Monday, November 02, 2009

It wasn't the modem, by the way...

It was the DSl line. I'm glad it was that simple.

The discussions continue about the retrovirus found in the blood of those of us with CFIDS (ME/CFS). As expected, the research will have to be replicated many times over and then, if it holds up even for a subgroup, what antiviral will help is still another big question. Right now private labs are charging between 450 to 650 dollars for the testing. That's not paid for by insurance or Medicare. I'm sitting tight until more research comes in and prices go down.

The hardest part is the bouncing around of hope. When the work first was announced by the Whittemore-Peterson lab, The National Institute of Cancer, and the Cleveland Clinic, the first feeling of course was hope. As the days have gone by, the questions come this a piggyback virus and not the this a correlation but not a many more. I'd held my hope to modest goals all of these years. This time, briefly, I allowed thoughts to soar that I might have my life back again, a life I'd convinced myself that I could survive without. I'd blunted all of my feelings in that direction.

Now I feel as if I'm on a seesaw. My emotions are all over the place and it's difficult.

I so hope this research takes us somewhere. At least for the first time, since signs of blood transmission have been seen in the labwork, the CDC and NIH are taking the illness more seriously than ever before. Research is gearing up in other places. This is a biggie, a first. I'm happy about that.

My husband drove me over to the ocean yesterday. That's always a centering place for me. It was late afternoon, still full light, but a white moon had already risen on the horizon. An east wind brought the scent of brine with it. It was lovely.


Toni said...

Hi Pris,

I have been on a seesaw too, going from "this is it" to the realization that sorting all this out (replicating the test in other labs and finding the right treatment) will take a lot of time and that most people will still not think that CFS is "worthy" of putting research dollars into. I'm glad you were able to go to the ocean yesterday. Going into nature can help so much to still the mental seesaw. My best.

Pris said...

Hi Toni
Thanks for posting. Yes, the ocean is a calming place and did I need it. I was literally feeling nuts thinking about all of this stuff trapped in the house. I can drive short places on my clearer days, but to drive on over to the ocean on a Sunday, even late afternoon, I wouldn't risk it. I'm glad my husband was willing to take me. Sometimes he is. Sometimes not.

mister jim said...

If there a network of
friends, some of whom
get the testing, maybe
oscillations would damp out.

Pris said...

One person who write the blog CFS Warrior is lucky enough to be in a study and will get her testing free. A lot are going to pay. Some are waiting. Hard to know what will happen now.

Jo said...

The emotional see saw is quite draining in itself. And what if we test negative? What then?

I think you are right, the best thing to come out of this is a reason to do more research. I suspect the main driver is profit motive for the drug companies though.

Pris said...

Oh yes, the drug companies are looking at the fatted hen. I'm sure that's why the rush to get this test out even before followup research had been done. I'm sure money is pouring in already to the one that has a test available now.

cinderkeys said...

I don't even have ME/CFS, and I'm on the seesaw. Knowing someone who has it is enough to give you that feeling as the reports come in.

Pris said...

I'm so glad somebody outside of this illness bubble can relate. Thanks.

cfswarrior said...

I can relate to the seesaw of emotions.

Personally if big pharma gets involved I'm glad-I saw what happened when they got involved with the HIV community.

I don't care who funds it I just want my life back!

I'm trying to find out if other doctor's around the country are providing free testing in exchange for participating in research studies.

The WPI is starting a study in about a month.

Welcome back! It's nice to see you blogging again....

steve said...

Hi Pris. Nice that your husband drove you to the ocean. The moon has been so beautiful here in the midwest, much more so at the ocean I'm sure.

Pris said...

Hi Steve, I'm glad I got there, too. Isn't a day moon wondrous to see?

Terri, I'm hoping other doctors do the exchange, too,esp after reading Dr Bell's paper on the intricacies of looking at the results. Dr. Nancy Klimas is 2 hours south of me. I put in a call late yesterday and got her secretary's machine, but left a message asking if she would be involved in this research. She's top dollar, as you know, and fortunately, she was friends with the doctor I saw down in Hollywood for 8 years before his death. If she's doing something she'll know that my diagnosis is accurate since he was working with me and MAY include me. I have my fingers crossed.

I'm blogging more, yes. The PT still wears me down, but I'm past the tons of followup doc appts of the past 3 weeks.