It’s been a devastating summer for the ME community. We have lost Jodi Bassett, Louise Ramage, Tink Bastian, and Linda Hayes Burke. Yesterday, we learned that we lost Tom Jarrett.
Jodi Bassett, 41, was a passionate advocate for ME who helped thousands of people better understand their condition through her website The Hummingbirds’ Foundation for M.E., and through the books she authored. She was a relentless fighter who advocated from her bed much of the time.
Louise Ramage of White Rock, British Columbia, Canada, also passed away this June. Her daughter, Leeanne St. Cyr, wrote on her own Facebook page, “She would want me to tell you about her disease ME… this took her life.”
Christine (Tink) Bastian of Portland died June 23, 2016 at age 64, after a long illness. Bastian was a Dutch expatriate and former graphic artist who had been ill with ME since 1970. She and her husband, Waldo (Zogje), had two children, Lydia and René, and two grandchildren.
Linda Gayle Hayes Burke, of Ozark, Alabama, died of a heart attack at the age of 68. She is survived by her husband of 50 years, James; her daughters, Lisa and Sherrie; her son, Donald; seven grandchildren; and three great grandchildren.
Yesterday, we learned that ME advocate Tom Jarrett committed suicide. Tom, a former estate and certified financial planner, helped to organize a protest against the Pathways to Prevention Workshop at the NIH in 2014. About his protest at the NIH, Tom said, “There is so much at stake here for my family and for the ME community. Will the P2P meeting and resulting report result in decades more of neglect, while my sons grow up without a healthy father, and patients with ME suffer and die, saddled with a vague disease definition, a trivializing name, and no hope of a cure? I don’t think so, because we patients will keep fighting until the NIH stops and truly listens to our voices.”
Tom ceased advocacy efforts when his chronic pain became too severe for him to continue. He is survived by his wife and two young sons.
These deaths after years of chronic illness underscore the need for better research and better medical care for people with ME. If you agree, spread the word about ME, help us protest the lack of funding and dismal state of medical education in ME via #MillionsMissing, or make a donation to help fund the community effort.
If you or a loved one has been considering suicide, please call the U.S. National Suicide Prevention Lifeline, at 800-273-TALK. For crisis hotlines in your area, please consult this list.
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Darla N. and Adriane T. made significant contributions to this article.
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