Tag Archives: life changes

Advocating For M.E: Letter to President Obama

The "invisible illness"

The “invisible illness”

I am mailing my 8th letter to President Obama tomorrow.   I approach the content of my letters according to my thoughts and feelings of the day, and sometimes I get inspiration from something I read.  This is one of those times.  I refer to a blog I follow:  ME||WELLINGTON REGION ME/CFS SUPPORT GROUP INC.  Located in the UK.

July 2, 2014

President Barack Obama
The White House
1600 Pennsylvania Avenue
Washington DC 20500

Re: M.E. (Myalgic Encephalomyelitis) and The Department of Health & Human Services and NIH

Dear Mr. President;

This year is flying by. When you’re my age, time seems to go so much faster. As a senior citizen, I’ve had many life experiences – some good, some not so good. But, that’s life. If we can’t make adjustments to life situations as they occur, and make the necessary changes in our lives needed to continue on life’s path, we are in trouble.

Following that line of thought, change is necessary within the Dept. of Health and Human Services. Very necessary change. I’m referring, of course, to the lack of sufficient funds for research and the extremely slow-moving progression of recognition of a diagnostic criteria for the “invisible” chronic illness from which my daughter suffers. It is Myalgic Encephalomyelitis, (M.E.)  This disease is commonly referred to as CFS (Chronic Fatigue Syndrome), a misnomer. It is much more than fatigue. We, patients and advocates, are trying to delete CFS from “chronic” usage. Pun intended.

I am a blogger on WordPress, where I write posts about my life experiences and also about advocating for M.E. One of the blogs I follow included, in a recent post, a very definitive description of Myalgic Encephalomyelitis. This is reality:

Imagine if…one day you got a flu or a stomach bug…but it never went away; instead, it got worse…the flu-like state would be with you every day, and there would be pain, in muscles, joints, arms, back, legs, face…and this pain would sometimes be unbearable, so that you couldn’t move or stand up…then there would be nausea and headaches…and you would get repeated infections, anywhere and everywhere in your body…and dizziness and vertigo…and muscle weakness; sometimes you would be so weak that you couldn’t hold a cup to your mouth or lift your arms or turn your head…then you would get extreme sensitivity to light, noise, smell; they would make you sick…you couldn’t bear anyone to touch you; this would cause searing pain…then there would be times when your short-term memory didn’t work and you couldn’t remember words or articulate them…your brain would be so fogged over… on top of all this, you couldn’t sleep…and this would drastically limit your life and it could go on for months, years, decades or even for the rest of your life…”

Mr. President, welcome to the life and world of a sufferer of Myalgic Encephalomyelitis!  Would you believe that more than 3 times as much funding for research was allocated to studies of male pattern baldness than for M.E.?  True.

Please take this plea seriously. This “invisible” disease is serious, and is affecting more young people right now!

Very Sincerely,

 

Carol Carlson