Immune Dysfunction

    In 1970, my life was interrupted by a mystery illness that no one understood and few believed in. I have spent many years in the wilderness, medically speaking. One of them I literally spent in solitary confinement. I had to struggle to stay alive while doctors assured me that I was not physically ill. I had to maintain a belief in my own sanity when they insisted I was mentally unbalanced. It hardly seemed like a fair fight. How could I expect to get well if I couldn't even convince the doctors that I was sick? I framed my hopes around the only model I knew: recognition of the disease by the medical world, intense and well-funded research, and finally, inevitably, the cure.

    It didn't happen that way at all. When the disease was finally recognized in 1988 by the CDC, research became the property of the virus hunters. New viruses were all the rage, particularly the newly isolated retroviruses. New diseases were cropping up. Everyone hoped that there was a connection there somewhere.

    Virologists were doing what they were taught to do, what they knew how to do. They tried to follow in the footsteps of the great microbe hunters of the past who had found the causes of syphilis, tuberculosis, malaria, and other scourges under the lenses of their microscopes. Once the culprit was identified, a magic bullet could be developed to fight it. Find the bug, make the drug. This method of Cartesian reductionism had worked so often in the past that it set the paradigm for the medicine of the future.

    Unfortunately, many of the diseases plaguing people in the late twentieth century could not be made to fit the formula. In the 1970s, for example, top scientists spent years of research time and billions of dollars trying to find a virus that caused cancer, and came up empty-handed. They might have learned an important lesson from their failure - that some diseases are multifactorial in origin and cannot be traced to some simple infectious agent. Instead, they remained committed to the germ theory, using ever more sophisticated technology, ever more sensitive instruments.

    Their efforts made visible microbes that had never been seen before, such as human retroviruses. They hailed these discoveries as new viruses. It remained only to match them up with new diseases. . . .

    I was uncomfortable with the virus theory from the beginning . . . In the first seventeen years I spent experiencing this illness on my own, with no medical opinions to instruct me, I couldn't help noticing how little it behaved like any virus I'd ever encountered. In a sense my isolation was a benefit to me, forcing me to do my own thinking and to ask myself difficult and unsettling questions.

    As time went on and the CDC and patient support groups joined in the fray with more viral theories, my list of questions only got longer. Suppose, I said to myself, a virus really was the cause of CFS; suppose it was eventually found - that is, seen for the first time. Did that necessarily mean that it was new? When Galileo turned a more powerful telescope on Saturn and discovered its rings, he didn't assume that they had only just popped into existence. And, if the virus had existed all along, why did it begin to cause disease only when the tools to detect it had been invented? Such a coincidence would have been stunning indeed.