CFSAC Public Comment - Leah Williams, January 2017

January 13, 2017

Chair and Members of CFSAC,

My name is Leah Williams. My husband and I live in Cambridge, MA. Both of our children have ME/CFS. My son, now aged 21, became sick when he was 12. He had what seemed like an ordinary cold, except that he never got well again. Instead, he suffered increasingly from headaches, joint pain, unrefreshing sleep, overwhelming fatigue and difficulty concentrating. He missed most of high school because he was too sick to physically attend. His health has improved somewhat over the last few years and he is attending college, but he does not have the energy or stamina of a healthy kid his age. My daughter, now aged 18, also became sick at around the age of 12. Her symptoms were similar and equally debilitating and have gradually gotten worse. She is enrolled in our local high school, but is much too sick to attend. She is taking online classes and has a tutor at home.

We have had wide range of experiences with schools from warm and supportive, through benignly neglectful to openly hostile. The best experience was the grammar school that my son attended for the first three years of his illness. The school staff were able to accommodate his highly variable attendance. Some weeks he could go a few hours every day and some weeks he was too sick to attend more than one partial day. They worked closely with us to send work home for him, to accept work late, and to modify assignments. These accommodations enabled him to successfully complete 6th through 8th grade.

The worst experience was the school my daughter attended for 8th grade. In spite of a Section 504 plan describing her illness and the accommodations she needed, and in spite of letters from her doctors, the school staff made everything as difficult as possible. The principal said that my daughter could not make up work that she missed in class, and I was not allowed to come on campus to drop off or pick up assignments. The school social worker told my daughter that she had to either throw up or faint before she would be allowed to leave a class. The assistant principal filed a truancy claim against my daughter in juvenile court. Finally, eight months into the school year, the school administrators agreed to the accommodations we wanted all along, a waiver of the attendance policy, partial school days and modification of assignments, and my daughter was able to successfully complete 8th grade.

I think that awareness and education about ME/CFS would have made a huge difference. If the school staff had known what ME/CFS is and how it impacts schooling, they might have approached our situation differently. This was a few years ago, but it would have helped if they could have found accurate and up-to-date information at the CDC website. It would have helped if the school nurse had attended a continuing education program on ME/CFS. It would have helped if the Public Health Department’s school health manual mentioned ME/CFS at all. And, of course, it would have helped enormously if there were a diagnostic test for ME/CFS. For that, we need more research funding.

Thank you for this opportunity to comment and thank you for all your efforts on behalf of patients and their families.


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Documents used in Congress visits March 2016