Photo from Cort Johnson interview.
“Tom,” as many of us knew him, once had a thriving career in sales before he was struck down with what is known by many as chronic fatigue syndrome and chronic Lyme’s disease. However, Tom never stopped his tireless advocacy for those suffering from invisible illnesses that cause disability and hardship. So it is only fitting that we give tribute to a great advocate.
Tom was a go getter, a blunt speaker, but proficient. He used his voice, time and talent to raise awareness even though he suffered and struggled like so many of his peers in the world of chronic illness. He fought for recognition of chronic immunological and neurological diseases including, myalgic encephalomyelitis/CFS, fibromyalgia, multiple chemical sensitivity, Lyme’s disease, Gulf War Syndrome and other overlapping disorders he felt deserved awareness.
Tom was not only proficient, he was highly intelligent, and never missed a beat. Some might call him crass, but all would agree he was effective. He chose his battles well and used his disdain for the way people were treated. He used his anger regarding the ignorance and complacency of many as fuel for his mind, even when his body was failing him. When he could, he used his unique and colorful public speaking skills to bring awareness, and he was adamant about a name change for “chronic fatigue syndrome.”
Tom was the founder of international awareness day for Invisible Illness, May 12th. In an interview with Cort Johnson (2008) Tom said, “After reading Byron Hyde’s great book on the history of Myalgic Encephalomyelitis, I decided to use his Birthday, and lo and behold, May 12th [thought to be] was Florence Nightingale’s birthday.” How fitting.
It doesn’t stop there; Tom was also the founder of R.E.S.C.I.N.D. (Repeal Existing Stereotypes for Chronic Immunological and Neurological Disorders.) This author signed a petition initiated by R.E.S.C.I.N.D. some 13 years ago along with thousands upon thousands of others. The stories with those signatures are heart wrenching, and Tom did all he could do to spread our voice. Little did this writer know that we would meet again in the virtual world, and that we would exchange personal emails on various advocacy issues.
Tom always supported other advocates. He was always concerned that the ball would be dropped on raising awareness for ME/CFS, FM, GWS, Lyme’s and other clustering invisible illnesses. He knew only too well how these illnesses can take a person with strength of character and a thriving career and grind their human dignity into the ground. Therefore, he seized yet more opportunities by making contributions to the NIH committee Chronic Fatigue Syndrome Action Committee, CFSAC, even when he was so ill he could hardly hold up his head. At one point he took on the CDC, and no doubt he made his points clear.
Tom was never one to mince words, he made this writer laugh on many occasions with his bold and powerful statements, but he also made people think. Today, the movement continues for a name change. It’s here, it is recognized by the CFSAC that chronic fatigue syndrome will be called myalgic encephalomyelitis/chronic fatigue syndrome. But the work isn’t done; now the “label” must be embraced by every healthcare provider and researcher. You did this Tom!
Tom was an advocate who spoke brilliantly on the Larry King show adding his special flavor for a battle from which he would never back down. He would describe himself as a mover and shaker and that was apparent in his vibrant way of speaking. When he spoke, you were never left wondering where he stood with his advocacy. On his Linked-In profile (always connected), he said he loves fast cars, beautiful women, great jazz, charity concerts, travel, great food and wine! That should come as no surprise, and I have seen pictures to prove it.
Tom was a true advocate; he inspired many, and he never stopped despite many obstacles sent his way. Tom made a difference for many patients, some of which he never knew. The legacy is to never give up. Help Tom live on by continuing the work to raise awareness. Honor this great advocate’s legacy by putting action into your words. Use your time and talent, you have them. There could be no better tribute to this man called friend by many.
Written by Celeste Cooper, friend and fellow virtual advocate