Editor's note: This letter to the director of the National Institutes of Health, first appeared on lastwordonnothing.com.
Three years ago, a sudden fever struck me on a blue-sky Wisconsin morning. I've been sick ever since. On my third “illiversary,” I presented an opportunity to Francis Collins, the head of the NIH:
Dear Dr. Collins,
You might recall the last time we spoke. It was January 2013, and I was working as a science reporter at The Washington Post. Your people arranged an early call for you to announce that the NIH had decided to retire most of its research chimpanzees. We spoke for about 20 minutes, and I typed up a 600-word story. It wasn't very good.
I was working from home that gray day because I had little choice. I was mostly bedbound then, seven months after a sudden fever had knocked me prostrate. My legs were so weak that climbing the stairs to my home office required pulling myself up the railing hand over hand. My brain was so sluggish I asked few questions of you. The ones I managed to croak out were poor, no doubt.
Too sick to work, I did anyway. I loved my job at The Post -- not an easy gig to come by -- and I was desperate to keep it. I had been following the research-chimp story for a while, and I liked that the NIH had chosen me to break your news.
I've long appreciated how the NIH helps the world. My career began there in 1998, when Paul van Nevel hired me for a science writing fellowship at the National Cancer Institute. I count your communications director John Burklow among my mentors, and I was honored to write Paul's obituary. That first boost of professional success propelled me to an exciting career.
Lately, though, my love for your august institution has been strained. You see, I've been felled by the most forlorn of orphan illnesses. The most accurate name for it is myalgic encephalomyelitis, which means "painful inflammation of the brain and spine." (Yes, it is painful, and, yes, there's strong evidence of neuroinflammation.) At the NIH and elsewhere, it is instead called chronic fatigue syndrome. That's a terribly vague and dismissive moniker for so serious an illness, and one that needs to be retired. Fatigue is not the primary or most troubling symptom for most people with ME.
In the past, you've shown a soft spot for certain orphan diseases. Well, the history of ME is akin to having locked an entire orphanage in a cellar and bulldozing the house.
On the list of illnesses the NIH studies, ME (listed as “ME/CFS”) is near the bottom in funding, ranked 231 out of 244. It received $5 million in 2014, less than hay fever, which cripples no one. That’s not enough money to equip a laboratory and run it for a year. This abject neglect -- or sustained prejudice, or maybe both -- stretches back a full three decades at the NIH (For a detailed history of how this sad state came to be, read Hillary Johnson’s deeply-reported book "Osler’s Web.")
No one has a good count of ME patients in the United States -- the Centers for Disease Control and Prevention misspent funds earmarked for this purpose -- but there’s plausible evidence that several hundred thousand people are disabled by it. That’s comparable to the burden of multiple sclerosis -- the illness ME most closely resembles. The NIH funds $110 million in MS research each year, and a sustained government investment has been crucial in the development of a dozen Food and Drug Administration-approved MS drugs. ME patients have no approved treatments. Diagnosis can be delayed for years, and misdiagnosis is common. (I was initially diagnosed with West Nile virus infection, a mistake due to a faulty blood test.)
But ME is finally emerging from the basement. Brand-name institutions and big-time researchers now recognize the huge burden ME places on society: tens of billions in medical expenses, lost productivity and missing tax revenue each year. Columbia University’s Ian Lipkin is searching for infectious triggers, and has reported severe immune problems in patients. Columbia received $150 million in NIH grants in 2015; Lipkin’s operation gets a big chunk of that not for ME/CFS research but for finding viruses such as those that cause SARS and MERS. But when the famous virus hunter applied for a trifling $1 million for ME research, the NIH turned him down, twice. So spurned, Lipkin and colleague Mady Hornig recently resorted to eating habanero peppers to raise money as part of a social media ME Chili Challenge inspired by the hugely successful ALS Ice Bucket Challenge.
Jarred Younger, at the University of Alabama at Birmingham, has a list of off-the-shelf drugs and supplements that can reduce neuroinflammation. They urgently need to be tested in patients.
In Norway, a Phase 3 clinical trial of the cancer drug rituximab for ME holds great promise. In early trials, nearly two-thirds of patients improved after repeated doses of rituximab, and a quarter went into full remission. Such promising results, if reported in cancer patients, would be trumpeted as a breakthrough. Additional studies to sort out which patients might benefit from this drug are urgently needed; the NIH Clinical Center would be a fantastic home for such trials. It's unseemly to let a tiny Scandinavian country overtake the enormous U.S. of A. in this -- or any -- realm of medical research.
At Stanford University, prominent geneticist Ron Davis is searching for genetic risk factors. His investment is deeply personal, as his adult son -- formerly a world-traveling photographer -- is severely ill with ME and can no longer walk or talk.
When you peruse the recent ME literature, you’ll see a mix of young researchers and experienced lab leaders producing a string of insights into how the illness damages the immune system and the brain. Mutations in the gene MTHFR have been identified by the Open Medicine Foundation as a risk factor. Diagnostic biomarkers await validation. Promising treatments need to be tested in patients. And all of this has happened with little support from the NIH.
Patient advocates have called for $250 million in ME research funding, a figure commensurate with the burden of disease. This is a huge ask, and in all likelihood politically infeasible, so let me make a smaller one: A new NIH program funded with as little as $10 million to $20 million per year would be absolutely transformative for the field -- and for patients.
Such a program would affirm the NIH's commitment to understanding the illness. It would draw more young researchers to studying ME, and it would encourage further private funding. Such a commitment would also give patients -- many housebound or bedbound for decades -- hope that they'll be healthy again. I challenge you to find another illness where such a small investment could make such a huge difference.
You now have broad support from the medical community to make this happen. Earlier this year, the Institute of Medicine made a strong call for a robust ME research program. And just last month, an NIH-appointed panel urgently made the same recommendation. With the bipartisan 21st Century Cures Act poised to pass Congress -- giving NIH an extra $8.75 billion over five years -- you could do so without pulling money from existing programs. At the same time, you could help things along by moving responsibility for ME from its long-term parking spot at the Office of Research on Women's Health to one of the institutes with a substantial research budget, such as the National Institute of Neurological Disorders and Stroke. ME is clearly not a "women's disease."
A year before I fell ill, I backpacked Rocky Mountain National Park. My legs carried me up to the Continental Divide, where I sat on the edge of a precipice marveling at the peaks around me. At nearly 13,000 feet above sea level, the thin air addled my thinking -- a feeling I now live with every moment, as if someone has poured molasses into my ear, gumming up all trillion synapses. It's a terrible way to go through life, especially so for someone who not so long ago made a good living with his brain.
Here at my home in Hawaii, there's a smaller mountain behind my yard. It's called Sleeping Giant, and the giant's forehead juts less than 500 feet above my patio. A well-trod trail carries people up there for sweeping views down the volcanic slope and across the endless Pacific. Oh, how I would love to drink in that view. But I may as well be gazing up at K2; a summit attempt would be supremely unwise: A sophisticated exercise test found that I suffer from severe metabolic, cardiac and pulmonary dysfunction. Exercise for ME patients is more damaging than sugar is to a person with diabetes.
At 43, my productive life may well be over. There's a good chance I have hiked my last trail. The nation's coffers lose some $25,000 in tax revenue each year I remain disabled, and I will soon know if Social Security Disability Insurance will start coming my way.
I don't enjoy being a drain on society, and neither do any of the other ME patients I know. And with the ever-growing research interest in ME, I have hope that someday I'll be able to stand for more than a few minutes, walk for more than a block or two, maybe even resume my career. (It took me four days, with frequent breaks, to write this letter -- that's a bit slow for newspaper work.)
The causes of ME will eventually be discovered, treatments will be found and patients will enjoy long-term remissions. As the leader of our nation's medical research enterprise, you have a decision to make: Do you want the NIH to be part of these solutions, or will the nation's medical research agency continue to be part of the problem? At the very least, you could ensure that Dr. Lipkin doesn't have to scorch his intestinal tract again just to drum up a few research dollars.
A day after this post initially appeared, Collins replied via e-mail but asked that his response be kept private. -- BV
For more health news, you can sign up for our weekly newsletter here.