Shortly before ME/CFS patient John Herd left a Boston hospital after eight days of testing to rule out stroke, brain tumor, etc. a young internist told him, “I believe you have chronic fatigue syndrome.” The internist’s name was Anthony Komaroff and the date was 1988. CFS was all but unknown at that time.
Both men went on to be unflagging patient champions. John as a “founding father” of the advocacy community and Dr. Komaroff as a dedicated clinician/researcher.
On Call Ambassador
Dr. Komaroff was there for John Herd in 1988 and he is still there for ME/CFS patients 20 years later. Indeed it’s possible that no one has played a larger role in the fight for ME/CFS’s legitimacy.
The hallowed halls of Harvard are not the place one would expect to find a spokesman for this disease, but as Professor of Medicine at the Harvard Medical School and Editor-in-Chief of Harvard Health Publications, Dr. Komaroff has used his bully pulpit again and again to fight for ME/CFS patients.
As a federal advisory committee (CFSAC) member he was on hand to prompt for a full disclosure when the Centers for Disease Control (CDC) scandal erupted in the late 1990’s.
Dr. Komaroff is more than an effective spokesman for this disease. An active researcher, he has co-authored papers exploring such diverse topics as allergy, salivary gland changes, neuropsychological function, immune alterations, autonomic nervous system function, HHV-6/7, brain imaging and hormones.
He co-authored the first paper on ME/CFS in the modern era in 1987 and was a major author of both the 1988 (Holmes) and 1994 (International) definitions of ME/CFS.
He co-led early efforts to assess HHV-6’s effects on ME/CFS, and his 2006 reassessment of that subject helped re-ignite interest in the role pathogens play in the disease.
A 2004 study finding adverse effects during pregnancy provided relief for patients considering having a baby. His periodic overviews of the disease are eagerly awaited. See his recent concise summary in lay language, “Ten Discoveries about the Biology of CFS.”
A widely respected figure, Dr. Komaroff is generally honored with the prestigious role of either starting or ending international conferences. He was a natural choice to kick off the national media campaign at the biggest media event in ME/CFS’s history at the National Press Club in November, 2006.
In May, 2008 he was the leadoff speaker at the CFIDS Association of America’s Congressional briefing, and in June he started off the first Symposium on Viruses in CFS with an overview of the current scientific findings.
Name Change Proponent
A member of the committee which coined the term ‘chronic fatigue syndrome’ in 1988 – a decision he now deeply regrets – Dr. Komaroff is acutely aware of the problems the chronic fatigue syndrome name has caused.
Stating, “I think CFS is a terrible name, and I’m partly responsible for it,” he’s clear how important choosing the right name is. A decade ago when ME/CFS patients were in the midst of another name change effort, Dr. Komaroff noted “There’s unanimity on one point: The current name is really bad because it trivializes the illness, but we don’t know enough to choose the right name. And we’d damn well better get it right and be prepared to live with it for the next decade.”
Ten years later Dr. Komaroff has found a name he can champion. As a member of the Fair Name Campaign Advisory Board, along with Drs. Lucinda Bateman, David Bell, Paul Cheney, Leonard Jason, Nancy Klimas, Charles Lapp, and Daniel Peterson, he recommends the acronym ME/CFS.
* Cort Johnson, a noted research reporter, is founder of the website Phoenix Rising: A Guide to ME/CFS (http://www.phoenix-cfs.org) and publisher of the bi-monthly Phoenix Rising Newsletter.