Finally, a name for my illness.

Posted by Marcia Clemmitt, staff writer, CQ Researcher

Back in the early 1990s, I was a science reporter and also suffering through some of my worst days with what has now been a more than 20-year experience with the illness dubbed “chronic fatigue syndrome.”

Among my reporting assignments were stories on the field of immunology, then the scene of battles over whether to treat “chronic fatigue” like a true illness.

I knew the disease was real. Nothing but a real disease could explain the sore throats, extreme chills, itchy patches of super-dry skin and memory and concentration difficulties that I periodically experienced along with intense tiredness and sleeplessness. Accordingly, I asked every immunologist I spoke with about his or her views on the condition – not letting on that I had it, of course. The overwhelming majority of scientists and doctors I spoke with told me flatly that the disease was, in fact, not a disease but some other phenomenon, perhaps related to depression, some other psychological condition – mainly confined to hysterical females -- or simple malingering.

One doctor, however, had launched a careful research program on chronic fatigue, and he was uncovering a list of the actual symptoms, including most of the ones I experienced, such as a constantly runny nose, night sweats, unusual and severe headaches, eye problems and sudden, unexplainable joint pains. I didn’t reveal my personal interest to that doctor either, but I was relieved to hear that his symptom list closely echoed my own experience!

Much more gratifying, then, to read earlier this month that scientists have found a retrovirus – XMRV – that is present in a large majority of chronic fatigue sufferers and, now, presumed to be a biological cause of chronic fatigue, at last recognized as not only an illness but a communicable one, to boot.

A New York Times op-ed today explains what we’ve lost in the years when much of the science, medical and public-health communities kept their minds closed to that possibility (http://www.nytimes.com/2009/10/21/opinion/21johnson.html)

The illness first became news in 1984, when several hundred people living in Nevada, near Lake Tahoe, turned up with flu-like symptoms that led to neurological problems, “including severe memory loss and inability to understand conversation,” writes Hillary Johnson, author of Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic.

Doctors and scientists couldn’t figure out what was going on, and ultimately public-health investigators from the federal Centers for Disease Control and Prevention (CDC) concluded that the Nevada doctors “had worked themselves into a frenzy” over what was surely a purely psychological or behavioral phenomenon whose sufferers were “not normal Americans,” she reports. In the next few years, outbreaks continued around the country, but a panel of academic scientists asked to name the phenomenon opted to call it “chronic fatigue syndrome,” to suggest its psychological – rather than physical – nature and thus “prevent insurers from having to make ‘chronic disbursements,’ ” as one panel member joked.

Congress has appropriated funds for research over the years, though in relatively small amounts, but the CDC “has seemed unwilling to spend it productively,” says Johnson. Investigations by federal auditing agencies have revealed “that for years government scientists had been funneling millions meant for research on this disease into other pet projects.”

Meanwhile, the quickly-arrived-at and long-lasting opinion that chronic fatigue is not actually an illness has had some serious consequences. “As public health officials focused on psychiatric explanations, the virus apparently spread widely,” with as many as 10 million Americans now believed to carry the retrovirus, Johnson says.

Because the disease has gotten relatively little scientific attention, doctors still have no idea how it spreads. Among other things, that means that, though I really hope I don’t pass chronic fatigue on to you, nobody knows how I can prevent that.

Sometimes even scientists aren’t careful enough to heed what many believe to be their most hallowed professional creed: Follow all the evidence no matter where it leads, and be careful to keep an open mind.