Obviously I've been spending much time blogging about XMRV. This seems to have upset a number of people some of whom have either left snide comments on my blog or written some less than kind emails. The most upsetting thing has been that a couple of the anonymous comments came from people I know and another from a completely unexpected source. I realize the news about xmrv is creating a lot of different emotions. I too am going through the ups and downs and crashes from all of this. But its the first time I've had reason to hope or even entertain the hope that maybe just maybe I can have more of a life than I do. I'm not able to get out much. I can't walk more than one block, I can't drive more than a couple miles. If I blog it means not sending out emails. If I send out emails I can't blog. Each decision I make about something I do involves sacrificing something else. Unfortunately it means I can be perceived as flaky by people who don't have this and then there's the silent punishment for not being able to respond in a timely manner.
I miss by blogging friends or maybe I simply misjudged. It wouldn't be the first time since I've gotten sick that I've misjudged peoples intentions. Nor is it the first time that people have disappeared. I'm used to it by now from people who aren't sick. Sadly I've come to expect it from healthy people. I just didn't expect this sort of response from my peers. I didn't expect the comments or emails(the supportive ones I love). I try not to let it but I do find them hurtful. I wasn't going to post about it but I think I'm just too raw at this point from not feeling well, the lack of sleep, etc...I can't shake the feelings. It's hard to have thick skin when I don't feel well. Plus I'm pretty sensitive to feeling on the periphery. It's an old wound.
But I refuse to put aside my enthusiasm for what is occurring at The Whittmore Peterson Institute nor will I stop blogging about it. I've read on message boards where a few people are saying that the pharmaceutical industry just wants more money and that they will capitalize on this. You know what I say to that? GREAT! Because it means there will be more research into finding medications that will help us. I'm not naive about profit motivations. I worked in San Franciso since before the AIDS epidemic. I lost many friends to that disease. Then they discovered that the retrovirus HIV. It wasn't too long after that the antiretroviral drugs came out. Now they are able to stop HIV in its tracks. People are living with HIV now rather than dying from it. People are dying from ME/CFS too.
The Whittemore Peterson Institue has been able to examine live XMRV in vitro. That means they can start testing treatmens on the live virus. Will this be an answer for everyone with ME/CFS? That remains to be seen. Am I excited to possibly have a deadly retrovirus? Absolutely not. Whether its years or sooner I am hopeful that we will get answers.
From the Reno Gazette :
Judy Mikovits remembers that “eureka” moment when she realized that she and her team of researchers at the Whittemore-Peterson Institute in Reno had discovered a new retrovirus that could lead to a possible treatment, even a vaccine, to combat Chronic Fatigue Syndrome.
“It was January 22, and we were in a San Diego restaurant called the Yard House,” said Mikovits, who had gone there with fellow scientist Vincent Lombardi to present the results of their research to Frank Ruscetti and Robert Silverman, two of the world’s leading virologists.
“We kept waiting for them to say something,” Mikovits said. “I was nauseous. Bob (Silverman) waited a long a time, and then he looked up and said, ‘Well, this is going to change their world.’”
And it has.