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Often Bedridden For 25 Years, Advocate Welcomes NIH Move On Fatigue Syndrome

Writer Rivka Solomon, who has Myalgic Encephalitis -- also known as chronic fatigue syndrome -- protests federal inaction in Washington, D.C. (Courtesy)

Writer Rivka Solomon, who has myalgic encephalomyelitis — also known as chronic fatigue syndrome — protests federal inaction in Washington, D.C. (Courtesy)

By Rivka Solomon
Guest Contributor

Last week, the National Institutes of Health announced a welcome change: They promised to help the more than 1 million Americans who have the devastating disease commonly known as chronic fatigue syndrome.

This is akin to the NIH finally recognizing multiple sclerosis or Parkinson’s disease, two other debilitating neurological illnesses that also have no known cause or cure.

The name chronic fatigue syndrome, which trivializes the true horrors of the disease, was adopted by the government decades ago and has been truly detrimental to the patients. The stigmatizing name has allowed doctors, the media and even families whose loved ones got sick to dismiss patients as mere lazy malingerers.

After all, who isn’t fatigued in today’s hustle and bustle world? Take a nap. Get over it. Exercise it away.

Well, I tried. But napping didn’t help, and exercise made me significantly sicker.

So for the last 25 years in which I have had myalgic encephalomyelitis, or ME — the name the World Health Organization uses and the name most patients prefer — I have been forced to spend much of my life in or near bed.

Try doing that for a quarter of a century.

Myalgic encephalomyelitis means, literally, pain and inflammation of the brain and spinal cord. But what does that translate to in the real world? I often struggle with exhaustion so crushing it is hard to get to the bathroom, let alone lift my arms to shampoo my hair; brain fog so thick that formulating and finishing thoughts is a struggle; vertigo that makes it hard to see or stand up straight; numb hands; Jello-like legs; joint and muscle pain; and a hyper sensitivity to chemicals and perfumes that turns me into a canary in the coal mine.

The hallmark of the disease, though, is the inability to exert any energy — physical or intellectual — without a relapse or flare of unknown length. Sometimes it can take days or weeks to regain my strength after a phone conversation. It is as if my body can’t replace the cellular energy required to do, well, just about anything.

All this came on after mono. That was all it took. Mononucleosis. Other patients have gotten myalgic encephalomyelitis/chronic fatigue syndrome — abbreviated as ME/CFS — from other assaults that apparently slapped down their immune systems, too, and/or triggered an autoimmune response. The result? With no commonly accepted diagnosis and no FDA-approved treatments, many of us have been languishing for years.

Then, in 2014 and 2015, the NIH sponsored two initiatives: a report generated by the Pathways to Prevention program and a report from the prestigious Institute of Medicine. Between the two, they found ME/CFS was a serious disease that can significantly impair the lives of those who get it. They also found that research into ME/CFS was seriously underfunded and there is an urgent need to invest in it.

How true.

For years, the NIH has been allocating a pittance to ME/CFS research. This is most strikingly seen when compared to other neuro-immune diseases. Multiple sclerosis, with 400,000 U.S. patients, gets funded $102 million per year. ME/CFS, with more than 1 million U.S. patients, gets a paltry $5 million per year. The NIH gives more money to research on hay fever than ME/CFS. And yet people with hay fever don’t spend decades in bed, too weak to function.

The question is why? Continue reading