Annapolis

Health

Chronic Fatigue Syndrome

By Courtney Jordan
Additional Research by Monica Resa

One of the elements that made the ‘80s television show The Golden Girls a phenomenon was that it traveled in uncharted territory. Never before had a show allowed four middle-aged women to talk about their lives (while eating cheesecake at all hours of the day and night) in such intimate (often hilarious and sometimes quite serious) detail. The characters’ conversations mirrored the taboo subjects society was facing at the time…and still might be today. One episode in particular comes to mind.

“Sick and Tired” was the opening episode of the show’s fifth season (1989-1990). In a two-part show, Dorothy (played by the late Bea Arthur) comes home from her job as a teacher and tells her friends Rose (Betty White) and Blanche (Rue McClanahan), and her mother Sophia (Estelle Getty) that she left work early. She had to dismiss her students because, at one point, she was too tired to talk. Dorothy went on to say that she couldn’t shake this flu bug. Her friends told her that there was no way it was the flu because it had lasted so long—five months to be exact. She went to one doctor, then another doctor, and then back to the first doctor. She complained of constant exhaustion, aching muscles, swollen glands, fevers, forgetfulness, confusion, and the inability to get out of bed.

Doctors, who ran every test in the book but still couldn’t find an answer, dismissed her. Instead of admitting they didn’t know what it was, the doctors told Dorothy that it was nothing physical. It got to a point where Dorothy thought that perhaps she was crazy and, subsequently, fell into a depression. Her friends watched her go from perfectly normal to completely ill with no explanations and no hope.

Finally, during yet another doctor’s appointment (this time with a virologist) she was diagnosed with Chronic Fatigue Syndrome (CFS). The specialist told her that new diseases arise all the time, some of which there are no tests for. He identified CFS as a virus and that there were many theories surrounding it. He said that many blood tests could be run and that those results, combined with the exclusion of other diseases, could compose a profile. The doctor assured her that no one had died from it, and that
even though there was not a cure and that there are minor to serious variations of the disease, the best thing Dorothy could do was learn to cope with it.

Although television is often seen as an escape from reality, it can also be an effective teacher. In the case of this episode of The Golden Girls, the latter is true. Dorothy is an example of many who are suffering from CFS; a disease that at one time was under everyone’s radar, except those who were debilitated by it. For example, take Laura Hillenbrand, best-selling author of the acclaimed non-fiction book seabiscuit: An American Legend. What many people don’t know is that this work was written during her devastating struggle with CFS.

In March 1987, Hillenbrand was stricken with an illness that she couldn’t explain. Much like Dorothy, she was unable to move without being exhausted, her lymph nodes were swollen, and her once vibrant life force was being sucked out of her. She tested positive for both strep throat and the Epstein-Barr virus. Hillenbrand was given antibiotics and sent home. Unfortunately for her, this would be an all-too-often occurrence—going to doctor after doctor, receiving medicine, and seeing no signs of recovery.

Hillenbrand’s health did nothing but decline, but she kept going back to the doctor because that’s what you do when you’re sick. They ran test after test and impatiently told her that she should see a psychiatrist. In their minds, it had to be emotional because nothing was showing up on paper (at least nothing that they could see). She went to the psychiatrist who deemed her mentally healthy. Hillenbrand was back at square one again in the doctor’s chair, the same chair in which she was told to go to the psychiatrist in the first place. Imagine the frustration and confusion of this vicious, endless cycle. Now imagine what that must feel like on top of being unbearably sick. In the fall of 1987, she fell into a deep depression. Finally, she was sent to a specialist at Johns Hopkins University School of Medicine who diagnosed her with Chronic Fatigue Syndrome, an incurable and incapacitating disease that some people recover from and some people don’t.

Since her diagnosis, Laura Hillenbrand’s health has been up and down. She has spent most of her adult life trying to cope with an illness that will not talk back when she asks it questions. It will not tell her what is around the corner, but she has done her best to stay productive and live life to the fullest extent, hence her many articles, essays, and her novel. That it has been a painful, real-life ordeal goes without saying.

In 1988, CFS was officially recognized by the Centers for Disease Control and Prevention (CDC). Before that time, CFS was almost unheard of. In 1994, it was determined that patients had to meet the following two criteria to be diagnosed with CFS:

Have severe chronic fatigue of six months or longer duration with other known medical conditions excluded by clinical diagnosis; and
Concurrently have four or more of the these symptoms:Substantial impairment in short-term memory or concentration
Sore throat
Tender lymph nodes
Muscle pain
Multi-joint pain without swelling or redness
Headaches of a new type, pattern, or severity
Unrefreshing sleep, and
Exertional malaise lasting more than 24 hours.

After more than 20 years of study, the CDC declares that the disease’s cause and cure are still unknown. Treatment is limited to trying to relieve symptoms and improve the patient’s daily living. The viral disease Epstein-Barr is sometimes likened to CFS, which was the case for Laura Hillenbrand, but subsequent research has demonstrated that some patients have had no exposure to that virus.

The lack of answers about this disease certainly does not reflect a lack of effort. The Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America is the largest and most active organization dedicated to CFS research, advocacy, and education. Under the direction of Kimberly
McCleary, President and CEO, the organization is dedicated to finding a cure. She works with Nevada Senator Harry Reid (D) and members of Congressional appropriations committees to get the funds needed for research and education. She also works closely with the Social Security Administration to aid CFS patients in gaining access to federal disability benefits. She refuses to give up and that’s just what is necessary to make CFS a more conquerable foe.

Although so much is unknown about CFS, there are a few things that can be pinpointed. The CDC estimates that four million Americans suffer from CFS, but only one million have been correctly diagnosed. Oftentimes, the disease is diagnosed as a result of the process of elimination. Full-panels of blood and urine tests tend to rule out illnesses with similar effects like lupus, Lyme disease, Epstein-
Barr, thyroid malfunction, and low iron levels. The major component in discovering this illness, however, is the presence of the disease’s benchmarking symptoms: an unrelenting exhaustion that lasts for at least six months and post-exertion relapse where the patient feels worse after even modest physical activity or mental exertion. CFS patients have reported a varied range of symptoms but the aforementioned two are the most telling.

Any and all people could be diagnosed with the disease, although it appears to manifest in women four times more frequently than men. CFS occurs more frequently in adults than in children, and it occurs more often in adults who are in their 40’s and 50’s. Still, CFS can happen at any age and it is certainly not a psychiatric disorder.

Recently, new research has begun to point doctors in the right direction. Kimberly McCleary says, “The endocrine system has been a focus [of research] for many years. There seems to be some evidence that the adrenal glands are smaller in CFS patients than in a healthy person and that there is a breakdown in communication between the endocrine and immune systems. This may partly explain why women are more susceptible to having CFS—their endocrine systems are much more complex than men’s.” As the
research continues and more and more physicians become familiar with this disease, it is believed that there will be a breakthrough and that the illness will become less of a mystery. Until there is a cure, education is not only the weapon of choice, but it is also the weapon of necessity. For helpful links, visit www.whatsupmag.com.

Courtney Jordan resides in Anne Arundel County. With a degree in English from McDaniel College and a Master’s degree in Communication from Clemson University, she currently teaches American Literature at Elizabeth Seton High School.

What’s Up? does not give medical advice. This material is simply a discussion of current information, trends, and practices. Please seek the advice of your physician before making any changes in your lifestyle or health routine.

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