Last fall, when the National Institutes of Health (NIH) announced they would finally help the 1 million to 2.5 million Americans with the disease commonly known as chronic fatigue syndrome, patients hoped this would be our moment of recognition — like when the NIH recognized multiple sclerosis and Parkinson’s, two other neurological illnesses with no known cause or cure. However, six months later we find the government’s response is lacking. They are clearly not treating this as a serious disease that devastates patients lives.
Serious? Devastating? Not words most would associate with an illness that has mere “fatigue” in the name. But the name, which trivializes the horror of the disease, was adopted by the government decades ago and has been truly detrimental to patients ever since. The stigmatizing name allows doctors, media, and even the families of afflicted loved ones to dismiss patients as lazy malingerers who are not truly sick.
After all, who isn’t fatigued in today’s hustle-bustle world? Take a nap. Get over it. Exercise it away.
I tried. But napping didn’t help, and exercise made me significantly sicker. So, for the last 26 years in which I have had myalgic encephalomyelitis (ME) — the World Health Organization’s term for chronic fatigue syndrome — I have been forced to spend much of my life in or near bed.
Myalgic encephalomyelitis is characterized by pain and inflammation of the brain and spinal cord. This condition leaves me so exhausted that, at times, it’s hard to get to the bathroom, let alone shampoo my hair. The brain fog can be so thick that formulating thoughts are a struggle. Sometimes I get episodes of vertigo that make it hard to see straight. And I have a hyper sensitivity to chemicals and perfumes.
The hallmark of ME, though, is the inability to exert energy — physical or intellectual — without crashing. Sometimes it can take days or weeks to regain strength after a phone conversation. It’s as if my body can’t replace the cellular energy required to do, well, just about anything. And with no commonly accepted diagnosis and no FDA-approved treatments, many of us with ME have been languishing like this for years.
The prestigious nonprofit Institute of Medicine states that ME patients can be more functionally impaired than patients with congestive heart failure, multiple sclerosis and end-stage renal disease. Yet, the National Institutes of Health funding for ME research is shockingly low — especially when compared to similar neuroimmune diseases. There are about 400,000 multiple sclerosis patients in the U.S., the federal government spent $94 million to research the disease in fiscal year 2015, according to the National Institutes of Medicine. Meanwhile, for the one million-plus Americans, the federal government spent $6 million on research — which is also how much the National Institutes of Health dedicated to hay fever research that year. People with hay fever don’t spend decades too weak to function.
On Wednesday the #MillionMissing Protest was slated to take part at U.S. Department of Health and Human Services offices in Washington, D.C., Atlanta, Boston, Dallas, San Francisco, and Seattle to demand the government make a serious commitment to urgently address ME, including funding research and promoting appropriate clinical care for patients.
I hope the #MillionsMissing protests draw attention to the millions of dollars missing in research funding to find treatments; the millions of health practitioners who haven’t been trained to treat ME; and the millions of ME patients missing out on their careers, schools, social lives, families — and likely even this protest. To better “see” the missing protesters, there will be a display of empty shoes that homebound patients are sending in. Finally the invisible Americans with ME will be visible, even though many are so ill they cannot leave their homes.•
Rivka Solomon is a writer and ME advocate living in the Pioneer Valley. She is writing a book about her 26 years with ME and Lyme disease. Contact her at Rivka@ThatTakesOvaries.org.