Ignored illness may get needed attention
Long COVID research could help fatigue syndrome
Whitney Dafoe of Palo Alto hasn’t spoken in nine years. He hasn’t eaten a bite of food or sipped water in nearly as long. But at 39, Dafoe writes eloquently about the debilitating and largely ignored illness he shares with millions.
“I like to compare the state I’m in now to staying up for two nights in a row while fasting, then getting drunk,” he wrote on the blog he uses to tell the world about living with his nearly unpronounceable disease: myalgic encephalomyelitis/chronic fatigue syndrome, or ME/ CFS, for short. “(F)atigue is much too mild a word.”
Dafoe was a globe-hopping photographer in 2004 when, at 21, he developed a persistent light-headedness after exercise. In India five years later, he caught a “strange cold,” then battled pneumonia in Kolkata. Dafoe was diagnosed in 2012 with ME/CFS — and considers each prior illness a likely suspect in causing it.
The nonprofit National Academy of Medicine estimates that 836,000 to 2.5 million people in the U.S. alone have the disease — most of them undiagnosed.
It’s a hidden illness because sufferers typically vanish from sight. Like Dafoe, they often quit work and stay home. They are regularly
rebuffed by doctors who never studied the disease, can’t cure it and sometimes even repeat the debunked view that it’s all in their heads. Yet their absence is deeply felt: ME/CFS costs the U.S. economy $17 billion to $24 billion a year in medical bills and lost income, estimates the Centers for Disease Control and Prevention.
Now, ME/CFS is gaining new attention because of the sudden notoriety of a related condition: long COVID. The National Institutes of Health is spending more than $1 billion to uncover the mysteries of chronic, postCOVID symptoms reported by millions of Americans.
“We are witnessing a postpandemic chronic fatigue syndrome event,” Dr. David Kaufman of the Center for Complex Diseases in Mountain View told New York health officials in 2020.
Up to one-fifth of coronavirus infections result in long COVID, the CDC says. And roughly 10% of people sickened by a variety of other infections — mainly viruses such as Epstein-Barr or herpesvirus 6 — develop ME/ CFS, says the nonprofit #MEAction, which estimates that 1 in 4 of those patients is homebound or bedridden, like Dafoe.
Both conditions — possibly autoimmune disorders — produce chronic, sometimes crippling, fatigue: people sapped of energy, including brain power, who often experience unrefreshing sleep.
“They’re the same,” said Ron Davis, a professor of biochemistry and genetics at Stanford University who was the first person to clone DNA. Davis won a Gruber Prize in genetics in 2011, then used the $500,000 award to establish the ME/CFS Collaborative Research Center at Stanford.
He is also Whitney Dafoe’s father.
“Every time I walk into my son’s room and see him lying there in absolute misery for 10 years, I get angry,” Davis said, referring to the National Institutes of Health’s seeming lack of urgency around ME/CFS. “It’s like witnessing a car accident and seeing someone bleeding and saying: ‘Let’s think about it.’ There are so many patients in absolute misery.” In 2021, he and author Tracie White published “The Puzzle Solver,” a memoir about Davis’ efforts to help his son.
Davis’ frustration is shared by other researchers, and his own efforts are a case in point. He has applied for 24 grants to study ME/CFS and received just two of them.
The roadblock appears to be funding. Even as the NIH plans to distribute $1.15 billion over four years for long COVID research through its RECOVER initiative — $287.5 million a year — the agency allocated just $5.6 million last year to ME/CFS researchers like Davis.
The NIH also gave $7 million to ME/CFS Collaborative Research Centers — at Columbia and Cornell universities and Jackson Laboratories in Connecticut — and to the center that coordinates research at the three sites. It kept $4 million for ME/CFS research within the NIH.
ME/CFS’ numerous symptoms can include brain fog; sensitivity to light, sounds and smells; and joint pain. But a defining characteristic is deep, chronic exhaustion lasting at least six months.
Researchers don’t know the cause. But they are pursuing such possibilities as a genetic link, immune system errors like an overproduction of cytokine proteins and problems with the way cells access energy, says the CDC.
Davis suspects the body’s chemical energy system — on which every cell depends — goes awry for ME/CFS patients. Normally, when people get sick, the body’s “innate immune” response diverts energy to fight the infection, leaving the person feeling ill for a short while.
But with ME/CFS, something else appears to happen. “The innate immune system is supposed to last for a few days, then shut off,” said Davis. With chronic fatigue, he suggests, it never shuts off. “So you’re stuck in this state. Muscles are hard to move around, and your brain doesn’t work so well. The heart still beats, and the liver, kidneys and gut function. But not as well.”
Any activity, even thinking, can trigger symptoms and cause what long COVID and ME/CFS sufferers alike call a “crash.” Experts call it “post-exertional malaise.” Since 2013, five studies have found post-exercise pathogens in the blood of ME/CFS patients, indicating disease.
Davis says there is no time to lose for people with ME/CFS — and for his family. So he posts new data he gathers as soon as possible on the Open Medicine Foundation site. “We want to work faster,” he said, and he has encouraged the NIH to do the same.
Vicky Whittemore, an NIH program director, said the agency is now focusing on long COVID because of the opportunity to track patients made ill by one specific illness: COVID-19. By contrast, many people don’t know what caused their ME/ CFS.
Activists argue that collaboration would speed progress against both diseases, and they blame the NIH for snubbing ME/CFS researchers.
‘We think it’s absolutely absurd,” said Jaime Seltzer, director of scientific and medical outreach at the nonprofit #MEAction.
Adds Adriane Tillman, who does the group’s outreach, “They’ll be reinventing the wheel.”
Both women have ME/CFS, though far milder than Dafoe’s version. Tillman recently took a short hike from San Francisco’s Lands End to the Golden Gate Bridge with her young children. “It took me two days to recover,” she said.
Seltzer, in her 40s, was 29 when a doctor diagnosed ME/ CFS, which had also afflicted her mother. Seltzer said she’d been riding her exercise bike for 10 minutes when she suddenly grew cold. “I started shaking. I had trouble thinking and walking . ... I made it to my bed and woke up 18 hours later and couldn’t move.” Forced to quit teaching, she now minimizes her exertion, as do others.
That may be why just a few dozen people showed up to protest at the White House on Sept. 19, the day after President Biden declared the pandemic over. Hundreds more viewed the event from home, tweeting furiously.
“Shame on Biden!” activist Terri Wilder of Minnesota yelled through a megaphone as #MEAction live-streamed the action. “Tell him your story of living with long COVID! Of living with ME! That people are still getting disabled!”
The activists, some in wheelchairs, demanded that the president help people sidelined by ME/CFS. “Many of us spend days, weeks and years in bed, in dark rooms, unable to participate in life!” another woman shouted. “This is an emergency!”
Yet many doctors still base their understanding of the disease on a three-decade-old misconception.
Back in 1989, a group of British researchers and health experts announced that “chronic fatigue syndrome” occurred when sick people got out of shape, failed to exercise as they improved, then worsened in their “deconditioned” state. Their solution: exercise and therapy.
Doctors embraced the idea because it was not only simple but inexpensive.
In 2011, the group reinforced the claim with a study of 641 people, published in the Lancet, claiming to show that exercise and therapy relieved ME/CFS. Known as the PACE study, its findings became the global standard of care. Yet other scientists questioned its validity and demanded that the journal release the study’s raw data.
It took a British court to make that happen, and in 2018 a new analysis revealed that exercise and therapy were not at all the cure. By then, the National Academy of Medicine had reviewed thousands of other studies and published “Redefining an Illness” in 2015, concluding that ME/CFS was in fact a disease. In 2017, the CDC stopped recommending exercise, which has been shown to make matters worse for many patients.
Yet patients felt the damage was done. They, and their disease, had been sidelined for 30 years.
Then came long COVID, also frequently characterized by chronic fatigue and post-exertional malaise.
Some of the research now being done on long COVID may help ME/CFS sufferers. In August, for instance, a privately funded Massachusetts biotech company, Axcella, reported encouraging results from a Phase 2 clinical trial of 41 COVID-19 survivors battling chronic fatigue. The company said 21 people who took AXA1125, a combination of six amino acids, significantly improved their scores on physical and mental fatigue evaluations after four weeks, compared with 20 people on a placebo who did not.
“We want to restore normal biology in these individuals,” Margaret Koziel, Axcella’s chief medical officer, said, noting that the amino acids restore energy to cells by targeting inflammation, suppressed mitochondrial metabolism and other malfunctions.
Chief Executive Bill Hinshaw said the study has “potential parallels” for ME/CFS.
To Whitney Dafoe, having to wait for long COVID breakthroughs to sift down to his bedroom and that of countless others with ME/CFS is wrongheaded. He believes the NIH should prioritize ME/CFS.
“This is unjust, prejudiced and quite frankly cruel,” he said by email. “There is no ethical explanation.”
His mother, Janet Dafoe, gave up her psychology practice to care for her son, whose symptoms baffled her at first.
“He’d say, ‘Don’t talk so much. I can’t listen.’ I’d say, ‘What are you talking about? That doesn’t take energy.’ But I’ve learned so much. If you don’t have enough ATP — the molecules that make energy — you can’t process looking at things. Or having someone in the room.”
In 2020, two drugs helped Dafoe feel well enough to be around people: Ativan, a sedative, and Abilify, which affects neurotransmitters. He can’t be on them all the time, but they have allowed him to blog. And in 2021, Dafoe revealed extraordinary details of living with severe ME/CFS in an article he published in the open-access journal MDPI.
“I haven’t been able to tolerate the sound of another person’s voice without being sedated in 7 years,” he wrote. “All humanity has been taken from me by ME/ CFS. I live only to continue living.”
Years ago, in one of his lowest moments, Dafoe had a revelation: “I realized that my story of living with such a severe chronic illness for which there was no cure was the exact kind of story I would love to photograph if I was healthy.”
So when he was able, Dafoe began photographing himself. This summer, the European Photo Awards honored his work with its highest Gold award.
The title of his series speaks to the urgency he and many others are trying to convey. Dafoe calls his startling, singular images “The Living Death.”