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.
I have had CFS since 1994. The only thing that made a difference in my appeal for disability claim was really how I tried to avoid being on disability. I tried taking training for something I could handle – there wasn’t anything. I’d even forget where I was,forget how to read and black out (all when I tried to push myself).
I really did want to keep working and have a career. When the time came to see the judge on the “final plea”, there was a HUGE file from the school, I tried to train with, to avoid being on disability. I didn’t know they were sending reports on my progress. Only a few minutes of looking at the reports, the judge said I should have gotten the SS a long time ago.
I was relieved to have financial and medical aid until I was well again. Doctors kept telling me CFS usually passed, on it’s own, after a few years. The sad part, for me, it’s been over 25 years now, most of my adult life…and I’m still waiting to get well. ;-(
I have been feeling well now for years, and I encourage anyone with CFS &/or ME to try a very inexpensive and safe treatment that you can get without seeing a doctor and without having a prescription. Just go to the free preview of an ebook on Amazon, namely Environmental Revelation, and then go to the table of contents, and then click on Sodium Thiosulfate Pentahydrate. The entire treatment, including how to obtain sodium thiosulfate pentahydrate and how to use it, is totally described in the free preview of the book (you do not need to purchase the book). If this product makes you feel a lot better (and it certainly made me feel a lot better, and it has made numerous other people feel a lot better), then your chronic fatigue syndrome &/or ME is likely from an air pollutant, and you may hope to feel much, much better in the future. PS: I haven’t missed a single day of taking the sodium thiosulfate pentahydrate since 1994, and I feel much, much better now in my sixties than I did in my late twenties when suffering from chronic fatigue. When my illness first started, I got sickly and tired. Before long I was having real bad memory problems, could no longer tolerate exercise (a big change for me), and was getting short of breath simply trying to sustain a note while singing in church. As time went by, I seemed to be wasting away, and lost about twenty pounds. The day I started taking sodium thiosulfate I got better—a lot better! I now exercise 4 days a week, roller-blade at the rink with folks much younger than me, and my personal doctor told me that I’m the healthiest person he knows! I truly thank God for all this, and I think a whole lot of other people should know about it…
The muscle wasting drug Cortene should be available next year as it has been thru human testing on a small scale and can reset cfs! And Dr. Ron Davis has a tiny blood test that he is trying to get replicated to test hundreds at one time. Please donate what you can to Open Medicine Foundation-it is wonderful and working hard for us.
It’s about time insurers changed their views on this disease, but don’t hold your breath waiting for it to happen. As an ME/CFS patient and support group leader, I have seen far too many claims denied for trivial reasons. The usual claim is that the patient didn’t have enough “objective testing,” but if you ask the insurer what objective testing they want, they can’t come up with anything reasonable. As I write, diagnostic tests are being developed, but it will take a while (probably years) for them to become widely available and accepted.
Meanwhile, never underestimate the ability of insurers to find excuses to deny claims. They will cling to whatever outdated information they can find, because denying claims is how they make their money. If the patient’s life falls apart, well, that’s not their problem.
I want more studies and I want a cure. I used to work 2 jobs and dance 5 hours a day and after shingles and Epstein Barr virus, I’m so exhausted and in so much pain I have the hardest time staying awake by just driving. Being able to get out of bed to get something to eat is so hard sometimes I don’t eat until I’m about to pass out. I drink only water. I take organic whole food vitamins with COQ10, live probiotics, and cbd oil, but that’s only because of the people giving them to me as the least they can do. But alas, still I am miserable and live in bed. People thinking this isn’t a real problem can just screw off. I’m still so young and so desperately want my life back. I don’t have insurance and trying to get disability is a nightmare. I feel like a drain on everyone and that I shouldn’t be alive. I sure freaking wish that I was blessed to be healthy enough to look down on people like me. Thanks for this article. It gives me hope that people will take this seriously and find a cure.
I am going to agree with the fictitious nonsense of this article as others in the older comments have. I know of two people–one who is now in her 60’s and has been with this diagnosis, per se, for 12-15 years, at least. This individual has enough energy to go to a sham disability doctor in California for a yearly sign off of SSDI. She has managed to claim work disability as well from her company for as many years to a total of at least $8K a month to stay home and sleep? This individual has made no attempts to get well, to try to work part time, to volunteer, to seek out any real research. No antidepressants, no vitamins , no attempt to get better. Goes to football games, family events, travels, has the upgrade best Comcast, pays for hair salons—you name it –all while squandering money from US government taxpayers to stay home. Blame the disability doctors who sign off on this nonsense while others go to work. This has been a diagnosis of exclusion for years. Now the medical community tries to find more real ICD-9 codes for this while SSDI goes broke and shells out false disability claims—an epidemic in healthcare. Sorry, I see too many REAL disabled people and veterans who really deserve this money. Shame on the medical community and disability doctors who keep this going to fill their own wallets.
gswonder,
Often on these sites, the description of one of these individuals exploiting the sytem, a very rare occurrance is depicted as a “Salient Exemplar.” In fact, is is very difficult to get any kind of benefits and it has gotten much more difficult recently. Your depiction is much like the “Welafare Queen” depiction perpetuated by the right wing. Attempt so portary people on disability or SS, as you prtray this one, are a deliberate trolling techinique. In fact few people live the life portrayed here. Most peopl on SS barely get by, and proving Disabilty in front of a judge is extremently difficult. Many people live on less than 700 a month, and have to grovel and scrape to exist. SS does nto pay enough to even maintian housing. In most cases it talkes years after an injury to get any kind of relief. The process can take four or five years, as thesubject loseses everything. People who were self employed or who worked in low wage jobs, lose everything first. You portray SS as a Jackpot, when in fact the reverse is true.
Wow, the ignorance of your comment is shocking and shows a severe lack of compassion and understanding. Can you imagine feeling like you have the flu every moment, of every day, for the rest of your life? And then with this crippling disability, knowing there is no proven treatment, doctors and treatments are wildly experimental, not coveraged by insurance, and then have to deal with attitudes such as yours where people question your disease at all? You are very lucky that you’re healthy enough to have this attitude, what a privilege that must be. You have no idea what it must take for this person you know to occasionally be out and about and go to doctors appointments. Shame on you
If you feel so strongly, report these people. Trust me, insurers will be happy to have the information. However you do not know what you are talking about when you label the information in this article as false. I had to leave a $160k a year job I loved after coming down with Epstein Barr Virus within a week of having long acting steroid injections. My life is ruined. I was an active busy professional and now am lucky if i can get enough energy on a given day to clean up my house or make a meal. The pain is non stop and the fatigue completely unpredictable. Although my specialist (who is an expert in this area) and I have tried numerous treatments, no real progress has been made. My family doctor thought it was “all in my head” and I can be wiped out for days simply by exerting myself too much mentally or physically. Instead of being jealous, thank GOD you are not sick and your life HAS NOT been ruined by this terrible condition. I personally hope they find the cause and cure.
gswonder, I am sorry that you have based your world views while looking out such a small window. I used to make 130k in sales and loved my job. I paid into social security for 14 years and when I got sick I had so much pride I burned through my life savings before caving in and finally applying for social security after not being able to work for two years. I have a two year old and 4 year old little boy that I can no longer pick up to hug, or run with but I am doing my best. I hope to work again soon when I am better. My hope for you is that you open your eyes wider to realize not everyone is trying to pull one over on the system, some of us are just trying to survive.
My Identical Twin Sons Were Diagnosed With Chronic Fatigue Syndrome By 3 different doctors back when they were 14,they are in their early 30s now. This Chronic Fatigue Syndrome Stole 10 Years Of Their Lives,And Still Causes Problems Today.