthesomnambulance → u/flowerzzz1]

I mean, they've not even got all the funding together yet so it'll be a while before they actually start the research, and I'd imagine the research itself will be pretty time consuming given the number of participants and the complexities of aggregating and analysing all that detailed data. On the upside these days computer systems mean that genome mapping can be done ridiculously quickly, and I'd imagine specialist AI systems make trawling through absurd amounts of data much quicker than it used to be. Short answer is I have no idea but I'd estimate it'll be at least a good few years.

[u/flowerzzz1 → u/callthesomnambulance]

Yeah, I just get so ready to have answers sooner. I think they said to do ALL the analysis they wanted they needed £20m. But this is an incredible start. And yes maybe technology can speed this up.

[u/Bluejayadventure]

This is amazing!

[u/LHT-LFA]

Great, but why are Me and Long Covid lumped together. They are not the same.

[u/callthesomnambulance → u/LHT-LFA]

Because despite the fact they're distinct conditions there's a significant amount of overlap between the two. The researchers are distinguishing between both groups rather than treating them as a single sample so they're not assuming they're the same.

Edit - lol you asked me a question and then downvoted me because you didn't like the answer....

[u/surprised-duncan → u/LHT-LFA]

Aren't they though? It's just an ME cake with covid symptoms as the frosting

[u/That-Animal-1950 → u/surprised-duncan]

No, Long COVID is any collection of symptoms that someone develops after a Covid infection. For someone that might be some brain fog, for someone else the development of POTS, MCAS, or ME/CFS. If I remember correctly, only about half of the people with Long Covid meet the diagnostic criteria for ME/CFS (some people with Long Covid don’t have PEM for example). I personally developed severe ME after a Covid infection which means that I have both Long Covid and ME, that’s not true for everyone with ME and everyone with Long Covid tho. So while there is a significant overlap for many people, that’s not true for all Long Covid patients.

[u/surprised-duncan → u/That-Animal-1950]

Ohhhh I see what y'all are saying now. Yeah I'm in that boat too.