Formulate a Strategic, Coordinated and Fully-Funded Response to ME/CFS
Over the past 25 years, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has devastated the lives of more than one million Americans. The attached video is the story of how ME/CFS has affected the life of just one of those million patients.
But to date, very little has been done to help these patients.
We are asking Secretary Sebelius to convene a meeting between ME/CFS patient representatives and key representatives from across DHHS to better understand our concerns and then work with us to formulate a strategic, coordinated and fully-funded response to the challenge of ME/CFS.
We need your help. We will be more likely to get the attention of Secretary Sebelius and the Department of Health and Human Services if a significant number of people sign this petition. Please do so and ask your family and friends to do so as well. The petition is open to anyone. For those outside of the U.S., you will be able to list your country.
ME/CFS is a complex disease characterized by neurological, immunological and endocrine/autonomic dysfunction. Patients experience profound fatigue, intense exhaustion after mild physical or mental exertion, cognitive difficulties, heart rate variability and dizziness, unrefreshed sleep and pain. The CDC has said that ME/CFS “can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, end-stage renal disease… and similar chronic conditions.”
Patients can be sick for decades, often homebound and bedridden or unable to work. Patients are more likely to die prematurely from cancer, cardiovascular disease or suicide. Ten percent of ME/CFS patients are children, some as young as five years old.
Compounding the personal devastation is the financial impact on our economy. ME/CFS drains our workforce and costs our country an estimated $18 - $23 billion annually in medical costs and lost productivity.
In spite of all this, very little has been done by the United States government for over 25 years. There is very little NIH funding for research. The disease definition is inadequate, resulting in misdiagnosis. Medical education is inadequate, leaving doctors unprepared to care for these patients. There are no FDA approved drugs. Some patients are stigmatized by doctors and family who think the illness is all in their heads.
Many of us have lost decades of our lives from this lack of progress. We cannot allow our lives and the lives of our families to be destroyed any longer. Our country can ill-afford the economic costs.
It is time for the United States government to embrace this disease with the seriousness, vigor and urgency that characterized the fight against HIV/AIDS.
On June 5, 2012, a group of 14 ME/CFS patient organizations and 19 patient advocates (listed below) submitted a letter to the Department of Health and Human Services asking Secretary Sebelius to convene a meeting between ME/CFS patient representatives and key representatives from across DHHS to understand our concerns and begin to formulate a comprehensive plan to address the challenge of ME/CFS. The letter was sent to Secretary of Health and Human Services Kathleen Sebelius, Assistant Secretary for Health Howard Koh, M.D., Deputy Assistant Secretary for Women’s Health Nancy Lee, M.D. and the Chronic Fatigue Syndrome Advisory Committee (CFSAC).
Please join us in calling on Secretary Sebelius to convene that meeting and finally begin to help patients devastated for far too long by this terrible disease.
A link to the full letter that was sent to DHHS is available here.
The letter was signed by the following ME/CFS organizations and independent advocates:
ME/CFS Patient Organizations
CFS Solutions of West Michigan, CFS Knowledge Center, Inc., CFS/Fibromyalgia Organization of Georgia, Inc., Chronic Fatigue Syndrome, Fibromyalgia and Chemical Sensitivity Coalition of Chicago, Coalition 4 ME/CFS, The Connecticut CFIDS & FM Association, Inc., Massachusetts CFIDS Association, Inc., New Jersey CFS Association, Inc., PANDORA, Phoenix Rising, Rocky Mountain CFS/ME and FM Association, Speak Up About ME, Vermont CFIDS Association, Inc., Wisconsin ME/CFS Association, Inc.
ME/CFS Patient Advocates
Lori Chapo-Kroger, R.N., Lily Chu, M.D., MSHS, Laurie DeDecker, R.N., Mary Dimmock, Pat Fero, MEPD, Suzan Jackson, Cort Johnson, Patricia LaRosa, R.N., MSN, Denise Lopez-Majano, Robert Miller, Mike Munoz, Donna Pearson, Mary Schweitzer, Ph.D., Meghan Shannon MS MFT, Rivka Solomon, Jennifer Spotila, J.D.,Nancy Visocki, Toby Vokal, Charlotte von Salis, J.D.
SIgners added after June 6, 2012
ME/CFS Patient Organizations
ME/CFS Patient Advocates
Rich Carson, Celeste Cooper, R.N., Jill Justiss, Kati Debelic, R.N., Matina Nicolson, Joan Grobstein, M.D., Leela Play
Note that individual emails will be collected and delivered to Secretary Sebelius at the end of the petition drive.
More than a million Americans suffer from ME/CFS, a debilitating disease that leaves patients with a pitifully low quality of life. They can be bed-bound or housebound and unable to care for their families or continue to work. ME/CFS patients can be sick for decades and are more likely to die prematurely from cancer, cardiovascular disease or suicide.
Yet, for more than 25 years, ME/CFS has received very little federal funding for medical research and patients have received inadequate or inappropriate treatment that can exacerbate their illness. No drugs have been approved to treat this disease. Worse, patients have been often stigmatized by a disbelieving medical community and public.
We have ignored these patients for far too long and cannot ignore them any longer. I ask you to do everything in your power to mobilize the Department of Health and Human Services to respond to the ME/CFS crisis today!