May 5, 2017
By Lisa Petrison, Ph.D.
A petition to NIH head Francis Collins and HHS head Tom Price requesting more money for ME/CFS research now has more than 40,000 signatures.
Please consider adding your signature to this effort.
Following is the text of the petition, from Mary Gelpi of Covington, Louisiana.
I am only 31, and yet, simple tasks like taking a bath completely exhaust me. This is because I am one of millions of people worldwide who suffer from Myalgic Encephalomyelitis (ME/CFS), a complex, multisystemic disease that causes disabling symptoms like chronic pain, cognitive impairment, exertional intolerance, severe weakness and crippling fatigue. Many days I am too weak to do anything but walk to the bathroom and back to my bed. Before I became sick, I was able to attend LSU, study abroad, enjoy SEC football and earn a degree in Journalism. Now, just a trip to the grocery store can land me in bed for days. I’ve lost my independence and take 25 pills a day just to manage the pain and symptoms of the illness. I have lost my life as I knew it.
Health Agencies have dismissed this disease for decades and failed to take the health of millions of sick people seriously. There are no FDA approved treatments or cures for the disease on the horizon, which is the direct result of a major lack in funding for biomedical research. In the 2016 federal budget, the NIH allocated $6 million toward studying ME/CFS. More than double that amount was spent on male-pattern baldness. Meanwhile we are suffering, some of us bed bound, with little hope and our futures up in the air. We can do better.
Please stand with me and the millions suffering with this life-sucking disease in demanding that Francis Collins keep his promise and that the NIH drastically increase their allocated funding for ME/CFS research. The burden of this disease is huge, on families and the economy. It costs our country billions every year in lost productivity because more than half of us are too sick to work. Families savings are drained as most insurance fails to cover the high cost of longterm management.
There are so many others like me; once living productive lives with families and promising careers. Now we’re stuck with an orphaned disease and our pre-sick lives are just a memory. Some patients are so severely ill, they are confined to dark rooms, unable to tolerate sound, talking, or light. They cannot walk and some are unable to eat. They aren’t “living” they are just hanging on. And it doesn’t have to be this way.
I started this petition because people suffering from ME/CFS just want our lives back, and that will only happen with an effective treatment and eventual cure. With your signature, we can hold the NIH and congress accountable for taking our disease seriously and honoring our request to increase the NIH research budget to $100 million for ME/CFS funding. We can also restore hope to millions world-wide that they may live again, including me and my dog Monty. Thank you.
Let’s do it now.
Read about my weird sick life at 25pillsaday.com
Visit millionsmissing.org for more information about upcoming protests.
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