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.
“Doctors” really are DUMB,
CFIDS is post-sepsis syndrome. See more at ActionLyme.org
Another valuable resource is the recent documentary film “Unrest”, which does a good job of humanizing the disease for those not familiar with it.
https://www.unrest.film/
We don’t recommend that film. Most of the information in ‘Unrest’ is wrong.
What information in Unrest is incorrect?
There never should be doubt this is a real illness. The most prominent U.S. neurologist of the 19th century, S. Weir-Mitchell, wrote detailed case reports during the Civil War which we would recognize today as CFS. He was an expert at detecting malingering, and he did not believe these soldiers were malingerers. He noted that this was often associated with high stress and exertion, such as forced marches.
Anyone with CFS/ME should be tested and treated for Lyme. If patient experiences a herxheimer reaction from doxycycline, you know there are spirochetes.
The SAME thing happened to me at Novartis years ago. Lyme burned out all my bone marrow (chronic Lyme is a pseudo lymphoma that damages B cells). My disability was wrongfully terminated by Met Life, despite my Drs stating was too sick to return to work.
Pharma/life science companies state all day how much they care about patients. Employee patients, not so much.
If you are a patient and need HR support, information on Lyme or a referral to someone who can help you manage your disability provider, feel free to reply to this comment with an anonymous way to contact you. I can help and refer you to resources.
If you have Lyme and want to understand the fraud, go to Truthcures.org. This is a science based organization committed to helping patients and exposing the fraud around Lyme or other connected diseases.
Chronic Lynne disease is not real. I’m not saying you are not sick. I’m saying you bed to find what is actually wrong with you instead of believing in this fictitious nonsense
The 2015 National Academy of Medicine report you link to includes a PDF with new diagnostic criteria and a new, more accurate name for this malady, Systemic Exertion Intolerance Disease, or SEID. I’m disappointed to see this and other recent articles fail to use this updated nomenclature–I think it will help convey the seriousness of this disease.
“To replace ME/CFS, the committee proposes the name systemic exertion intolerance disease, or SEID. This name captures a central characteristic of the disease: the fact that exertion of any sort—physical, cognitive, or emotional—can adversely affect patients in many organ systems and in many aspects of their lives. The committee believes systemic exertion intolerance disease appropriately captures the complexity and severity of the illness.”
http://nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_ReportBrief.pdf
I am not sure that SEID is a “more accurate” term for this illness — or for this class of illnesses — since it merely substitutes a description of a symptom for another description of a symptom. In both cases, by focusing on patient understanding of the disease, attention is directed away from the underlying pathology or pathologies.
That is not what the IOM proposes. It’s not a name change. The IOM propses to abandon the CFS diagnosis altogether and introduce a different, clinical diagnosis SEID instead. This is a different target group, SEID is not CFS. Different symptoms, no ‘this illness’, no ‘class of illnesses’.
There is no proposal to abandon the disease diagnosis of ME, no matter how often the report is misquoted.
The paper is just recommending that the name be changed. It uses the old names throughout.
Casey, no, it doesn’t. First of all, ‘ME/CFS’ is not ‘the old name’. It doesn’t exist as a medical entity, it is a construct made up by civil servants. The report uses it because that’s what they were ordered to do by the government. They explain that in the beginning and stress that ME and CFS are not the same.
Then when they recommend introducing SEID and what it should replace, they mention CFS only and go to great length to explain that it is NOT a name change, but a new diagnosis, and why. It’s really not possible to miss that unless you deliberately read only what you want to read.
Scuttlebutt suggests that D-Ribose may help alleviate symptoms of CFS. FWIW…
This is an important article. I only wish the NIH (National Institutes of Health) would dedicate more research money to this disease. Historically, over the past 30 years, NIH has only dedicated about 6 million a year to ME/CFS. Last year they increased it to a whopping 14 million. This is still a tiny amount. Nowhere near enough to impact the lives of the 1 to 2.5 million Americans disabled by this disease.
Rivka you are correct. Fortunately the NIH has finally given cfs and Dr. Davis some more research money. We fight on.
Huge THANKS is due to Mr. Vastag, who used his connections to get IOM-NIH to conduct the first honest evaluative study of CFS/ME to reach the level of scientific acceptance. And THANK you to Dr. Tuller who truly knew the disease as few other researchers did. The American medial scene has been largely dismissive and blaming. The UK PACE ‘study’ was not about CFS/ME but about how 1) to make psychiatrists and physical therapists rich, and 2) how to keep gravely disabled persons OFF assistance.
I was Dx in 1991 after years of strange and worsening symptoms that all doctors dismissed as psycho-somatic. Then I got a dual Dx of CFS/ME and Fibromyalgia. Could not get disability until a sympathetic Soc Sec psychiatrist said I was PTSD. She explained that with a CFS/Fibro Dx I would be long dead before my claim would be seriously considered. I got Soc Sec Disability (which was tiny) AND SSI (because I was ‘mental’ and low income) and that provided me the amount I could survive on along with Medicare/MediCal, etc. It is my hope that the 2015 IOM report will shrink the time to get disability and stop the hurtful accusations and labels.
David Tuller is a journalist. He got most of his information from patients. We, the patients (ME and CFS together), cracked the PACE study when it came out, but nobody paid any attention to our findings or even gave us a floor.
So we are thankful to mr. Tuller for writing about the flaws in PACE, but that doesn’t make him a medical expert nor does he claim to be one.
It is not just conditions like chronic fatigue syndrome, it is any condition they can deny. The “Psycho-social” requirement, introduces a grey area of postponement and denial. The Medical Industry has fully embraced the use of a Psychiatric problem, in order to postpone and deny care. it introduces uncertainty by design. They re-framed the distress, depression, and economic uncertainty that occurs with medical conditions, as psychological. The Fact that the initial health condition caused the mental distress, is not relevant. It is one more way they can demean and discredit sick people, and ensure profits fr the insurance company. Typically anyone with a medical condition undergoes stress from dealing with the condition and is subject to a mental illness diagnosis. These psychologists also look at “motivation,” they believe that illness is a psychological phenomenon, and people who have the wrong mindset or motivation get sick. They sell a lot of books on this topic, and mass media runs articles constantly about the Mind Body link. It is all about perception, if they can get people to believe rather than use facts, they can postpone payment, or a real diagnosis. This is more likely to apply to lower income working people, because people with money and security in their ideology have no motivation to get sick.
What you are describing is the “social political response mounted against patients” to cover up research fraud and the government’s role in denying these disease.
Lyme and affiliated diseases are not a controversy but a crime.
The testing is fraud, not flawed.
You can read more at Truthcures.org. This is a science based org educating patients and exposing what has gone on.
I agree that this is a really serious problem. Thank you for writing this article.
It seems until insurance companies are faced with punitive damages for clear cases of bad faith there is money to be made in denial of claims where there is the likely hood that the patient is too alone, and or too sick to wadge a complaint. Thank you for starting this conversation in this space.