Thank you, that's a reassuring answer, if a little cryptic in parts haha(I would love to know the significance of Thanksgiving!).
Like Sasha I would be interested to know where these possible drug targets will arise from. I note that Chris Ponting said in his post publication interview with...
This is all very well thought out. And the neuron/synapse story fits very well with the symptoms I have experienced traditional models of ME do not easily explain. Tremors, fasculations, feelings of unquantifiable pain/sensitivity, freezing up etc...
Some questions:
Could the feedback loop be...
Now DecodeME is out and youre back on dry land @Jonathan Edwards, I'd like to pick your brain about a couple of things if I may. I thought this thread might be the appropriate venue.
Firstly, you said a couple of months ago that DecodeME is one of a number of studies that should provide us with...
The research and hypotheses I am most interested in currently:
The Edwards/Cambridge/Cliff Hypothesis, if it still stands post DecodeME, and whatever emerges like a phoenix from its ashes if it doesn't.
@jnmaciuch's interest in type 1 interferons, and interferon as a possible lead generally...
I think it would be worthwhile to talk about the hypotheses or areas of investigation we find the most compelling. An offical S4ME list could perhaps be contentious and require a vote to make it fair, but at least in an informal fashion i think it would be a good idea.
Is it possible that they want to be absolutely sure about this 'uncertainty' before releasing it? And because their funding period was coming to an end they decided to release the eight first while continuing analyses on HLA? I can understand the desire for a finding of that significance to be...
This reminds me that over at Phoenix Rising a couple years back a group of them got Peginterferon Lamda manufactured and tried it on themselves.
Iirc there were very mixed results.
Possibly not relevant as a different kind of interferon to alpha/beta/gamma but thought it was worth mentioning.
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.
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