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Taking Chronic Fatigue Seriously

Autoimmune disorders and the havoc they wreak
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Here’s a terribly sad story about a healthy, active young man who developed an utterly debilitating case of chronic fatigue syndrome:

But now, at 31, Whitney lies in bed in a darkened room in his parents’ home, unable to talk, walk or eat. He is fed intravenously and is barely able to tolerate light, sounds or being touched. His parents and the medical personnel who see him wear plain clothing when they enter his room because bright colors, shapes or any kind of print make him feel even worse, as does any movement that he’s not expecting.

“It’s hard to explain how fragile he is,” says his mother, Janet Dafoe.

This isn’t the picture that people imagine when they hear “chronic fatigue syndrome,” which is often viewed by the public and the health-care community as a trivial or primarily psychological complaint.

One of the world’s top biomedical scientists is now working on understanding the disease. That scientist is Whitney Dafoe’s father, a Stanford medical researcher named Ronald Davis, who is trying to raise money to fund the undertaking. More from the story:

For some patients, ME/CFS starts suddenly, with an illness or a trauma from which they never fully recover. For others, like Whitney,the illness follows a series of ailments. He was healthy as a child but caught a bad case of mononucleosis in high school and had a spell of headaches and dizziness after a trip to Jamaica during college. He eventually recovered from both.

He’d been in India for several months in 2006 when he began experiencing stomach pain, bloating and nausea. He returned weighing just 115 pounds on his 6-foot-3 frame. Then, two years later, he developed what seemed like a cold and never felt normal again.

“He went downhill from there,” his mother says.

Whitney’s is an extreme case. I’m interested in this story, though, because I’m still dealing with a version of this, and I suppose I always will be. I became sick with mononucleosis in the spring of 2010, though it was misdiagnosed for two years. It turns out that the condition overtook me at a period of intense stress. We had just moved to Philadelphia, but we couldn’t sell our house in Dallas, which meant we were watching our bank account dwindle as we paid Philly rent and a Dallas mortgage. My sister was diagnosed with terminal cancer in this time, and things began to go south at my new job. Apparently all that stress gave mononucleosis an opportunity to strike.

It took two years and a move to Louisiana — which, unexpectedly, turned out to be like jumping into a swimming hole of anxiety — to figure out what was really wrong. By then, I was really sick. Not Whitney Dafoe sick, or even close, but still sick. Sleeping four to six hours in the middle of the day. Periods of profound weakness. Constant inflammation. The other day in New Orleans, Julie and I passed by a hotel in which I’d stayed a couple of years ago while in the city for a board meeting. I told her one day I had to cancel my participation in the meeting, because I was too weak to walk the three blocks from the hotel to the gathering. It made me remember how difficult that whole period was.

What brought me to healing was, as you know, the journey with Dante through the Commedia, which for me became a journey out of the dark wood of anxiety (a rheumatologist told me that my intense anxiety was triggering my chronic mono). I’m so much better off than I was, I can hardly tell you. And yet, I’m still struggling. The inflammation never goes away, and I still have to sleep in the middle of the day more often than I care to admit. I don’t feel stress at all, so I’m guessing that this immune-system condition I have must be permanent. A couple of days ago, Julie asked me to clean up a dusty corner in which I had stacked piles and piles of books (pointing to the messy mountain, I told her, “That’s how my mind looks”). After ten minutes of work, I sneezed once, then had a massive allergic reaction, and had to sleep for four hours. The fragility of my immune system is such a pain in the butt.

My fear is that something will tip me over into Whitney Dafoe territory one day.

It is claimed that we are undergoing an epidemic of autoimmune disorders today:

Yet few of today’s practicing physicians are aware of the escalating tsunami of epidemiological evidence that now concerns top scientists at every major research institute around the world: evidence that autoimmune diseases such as lupus, MS, scleroderma, and many others are on the rise and have been for the past four decades in industrialized countries around the world.

Mayo Clinic researchers report that the incidence of lupus has nearly tripled in the United States over the past four decades. Their findings are all the more alarming when you consider that their research has been conducted among a primarily white population at a time when many researchers believe lupus rates are rising most significantly among African Americans.

Over the past fifty years multiple sclerosis rates have tripled in Finland. Rates have likewise been rising in Scotland, England, the Netherlands, Denmark, and Sweden, where the number of people with MS has been rising at nearly 3 percent a year. Multiple sclerosis rates in Norway have risen 30 percent since 1963, echoing trends in Germany, Italy, and Greece, where MS rates have doubled over the past thirty to forty years.

Rates of type 1 diabetes are perhaps the most telling. Data over the past forty years show that type 1 diabetes, a disease in which immune cells attack the insulin-producing beta cells in the pancreas, has increased fivefold. The story regarding childhood-onset type 1 diabetes is more disturbing. Studies show that the number of children with type 1 diabetes is skyrocketing, with rates increasing 6 percent a year in children four and under and 4 percent in children aged 10 to 14.

Rates of numerous other autoimmune diseases — scleroderma, Crohn’s disease, autoimmune Addison’s disease, and polymyositis — show the same alarming pattern.

As with all epidemiological research, it can be more art than science to tease out what percentage of these rising rates is the result of more people being diagnosed with a disease because physicians are more aware of it, versus the increase from a genuine rise in the number of people falling ill. Yet the researchers behind these epidemiological studies hold that something more than an improved ability among doctors to diagnose autoimmune diseases is driving these numbers upward.

I notice that increasingly, I am sensitive to all kinds of triggers. The chemical smell of a cheap scented candle can provoke an allergic reaction, for example. Stuff that I used to be able to tolerate easily. I used to roll my eyes at people who said that they could not tolerate fragrances, until it started happening to me. To be sure, most fragrances don’t bother me a bit, but those that have a strong chemical smell do. Cleaning fluid is another, as is paint. Is the autoimmune epidemic, if indeed there is one, a disease of modernity?

What do you think? Open thread…

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