Journal of IiME Volume 9 Issue 1 intolerance, as in Systemic Exertional Intolerance Disease (SEID) as some are calling it now. After a two hour visit I made the diagnosis of ME/CFS as she was classic in all respects except that she was more severe than most. Because of the nausea, she was unable to eat and had lost weight, almost 50 pounds. She could not walk and had to be carried to the bathroom by her parents. She had killer headaches. I was happy to take her on as a patient. The first steps in her treatment were very straightforward: I had to undo the damage done by previous medical personnel. This part of the story is well known to most young persons with ME/CFS. She was said to be anorexic, and that if she did not begin to eat, she could starve to death. All her GI tests were normal except the motility studies. She was admitted to the behavioral units where she had to walk to the bathroom or pee her pants. And it was not certain that anyone would help her change clothes. The constant message given to her was that there was nothing medically wrong with her, and that her symptoms were a desperate cry for attention due to mental illness. Unravelling this damage was not difficult. She had been an A student and an athlete, two factors that argued against school phobia. She was socially outgoing and had good friends, the majority of whom were dropping away, another strike against behavior disorder. Her parents were wonderful people, with good communication and absence of scapegoating, an abnormal dynamic that can exacerbate behavior disorders within families. At first, Anna did not trust me at all, which was a healthy response to the medical abuse she had May 2015 been subjected to. But after a while the doubts began to fall away. She came to understand her condition which is essential to managing it long term. We talked about brain blood flow, orthostatic intolerance, autonomic nervous system dysmotility, and about the need to have a thick skin. I have always insisted on complete honesty with young persons with ME/CFS. If they are neurotic, they need to see that neurosis from another point of view. Confrontation with support is the classic technique. I once told a 14 year old boy that he had ME/CFS, but he did not need to limp to show others that he was ill. Although I confronted him, I said nothing to imply that the rest of his symptoms were bogus – but the limp was. He did well and never limped again. ●● ● 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. ●● ● A thick skin is necessary. The world is full of evil and everyone comes in contact with it every day. I suggest to everyone to listen carefully to all criticism. If there is any truth to it, try to make changes. If there is no truth to it, discard it, but only after thinking about it carefully. If someone calls you a hypochondriac, as happened to Anna, consider the possibility. Thinking about it will do no harm. Pile up evidence for and against. Putting together that evidence was the next step for Anna. I have never been a great fan of the Centers for Disease Control (CDC). But they put together a terrific paper which demonstrated that the likelihood of CFS after an infection was related to the seriousness of the infection at the beginning1 . Invest in ME (Charity Nr. 1114035) www.investinme.org Page 40 of 57
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