Adoption of the established disease definition and name Myalgic Encephalomyelitis (ME) by HHS and provision of HHS funding based on known disease burden
I am writing to you as a constituent and deeply concerned citizen. I need you to be my champion regarding the severely debilitating, chronic, neuro-immune disease Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS). ME patients are too sick to advocate for themselves, and so this condition doesn’t have the widespread awareness that other severe diseases do. That’s why political action on ME patients’ behalf is vital. Specifically, I need your help to increase National Institutes of Health (NIH) funding, establish Department of Health and Human Services (HHS) nomenclature, and modify HHS diagnostic criteria for this horrific disease. An estimated one million Americans suffer from ME, a long-term disease that primarily targets young, previously healthy adults from diverse ethnic and socioeconomic backgrounds. The disease is so severe; it renders a quarter of its patients bedbound and unable to care for themselves. More than half are disabled and can’t work, attend school, or participate in daily life activities. ME patients do not spontaneously recover. ME patients are known to be “more functionally impaired than those with type 2 diabetes, congestive heart failure, [and] multiple sclerosis.” The Centers for Disease Control (CDC) estimates ME’s annual burden on the U.S. economy to be $17-24 billion. However, the NIH consistently places ME at the rock bottom of its budget, with barely $5 million/year. This is less than the NIH allocates for hay fever, and is nowhere near its allocation for other similarly burdensome diseases: 2014 HHS/NIH funding U.S. patient population Funding per patient HIV/AIDS $2.9 billion 1,200,000 $2,481 M.S. $102 million 400,000 $255 Parkinson’s $139 million 1,000,000 $139 ME $5 million 1,000,000 $5 As a result, ME has no known cause, no FDA-approved treatment, and no cure. The lack of progress in ME research over the past 30 years is appalling, and is reflected in the absence of a standard of care for ME or even a knowledgeable response from most medical practitioners when encountering these patients and their families. Accordingly, I strongly urge you to direct the HHS to fund biomedical research for ME in the amount of $250 million, which is commensurate with the disease’s severity and burden. To move the science forward on ME, the disease also needs appropriate nomenclature and well-defined diagnostic criteria. Originally named Myalgic Encephalomyelitis (ME) in London in 1955, ME is known in the U.S. by the less scientific and more trivial name, Chronic Fatigue Syndrome (CFS). For this reason, HHS’s Chronic Fatigue Syndrome Advisory Committee (CFSAC), ME medical experts, patients, their advocates, and their families have long implored the HHS to adopt the disease’s historical name, Myalgic Encephalomyelitis, which more accurately refers to the disease’s infectious neuromuscular nature. This makes particular sense given that ME will appear in the 2015 U.S. ICD Codes as U.S. ICD-10-CM under the neurological category (G93.3), and it has been coded under the neurological disease code (G93.3) by the World Health Organization (WHO) since 1969. Similarly, HHS’s Chronic Fatigue Syndrome Advisory Committee (CFSAC), ME medical experts, ME patients, their advocates, and their families have entreated the HHS to strike its current, overly-broad ME diagnostic criteria in favor of the well-defined, globally-accepted Canadian Consensus Criteria (CCC), which was established in 2003 by a team of international ME medical experts. The International Association of Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (IACFS/ME), the field’s professional organization, has officially endorsed and adopted the CCC standards, as have at least 50 ME medical experts, almost 200 ME advocates, and more than 6,000 patients. The 2011 International Consensus Criteria (ICC) revision is also well-established and alternatively acceptable. In conclusion, as a deeply concerned citizen and your constituent, I strongly urge you to use your powers and direct the HHS to: 1. Fund biomedical research for ME in the amount of $250 million, which is commensurate with the disease’s severity and burden; 2. Adopt ME’s historical name, Myalgic Encephalomyelitis, and cease using Chronic Fatigue Syndrome; and 3. Endorse the well-defined, globally-accepted Canadian Consensus Criteria (CCC) for U.S. ME diagnosis and research. By taking these three critical steps, you will eliminate the greatest obstacles to finding an ME cure and thereby significantly ease the enormous physical and economic burden of ME on millions of American patients and family members.
Your Congressional representatives
First & Last Name
please leave blank
Allow ME Advocacy.org to contact me about important future issues
Powered by OneClickPolitics