Ampligen is a breakthrough for some people with ME/CFS – yet it is still not available.
With a UK trial for Rituximab at least temporarily in doubt, let’s turn the focus to Ampligen – a drug that is potentially one trial away from being approved for ME/CFS. Ampligen is still the only drug that’s been able to move the needle on exercise in ME/CFS.
With NIH director Collins making noises about a possible Ampligen trial and a new review paper out, it’s time to make the case for Ampligen.
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Please support Health Rising during our quickie summer donation drive. Our goal is to raise $15,000.
Cort, is your understanding that the most severe CFS patients have tended to be more likely to get benefit from Ampligen, than sufferers with more mild conditions?
I think the severe bedridden sufferers either:
1. Have a different condition to the less severe form of CFS or
2. Have a very severe form of the same disease.
But I tend to think Option 1 is more likely.
I just can’t reconcile that those very severe cases are the same disease as the one I suffer from, which although holding me back, is not severe.
Nothing scientific in this view, other than reading over many years, but maybe the severe form is a lot more immunologically driven, or even viral driven, and hence is more likely to respond to ampligen?
I really, really don’t know. I look at the severely ill and I see that I have some of the same issues but much less but I don’t know if the disease has morphed into something else or was different from the beginning.
To be honest I imagine there may be several different kinds of ME/CFS which look very much the same from the outside (????)
Cort, this is the first time in years of following your site; that I’ve got a clue where you are coming from. Fanally, thanks! I believe the 25%’s have a completely different disease than the other 75%. My wife got sick 25 years ago while visiting an outer island in Fiji; where she was served unboiled water from a river that ha just been flooded when she was 16 years old(she’s now forty) She almost lost her life and had to be flown to the hospital on the main island to save it.
When she came back to the U.S. She was severely ill. But got the usual runaround. Fast forward 10 years; she’s much sicker. We fall in love. 3 months later I wake up in the middle of the night; I say oh crap is this how you feel. I almost die. 10 years later after we both suffer unimaginable sick days and years, we read about the xmrv study and read about the antiretroviral medication isentress. We managed to get our hands on it. Next day; 50% better. Mostly we could use our brains again but also eat without pain. Doctors told us it was impossible for me to catch this from her. ( ok, so another idiot doctor) plenty of those. But I can only tell you; that when I try to tell anyone about this. Even when I’ve tried to post it on your site. Everyone always turns a deaf ear. This has gone on for five years now. I don’t like to sound paranoid, but I am getting to the point of thinking that the other 75% have so much power and sway with this disease; that us really sick and dying patients will never get help.(antiretrovirals) Or maybe there is something more sinister going on and I should be afraid just for sharing this. Sincerely. Randy
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Cort, is your understanding that the most severe CFS patients have tended to be more likely to get benefit from Ampligen, than sufferers with more mild conditions?
I think the severe bedridden sufferers either:
1. Have a different condition to the less severe form of CFS or
2. Have a very severe form of the same disease.
But I tend to think Option 1 is more likely.
I just can’t reconcile that those very severe cases are the same disease as the one I suffer from, which although holding me back, is not severe.
Nothing scientific in this view, other than reading over many years, but maybe the severe form is a lot more immunologically driven, or even viral driven, and hence is more likely to respond to ampligen?
I really, really don’t know. I look at the severely ill and I see that I have some of the same issues but much less but I don’t know if the disease has morphed into something else or was different from the beginning.
To be honest I imagine there may be several different kinds of ME/CFS which look very much the same from the outside (????)
Cort, this is the first time in years of following your site; that I’ve got a clue where you are coming from. Fanally, thanks! I believe the 25%’s have a completely different disease than the other 75%. My wife got sick 25 years ago while visiting an outer island in Fiji; where she was served unboiled water from a river that ha just been flooded when she was 16 years old(she’s now forty) She almost lost her life and had to be flown to the hospital on the main island to save it.
When she came back to the U.S. She was severely ill. But got the usual runaround. Fast forward 10 years; she’s much sicker. We fall in love. 3 months later I wake up in the middle of the night; I say oh crap is this how you feel. I almost die. 10 years later after we both suffer unimaginable sick days and years, we read about the xmrv study and read about the antiretroviral medication isentress. We managed to get our hands on it. Next day; 50% better. Mostly we could use our brains again but also eat without pain. Doctors told us it was impossible for me to catch this from her. ( ok, so another idiot doctor) plenty of those. But I can only tell you; that when I try to tell anyone about this. Even when I’ve tried to post it on your site. Everyone always turns a deaf ear. This has gone on for five years now. I don’t like to sound paranoid, but I am getting to the point of thinking that the other 75% have so much power and sway with this disease; that us really sick and dying patients will never get help.(antiretrovirals) Or maybe there is something more sinister going on and I should be afraid just for sharing this. Sincerely. Randy
Is it possible to get access to Ampligen through any source – NHS, privately, trials – in UK today?