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March 1, 2006

Dear Rik,

I just finished your book that MT sent me. I am very impressed! Your style of writing really turns a dull topic into an enjoyable experience. It certainly is the best piece on CFS that I have read and I would like to send some copies to family and friends, especially those who just don't get it. Since I'm part of the Medical-Industrial Complex I was prepared to be more offended. I wasn't. Probably because my experiences with Drs. and insurance companies has 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 6 years and just put up with the pain and limitations. I am fortunate to not have the cognitive problems that many do. I remember going out to San Diego to see an "expert" on CFS, Dr Jay Goldstein. I sat in his waiting room for 8 hours a day with other CFS 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 do hope that I will have the opportunity to take care of CFS patients again in an office practice someday. I think I would have more to offer than most of my collegues.
Please tell me how much I should send for the books and mailings and I'll send a check or whatever. Thanks again for what you have done with your publication.And for what you have done for CFS patients. Someday when I have made more recovery than I have so far, I would like to be involved with actively helping you help patients. I cannot publically speak now or committ time to much else than my family. I'm still in bed 18 hours per day and have 3 young children and a wife who gets stuck with everything who needs support. If you have some ideas of something I could do now, run it by me and I'll see. I would enjoy a dialogue with you at anytime.