Saturday, October 10, 2009

Reason For Hope?

Scientists have recently discovered a link between a retrovirus (XMRV) and Chronic Fatigue Syndrome. They don't know whether the virus causes CFS, or is merely associated with it. But it is present in a large majority of CFS patients, of whom there are some one million in the U.S.

I am one of that million, and have been for most of my adult years. Although I don't often write about my experience of the disease, it remains the central fact of my daily life. I don't write or talk about it much because the essence of a chronic condition is its utter boringness. It bores me to death, so I can imagine what it must do to those around me. My endlessly patient husband is the only one I regale with the ins and outs of my skirmishes with CFS.

I've been lucky that—despite there being no physical marker for CFS, nothing that shows up on any tests--my doctors have always taken me seriously, believed my symptoms, treated me with respect and compassion. But they have never been able to help.

Now, there is talk of hope, of possible medications. MXRV belongs to the HIV family of viruses, and possibly some drugs used to treat HIV could work for MXRV. Or other drugs could be invented. Or something.

If hope is the thing with feathers that perches on the soul, as Emily D. said, my hope's feathers are all fluffed up. You know, as when birds are asleep--not dead, but definitely asleep. I wouldn't want this little feathery thing to be shot down or hurt in any way. So for now I'll keep it safely snoozing, and maybe some day it will fly again.

9 comments :

  1. Oh, that is so awesome, some hope for a cure. Diseases like CFS are so hard on the soul, I think. Of course all diseases are, but ones like CFS and Fibromyalgia, where diagnoses are hard to come by and treatments hit and miss. I feel for you and my friends who struggle, sometimes hour by hour, to make it through each day. Keep your feather's fluffy-good for you.
    JB in IL

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  2. a cure would be great.

    your blog life reflects no fatigue. it appears you have way more energy than most of us. which makes what you do even more remarkable.

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  3. JB, Thanks, and keep your fingers crossed!

    Laurie, I've managed to fill my life with tasks that allow a lot of flexibility--you know, if the beans don't get picked today, they'll still be there tomorrow. But the strict work schedules that most people keep would do me in for sure.

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  4. I thought of you immediately when I heard this news. I hope your feathers stay fluffed:)

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  5. I hope so! I had no idea--I'm with Laurie. I think about how exhausted and immobilized I felt this summer and I hate thatyou probably feel like that all the time (or at least more often and regularly).

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  6. Thanks, mrb!

    Bridgett, I read your posts this summer, and identified (and wondered how you managed, with three kids!) and was so glad that you found the right treatment.

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  7. Ah, if I'd read this BEFORE I sent you the article...

    I thought of you every time I heard it on the news last week...and this morning too, obviously.

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  8. That's great news -- and I'm with Laurie and Bridget -- I would never have guessed from what you write here. I'm so far behind you in daily activities.

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  9. Ah, but then you don't hear about all the things I don't do!

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