The Devil’s Dividend

Like a dividend from the devil, Long Covid is generating a dubious benefit for an equally devastating disease – ME/CFS.

Nearly everyone knows about Covid, and attention is surging around Long Covid, which is the Covid virus that hangs around indefinitely after the initial infection. Since the symptoms of ME/CFS are virtually identical to Long Covid, the spotlight being cast on it is helping ME/CFS emerge from the shadows of neglect cast upon it by the nation’s medical system.

In the spirit of full disclosure, someone close to me has ME/CFS, and I rarely write about issues in which I have a personal interest. I’m waiving my reservations involving my policy, though, because journalism’s well-known decline handicaps the withering ranks of science writers from giving ME/CFS the attention that its victims deserve and need.

photo by Stefano Pollio

ME/CFS, which stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, has been around for decades or even longer as far as we know. It’s a complex disease that’s often as bad as having AIDs or Multiple Sclerosis. Women account for an estimated eighty percent of MC/CFS victims, and the disease often leaves victims so fatigued that they can’t perform daily tasks most of us take for granted, such as bathing, preparing a meal, shopping for groceries, or simply getting out of bed. ME/CFS can lead to death or often suicide.

There is no known cause or cure for ME/CFS and drugmakers haven’t developed a single drug to deal with its debilitating impact. There’s little funding for research about the disease at the National Institutes of Health (NIH), and many doctors stigmatize patients who show up at their offices seeking treatment for an illness that the medical community writ-large doesn’t understand.

The NIH deserves much of the criticism if gets for dropping the ball on ME/CFS. As the federal health agency charged with supporting biomedical research, the agency is charged with advancing public health by preventing, diagnosing, and treating diseases and illnesses. NIH critics charge it with systematically ignoring ME/CFS because of its close ties to a medical establishment that dismisses diseases that are hard to diagnose and unprofitable to treat. The NIH failed to respond to questions about its research priorities involving ME/CFS.

Actually, the critics have a point; the agency’s underfunding of research on ME/CFS resembles criminal neglect. Maureen Hanson, a MC/CFS researcher at Cornell University, told a December 2023 conference held by Medscape Medical News that the NIH currently spends about $13 million a year on ME/CFS research. compared to $3.2 billion on AIDs. Some three million Americans are barely living with ME/CFS, Hanson says, compared to 1.2 million people living with AIDs. “Most of us are aware of the underfunding of ME/CFS compared to the burden of the illness” Hanson says.

“We need to do something about this.”

Such comparisons are not meant to diminish the tragedy of AIDS but to highlight the disparity in funding for two equally serious diseases: NIH allocates $2,666 in research funds for every person with AIDs compared to about $4 for every victim of ME/CFS. The data may be skewed., too. The World ME Alliance, a non-profit that provides information on ME/CFS, estimates that eighty-four percent of ME/CFS victims are thought to be undiagnosed. Many struggle for years with little help. Yet the NIH cut research funding for ME/CFS from $17 million in fiscal 2021 to $13 million, a fraction of its $49 billion budget.

In recent days, The New York Times ran a story about a small ME/CFS study by the NIH published by the journal Nature Communicator that tested and evaluated the blood, bodies, and brains of seventeen victims of the disease. The study cast doubt on long-held beliefs about ME/CFS by many NIH scientist and  doctors: It showed significant physiological differences in the immune systems, the cardio-respiratory functions, gut microbiomes, and brain activities of the ME/CFS patients compared to a group of twenty-one healthy patients.

“Medical experts said that even though the study was a snapshot of a small number of patients, it was valuable partly because ME/CFS has long been dismissed or misdiagnosed. The findings,” the newspaper reported, “confirm that it’s ‘biological and not psychological,” said Dr. Avindra Nath, the chief nervous system infections at the National Institute of Neurotological Disorders and Stroke, who led the study. 

My reaction to the study is “what took you so long and why such a small sample?” I can understand -- but not support -- the decisions many news organizations made to slash their science writing staffs, severing a vital source of information about public health and the NIH. The media, particularly local journalism, faces an existential crisis and wrongly believe science writers to be a luxury during difficult times.

There are some journalists who fill the gap created by troubled news organizations, such as Ed Yong who wrote a great piece of the disease in the Times. ME/CFS victims also present a vibrant voice on online sites such as X (formerly Twitter) and Reddit. The posts they file make for sad and depressing reading. Victims talk of loss of energy, friendships, jobs, dreams and sometimes even life. Their stories are heartbreaking and highlight the callous disregard of their plight by all but a handful of doctors. Self-educated victims often know more than most physicians about the disease. They plead with -- or berate -- the NIH for the dearth of funding for research that could provide vital data to identify biomarkers for the disease. In many cases, the blogs and posts by ME/CFS victims exemplify better journalism that the science writers they’ve replaced. Yet their voices are ignored by all but a handful of doctors and bureaucrats at the NIH.

The deficit in research funding has an enormous impact on the way ME/CFS is treated, or more accurately is not treated, by the medical community writ large. Physicians around the country simply lack the body of scientific knowledge needed to learn about the disease, to diagnose it and how to ease the suffering of patients until someone develops a cure.  

 “The reason that patients [have been] minimized for so long is because it’s very, very clear that this complex chronic illness doesn’t fit in this neat package of ‘Here’s an X-ray. You’ve got a broken tibia,’” says David Putrino, director of Mount Sinai’s center for complex chronic illness, who has been working with patients with Long Covid since early in the pandemic. “What we are finally proving, though, is that categorically. something is going wrong in the bodies of these people.” As he has gained more experience with the condition, he no longer believes a single medical trigger explains the full range of symptoms. “It doesn’t make sense to look for a single biomarker given what these infection-triggered illnesses are doing to the body,” says Putrino, who has a PhD neuroscience.

At this juncture, there’s been relatively little effort to understand the complex, mysterious chronic illnesses such as ME/CFS and Long Covid. The best theory is that infections or viruses trigger the immune system to attack the central nervous system, creating the kind of debilitating conditions such as extreme fatigue, a signature condition of ME/CFS.

The NIH should be the catalyst to collect massive amounts of highly organized data, information needed to conduct blood tests or other kinds of examinations designed to identify biological markers that could provide important insights into the disease. As it stands, though, diagnosing ME/CFS remains a labor-intensive, time consuming, costly process that prompts many -- but not all -- physicians to shun treating patients with ME/CFS. Instead, patients show up complaining of fatigue, dizziness, intolerance for noise and other symptoms only to be told that they are probably depressed and need psychological help. At least the study reported by The New York Times debunked that diagnosis.   

Even when money becomes available, the funding can be misallocated. The NIH recently unveiled $1.5 billion clinical trial for Long Covid, but the effort drew criticism because it failed to engage the ME/CFS community, a huge group of victims that already had much information about the post infection disorders under scrutiny by NIH-funded scientists.

There’s some faint hope that some legislators may be embracing the cause of Long Covid patients, producing a ripple effect for ME/CFS because of the similarity of the diseases. The New York Times reported that Senator Roger Marshall, a Kansas Republican and Senator Bernie Saunders, the Vermont Democrat, provided just what’s needed to move the NIH to action: publicity about its lackadaisical approach to vital research.

in recent hearings both took the NIH to task for its shortcomings. Referring to the $1.5 billion Congress provided to study Long Covid, Marshall, who has a loved one suffering Long Covid, blasted the federal health research arm for “forming committees’ and praying about” Long Covid rather than developing diagnostics and biomedical treatments.

Hopefully, the hearings led by Senator Saunders may be the catalyst for the NIH to start paying attention to a disease it has diminished for decades. Congress now needs to start listening to more of the victims. Their voices are easily within reach.  

 —James O’Shea

James O’Shea is a longtime Chicago author and journalist who now lives in North Carolina. He is the author of several books and is the former editor of the Los Angeles Times and managing editor of the Chicago Tribune. Follow Jim’s Five W’s Substack here.