Welcome to Phoenix Rising!
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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I absolutely agree with 100% of what Dr. Deckoff-Jones said. I don't think that doctors should prescribe antiretrovirals to everyone with ME/CFS right now, but I do think that they should. at least with a positive XMRV test, prescribe it to people who are severely ill. They will either lose their life, or a good chunk of their life, if the doctors would wait until all the science is done.
Now, for the donation part: Personaly, I would like to donate, but I don't have an international credit card - So I would like to get one if I seee that my donation can do something.
I THINK THAT WE CAN DO A JOINT EFFORT IN ORDER TO GET MANY ME/CFS AND OTHER NEUROIMMUNE PATIENTS TO DONATE, LET'S SAY, 30$. PERHAPS WE CAN SEND EMAILS, GO INTO FORUMS ON THE INTERNET, ETC. WHAT THE WPI IS DOING IS AMAZING, BUT WE SHOULD TRY AND HELP THEM - AND OFFCOURSE HELPING THEM IS HELPING OURSELVES - IN ORDER FOR THEM TO SUCCEED. What do you people say? Can we, from this forum, make a difference by causing enough people to donate? Let's say we get, and I know it's many, but let's say 10 thousand people to donate 30$, we donated 300,000$, which is nice, I think.
i hate to say this but giving haart to someone with mito dysfunction would probably be lethal or produce irrepreable damage. in vitro is not in vivo
Good points. Think of the outcry and the backlash if god forbid, someone dies on AZT(does that happen?) - or suffers permanent damage. She seems to think the drugs are pretty safe but they do come with pretty hefty warnings. She clearly thinks the medical community has been too cautious. I imagine they wouldn't be if they were as convinced as she is that XMRV is it. I hope she does well.
I agree WPI need our support. That's why I was trying to point out that the doctor quoted may accidentally be creating unintended problems, not only for the WPI, but for those otherwise trying to advance this science. Yes, we can all and will say what we want on the net, but we are also responsible for what we say (or repeat). I may have got too heated about all this, but that's why I made these posts. I didn't want to offend anyone.
From the beginning (see posts #17 & #20) I have supported people's right to experiment. That was never the point I was making. I too may well have started Valcyte at the time of those trials had my father not been dying of prostate cancer at the time. I totally get this as my life is going by too, while science crawls along.
Sorry but the cat is out of the bag. No use in trying to stifle discussion. People are going to talk and some are going to experiment just like they have every time a new theory comes along, credible or not. WPI is not a wimpy group. they have confronted their attackers. As mentioned, they have also prudently warned against risky treatment. I suggest that we just give them our support. People are going to say whatever they want and the net is way too big to stop it. I really think this is a time for us to be bold and stick up for each other. Strategies born of fear will not stop those bent on attacking. no matter what happens they will always bend the truth to suit their ends /rant