The following story written by “a doctor in Vermont who is currently fully debilitated by CFIDS" is reproduced with permission from the Vermont CFIDS Association Website, http://www.monkeyswithwings.com/vtcfids.html
I just finished the book We’re Not in Kansas Anymore: Chronic Fatigue Syndrome and the Politics of Disease.* Since I’m part of the Medical-Industrial Complex that it criticizes, I was prepared to be more offended. I wasn’t. Probably because my experiences with doctors and insurance companies have been identical to yours. I am embarrassed to be a part of it at the same time I’m being victimized by it. When I revealed to my colleagues that I had CFS, it was like telling some of them that I had seen a UFO. I immediately lost stature and respect.
Many of these colleagues know very little about CFS, and even less about caring for someone with it. These are the same doctors that pride themselves on their breadth and depth of knowledge of cancer, heart disease, and diabetes. It's as if by remaining ignorant about this illness they are somehow preserving the dignified objectivity of the science of medicine by not giving in to the make-believe symptoms of these difficult patients.
Perhaps I knew that would happen, and that’s why I did not tell anyone for six years and just put up with the pain and limitations. I remember going out to San Diego to see an “expert” on CFS, Dr. Jay Goldstein. I sat in his waiting room for eight hours a day with other patients while we were waiting our turns to try different drugs. We all talked, of course. When they found out that I was an MD, they crucified me. I tried to defend myself and point out that one is not guilty by association, but I think it would be easier to defend a terrorist.
I’m still in bed 18 hours per day, and have three young children and a wife who gets stuck with everything that needs support. I am a 52-year-old Family Practice MD who practiced for 17 years before I became disabled by CFS. I am well aware of the ignorance that my colleagues have regarding this illness.
When I went through my seven years of medical training at the University of Vermont in the 1980’s, there was nothing even mentioned about CFS, except for a few derogatory remarks about “yuppie flu.” No one knew anything about it and fewer cared. Even in the most prominent Medicine (Harrison’s) and Family Practice (Rachel) textbooks of the mid 1990’s – tomes of more than 2000 pages – there is not even a reference to CFS in the index. Only the pediatrics text (Nelson’s) included a two-page write-up.
That means that most MD’s practicing now were never formally educated on a devastating illness that affects up to one percent of the population. In addition to simply lacking the knowledge-base required to care for these patients, an even more sinister result occurs. There is a certain arrogance that develops in even the most conscientious medical school graduate who has just spent seven years learning about illnesses, often 80 to 100 hours a week… who just doesn’t believe that he could have missed studying an illness that was really that important.
What results is a doctor who just doesn’t believe his patient, or thinks his symptoms are the product of an over-worked imagination. This causes unnecessary pain and suffering, and a poor delivery of healthcare for these patients. Chronic Fatigue Syndrome patients are already undesirable in the eyes of healthcare providers. Nobody really wants us. We have lots of complaints about symptoms that don’t make sense. We take a lot of valuable time. We require lots of paper work for disability, Social Security, and referral forms. We don’t get better. We appear normal yet can’t go to work.
I once heard a lecturer talk about the current state of understanding (lack of understanding) of CFS at Fletcher Allen Health Care grand rounds (in Burlington, Vermont). He finished his talk by saying, ‘Don’t send your patients to me!’”
* We’re Not in Kansas Anymore: Chronic Fatigue Syndrome and the Politics of Disease, 2005, by Vermont CIFIDS Association President Rik Carlson. For information on the book, which is available in pdf format or paperback, go to http://www.monkeyswithwings.com/book.html