I’m sure everyone is tired of posts like this, and if someone wants to delete it I guess go for it. But I’m in a really bad spot not and was just hoping to see if there is actually anything promising coming research/treatment wise.
It seems like they believe long Covid isn’t the same as ME, I gained tolerance to abilify after a couple weeks, and I went from being around a 9 during a remission down to about a 5. Just desperate for something to cling onto I guess.
I will try to answer this:
Yes, there is sth promising. Because we begin to understand the pathomechanism of ME.
But to say it very briefly: it all comes down to the question if we have enough money to do drug trials. Jarred Younger did an excellent talk at the overall disappointing IACFS/ME (many of you will know that I like this guy): He said now is the momentum to start drug trials. Because of the LC research. He has a table of quite promising chemicals and existing drugs he wants to study now (can't share due to copyright issues - sorry, lawyer). So, what is interesting: There is a TLR 3 agonist (CQ-07001) he wants to study that might work like Ampligen.
This is the second thing: The FDA approval for Ampligen... Let's hope it'll come.
Then the testing of the metabolic trapped yeast. I know this theory is not very popular here on PR but I think it could explain a lot; Whitney's strong reaction to the drug showed that they tackled the right system. They are now studying what went wrong so there is not only hope for many drugs to let the yeast grow again but also for this one still!
Then more from OMF: the Cyclophosphamide phase II trial which was overseen by many here https://www.frontiersin.org/articles/10.3389/fmed.2020.00162/full
Then we have Abilify, where it might not only work (and finally stop working) for many but gives us a glimpse into the pathomechanism in the future. Dr Bonilla seems to start experimenting with Amisulpride.
Then the overall understanding of pathogens and their role in ME:
- Chia does a great job here and Hanson did a really brilliant study everyone should read. I think here on PR is not enough attention to the enteroviral theory. I don't know anyone with ME who tested negative (below 1:160) on at least one enterovirus!!! Chia's work shows that this is not the case for healthy controls. In this matter, remdesevir and two upcoming antienteroviral drugs are interesting. Also IFN-lambda.
- environmental factors like mold get more attention in practice. This is good.
- Dr Markov's theory is interesting: I know now of three pwME who tested positive for bacterial overgrowth and one healthy control that was negative. A road worth investigating.
And much more like CCL-5 antagonists (maraviroc) and so on.
But: if you want fast results you have to test a few things on your own. That's the critical thing: time. Depending on how severe you are.