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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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Yes, Ampligen is an double stranded RNA immune modulator and antiviral and also makes the body create interferon, though no-one seems to know exactly why it works for ME/CFS. But pretty much the opposite to Rituximab.This is maddening to hear and I hope that some how you will be able to get Ampligen again. It is completely insane that you are willing to pay for it but cannot get it.
What is the mechanism of Ampligen compared to Rituximab (RTX)? Is Ampligen more similar to an anti-viral (in IV form) vs. depleting the B-Cells and autoantibodies?
I have other files, but cannot upload them here.
The drug is not FDA-approved for use in the US. It has been made available in the past from clinical trial, if one is lucky enough to be eligible AND have sufficient funds to afford the drug, the infusions, the physician and to move close to the infusion centers. Seemingly, no one is able to get it unless the patients managed to purchase enough supply for themselves before production stopped.
As far as I know, the company is still trying to get FDA approval for treatment of ME/CFS and similar approval around the world.
Not that well. I was already starting to struggle then. Not completely relapsed, but not feeling as well as I had been on two infusions a week.
This was the advice of Bioclones, the company conducting the trial. It was just trying to wean me off the drug after I stopped it altogether.
So you basically saying you have the drug avaible in Argentina but no doctors who are trained to treat this disease?
There isn't a single doctor in Argentina, not even in our capital (Buenos Aires, 3 MILLION inhabitants, 13 MILLION counting Greater Buenos Aires) who knows what CFS/ME is. They don't know a single diagnosis criteria, they just believe there is a disease called "chronic fatigue" or "chronic fatigue syndrome" whose only requisite for suffering it is having some sort of tiredness that can't be explained by common diseases, and that there is no treatment for it, that's all. None of them is willing to do even the most basic research about the disease, it's diagnosis or treatment. They don't even want to read a single page of text about it, and of course most can't, as they don't care about learning english. Knowing my country, I can say to everyone here that probably there isn't ever going to be any doctor in Argentina who con diagnose or treat ME/CFS and due to their mediocrity and enormous arrogance, it isn't even possible to ask them to educate themselves about it, even if giving them the required information, translated to spanish or not (believe me, I tried!). If anybody here is hoping to travel to Argentina now or even in a decade to be prescribed Ampligen by a local doctor, I'm afraid that's never going to happen. It's better knowing it beforehand that painfully finding it out once arriving in this country. I feel so sad and hopeless... be thankful you live in more developed countries, despite all the hardships you face regarding ME, you could be a lot worse, like me
Hello @jpcv while i cannot speak for @lauluce, i can say that millions of patients with ME from around the world encounter stigma, contempt, and neglect in health care and in society.
that might be true, the´re good doctors in many areas on Argentina, in the areas you describe, cardiological surgery, etc, but regarding ME, I'm afraid I'm speaking the truth
