Thursday, June 05, 2008

Chronic Fatigue Syndrome—A Wake-Up Call

I read "Chronic Fatigue Syndrome No Longer Seen as ‘Yuppie Flu’” in the New York Times with great interest.

Actually, it was more than just passing interest I felt. It was similar to when I read that Anheuser-Busch launched Redbridge, a gluten-free beer: relief. After all, if a mainstream beer company embraced the needs of the gluten-free consumer, didn’t that mean others would soon follow suit?

So when I read that the CDC released studies “that linked the condition to genetic mutations and abnormalities in gene expression involved in key physiological processes,” it buoyed me a bit. When I read that “some cases of the syndrome were caused when an acute infection set off a recurrence of latent infections of Epstein Barr virus and HHV-6, two pathogens that most people are exposed to in childhood,” I was intrigued.

Decades have passed since chronic fatigue was dismissed as “yuppie flu”—decades marked by residual skepticism and dismissal nonetheless—and understanding the biological origins of the condition has always been paramount in allaying these dismissals.

I don’t write about it often, but my personal history with chronic fatigue began when I was in high school and a case of mono felled me. For nineteen months. Nineteen months of fatigue that overwhelmed me (at first, I slept twenty hours a day); of pain in my neck and joints so severe I cried; of fevers and infections and a brain haze so profound I found it hard sometimes to type my name.

Eventually, doctors gave this siege a name: chronic fatigue, and the flare that began my junior year in high school lasted for several years. I know how fortunate I was to have doctors who identified and diagnosed it so quickly; sadly, this is not often the case, even ten years later.

My condition improved somewhat after those first few months, but it definitely changed things. I didn’t have the same stamina; more than that, I didn’t have the same faith or reliance in my own body.

A decade later, its presence still insets itself in my life, though I’ve been lucky in that I haven’t again had a flare like the one that swallowed up four years of my life. When it happens, I don’t always know the source of the deep fatigue, the brain fog that comes over me sometimes that makes my sentences clumsy and my muscles burn and ache: Residual effects of steroids? Not getting enough air? Lingering complications from adrenal insufficiency? Or chronic fatigue?

I tell myself sourcing these moments isn’t important; dealing with them and moving forward with everything I need to do is what counts. And I believe that. But I remember how bad it was when it was really bad, when chronic fatigue was life halting, not merely life altering—and I know there are so many people still in that life-halted state.

Which is why the news in this updated article—particularly given the fractious history that exists with the CDC in relation to chronic fatigue—is so important. Some highlights? Research using strong antiviral medications shows promise, and it’s an avenue that opens up options beyond population-based studies, which some advocates and patients fault.

Click on over to the link above and read the rest—see how far things have come along, and how much work there is to be done.


Diane J Standiford said...

It is a water/oil combo when "researchers" find proof of an illness that one has been living with for years; yet still there are no open windows to fly out of.

Never That Easy said...

Our stories are so similar - the unrelenting mono, high school years down the fatigue/pain drain, an inability 15 years later to even remember what healthy felt like - and that's why I knew this post would be so familiar to me. As happy as I am that they are finding things that could help us all out, it'd be nice if we hadn't have had to battle so hard for it. Also, like the Lyrica commercials that I totally detest, it would be better if they didn't make it seem like "not only is it real, but we've got the cure!!" When it's not really a cure, but a treatment. That doesn't work for every single person, or to the 'oh my god I'm all better' extent that the commercials portray. Just a little issue, I have there.

Anonymous said...

The criticisms of the CDC work seem valid to me - see Leonard Jason's comments.

Unknown said...

I really like what you have to say. Thank you. I added a link to your blog from mine.

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