Chronic Fatigue Syndrome: What’s in a name? If you are applying for Disability Benefits, EVERYTHING

For decades, many in the mainstream media, and the medical community, often mocked terribly ill individuals because of the moniker of the illness they suffered from: Chronic Fatigue Syndrome. Imagine living each day with the following complaints which deny you the ability to work, attend religious services, or maintain any sort of normal life with family and friends:

• Profound fatigue lasting at least 6 months (as if you have not slept for days or longer);
• Following minor exertion such as showering, dressing, going for a walk, experiencing total exhaustion such that you are incapacitated for hours, days or sometimes longer;
• Inability to ever wake up alert or refreshed following sleep;
• Brain fog such that even reading a newspaper or magazine is overwhelming;

And now imagine subjecting yourself to dozens of medical tests only to be told that you are “fine” or worse, “crazy.” That is what between 860,000 to 2.5 million Americans who have been diagnosed with chronic fatigue syndrome (CFS) have experienced.

But finally, the “Institute of Medicine (IOM), an independent, non-profit organization that works outside the government as the health arm of the National Academy of Sciences, to provide unbiased and authoritative advice to decision makers and the public” has dispelled the common, mistaken belief that CFS is not a real illness.

The first step recommended by IOM was to change the name of the illness. As those who have been diagnosed with CFS know all too well, one of the first responses to someone who says they have CFS is “Well I get tired too.” Not like this they don’t. And to its credit, the IOM panel recognized the destruction and devastation caused by that moniker so it recommended changing the name of the illness from CFS to “systemic exertion intolerance disease” or simply SEID.

In choosing that name, the panel recognized one of the most debilitating and disabling components of the illness: the physical and/or cognitive crash patients with this disease experience after performing minor exertion which prevents them from functioning in any normal sense of the word. Indeed, it is that aspect of the illness that prevents individuals from working in a competitive labor market. No employer wants to hire someone, or maintain the employment of someone, who cannot predict from one day to the next whether they can get to work. Even accommodating such a request is a daunting experience.

Indeed, the panel was well aware of the “good day/bad day” constellation of symptoms. Many individuals suffering from this disease often feel elated on a good day and push themselves to function as if the illness were gone (which is what researchers have found differentiates CFS from major depression since on a “good day” CFS patients are highly motivated to do as much as possible, where those with major depression cannot motivate themselves to get up and do things.)

In redefining the illness, the 15 member IOM panel, issued a 235 page report which reviewed the scientific evidence and studies documenting that those diagnosed with the illness have abnormal immune systems. The SEID definition simplified the prior definitions of CFS (The Fukuda definition, and the Canadian Case definition) used to diagnose CFS and myalgic encephalomyelitis (which is often used interchangeably with CFS).

Moreover, the diagnostic exclusion component was discarded precluding the need for expensive and time consuming tests to rule out other illnesses.

Post-exertional malaise is the hallmark of SEID, and its predecessor, CFS/ME. And importantly, as per Dr. Lucinda Bateman, an IOM panelist, it is now referred to as a disease, not merely a disorder.

So as a practitioner who has represented hundreds of CFS patients before both the Social Security Administration, Government Disability Pension Boards, and in Long Term Disability Insurance claims, I am going to herald the SEID nomenclature, and more importantly, the scientific evidence which documents the devastating effect SEID has on my client’s lives.

Should you have any questions pertaining to a disability claim involving SEID or other illnesses, please do not hesitate to contact us!