Sanders’ long COVID funding bill misses opportunity to aid a similar chronic condition

Sen. Bernie Sanders’ (I-Vt.) recent call for $10 billion in research grants over ten years for long COVID is a worthy initiative, yet we are deeply disappointed the senator is limiting his focus to long COVID. Millions of victims of infection-associated chronic conditions have been waiting decades for the federal government to fund research to improve diagnosis and develop therapies.

A handful of diseases that, like long COVID, are chronic and debilitating, each of which affects the central nervous system and result from infection, have been neglected. All of them existed prior to the COVID-19 outbreak of 2020. The most neglected of these is also the most common and among the most disabling of all: ME/CFS. This is a compromise name for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Formerly known as ME, the severity of the illness was dismissed and victims were ridiculed in the popular press after CDC renamed the disease “chronic fatigue syndrome” in 1988.

We ask that Sanders specifically name ME/CFS in his bill and include a generous budget for ME/CFS research, one commensurate with the burden of the illness. In spite of the fact that ME/CFS is common, afflicting 1.3 percent of the American population and an estimated 67 million people globally, federal funding levels to study it have been shockingly low. Before COVID-19 arrived, the economic cost of ME/CFS was over $36 billion a year. 

One reason for this neglect has been the public’s failure to understand how high their chances of acquiring ME/CFS are and just how serious it actually is. Impaired cognition, a major feature of the disease, results in a devastating loss of mental acuity that interferes with the ability to maintain a semblance of normal life. ME/CFS victims find they cannot exert themselves for the simplest demands of daily life without heightening all their symptoms. Indeed, patients aren’t “tired” — they’re often too weak to stand or walk unaided. Another crippling problem is a lack of blood flow to the brain, a serious circulation defect that can prevent patients from remaining upright without blacking out.

Morbidity studies suggest the physical suffering in ME/CFS is enormous, worse than multiple sclerosis or congestive heart failure, for instance. Recovery is vanishingly rare, leaving patients to struggle for decades.

Any discussion of the toll of ME/CFS would be remiss without mentioning the surfeit of suicide observed in this population. Final letters from patients typically invoke the specter of permanent suffering without medical care.

A tantalizing piece of the ME/CFS puzzle has been its history of discrete outbreaks all over the world during the last century. One of the earliest occurred in Los Angeles in 1934. Two-hundred out of 1,500 members of the Los Angeles County General Hospital staff fell ill, most of them permanently. Outbreaks in Iceland, New Zealand, the UK, and the U.S. followed. A combination of indifference, dismissal of patients’ concerns and inadequate technology resulted in a failure to identify the responsible viruses. Ultimately, the medical establishment largely ignored the surge in ME/CFS in the mid-1980s — effectively disappearing an epidemic.

Long COVID entered the picture after the COVID-19 pandemic began in 2020. Doctors and patients themselves began comparing the symptom constellation to that of ME/CFS and noting striking similarities. As a result, some scientists, medical professionals and long COVID patients have suggested that ME/CFS is a “subset” of long COVID or, more confusingly, that some cases of long COVID actually are ME/CFS.

The fact is, it’s unclear how similar these maladies are at the biochemical level. We need to find out. SARS-COV-2 has been found to persist in the body long after the acute infection. If persistent virus causes most cases of long COVID, eradicating it from patients has little chance of helping ME/CFS patients. SARS-COV-2 could not possibly have caused any of the multi-millions of cases of ME/CFS prior to 2020.

As Monica Bertagnolli, MD, the new NIH director said recently, “…I don't think you can ever assume that one virus is going to act like another. Certainly, every virus that we know of seems to have a different effect in the body long term.”

Nevertheless, there are some intriguing overlaps in symptoms, suggesting that physiological features of the disruptions occurring in these diseases may be shared. New drugs that can improve symptoms such as ones affecting brain function, muscle function or circulation, for example — might benefit both types of patients. But for any underlying causes that differ between ME/CFS and long COVID, disease-specific remedies will be necessary. 

Despite decades since the ME/CFS outbreaks, no FDA-approved drugs are available for treatment. The NIH, which currently has an annual budget of $48 billion, has provided ME/CFS researchers with between $5 to 17 million in each of the last ten years. These sums are so puny they’re considered “budget dust” by government officials.

Advocates for earmarked funds for ME/CFS have been stymied in the past by NIH’s claims going back to the 1980s that scientists aren’t interested in working on ME/CFS. But the long COVID field burgeoned with an enormous influx of researchers when public and private funds became available. The ME/CFS field will also blossom when adequate funds are made available.

Congress has the ability to set medical agendas through recognition of serious public health problems. As witnessed during the AIDS epidemic, federal health agencies were awarded billions of dollars for AIDS research.

Sadly, when $10 billion is on the table for long COVID research, another prevalent infection-associated illness — ME/CFS — is missing in Sanders’ proposed bill. We think that’s a serious mistake since, by law, if ME/CFS is not directly specified by name in the bill, NIH will have a mandate to fund long COVID to the exclusion of ME/CFS, a viral illness that arrived decades before SARS-COV-2. Medical ethics and economic realities dictate that the millions of unwilling members of the ME/CFS community can’t be put on a shelf and abandoned for yet another decade.

We appeal to Sanders to include in his bill substantial funding for what we must now call “ pre-pandemic ME/CFS” and specify a budget commensurate with this disease’s toll. Hundreds of millions more dollars are needed to restore health to the millions who are missing their previously productive lives. It’s long past time for Congress to address a major chronic illness that does not go away on its own, causes unspeakable suffering and threatens everyone.

Maureen Hanson is a scientist who directs an ME/CFS research center and Hillary Johnson is a journalist who has chronicled the history of the disease since the 1980s.