ME Awareness 2023 #GoBlueforMECFS
This May 12th, International MECFS Awareness Day. I’m wearing blue for the MILLIONS MISSING worldwide due to this devastating illness.
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Myalgic Encephalomyelitis (ME/CFS) is a chronic, complex, neuroimmune disease that profoundly limits every aspect of a person’s life, even in its mildest forms. 80% of cases of ME/CFS are initiated by an infection, and less than 6% of people recover.
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MECFS was estimated to affect 17-25 million people worldwide pre-pandemic. Currently there is an estimated 22-43 million long COVID cases in the U.S. alone with 50% of Long C patients meeting the criteria for ME/CFS.
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There is no FDA-approved treatment or cure for ME/CFS, and every day— people who thought this could never happen to them — are devastated to join this nightmare
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When I was 19 my life turned upside down by what I now know was "mild" ME.
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A former straight-A student and internationally touring choir member, I suddenly was sleeping through classes and dropping extracurriculars that went from fun and relaxing to exhausting.
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I had unexplained paralysis episodes following physically exertive activities, now recognizable as post-exertional neuroimmune exhaustion.
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Yet no doctor recognized my ME. I was told I must be depressed. Told to do more, the opposite of the pacing advice I needed.
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By the time I finally figured it out I was bedbound with severe ME. It is devastating to me that this predictable harm continues to repeat itself. Learn From ME and Stop Rest Pace before it is too late.
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WE ALL want our lives back. For this to happen the legacy of disbelief and neglect surrounding ME/CFS, and all post Viral Diseases (dysautonomia, mast cell activation syndrome MCAS) must end. This requires global education, improved diagnosis and management, economic support people with ME, and robust research funding that is reflective of disease burden. We want a future with treatment solutions for ME/CFS, and possibly even a cure.
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Join me on May 12th and @GoBlueForMECFS and Go Blue For A Cure.
