NIH Conference: Testing New Medications for Long COVID and ME/CFS

[Dude]

I didn't really catch it, but yesterday there was a conference by the NIH with Avindra Nath on the topic of long COVID and ME/CFS. I found a slide on Twitter that suggests a few medications are to be tested, primarily for long COVID, but Nath mentioned they would also apply to ME/CFS. Has anyone had experience with any of the listed medications?

 

[Treeman]

I get immunoglobulins. It clears up a fews fatigue, reduces it in others but I think many still have fatigue like me

 

[BrightCandle]

That was the presentation where they once again threatened ME patients that if they didn't stop criticising the "Effort preference" paper that Avi Nath coauthored that Avi Nath would walk away. More patient blaming and abuse in this presentation on frankly what is reasonable criticism of a paper with a lot of flaws.

The other thing they said that concerned me was that Avi Nath seems to think focussing on Long Covid makes the most sense and ME patients will get the fastest results that way. They all agree which presumably means whatever NIH budget there is for ME just went to further Long Covid research. I can think of a few ways this could end really badly for ME patients. One obvious one being that the leading theory for Long Covid is the viral persistence they have found plenty of evidence for, lets say they find or develop a Covid antiviral and everyone gets better. But then it doesn't help ME patients and research cant identify in tissue samples an obvious virus target, then what? Well then ME patients loose years of research having given their pitiful funding to Long Covid and get dumped again. So few papers in Long Covid even mention ME/CFS this isn't a viable route forward until that is addressed and research has three arms (LC, ME and Control) as a minimum.

Still they have their 8 priority areas of research out now but no funding secured and a government that is going to cut NIH funding. So really their plans are immaterial they have nothing behind them yet to make it deliverable.

A number of Long Covid patients have tried IVIG and a fair few responded very positively to it but sadly got worse again once the treatment was stopped. Other than that I haven't seen much in the way of any numbers behind anything else. I thought after Ron Davis suggest Jak Stat inhibitors we might see some people here try it but I know I didn't because that one scares me a bit because it might be precisely the wrong thing to do if those cells are fighting a very real viral infection.

 

[Dude]

@BrightCandle

While it is understandable to have concerns about resources being directed primarily towards Long COVID, focusing on this emerging condition could actually benefit ME/CFS research significantly. The overlap in symptoms and potential underlying mechanisms, such as viral persistence and immune dysfunction, suggests that breakthroughs in understanding and treating Long COVID could provide insights applicable to ME/CFS.

By concentrating efforts on a condition that currently garners more attention and funding, researchers might find biomarkers, treatment strategies, or even cures that could be directly relevant to ME/CFS patients. This strategic approach can expedite scientific progress, rather than dividing already limited resources among multiple smaller projects as we seen in the past.

Additionally, the heightened visibility and urgency associated with Long COVID can drive larger and more sustained funding opportunities, potentially opening new avenues for ME/CFS research as well. In the end, prioritizing Long COVID does not mean abandoning ME/CFS; rather, it’s a tactical move to harness the momentum in the scientific community to benefit both groups. Just my 2 cents.