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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Ugh. Bad news.
but would be nice if the ME/CFS community didn't have just one serious academic researcher working on the problem.
Our main hope from Long Covid is that while spending all that sweet grant money, someone might accidentally stumble across something that will help us.
This is heart breaking. I was really getting my hopes up
There are many other serious academic researchers besides Ron. Too many to count. Michael van elzakker, maureen hanson , Susan levine, fluge and mella, etc. So I don't think the problem is on that end. problem is funding.It's not great news, but would be nice if the ME/CFS community didn't have just one serious academic researcher working on the problem.
I'm not optimistic on timelines but it's not bc of lack of smart academic researchers, it's just slow bc of lack of funding.That's fair - I'm clearly not familiar with the various researchers at other academic institutions working on it.
I have a hard time being super optimistic on timelines, though. Many of those researchers seem to be (understandably) working on finding biomarkers or diagnostic tools. If you can't reliably diagnose a disorder, then no pharma company will chase a treatment because you can't even select a patient cohort. Lyme, CFS, GWI, CIRS, MCAS, post viral fatigue, Long Covid, etc.
I imagine there are fewer researchers who are working on actual treatments or cures, because without pharma backing I think the only possibility is a repurposed drug or protocol. The medical establishment will be unlikely to accept something like that for CFS regardless of efficacy, as the underlying disorder itself is barely accepted and mostly overlaps various psychiatric disorders.
Anyways, that's my somewhat cynical view. I've been on a mostly slow decline for a couple decades, though, so it's hard to imagine a cure is right around the corner. Up until five years ago I was able to still participate in society so I tried to just focus on what I could still do.