The medical community is changing its mind on chronic fatigue syndrome. Why aren’t insurers?

Brian Vastag was enjoying a life that many people would envy. At age 41, he had achieved professional success as an award-winning health and science reporter for the Washington Post, covering important stories from around the world. That came to an end in July 2012, when he found himself afflicted by a mysterious and poorly understood illness that ended up sweeping away almost every vestige of his vigorous and productive life. To add insult to injury, he also had to endure a four-year battle with his insurance company to cover his disability claim for the condition he eventually learned was chronic fatigue syndrome.

Like many Americans who experience serious health setbacks, Vastag thought he could rely for help on the disability policy he got through his employer. But because there is no widely accepted diagnostic test for chronic fatigue syndrome (also called myalgic encephalomyelitis, often abbreviated as ME/CFS), many of the 1 million or more Americans who have it are ridiculed and dismissed as delusional, hysterical, or suffering from some psychiatric disorder.

Vastag’s symptoms initially resembled those of a nasty virus: fever, muscle aches, overwhelming weakness, fatigue, and dizziness that made it difficult to walk or stand. He visited specialists, who ran test after test. They found numerous abnormalities, but none could offer him a satisfactory diagnosis, much less an effective cure. He was finally referred to two experts who confirmed he had ME/CFS.

By then, Vastag’s condition was grave. In an article he wrote for the Post, he described how his brain had become so sluggish it felt like “someone has poured molasses into my ear, gumming up all trillion synapses.” His vision was blurred, he suffered constant headaches, he could not walk more than a block — and those were the good days. On the bad days, he couldn’t get out of bed. Even moderate physical activity would leave him incapacitated for days.

In January 2014, 18 months after the onset of ME/CFS, Vastag stopped working and applied for disability. Prudential Insurance Company, which handled the Washington Post’s disability program, denied his claims for both short-term and long-term benefits. Despite the raft of test results that had been included in his claim and the clear evidence of his incapacity to walk around the block, let alone hold a full-time job, Prudential refused to believe that Vastag could be so severely disabled, no matter what his doctors and other national experts on ME/CFS stated.

With no alternative, Vastag retained two attorneys who specialize in disability issues — Barbara Comerford and Sara Kaplan-Khodorovsky — and sued Prudential. The lawsuit challenged the denial of benefits under the Employee Retirement Income Security Act of 1974, a federal law that sets minimum standards for most voluntarily established pension and health plans in private industry.

In assessing Vastag’s claim, Prudential relied on many of the classic stereotypes about ME/CFS. According to court documents, the company required an appraisal of his “psychosocial history and factors potentially related to stressors, academic history [and] patterns of reinforcement” as well as to “potential psychiatric difficulties, such as somatoform tendencies, depression, or anxiety.” The company ultimately rejected his disability claim, maintaining that “the medical data does not indicate any impairment” that would limit Vastag’s ability to perform his job — a point starkly contradicted by his extensive medical records.

Prudential essentially accused Vastag of malingering, declaring that he “stopped working, allegedly due to chronic fatigue syndrome,” and maintained that medical evidence did not support his claim. Most troubling, Prudential revealed that it had attempted surveillance of Vastag but had not managed to observe him in person. Instead, the company conducted “an internet investigation” aimed at disproving his claim.

We asked Prudential several times to talk with us about Vastag’s case, but got no response to our questions.

Surveillance can be a valid way of exposing false claims in disability or personal injury cases. But the use of surveillance in Vastag’s case — especially given the extensive evidence submitted by national ME/CFS experts — suggests an alarming level of denial about the severity of the illness. There was no evident reason to suspect Vastag of deception other than the diagnosis of ME/CFS.

Prudential’s investigation turned up only that Vastag had moved from Washington to Hawaii, which the company falsely characterized as a vacation, and that he had published two short articles in 2014.

U.S. District Judge Katharine Hayden saw through Prudential’s smokescreen. Explaining in her decision that “the exact cause of CFS is unknown, and no laboratory test can directly diagnose it,” she noted that “the objective medical evidence … indicates that even low-level physical activity” required more energy than Vastag could generate. She rejected the opinions of Prudential’s medical reviewers, finding that none of them “demonstrated any expertise in CFS.” Hayden concluded that Prudential had wrongly denied Vastag’s benefits due to its “significant failure to understand the current state of medical knowledge about CFS and its devastating impact.”

In forceful terms, the judge rejected Prudential’s arguments and ordered the company to pay up.

A few other courts have ruled for ME/CFS claimants, but none with the definitive clarity of Hayden’s opinion. Even so, Vastag’s victory is not yet cause for unbridled celebration. Because disability cases are decided on their unique facts, this decision does not set a legal precedent, and there is no assurance that other judges will reach similar conclusions in future cases. Moreover, Vastag had access to resources — including information, knowledgeable medical care, and outstanding legal representation — that are available to few people with ME/CFS.

The cause of ME/CFS remains unknown. For decades, the medical establishment largely dismissed it as a psychological disorder and attributed the symptoms to deconditioning. But attitudes have shifted in recent years. According to a 2015 report from the Institute of Medicine (now the National Academy of Medicine), it is an organic illness, often triggered by a viral infection, that involves immunological and neurological dysfunctions. People with it experience paralyzing exhaustion, muscle pain, unrefreshing sleep, cognitive problems, and other symptoms. Many are homebound, even bedbound. The cardinal sign is suffering severe relapses after even minimal amounts of activity — a symptom called post-exertional malaise. In the last few years, the National Institutes of Health has increased funding for biomedical research into the illness.

The medical establishment may be turning the corner in its recognition of ME/CFS as a serious illness, but the insurance industry remains largely mired in the past. Vastag’s win against Prudential is a hopeful sign that individuals with ME/CFS, many of whom have been turned down for disability benefits under similar arguments, might finally be gaining the respect, sympathy, and support they have always deserved

Steven Lubet, J.D., is professor of law and director of the Fred Bartlit Center for Trial Advocacy at Northwestern University’s Pritzker School of Law. He has been living with chronic fatigue syndrome since 2006. David Tuller, Dr. P.H., is a senior fellow in public health and journalism at the Center for Global Public Health at the University of California, Berkeley. Members of the ME/CFS patient community generously donated to a crowdfunding campaign in support of Tuller’s position at Berkeley.