From Jean's Desk:

Why Your Doctor May Not Know About CFS

Published in Lyndonville News, May 1999

I would like to tell you about someone who I admire and respect. Her name is Hillary Johnson and she wrote the book, "Osler's Web", Crown Publishing (just came out in paperback). Forgive me, Hillary, I am no writer, but I want people to know, especially people who are ill with CFS, what a contribution you made to this illness.

If you have not read her book, you should. In fact, when patients or relatives of patients call our office looking for information about CFS or want an appointment, I encourage them to do their homework by reading up on CFS. The references that I give are, of course, Dr. Bell's books and Hillary's book, Osler's Web. The main reason I give Osler's Web as a reference is because in most cases these patients are frustrated and angry because their doctor does not understand CFS or does not believe in CFS. I sympathize with them, and I tell them to read Osler's Web. Why? Because it is a true history of why their doctor does not have a clue about this illness. Hillary's book is like reading a history book on how the government (Center for Disease Control, CDC, and the National Institute of Health, NIH) has ignored CFS, covered up CFS, and purposely gone out of their way to not tell doctors about Chronic Fatigue Syndrome. In fact, as you read this book, you realize that they made fun of us and we were the brunt of their jokes.

Hillary came to Lyndonville for several days while she was writing her book. She interviewed Dr. Bell, my family and several others in order to obtain the facts of our outbreak in Lyndonville. At this point, she found out how the New York State Health Department looked over our charts of patients with CFS and came to the conclusion they had mass hysteria.

Please! Four of those patients were my children and, believe me, they did not know what mass hysteria was. They were sick, very sick with some terrible disease. She also found out that I spoke to the CDC myself and they told me that if I had my three daughters have a lymph node biopsy and nothing showed up, then they would come to Lyndonville and investigate this illness. Well, we had the children operated on for the biopsy, nothing showed up, and the CDC never came. They ignored us, too. It took her nine years to complete her book. I would see her at conferences across the United States and ask her about her progress. She would explain that there was a lot of work yet to be done in order to do it right. Well, let me tell you, it is done right. It is excellent and startling.

Hillary did not write this book without cost to herself. Once the information from this book was released, she received so much backlash. People could not believe it was true. How could the government do this to sick patients, ignore doctors, and do nothing. It created a lot of controversy but I believe, that because of her book, the truth has come out and things have changed to some degree. At least, that it what we are told.

I grew up as a child of the 50's and I always felt that the government was something to be respected, and gosh, it was there to protect us and help us in time of need. Unfortunately, those ideals were smashed when my children became ill. I am very disappointed in the CDC. Instead of coming to our aid, they have made the journey with CFS a difficult one for thousands of patients and their families. Patients are now aware of the truth about why their physicians were not able to gain the information they needed about CFS from the medical establishment. The CDC was the road block and that has been eliminated due in part to Hillary's book. Thank you, Hillary. We all owe you a tremendous debt of gratitude.

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