The love of my life has myalgic encephalomyelitis (ME\/CFS).<\/p>\n
That meant holding a mirror under my husband\u2019s nose in the early days to make sure he was still breathing, after days or weeks of coma-like sleep. It meant seeing dozens of doctors for a diagnosis and searching for years to find a doctor who had a plan \u2013 not a cure, but a plan. Compassionate providers who listen make all the difference.<\/p>\n
It meant watching our 9-year old sons cry as they left the only friends they really knew, as we moved back to Reno to access the only treatment in an FDA-approved clinical trial, an immune modulator called Ampligen. I knew Ampligen would save their dad\u2019s life, which it did.<\/p>\n
There are still no FDA-approved treatments for the disease. The treatment lessened his pain enough to allow him to be out of bed when the boys got home from school, and they could watch Dolphins games together.<\/p>\n
Scientists hold the power and the promise of identifying treatments that can make my husband and more than 2 million patients\u2019 lives shine. Caregiving is more than taking him to doctor\u2019s visits or the emergency room. It was giving him my hope when he couldn\u2019t find his, and my determination when his needed company. But the most important care to give was helping him pursue the lone treatment trial for his disease because that made everything else possible.<\/p>\n
– Courtney, at home caregiver and wife of Robert, an ME\/CFS patient of 30 years<\/p>\n","protected":false},"excerpt":{"rendered":"
The love of my life has myalgic encephalomyelitis (ME\/CFS). That meant holding a mirror under my husband\u2019s nose in the early days to make sure he was still breathing, after days or weeks of coma-like sleep. It meant seeing dozens of doctors for a diagnosis and searching for years to find a doctor who had […]<\/p>\n","protected":false},"author":4,"featured_media":865,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"spay_email":""},"categories":[23],"tags":[],"jetpack_featured_media_url":"https:\/\/humansofchronicillness.org\/wp-content\/uploads\/2021\/05\/ken-cheung-KonWFWUaAuk-unsplash-scaled.jpg","_links":{"self":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/863"}],"collection":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/users\/4"}],"replies":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/comments?post=863"}],"version-history":[{"count":0,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/863\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media\/865"}],"wp:attachment":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media?parent=863"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/categories?post=863"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/tags?post=863"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}