3 Facts You May Not Know About Chronic Fatigue Syndrome

In the past, I’ve written a fair amount about Chronic Fatigue Syndrome, covering subjects like parenting, managing expectations, and just how I think I got it in the first place. Because I am still a relatively busy person when it comes to writing and involvement in my local creative community, it’s important that people have information about how this misunderstood condition affects a person’s life. I have limitations in what I can accomplish on any given day, but if I can use some of that available energy to help one more person understand why, then I have done some good. Besides, I’m certainly not the only one struggling with this illness, and the more information the public has, perhaps the sooner we will be able to effectively treat it.

To summarize the information given in those previous posts, Chronic Fatigue Syndrome is an illness that mimics flu-like symptoms, with the primary symptom being that of unrelenting  and debilitating exhaustion. The severity of a person’s fatigue is affected by their level of activity, but rest does not eliminate said fatigue. Researchers have yet to pinpoint a direct cause for the illness, and treatment is more about managing symptoms. Here are a few additional facts you may not know:

1. Chronic Fatigue Syndrome (CFS) is only one of the many names used to refer to the illness.

In Europe, the more common name for CFS is Myalgic Encephalomyelitis (ME). It is also referred to as Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), which is also the name used by one of the most active research and eduction groups, The CFIDS Association of America. Other doctors and organization have used Post-Viral Fatigue Syndrome (PVFS).

Personally, I use the name CFS because it’s the shortest and easiest to remember, but I concur with the assertion that the name does not completely describe the effect the illness has on the immune system.

2. CFS is a recognized disability according to the Centers for Disease Control in the US.

Because of that, a person who is unable to work due to the illness is able to apply for disability income through the Social Security Administration.

Social Security Ruling 99-2p states that CFS can be a disabling condition and people who meet SSA’s criteria for disability are eligible for benefits. SSA’s general definition of disability is: “the inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment (or combination of impairments) which … has lasted or can be expected to last for a continuous period of not less than 12 months.” However, the agency notes that “disability may not be established on the basis of an individual’s statement of symptoms alone.” Importantly, the SSA states that “CFS constitutes a medically determinable impairment when accompanied by medical signs or laboratory findings.”

3. Approximately 1 million Americans suffer from CFS, and in Britain, estimates are around 250,000.

These numbers are according to the CFIDS Association and the ME Association. However, because there is no specific test that can diagnose the illness, these estimates do not cover people who have yet to discover the reason for their disrupting fatigue. Because the condition has no distinct cause, diagnosis often comes only after many other disease possibilities have been eliminated.

The thing about CFS is that sufferers’ experiences vary. Symptoms can range from a mild, longterm “out of sorts” feeling, to exhaustion so crippling that a person cannot get out of bed. These three facts and my three previous posts only scratch the surface of personal experience and medical information.

Any questions you might have for me — or if you’ve been diagnosed and just want to commiserate — give a shout in the comments. I am by no means an expert, but I’ll do my best to answer.

By Sara Habein

Sara Habein is the author of Infinite Disposable, a collection of microfiction, and her work has appeared on The Rumpus, Pajiba and Word Riot, among others. Her book reviews and other commentary appear at Glorified Love Letters, and she is the co-manager of Electric City Creative.

2 replies on “3 Facts You May Not Know About Chronic Fatigue Syndrome”

Thanks for sharing some facts on CFS and your personal experience with CFS. I don’t know much about it myself outside of having watched a Golden Girls episode with Dorothy being diagnosed, and we never hear about it again nor do I know how much they got right or wrong there.

Now that you mention it, I do vaguely remember that Golden Girls episode. The first time I’d ever heard of the illness was in Cher’s Behind the Music episode.

And yes, part of why I do all these posts is so that more people know more about it. It’s a similar condition to fibromyalgia (which I also have… yeah, fun times all around), which I’ve noticed has recently become more widely known.

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