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Chronic fatigue syndrome story points out why it’s important to wait for the science

Last week, the Chicago Tribune ran an article that re-emphasizes how hope for a cure for a chronic, debilitating illness often outpaces science.
In this case, the illness is chronic fatigue syndrome, a little understood medical condition that’s belie

Last week, the Chicago Tribune ran an article that re-emphasizes how hope for a cure for a chronic, debilitating illness often outpaces science.

In this case, the illness is chronic fatigue syndrome, a little understood medical condition that’s believed to affect up to 4 million people in the United States, mostly women. In addition to its namesake symptom — severe fatigue that lasts for six months or longer — the condition is also characterized by joint and muscle pain, sore throat, tender lymph nodes, headaches, insomnia, and difficulties with memory and concentration.

For a long, long time, the medical community treated chronic fatigue syndrome as a psychological illness.  That’s no longer the case, but scientists have yet to find a good explanation of what causes the condition’s debilitating symptoms — or a successful way of treating it.

No wonder, then, that a study published last fall linking the mysterious illness with a retrovirus made such an impact. Writes Tribune reporter Trine Tsouderos:

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The paper, published in the prestigious journal Science, suggested that the virus could somehow be helping cause the disease. Drug companies expressed interest, and patients lit up the Internet with expressions of hope. One blogger posted photos of a party, complete with hats reading “I ♥ retrovirii” and a shrine to the paper’s lead author, retroviral immunologist Judy Mikovits.
Nine months later, the joyous mood has soured. Five research teams trying to confirm the finding have reported in journals or at conferences that they could not find the retrovirus, known as XMRV, in patients diagnosed with chronic fatigue syndrome, casting grave doubts on the connection.

This medical tale resonates beyond the world of chronic fatigue syndrome, however, as Tsouderos explains in her nut graf:

The story of XMRV and chronic fatigue syndrome is unfolding in a uniquely modern way, highlight the clash between slow, methodical science and a plugged-in world ready to act on a single piece of information. It also puts the spotlight on a scientist whose unorthodox statements have raised eyebrows among colleagues while finding a receptive audience among patients desperate for answers.

Like HIV?
Unorthodox may be an understatement. Mikovits, director of research at the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nev., has embraced her finding with a missionary’s zeal and dismisses any non-believers (those who haven’t been able to duplicate her research) as being biased.“[S]he feels her finding is being ignored by a dithering, even hostile scientific world,” reports Tsouderos.

“Unless we do something now this could be the worst epidemic in U.S. history,” Mikovits wrote to Tsouderos in an e-mail. “Our continent will be like HIV Africa only worse!”

Mikovits has also begun to link the XMRV retrovirus to autism, atypical multiple sclerosis, and other disorders — without any published evidence.

“Last month,” reports Tsouderos, “Mikovits spoke at the Autism One conference in Chicago about her new research on XMRV and autism — joining a speakers lineup that included disgraced autism researcher Andrew Wakefield, who recently lost the right to practice medicine in Britain for serious professional misconduct.” Mikovits told Tsouderos that she realized attending the conference “could destroy what is left of my career,” but felt compelled to do it.

The need to replicate results
The fact that other scientists have so far failed to replicate Mikovits’ finding is disappointing, but far from unprecedented.

“Other pathogens — Epstein-Barr virus, human herpesvirus-6, the retrovirus HTLV-II — have been fingered in the past as possible causes of chronic fatigue syndrome, but none has stuck,” writes Tsouderos. “Proving that a retrovirus causes a specific disease is especially difficult, experts note. And contamination in the lab, which is always possible and challenging to detect, can wildly skew results.”

“[Mikovits’] claim has to be validated,” one virologist told Tsouderos. “Otherwise, not only is money wasted, but people can be harmed, physically and psychologically.”

Some people with chronic fatigue syndrome are now experimenting with anti-retroviral drugs — a scary proposition, as among these drugs’ potential side effects are “kidney damage, anemia, muscle problems and damage to the energy-producing centers of cells,” reports Tsouderos.

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Mikovits has not endorsed the use of these drugs, but she hasn’t opposed their use, either.

You can read the full Tribune article here. For more on chronic fatigue syndrome, check out the Centers for Disease Control and Prevention’s website here.