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.
Educate yourselves and help spread awareness to those around you: Solve ME/CFS and Open Medicine Institute.
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.
Watch Jen Brea’s fantastic TEDtalk here and movie Unrest.
Be a part of the solution.
Jewels of Endearment 
Can this be posted to social media sites?
I’m one of the Millions Missing for 23 years. Mostly home bound but pushed myself to attend an event 3 hours away. Now in major crash. Being 67, I don’t see a treatment for me in my lifetime.
I miss my active, independent, fun and busy life. My husband had to retire at 55 to care for me. We now have my 93 yr old Mom here. She’s actually more mobile and energetic than I am.
I’ve been active in advocacy up until 8 months ago and I just couldn’t do it anymore physically. I sign petitions, write letters, tweet to NIH, CDC and was posting any info about ME.
So at this point I’m only able to post something every so often.
I just started being on WordPress and don’t know all the ins and outs of it yet. Brain fog is in the house!
Thanks for any reply.
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I’m impressed you were able to get to event for MillionsMissing- Bravo for you! I automatically post this on Facebook and Twitter. Why don’t you PM me on the contact page and I’d be happy to give you any help you might need with WordPress. We foggies must stick together!
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I hope that I posted my support correctly. THIS is what our nation needs to fund!
Susan
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Thanks Susan! I agree. The systematic neglect of ME/CFS has been appalling. I appreciate all your support!
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We do care. We both signed the letter.
Sandy Simpson simpsn@att.net
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Thanks Sandy and Don! Miss you.
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I hope this horrible disease becomes visible to all! It’s so sad that funding had not been readily available! I hope by learning more and spreading the word of this debilitating disease brings much needed light to all. I love you so much
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Thanks so much doll! Perhaps if every family member and friend of those of us with M.E. sign the petitions and contact congress* we will have some hope for treatment in our lifetimes. Love you!
*the petitions and info are at the bottom of this post
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