Journal of IiME Volume 9 Issue 1 Anna said something that caught my attention, “If the CDC says it is a real illness, why does everyone think that I am making up my symptoms?” This was one of the many questions that Anna stumped me with. One of the things I used to say to my patients and their parents was that the severity of the beginning of the illness was an indicator of the long term prognosis. Because Anna could not walk for over a year was bad news; it implied that she would not do very well in the long term. Of course there were school issues. I wrote notes saying that Anna was ill, but the teachers did not believe me. I went to her school and argued for home tutoring. The school refused, saying that she had school phobia. I went back to the school and said that Anna had an illness recognized by the CDC, and if they wished to practice medicine without a license, I would take them to court. They agreed to two one hour tutoring visits per week. Obviously, this amount of tutoring is negligible. But it taught Anna several things. First it taught her that I was committed to her and would not put up with discrimination. Secondly it taught her about the exertion intolerance. The post-exertion malaise is not just after physical exertion, it occurred after mental exertion as well. And it taught her about orthostatic intolerance. If she had her tutoring session sitting up at the kitchen table, she could not do well. But she did better if she was lying down. This observation of Anna’s stimulated our office to do a small study, never published. If you ask healthy persons in what position they read, they almost invariably say that they read sitting up in an armchair, May 2015 except at bedtime. Ask someone with ME/CFS and they say they always read lying down. Blood flow to the brain, orthostatic intolerance. And when she came to understand that, she no longer paid attention to people calling her a hypochondriac. We did a “poor-man’s tilt table test” where Anna would stand quietly next to the bed while we monitored her blood pressure and pulse. A healthy adolescent can stand for ninety minutes, although that would cause leg discomfort. Anna had three abnormalities on this test. Her pulse rate went up to 140 beats per minute after ten minutes of quiet standing, meaning that she had Postural Orthostatic Tachycardia Syndrome (POTS). Her pulse pressure – the difference between the upper and lower number of her blood pressure went down to 10 mmHg, called orthostatic narrowing of the pulse pressure. And at ten minutes she passed out, almost. Her blood pressure went to zero. ●● ● One specialist wanted to operate on her brain saying that she had Histoplasma meningitis, but the others said not to operate. Doctors. ●● ● to school. She did her homework, and despite saying that she was having trouble thinking and reading, she got good grades. Some days she would use her wheelchair which the insurance company did not want to provide for her. Some medicines helped a little. Invest in ME (Charity Nr. 1114035) www.investinme.org Page 41 of 57 Paula in our office is very good at predicting when this is about to happen and helped her to lie down. In her case she had three very good reasons to have orthostatic intolerance and reduction of blood flow to the brain. The years passed. Anna was able to get up and walk around the house a bit, and on good days she was able to get

42 Publizr Home

You need flash player to view this online publication