It’s like adding insult to injury—after fighting to have your debilitating condition acknowledged, you now have to face an uphill battle to get the disability coverage you’re entitled to. Although you have chronic fatigue syndrome (also called myalgic encephalomyelitis or ME/CFS*), your employer’s insurance company says you’re not disabled…and that the condition causing fatigue and pain so severe that a trip to the kitchen is difficult and a walk outside with the dog impossible isn’t “covered” by their disability insurance. So now what do you do? And how do you muster the energy to demand your rights?


There are two types of disability insurance that you might be eligible for.…

  • The Supplemental Security Income program. Administered by the Social Security Administration, it pays small amounts of federal funds to people who can’t work because of a disability.
  • Private disability insurance. Usually from an employer, it pays employees who can no longer work.

Applying for social security disability benefits can be started online at The application process is straightforward, and those who qualify get disability benefits. Be aware that it can be time-consuming and involves a review of your case at your local Social Security office. If denied, you can appeal directly to the Social Security Administration, and after that to federal court. You can find extensive information on the appeals process at

Private disability insurance, usually offered by a company for which you’ve worked for several years, is where there’s likely to be the most trouble.

Insurance companies have a powerful financial incentive not to pay disability claims, and they have powerful resources to resist them. If you’ve been denied benefits you’re entitled to, here’s what to do…

Find an advocate. You’ll need a relative or close friend who can help you navigate the legal process. That’s because ME/CFS may have left you without the energy needed to obtain and file the stacks of documents that will be required today, tomorrow and so on by the legal system and the insurance company’s lawyers.

Get a lawyer. Find a lawyer who specializes in disability law. You might contact legal groups that handle disability cases and ask if they do pro bono work or will work at a discount. You might get leads on lawyers by cruising the online communities of ME/CFS associations, such as Solve ME/CFS Initiative and the American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society. Law schools and local bar associations may also be able to give you referrals.

Line up professionals. You’ll need doctors and other medical specialists to provide documentation (or, in rare cases, to testify) on your behalf. A specialist who can administer a cardiopulmonary exercise test—commonly called a CPET test—is particularly important given a recent decision of the United States District Court of New Jersey. In it, the highly-respected Washington Post science reporter Brian Vastag sued the Prudential Insurance Company of America for stopping short-term disability benefits and denying him long-term benefits under his employer’s plan. Vastag had been diagnosed with ME/CFS by several specialists who submitted reports on his behalf. Most importantly, in the Court’s written opinion, a key factor in its decision against Prudential and for Vastag were the results of his CPET test. As a result, Vastag will get every dime that Prudential owes him.

*Note: Chronic fatigue syndrome has been renamed ME/CFS—the ME stands for myalgic encephalomyelitis, meaning muscle pain and inflammation of the central nervous system. Using both terms represents a more accurate description of the disease than chronic fatigue syndrome alone.