Does “Chronic Fatigue Syndrome,” or CFS, really exist? For years, much of the medical, establishment has dismissed the illness as a case of the “Hollywood Blahs.” Its victims were viewed as affluent women with too much time and money on their hands. Trapped in their ennui, they’d invented an affliction that justified laying around the house in their bathrobe and slippers all day.
In one episode of the popular sitcom House, the lead character, a cynical doctor, encounters a patient with CFS. Exasperated, he offers her a green pill. In fact, it’s just a breath mint he’d purchased from the hospital vending machine. But sure enough, it “works.”
These days, most doctors do take CFS a bit more seriously. In fact, it’s classified as a genuine ailment. But there is still no FDA-approved treatment and no agreement on the disease’s etiology. Some medical experts believe that CFS derives from a disruption of the immune system, and many blame Epstein-Barr virus, which also causes mononucleosis or viral encephalitis.
But a healthy minority of patients never seems to recover no matter what treatment they receive. Folk remedies have included kombucha tea, licorice and amino acids from the stomachs of cows – from Argentina. Some sufferers have gobbled amphetamines or taken shots of hydrogen peroxide. For others, it’s been vitamin supplements, anti-viral pills, and blood plasma infusions. Some of these remedies may be placebos at best.
In the late 1980s, there was talk of a real breakthrough on CFS. A doctor, Daniel Petersen, said he had developed a drug — dubbed Ampligen — that was virtually foolproof as a treatment. Petersen began prescribing Ampligen at his small clinic in Incline, Nevada, an idyllic village near the tourist resort of Lake Tahoe. Anecdotal accounts of its healing effects began pouring in. People who’d been unable to walk and needed a wheelchair to get around began swearing by Ampligen. An online community devoted to publicizing the drug’s success stories began mushrooming overnight.
Patients that receive treatments need to be close to the clinic because the drug wears off. Petersen typically administers twice-weekly injections to about 50 regular patients and another 800 periodic visitors, many of whom moved to Incline to settle and receive treatment. While some doctors have exaggerated the number of people that have been weaned off of Ampligen and resumed a normal life, some patients claim to have forced their CFS into semi-permanent remission.
Beginning in the 1990s, Petersen attempted to win FDA approval for the drug. Success would have given him full FDA blessing – and license to produce and sell the drug commercially. In 2012, the FDA found faults in Petersen’s methodology and worried that the evidence to support Ampligen’s effectiveness was still wanting. In the end, he made it through the first two stages of clinical trials but failed the third.
In fact, even some supporters of Ampligen have noted some disparities in the drug’s effectiveness. About 70% of CFS sufferers are thought to acquire the illness via a virus, but the cause is unknown in the remaining 30% of the cases. Moreover, some sufferers take years to develop symptoms, which are variable. Others suffer acutely from the start.
One doctor at a CFS clinic in North Carolina found that Ampligen generated a “very favorable response” in only around forty percent of his patients. Moreover, the effect varied depending on their white blood cell count, the presence of other viruses in their system, and the length of their illness, among other factors. Clearly, a better understanding of how Ampligen alleviates CFS symptoms across different patient sub-groups is still needed.
And yet, there’s little doubt that the Ampligen, at least for some sufferers, “works.” After the FDA withdrew its support, many of Petersen’s most loyal patients relapsed when denied regular access to the drug. One man even went on an 11-day hunger strike to try to force doctors to treat him.
Still, there is no scientific and medical consensus about CFS – whether it is largely physical or psychological or both – and no agreed-upon test for its presence. Many doctors refuse to use the term CFS which they consider imprecise and even pejorative. Some have taken to calling the ailment “systemic exertion intolerance disease (SEID) or myalgic encephalomyelitis (ME). There’s even a new acronym: ME/CFS.
Of course, for the estimated 800,000 to 2.5 million CFS sufferers nationwide, fancier labeling offers small comfort. And the stigma associated with the ailment persists. In recent years, despite citizen pressure, there’s been a decided lack of interest from the federal government in pursuing more serious research on CFS.
Between 2015 and 2018, the NIH allocated less than eleven million dollars annually to studying CFS. That’s less than NIH funding on tuberous sclerosis, a rare genetic disorder that affects fewer than forty thousand Americans, and osteogenesis imperfecta, a brittle bone disease, which affects some twenty thousand people.
Critics say the funding shortfall reflects bureaucratic resistance, even hostility. After so many years, public health officials are reluctant to admit that modern medicine can’t explain a complicated condition like CFS, and see no obvious way forward. They’d rather focus on less prevalent conditions amenable to treatment with a simple pill. Or maybe it’s just chronic fatigue.
For an in-depth account of one person’s experience with CFS and Ampligen, see the article by Mike Marianai, “A Town for People with Chronic Fatigue” in the September 3, 2019 issue of New Yorker magazine.