Dude
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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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Temelimab
- Thread starter Dude
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Dude
Senior Member
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- 189
Looks like they need more participants. Does anybody here some positive Storys from the trail?
I really hope they can fill this trial up asap without loosening any criteria. They seem quite commited and have expanded into quite a few countries and locations. AFAIK there's a few case reports on Twitter. This user https://twitter.com/anthokhun has written a very detailed report on his whole experience with the trial in French on his substack https://metacovidlong.substack.com/.
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Dude
Senior Member
- Messages
- 189
I signed up for the Facebook long covid swiss group. There are several users reporting about the temelimab trail. Sounds very promising. People that return to work after the infusions etc. Iam wondering how many og mecfs people does those reactivated herv viruses have. Does anybody had that checked that? I dont think its exclusive for the covid mecfs type?
SWAlexander
Senior Member
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I would like to get well very badly, but I´m not convinced yet.
Have you seen Dr. Bhupesh Prusty´s video I posted?
https://forums.phoenixrising.me/thr...his-needs-to-change.90445/page-3#post-2439494
GeNeuro (Temelimab) had done some collaborative work on this. It currently seems like HERV-W ENV doesn't seem to play the same role in ME/CFS as it does in Long-Covid and acute Covid, see https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7065355/ vs https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9647063/. I believe Nath thinks the same (he's done research on HERV-K and has also collaborated with GeNeuro). Iwasaki has also done research on HERVs so there's a lot of potential knowledge.
So I think it's very sensible that they focused their trial on Long-Covid. Who knows if that'll hold up. One shouldn't forget that the majority of trials happening are recruiting relatively healthy patients that haven't been sick for very long. As such anecdotal positive reports aren't surprising.
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