Many of us have already seen and signed Mary Gelpi’s petition asking the NIH to increase its research budget for ME/CFS funding to $100 million. Her groundbreaking petition has already netted 27,000 signatures as of this post. In Mary’s own words:
I am only 31, and yet, everyday things like taking a bath exhaust me. This is because I am one of millions of people worldwide who suffer from Myalgic Encephalomyelitis (ME/CFS), a complex, multisystemic illness that causes pain and disabling symptoms, specifically severe weakness and crippling fatigue. Before I became sick, I was able to travel in college, fall in love, enjoy SEC football and graduate. Now, just a trip to the grocery store can land me in bed for days. I take 25 pills a day just to manage the pain and symptoms of the illness. I have lost my life as I knew it.
Those of us in the ME/CFS community are used to not being taken seriously. There are no FDA approved treatments or cures for the disease on the horizon, which is the result of a lack of funding for research. In the 2016 federal budget, only $5.4 million was allocated to the Center for Disease Control (CDC) to research the disease. More than double that amount was spent on male-pattern baldness.
We can do better.
Please stand with me and the millions suffering with ME/CFS in demanding that the NIH increase the allocated funding for the research of this disease. In the last year, the NIH has announced that they planned to dramatically increase funding for ME/CFS. Annually in the past, they have given around $5 million in research grants–far from enough. This is a positive step, but we’ve been promised things before and let down time and again. I am respectfully asking the NIH to officially fulfill the promises they have made regarding ME/CFS, and to drastically up the funding allocated for research so we can finally find a cure, and at least possible treatment options in the meantime.
For now, so many sick people have no where to turn to manage their illness. Many doctors are ill-informed, and often patients have to become their own doctors. 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 illness seriously and honoring our request to increase the NIH research budget to $100 million for ME/CFS funding. #WeCanDoBetter
Let’s do it now.
Here is the short letter that accompanies the petition:
Director of NIH
Secretary of Health and Human Services
This petition is on behalf of the 3 million extremely sick people in our country who are desperate for research, treatments, and a cure regarding ME/CFS and their associated illnesses. We are asking that the funding allocated toward the research of this devastating disease be increased to $100 million annually in order to fund studies, find effective treatments and hopefully, ultimately, a cure for this “Invisible Disease.” I know you’re the right people who can step in and make this change happen. Together we can improve millions of lives and cease their suffering by offering a real shot at a cure and at least some honesty and validity in the meantime. I truly thank you for your time, and I know your job isn’t easy. But this disease has spent decades in the wrong hands and been handled as though it didn’t exist. The time to come together and change all of that is now, and I look forward to what we can achieve in the near future. Thank you again.
Even if you have already signed, you can use the social media links on the right-hand side of the petition page to tell friends and family that it’s past time to increase funding for ME/CFS research.
You can also promote the petition by donating $10 to promote the petition so that it will be seen by more potential supporters.
Thanks, Mary, for adding your voice to the #MillionsMissing protest! You can follow Mary’s ME/CFS blog at 25pillsaday.com.