In 2015, Tom Camenzind appeared to have it all. He was an accomplished sophomore at Stanford University. But one day, things went horribly wrong. His health deteriorated rapidly and the diagnosis was heartbreaking: he had ME/CFS.
Today, Tom cannot speak. He is frozen in time, bedridden and unable to stand light, sound or touch. But if there is one tiny silver lining, it is that the world is about to learn of his plight – shedding light on this disease well beyond our ME/CFS community. Severely ill patients like Tom cannot speak for themselves; we are determined to speak to the world for them.
A national, televised program on Tom’s plight aired last week on the show, “The White House Chronicle,” with host Llewellyn King. Watch this new, half-hour program includes heartrending interviews with Tom’s parents and powerful comments from SMCI President Carol Head.
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