This is a positive advocacy story since I do not have many. When I saw my hematologist last Spring she said at first I had mono. I said I wasn’t positive for active mono. I’d been to other doctors and been tested many times. She looked me up and down, paused, and said, “well… you’ve got it somewhere.” At the next appointment when I still was not better she stuck to the virus theory but then said, “unless you believe in Chronic Fatigue Syndrome.”
I asked her if she believed in it, she said… yeah I think I do and told a story of another patient. It was a story of a child sick for over a year who couldn’t get out of bed, couldn’t do anything. The doctor said I knew she wasn’t depressed.
It was a couple of months before I saw her again. My white blood cells were low and she was going to need to do a bone marrow test on me. It sounded painful so I was avoiding it. When I saw her again, my white cells were thankfully normal. During that time, I had finished reading Dr. Myhill’s book. I brought it in (with all the pages written on and everything) and I said, “I’ve been getting better from reading this book. This is one of the best ME/CFS doctors in the world. If I gave this book to you would you read it?” She hesitated before taking my personal copy but I insisted it was fine. She said, “Yes! I have a patient come in every other month with this and I don’t know what to do with them! I’ll definitely read it.” I said, “I don’t want to be creating even more work for you but I really appreciate you reading this.” She gave me her business card to keep in touch and gave me a hug goodbye. The £25 for that book was the best I spent that summer. It was more than worth it to have one more doctor that might know what do to with these patients or where to send them. That doctor’s name was Dr. Azar. She is one of the good ones.