Chronic fatigue syndrome: Don't wait passively for a cure

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So maybe we're not all slackers. Maybe it's not all in our heads, as many employers, psychiatrists, friends and even family members have implied over the years. Maybe the debilitating set of symptoms known as chronic fatigue immune dysfunction syndrome is a legitimate illness, such as pneumonia or tuberculosis. And maybe, according to a study published recently in the prestigious journal Science, it's actually caused by a virus.

Many of the millions of people around the world who suffer from chronic fatigue syndrome welcomed the news of this study. Not only might it vindicate us, it also offers hope that a cure is possible, if not imminent.

But as someone who has lived with the syndrome for 23 years, I remain skeptical that this terrible illness is caused by a single virus, identified as the retrovirus XMRV. I have no doubt that XMRV was found in many of the study's 101 patients. But we've been down this road before. In the 1990s, another retrovirus was announced, with fanfare, as the culprit. Many were disappointed when subsequent studies could not confirm any link between it and the illness.

And of course nearly everyone with chronic fatigue has been tested for other viruses that were once thought to be the cause: Epstein-Barr, cytomegalovirus, even HIV. Often those viruses are found in the blood of those tested. But so far they have not been proved to be the cause of illness.

I am not a scientist; I don't have the skills to evaluate the study; and I know researchers were only suggesting that XMRV "may be a contributing factor." But based on my experience, I believe CFS is an environmental illness in the broadest sense: an erosion of the immune system caused by any number of factors, including chemicals in food, pollution in air and water, exposure to radiation, the stresses of modern life, unhealthful diet, lack of sleep, excessive use of drugs (prescription and recreational), psychological stress, overwork and, yes, viruses, too.

I came down with the illness in 1986, at 38. It hit me suddenly and felt like a severe flu: trembling, nausea, fever, headache, night sweats, digestive problems. It never went away. Blood tests clearly show my immune system was so weakened it was unable to fight off completely whatever attacked it.

Why was my immune system compromised? I have my own theories. I led an extremely stressful life in New York. I ate a lot of fast food, high in sugar and low in organics. For six years I missed two nights of sleep every week working at Time and Life magazines. I spent one vacation picking coffee on a peace brigade in Nicaragua and ended up with intestinal parasites.

But there's something else. I grew up in Los Angeles during the 1950s, when nuclear testing in the atmosphere was still permitted. As studies have made clear, a spree of nuclear tests in Nevada in October 1958, called Operation Hardtack II, spread radiation fallout over the L.A. basin at levels 120 times greater than normal. Linus Pauling, a two-time Nobel laureate, predicted that over a period of 30 years, 25,000 cancer deaths would result from this one brief exposure to a heavily populated area. I was 10 in 1958, and I got sick 28 years later. I don't know if that radiation contributed to my illness. But after reading numerous reports of high cancer rates in areas exposed to nuclear fallout, I'm convinced it didn't help.

My concern about the latest announcement of a possible viral cause is that many people with chronic fatigue, and those who become afflicted in the future, might be misled into waiting for a pill that will instantly cure them. Even with such a drug, I wonder whether chronic fatigue patients can overcome the illness without changing how they live.

In my own case, after a miserable year of being treated by a dozen top New York specialists whose medications made me feel worse, a friend recommended Shyam Singha, an osteopath and naturopath.

He was the first to zero in on my poorly functioning digestive system. He put me on a cleansing fruit fast, then raw food for a month, then a strict vegetarian diet with no sugar, alcohol or caffeine. I protested that I was too weak to try such a radical diet. "Do it!" he replied. I did, and after two days on the fruit fast I started to feel better.

The most important lesson that Singha taught me was that my cure was largely in my own hands. Though he offered guidance and knowledge, I had to take responsibility for changing the habits, the diet, the life patterns that contributed to my getting sick in the first place.

Over nearly 23 years since then, I have tried many approaches to speed my healing: acupuncture, homeopathy, low doses of doxycycline, thyroid supplements, anti-yeast diets and more. I've eliminated much of the clutter and stress in my life. I feel far better today at 61 than I did at 38.

Obviously, my view about the cause of this syndrome is at odds with the notion that people get the illness simply because they are exposed to a particular virus. And my belief that we must actively participate in our own healing is not widely accepted. The CFIDS Association of America, the biggest chronic fatigue organization, has been lobbying and raising research funds for many years to find a viral cause and then develop a drug to destroy it — the polio model.

I hope the group is right, that one day a virus will be identified and there will be a cure or a vaccine, as there was for polio. But despite the study published in Science, I am not convinced that such a cure will be here soon. For now, I will continue to do what's worked for me and many others. And I will urge anyone who has this illness not to wait passively for doctors and pills to cure them but instead to change their lives and get on with the hard work of healing themselves.

— Zachary Sklar, a former executive editor of the Nation magazine, is co-author of the screenplay for the film "JFK."

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