A hidden epidemic has swept the globe — and your neighborhood is not immune. In its wake are millions of lives ruined. Its silent victims are all ages and backgrounds, in every state across America: Up to 99,000 in Illinois, 152,000 in New York and 211,000 in Texas. There is no prevention, no treatment and no cure for this barely acknowledged disease that gets barely any government funding.
There are 1 million to 2.5 million in the United States, 17 million worldwide, whose lives have been devastated due to the most serious neuroimmune disease you never knew existed: Myalgic Encephalomyelitis (ME).
With up to 76,000 in Michigan, 79,000 in Georgia and 300,000 in California, these numbers make up the millions of people missing out on their lives, all because of ME. And I am one of them.
Mononucleosis is no big deal, right? In my early 20s my roommates and I were felled at the same time. We three went down like we had been hit by a Mack truck that then rolled backward. One month later, my roommates returned to college. I never returned to a normal life.
A normally short-term illness was my entry into long-term disability. The ME onset stories of the up to 52,000 patients in Massachusetts, the 69,000 in New Jersey and the 98,000 in Pennsylvania likely sound eerily similar to mine.
When ME hits, the person becomes so physically impaired, so weakened, they often have to quit school or abandon their careers: 75 percent of patients can’t work. Many can’t be social or help with their families because they have no energy. A quarter are homebound or bedridden. Some are too weak to feed themselves.
My blood tests showed the mono had passed, yet my body felt as though it had not. I barely had the strength to brush my teeth. The days went by, then a year. When I finally recovered, it was only relative. I was still constantly pushing against a wall of exhaustion.
Until one day, I couldn’t push. And now I spend my life tethered to my bed. This November I observe my 27th “sickaversary” — decades of illness, bone-penetrating exhaustion and cognitive impairment, coupled with the classic characteristic of ME: any type of exertion, physical or cognitive, results in a relapse.
Year after year, I — and the 5,000 patients in Washington, D.C., and the 55,000 in Seattle — hoped the government would use some of its $30 billion National Institutes of Health budget to research ME. Instead, NIH gives a paltry $5 million to $7 million per year. Multiple sclerosis, a similar disabling neuroimmune disease but with half as many patients as ME, get about $94 million a year. Based on prevalence and disease burden, ME should be funded $250 million per year.
The government’s long-term lack of investments turns off academic researchers and pharmaceutical companies from studying ME, and that has resulted in where we are today: No generally accepted diagnostic criteria for ME and no FDA-approved treatments. Plus, the CDC still uses misleading research for educating the public and doctors about the disease. They suggest treatments that can permanently hurt patients, such as exercise.
So for the last 30 years, advancements in this disease have been stagnant, frozen in time, leaving patients to suffer alone. Our one glimmer of hope is recent privately funded research that appears to have found a biomarker: A groundbreaking discovery shows that ME patients have significant metabolic deficiencies that prevent their very cells from functioning properly. This is research our government should have funded a long time ago.
That is why September 27 is a #MillionsMissing Day of Action for ME patients and their families. We hold (or, by the time you read this, we already held) demonstrations in 12 cities across America: Atlanta; Boston and Northampton, Mass.; Chicago; Dallas; Lansing, Mich.; Pittsburgh; Morristown, N.J.; New York; San Francisco; Seattle; and the District of Columbia.
We are drawing attention to the millions of dollars missing from federal research into ME, the millions of healthcare professionals missing training on how to accurately diagnose and treat ME, and the millions of patients missing school, a career and time with family and friends. Most are so sick they can’t even attend our demonstrations in order to advocate for their own lives.
I’m going to do my best to make it to the one nearest me.
Find out more at www.MillionsMissing.org
For ME prevalence in your state, check out this chart http://tinyurl.com/hh3wcpy. It is based on the National Academy of Medicine’s report http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx