A Real Condition
For clinicians, the first step is to recognize that the condition is real.
"I think the most important thing for physicians to know is that while we don't have a diagnostic test or a proven treatment, there is now abundant evidence that in these patients there is an underlying biological process. Their symptoms are linked to problems of their biology and not imagined," said Harvard Health Publications editor-in-chief Anthony L. Komaroff, MD, to Medscape Medical News. Dr Komaroff is also professor of medicine at Harvard Medical School and senior physician at Brigham and Women's Hospital (Boston). He has been studying the condition since the 1980s.
Jose G. Montoya, MD, professor of medicine, infectious diseases, and geographic medicine, Stanford University Medical Center, who heads Stanford's ME/CFS Initiative, told Medscape Medical News, "Obviously, the first thing you have to do is to see that it's real. That's not even a question for me anymore. Once you see that it's real, it's a matter of having the right technology...and a multidisciplinary approach."
The condition is tragically real for Ronald W. Davis, PhD, professor of biochemistry and genetics at Stanford University and director of the Stanford Genome Technology Center, whose work with genetic linkage mapping enabled the Human Genome Project. His 31-year-old son developed ME/CFS 3 years ago and is now completely bedridden and unable to speak.
"I don't think people understand how horrible this disease is. They don't look that sick. Even my son, who is incredibly debilitated, doesn't look sick," Dr Davis told Medscape Medical News.
In his new position as ME/CFS scientific advisory board director of the OMF-Open Medicine Foundation, Dr Davis has recruited Nobel laureates James D. Watson, PhD, and Mario R. Capecchi, PhD, and other esteemed scientists as advisors to create what he envisions as a collaborative ME/CFS research effort akin to the Human Genome Project.
"I think it will yield if we get sufficient funding, quite frankly. It may be a tough nut to crack...I'm looking at this long-term. I don't like the long-term because my son is ill, but I'm realizing this won't be temporary," Dr Davis told Medscape Medical News.
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Cite this: Miriam E. Tucker. Chronic Fatigue Syndrome: Wrong Name, Real Illness - Medscape - Jan 08, 2015.