Chronic Fatigue Patients Fight for Research, Funding, and Recognition

In 25 cities, patients and allies will protest under the name Millions Missing.

Millions Missing

A past Millions Missing demonstration/Photo by Mary F. Calvert

On Tuesday, in 25 cities around the world, myalgic encephalomyelitis (ME) patients and allies will raise the voices they feel they’ve been denied for decades.

Under the name Millions Missing, the ME community is protesting the neglect it says it’s felt from the government and the medical field—a neglect spokespeople say has left millions of people undiagnosed, untreated, and unnoticed.

Grace Woodham, the organizer of the Boston demonstration, developed ME, also known as chronic fatigue syndrome (CFS), nine years ago, when she was 18. “By the time I was 19 or 20, I was just not functioning at all. Nobody believed me and I couldn’t get medical treatment that was appropriate,” Woodham remembers. “I knew then that there had to be some kind of local action.”

As its alternate name suggests, ME/CFS is characterized by extreme exhaustion, to the point that sufferers are often confined to their homes, or even their beds. Any sort of physical exertion can lead to extreme weakness and fatigue, sometimes for days afterward or longer.

At least a million people in the U.S. have the condition, according to the CDC, but some estimates soar as high as 2.5 million. As of now, there is no known cause or treatment. The condition has also been surrounded by controversy, with some experts arguing it’s actually a psychological illness, not a physical one.

Despite the murky status of ME/CFS treatment, Woodham got lucky. She responded well to a course of antivirals last year, and is now back at work. But for many ME/CFS sufferers, the diagnosis lasts for decades.

Rivka Solomon, who is involved in the Millions Missing protest in Western Massachusetts, has had the disease for 27 years, since she was 21. In that timespan, she says, she’s been homebound about 80 percent of the time, and bedridden for 70 percent of the time.

“It’s really a hidden epidemic,” Solomon says. “Despite the fact that it’s not rare, still public health authorities in the U.S. and around the world have ignored the disease for 30 years.”

While Solomon’s is a commonly held position in the ME community, a National Institutes of Health spokesperson maintains that “NIH has supported ME/CFS research for some time.”

The agency did bolster research efforts in October 2015, and in May of this year asked healthcare providers, patient advocates, researchers, and other parties to weigh in on future ME/CFS research needs. The NIH is also launching an intramural trial to better understand the disease, though no treatment will be administered during the study. Elsewhere, the FDA held early-stage discussions about drug development back in 2014, and researchers from California recently published a study about ME/CFS’ connection to metabolism.

Still, this year the NIH will devote an estimated $7 million to ME/CFS research—$18 million less than is projected to go toward Lyme disease, a somewhat similar condition, and $91 million less than is projected to go toward multiple sclerosis, a disease Solomon notes is less common than ME/CFS.

As such, the Millions Missing protests focus on rallying for more funding, new clinical trials, and better education for doctors and medical students. Of equal importance, Woodham says, is getting the respect and recognition many ME/CFS patients struggle to find.

“Most people don’t even know what this is,” Woodham says. “We’re trying to force people to confront that this is happening, and it can affect them too. It’s not just us freaks who got unlucky.”

The Boston protest will take place on Tuesday, September 27 at 12 p.m. It will be held at the John F. Kennedy Federal Building, 15 Sudbury St., Boston.