This is some sort of industry newsletter, and Zaher Nahle of Solve spoke with the people who produce it: http://solvecfs.org/wp-content/uplo...al&utm_source=twitter.com&utm_campaign=buffer
I've never heard of Kpax-002 till now. And i wonder why Ampligen won't do the trial the FDA wants, money, something else? And the trial that had no patients should be restarted, i bet between this and the unmentionable forum could we come up with 10 patients...
KPAX-002 is the Synergy trial (methylphenidate plus proprietary mitochondrial support), so named because they noticed that methylphenidate and mito support each yielded modest improvements (though obviously not in everyone), and they wanted to see if there was a synergy if using them together. http://www.kpaxpharmaceuticals.com/the-synergy-trial
A combination of supplements and a stimulant, from what I recall. Phase 1 showed it has no effect. I think this is the one where they were demanding very specific and rigid dosages. People couldn't start with a smaller dose, or adjust to a smaller dose, etc, if the mandated dose was too high for them to tolerate.
I think there were some people who refused to even start on it with the restrictions on dosages. There was someone on PR discussing it - maybe @Gingergrrl ?
May I ask a side question: I read repeatedly of Vicky Whittemore. That is the Mikovits Vicky Whittemore, isn't it? Has someone an opinion about that?
Are there any trials under way of LDN (low dose naltrexone) for ME? I had an idea Jarred Younger was planning this.
He talks about it in this video (first on his list, about 1 minute in): https://www.youtube.com/watch?v=2qvkZAKxpj4
So they want to use Ritalin with a bunch of nutrients, try it on ME/CFS, Parkinsons and Alzheimers (casting a wide net), patent it ("KPAX002 possesses strong IP protection through 2032") then sell it. So a "drug" made with commonly available ingredients but hike the price Anything to make a buck I don't know the specifics but this was not a problem with Rituximab?
Hi @Valentijn and everyone! I had some trouble last weekend when I tried to join this new board and it would let me read but not reply to posts, post a new thread, or write a PM. Then I had my Rituximab infusion last week and didn't get a chance to try again until tonight but now it is working! Yay! To answer your question @Valentijn, it was not me who was discussing the K-PAX trial on PR. It's possible I asked questions about it in one of the threads but it is not something that I ever pursued for myself.
Drugs which can raise blood pressure are very tricky. Too much, and it can be absolute hell (and even dangerous).
Whoops, we were referring to droxidopa while neglecting to name it I thought that was one you'd considered trying at some point via a certain program/trial, but couldn't due to the dosing being inflexible.
Oh, I'm sorry and must not have read the thread carefully enough and thought you were referring to that K-PAX trial. Yes, I was going to try Northera (Droxidopa) but never did b/c they wanted to start me on a very rigid schedule, combined with the fact that the medication had four food dyes that I would have been deathly allergic to and there was no generic. So I ended up staying with Midodrine and am very glad that I did.
I see. I don't know much about Ampligen so perhaps i should not comment on it, but in the end the FDA is a behemoth...
There are ME advocates trying to get Ampligen approved for use in Canada: https://globenewswire.com/news-rele...cephalomyelitis-Chronic-Fatigue-Syndrome.html
Ah, thanks @Jonathan Edwards, I may confuse her with another Ms Whittemore. So many names and people!
