Another year passes, and here I lay, on the couch or in bed, another one of the millions missing from participation in life due to myalgic encephalomyelitis. My family and friends must be tired of hearing about this relentless and insidious disease that robs me of my ability to have a normal life. But here’s the thing, I’m not alone. There are between 15 and 30 million people around the world with this disease. We have been mislabeled with the disparaging name “chronic fatigue syndrome,” denigrated by the medical community, and ignored by governments who allot shamefully minuscule funding, or none at all, for research.
M.E. is invisible. “You don’t look sick” is a common and dismissive refrain. It is severely under and misdiagnosed. Ronald Davis, PhD, Professor of Biochemistry and Genetics at Stanford University calls it “one of the last major diseases we know nothing about”.
M.E. is real. Imagine being so ill you can’t take a short walk, leave the house for weeks, talk on the phone, read, or have a visitor. When you do, you experience debilitating symptoms for days and weeks afterward. This is M.E.
I am one of the Millions Missing.
Can you see M.E.?
There are various things you can do to help. Sign this petition to Dr. Collins of the NIH and contact your congressional representatives to demand that the NIH grant appropriate levels of funding. A good place to start finding information would be MEAction.net. These are folks with ME who risk their own health to organise protests, start petitions, educate and inform politicians, the NIH, and more.
There are protests taking place this Saturday, May 12th, throughout the world. Find them here #MillionsMissing.
Follow the hashtag #MillionsMissing and #CanYouSeeMEnow? on social media to see what’s going on.
Be a part of the solution.