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If the muscle finding is negative but we still think ifn signalling in the brain is a good bet, is there any way to check the brain that doesn't involve a theraputic experiment? Assume it will be tricky to get funding for one without that evidence.

Yes, I agree that's its not a great list. Its that problem of saying 'inflammation' when they mean immune system signalling of some sort. But my question was whether there had been a trial of ifn alpha-2a in ME/CFS patients in the past, and that was why it was in the list of discontinued...

Chris Ponting shared this list of potential on Bluesky earlier. its an NIHR list of potential MECFS and LC treatments. https://io.nihr.ac.uk/wp-content/uploads/2025/06/Pipeline-for-ME_CFS_report-on-MInD-data.pdf In the list of discontinued treatments it means an agent called interferon alpha...

As good as that would be, we really need to be thinking and planning how to attract attention now not in 2-3 years when SequenceME is completed, if it gets funding.

This trial has been enrolling people for a while right? Does this imply they are seeing positive responses? Ofc they wouldn't know if it was drug or placebo at this point, but thats a big expansion and a big investment for RECOVER. Not that they have used their previous funding wisely...

Another thought: Would it be worthwhile to create a list of the hypotheses we think are worth pursuing, both by members here and by others? In a members only post or even a private group. We could then speculate on what experiments could be done to validate/falsify these hypotheses.

I think this depends on whether PrecisionLife replicate those findings in the DecodeME cohort, which they are in the process of doing or may have already done. But I am not a geneticist or even a scientist so take my answer with a grain of salt.

Agreed.

Incredible.

Yeah i vividly remember all the muscle i built from couch to 5k just melting away once i deteriorated.

I forsee this ending poorly...

Ah maybe it is just the political inconvenience of acknowledging it in kids.

Just like when they pretended kids weren't getting really sick with acute covid.

They are the ones that need behavioural support.

I strongly suspect they will be advising it's psychological in adults too.

I wonder where they are getting their advice from? Surely not a certain jolly prof who's chummy with this Labour faction? Whoever it's coming from they are harming kids to an almost unthinkable degree. All because it's politically convient to forget covid. Never forget the widely publicised...

I'm hoping the inclusion of 9000 LC patients in SequenceME will help the two spheres coalesce somewhat. Although thats a couple years off and not funded yet as far as we know.

Agreed.

Institutionalised exercise induced deterioration for long covid suffering med students. What a mad world we live in.

No worries, I believe so. I found these two links from a quick google. I think there is more info on S4ME but I am brain fogged right now! https://www.omf.ngo/pediatrics-me-cfs-deep-omics-profiling-and-longitudinal-study/ https://www.omf.ngo/omf-scientist-receives-grant-in-australia/ Edit...