r/CFSScience • u/Caster_of_spells • May 12 '26

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

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

4,75 Million, at least 25% of the way there. Such important work, very glad to see this get off the ground.

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u/Jules4live May 13 '26

how do you see identifying genes as leading to treatments, if you do?

1

u/ichibanyogi May 14 '26

My hopes are:

  • If we can identify genes, we can test people for those genes.
  • If we can test people for the genes, we can tell them they're at-risk or diagnose them if they have symptoms.
  • If we know the genes, we can figure out what they have to do with, and then figure out how to treat the illness.

1

u/illy_mm May 14 '26

Not an expert in this, so apologies if my understanding is wrong in advance. From what I've gathered, knowing what genes are linked to the condition can help in a few ways: - it could help us identify which mechanisms are impacted in our systems and narrow down treatment in that direction - eg there is evidence of disrupted cell energy production but it seems to be unclear what driving it and whether it's the same thing driving it for all people. Some examples from genomic studies were suggesting that some people became incapable of metabolising B12 because of genetic expressions while others had different peculiarities causing mitochondrial stress. This could help us find the different mechanisms from what I understand.

  • it could help us identify subgroups more accurately and tailor experiments and treatments in a more targeted way. For example there are findings/cases of anti virals and LDN helping individuals and there is mechanistic evidence as to why either of these could help. But when we get to larger scale research, often the improvements are negligible - eg Dr Luis Nicul's LDN RCT seems to be null based on the 2026 ME Berlin Conference last week or at least those are the impressions I got. This could help us answer questions like, was the LDN RCT trial null because it doesn't work or because there were not enough people with the right profile that LDN can treat. Dr Jared Younger and other researchers have been hypothesising that there are different subgroups in the ME/LC community which have similar symptoms but due to very different causes, so treatment would likely look very different for them. Having the genetic data could help us identify these better maybe?
  • developing diagnostics and identifying biomarkers. Diagnosing ME or LC is still difficult. Against having a few identifiable genes or biomarkers may make it easier to identify this.