I met Tom once. It was a cold December day in Bethesda, Maryland, when Tom and his family came for a protest they organized in front of the National Institutes of Health (NIH) Visitors Center. We didn’t get to talk much as we shivered and schmoozed with a few passers-by who expressed interest in the protest.
The Jarretts brought zero-gravity chairs to share with patients. Many of us suffer from orthostatic intolerance, so reclining is not so much a lifestyle choice as a desperate attempt to keep our brains working longer, and our heart and breathing rates down. After the protest, they offered me the one of the chairs. I gratefully accepted and used it in a later protest at the NIH, as well as at the #MillionsMissing protest in Washington, DC.
Tom died last week, and I hardly knew him. Many of us don’t know the fellow ME patients we mourn. Sometimes we’ve never met them. Others, we met once in passing at a long meeting or demonstration that left us in such a blaze of pain, discomfort, and exhaustion that our memories blur. I’m sorry to say I remember the cold better than any impressions of Tom. Now no one will have a chance to know this husband, father, church-goer, former financial planner, and ME patient.
And yet we know them well. We have had the same thoughts, feelings, and experiences, whether it’s being humiliated by a doctor, doubted by friends, or struggling to maintain relationships as bodies fail and minds fog up. We are members of a club none of us ever wanted to join. We are survivors, until we aren’t.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the