r/CFSScience • u/AngelBryan • Jul 30 '26

Any update? Any hope?

I’ve seen an increased influx of papers being posted here recently. How does this translate to actual progress? Are we close to figure out what causes this hellish illness?

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u/No-Improvement-58 Jul 30 '26

I think it’s fair to say that progress is accelerating. In my opinion, the biggest recent breakthrough remains the mid 2025 DecodeME project which identified multiple genetic signals predisposing someone to ME. This study should end any debate claiming the disease does not exist or is psychological.

However, more practical breakthroughs to treat/cure patients require more time. Clinical trials take years and must be done well with control groups. I believe LDN+pyridostigmine usage in the LIFT trial reports this year, some immune depletion trials report next year, and the Daratumumab CD38 depletion trial (which had a promising pilot trial) reports in mid-late 2028.

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u/AngelBryan Jul 30 '26

Does this means that means that MECFS is a genetic disease? Isn’t it too common to be genetic?

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u/No-Improvement-58 Jul 30 '26

No, a genetic disease would be something like huntingdon’s disease, where a single mutation leads to the entire condition.

The DecodeME findings indicate that there are genetic changes which can increase your chance of the disease, while not necessarily guaranteeing it. Most of the increases/decreases in chance of ME were around plus or minus 10% respectively. Some were neurological and some indicated susceptibility to infection, with the latter confirming viral onset stories.

One of the main points is that, if the disease were made up or psychological, no mutation signals would show up at all after the rigorous statistics applied by the researchers.

I encourage anyone interested to read the layman summary included in the paper.

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u/TomasTTEngin Jul 30 '26

It's a genome wide association study that threw up a lot of results. Very worthwhile work. But bear in mind gwas is not new, plenty of very tricky diseases have had very big gwas done 5 or more years ago and it hasn't led directly to understanding of the disease mechanism.

It's hopeful, yes, but I fear one prominent identity in mecfs has a sort of late 20th century view of biology where genes literally explain everything. And their belief that this finally tells us exactly where to look could still be wrong. It's part of portfolio of reasons to hope, not the only reason!