Millions Missing 2022
Posting in solidarity with all those in London, I am one of Millions Missing with MECFS and We Are All Connected. Myalgic Encephalomyelitis is a severely disabling postViral neuroimmunological Chronic Illness with no FDA approved treatments and no cure. Only 5% of pwME recover (Health Rising, 2021).
Before getting sick I was a choral singer and carillonneur performing all over North America and Europe. I interned for Google in Data Anonymization. I was a student one semester from graduation at Wellesley College. I swam, skiied, danced, walked, and studied with ease. Me stole my life, and yet still I am here, not dead, not living, just missing. My brain is clouded and my limbs turned to lead.
ME patients functioning scores are worse than those with depression, stroke, MS, heart attack, or HIV. Only comperable to those with widespread chronic Pain and cancer patients in palliative Care (Standford MECFS Initiative, 2019).
Severe ME is often described as living Death and despite this grave level of illness housebound and bedbound patients still lack the homecare support and palliative care necessary to stop preventable suffering.
My Severe ME started out mild. But I was not advised about Post Exertional Malaise or PEM the defining feature of MECFS. I did not pace and I slowly had my life stolen by this terrible disease until I became bedbound over a year go. Please Learn From ME and Stop Rest Pace before it is too late.
Research into ME is extremely underfunded and necessary to improve long term outcomes for patient with MyalgicE and Long Covid.
Despite an economic burden of 36-51 billion dollars per year in the US alone, the NIH provides ME with 14x less funding than necessary to be funded equally to its disease burden. (Open Medicine Foundation 2021, Health Rising 2021)
I urge all who see this to fight with me. This disease is real and not rare. We need treatments and research now. Already far too many are missing, help us come back to life.
