Wednesday, November 4, 2009


I probably shouldn't be blogging today. I'm in a weird crash and feeling sad and upset by some things. This is one of those times I should just try to stay with my feelings and process them privately. I may say some things I shouldn't but at the moment I'm too  tired to care. I've been taking 500mg of Keflex every six hours which means I've had to set my alarm for 4:00 a.m. so as not to miss my dose. And yes, I have needed a high dose of antibiotics to treat the staph infection that was spreading. Needless to say I haven't been getting much sleep which is probably contributing to my mood. In addition I'm getting episodes of vertigo when I spend too much time on the computer.

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.


Renee said...

I am so sorry you are feeling so sick right now and crashing. I am not sure why people would be upset about your posts on the XMRV retrovirus? I expect people will have individual feelings and opinions about it, that is a "given".....but mutual respect is so important when we share our own opinions....Anyway, if people dont' want to hear about it, then don't read about it~!
I have not done any research on it, but have read what my fellow bloggers have shared about it. I appreciate the info you have shared.

Be kind to yourself, Terri. Your honest feelings are appreciated. Hang in there! You are in my prayers, and I am sending gentle cyber hugs your way.

Anonymous said...

You go, Girl!!! With you all the way. See you tomorrow :). Love you - Terri

cfswarrior said...

Thanks Renee. I just don't seem to be coming out of it. The only thing I can think is the Keflex is doing a number on me.

I agree whole heartedly about mutual respect. I've been surprised at some of the responses. I'm confused and perplexed about some reactions and have wondered if I offended some people but then that's always the first place I go to.

Thanks for the prayers and hugs Renee. It means a lot.


cfswarrior said...

Thanks Terri! I'm looking forward to seeing you tomorrow! Have a safe drive and flight!

Toni said...

Hi Terri,

I've read all your posts on XMRV and they've been extremely helpful. I'm horrified to think that people have responded to you in a negative way. But you should know that whatever is going on is about them and not you because you've been nothing but helpful to all of us. It's through you that I found the VIP lab and my blood is with them right now, being tested!

I hope you begin to feel better soon.

With much gratitude,

Anonymous said...
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Jessica said...

Take care, Terri. It's tough to deal with anything at all when you're sick. I'm all too familiar with that feeling of being on the periphery. People can be rotten on the internet simply because of the anonymity factor. They are considered trolls who just like to stir the pot and get people upset.

I'm really enthusiastic about the WPI and XMRV research, too. I hope good things happen for you with the research study you got into! I'm really hoping the hospital near me will get involved with XMRV research, too. With Dr. Bell nearby, there's a decent chance of it.

Jo said...

I don't understand the negativity either. It must feel very hurtful. You are a pioneer and put yourself on the front line, so you are bound to get some flak.

No, you haven't been spending too much time blogging about XMRV. And please don't stop either.

Shelli said...

I can't help but hope that XMRV is the miracle we've all been waiting for. My only negative reaction to your posts has been jealousy; how I wish I could be in your position to participate in studies and such! I love that you are on the cutting edge, and I crave more and more information about how things are moving forward. Please, please, please continue to post, because each post helps me hold on to hope.

Don't take it personally when people are critical. This news, as you've pointed out, has done a number on us emotionally. Some people can't allow themselves to hope yet. It is simply a defense mechanism against devastating disappointment if this turns out to be nothing after all. Maybe they can't be gentle with you, but you can be gentle with them.

Pris said...

Terri, I checked help and then googled. No, there's no way to block. You can choose to moderate all comments but then they all have to come to your email to be approved. Too exhausting. Hopefully, that snide 'anonymous' will tire of his/her game, which is all it really is at this point. Sometimes people just like to try to get our goats. I'd say just keep deleting and don't let those comments get to you!!!!


At Home on the Rock... said...

(((Hugs))) Terri.

I so hear you and what you are saying. I just don't understand why people feel the need to be so mean and negative...if one can't say something positive, then they should say nothing at all.

I too am in a weird kind of crash mode and haven't been blogging (or even reading) that much.

((hugs)) again, Terry. Thanks so much for all you post....I find your blog/info you share so informative.