INTRODUCTION

Fifty-four year old real estate developer and father of four, Darryl Anderson remembers, I got in my car, and I drove up the highway, headed up to the mountains, and I was going to drive off a cliff. I just wanted to end it all.

Nomi Antelman of Tuscon, Arizona told an interviewer from ABC's television show 20/20, "One day I simply decided that I had to be released from the pain, and the only release that I could see was suicide. I couldn't face another doctor saying, 'Think positive, you're crazy, you're neurotic.'"

In 1996, World Champion soccer player Michelle Akers told the U.S. Congress, "On the very bad days, on the days that it is all I can do -- to survive, I walk off - drag myself off the field, my legs and body like lead, my breathing is labored. It is all I can do to get to the locker room, change my clothes, and keep from crying in utter exhaustion and weariness. I am light-headed and shaky. My vision is blurred. My teammates ask me if I am OK - and I nod yes. But, my eyes tell the truth. They are hollow, empty, dull and lifeless. It scares me to look in the mirror when I get like this. I shake my head knowing I over did it again. I crossed that invisible line between functioning and being very, very sick. How long would it take to recover from this one?" [Akers]

Former Respiratory Therapist, Meghan Shannon was suicidal when she entered a California religious retreat. She told the nuns, "I will never return home again. Not because I'm physically worse, but because I've not been able to find a way to take care of myself without living off other people's generosity and because in the last few years, the hatred for people with this disease has become so great. I'm forty-five years old. My dreams and hopes are gone. I don't know where else to go, except to the other side, where it's safer" [Johnson 695].

Thirty-six year-old Episcopal priest and CFIDS patient, Stephen Beal of Paradise, California told "Osler's Web" author Hillary Johnson, "In the short term it doesn't look like it's a life-threatening disease, unless you think losing your job and your home and your family isn't too bad. Some people would rather die" [72].

These people are chronically ill. The feelings of despair and desperation are not unusual for those of us who live with a life-altering illness and the effects of the prolonged physical and emotional suffering of a mysterious and misunderstood illness called Chronic Fatigue and Immune Dysfunction Syndrome [CFIDS/CFS]. In Europe and other parts of the world, CFIDS is more appropriately known as Myalgic Encephalomyelitis [ME]. Approximately one million people in the United States have been diagnosed with CFIDS, and there are many more undiagnosed and misdiagnosed cases. I was diagnosed in 1989, two years after becoming ill.

WHAT IS CFIDS?
CFIDS is not a new disorder. Cases of similar illnesses with the same symptoms have been around for several centuries; ranging from the "vapors" in the early 1800's, Da Costa's [Effort] Syndrome in the mid 1800s, Chronic Brucellosis, Hypoglycemia, Myalgic Encephalomyelitis [ME], Gulf War Syndrome, Chronic Mononucleosis/Chronic Epstein-Barr Virus, Postviral Fatigue Syndrome, Chronic Fatigue Syndrome, to CFIDS. [Crook 341] In 1984, there was a publicized cluster outbreak in Incline Village, California, which first brought the disease into the spotlight in the US. The CDC didn't seem very concerned or interested because they were too busy with the AIDS problem. CFIDS has recently been getting more attention and press with well-known CFIDS patients like Cher, world-class soccer player Michelle Akers, and most recently, Laura Hillenbrand, best-selling author of "Seabiscuit: An American Legend". In fact, the July 7, 2003 issue of The New Yorker Magazine published an article titled, "A Sudden Illness: How My Life Changed", by Ms. Hillenbrand. That's real progress for the CFIDS community!

CFIDS affects virtually all of the body's major systems: Neurological, immunological, endocrine [hormonal], gastrointestinal, and musculoskeletal [Feiden 29]. There is a significant fluctuation in the nature and severity of CFIDS symptoms. Erratic and unpredictable, they vary from month to month, day to day, and sometimes from minute to minute. Just as the illness and symptoms vary, they vary from person to person [31, 32]. This makes diagnosis, treatment and coping very difficult. In March 1988, after initially denying the existence of CFS, The Center for Disease Control and Prevention finally issued a definition and symptom criteria for diagnosing CFIDS with a revision that was published in December 1994 [Notes 1]. Researchers, doctors, and patients agree that the CDC definition is too narrow and needs to be expanded [Berne 8].

The etiology of CFIDS has not been determined yet and it does not appear to be contagious [Berne 8]. It is unknown whether immune system dysfunction is the cause or the result of CFIDS, or whether it is viral, environmental, a combination of factors or something else entirely. Some researchers have hypothesized that "certain components of the immune system of the CFIDS patient may be overactive, underreactive or both." [Isakson] Pieces of the CFIDS etiology puzzle may come together as researchers study the differences between the physiology of healthy control groups and CFIDS patients, but it is clear that for now, CFIDS remains a complex and mysterious disorder [Freidenberg 18].

WHAT ARE THE SYMPTOMS?
The general and physical symptoms of CFIDS include, but are not limited to: debilitating fatigue [extreme exhaustion not relieved by sleep and exacerbated by exertion]; sore throat; swollen/tender lymph nodes; frequent infections; unusual headaches; allergies; multiple chemical and food sensitivities; weight change; muscle and joint pain; gastrointestinal problems; abdominal pain; night sweats; low-grade fevers; shortness of breath; cough; heart palpitations; and urinary tract problems [Berne 6]. In addition to the physical symptoms, patients experience a variety of neurological and emotional symptoms as a result of the condition. The neurological symptoms include sensitivity to light; disequilibrium [vertigo, dizziness, nausea], cognitive impairment affecting memory and concentration [patients refer to this as "brain fog"], impaired word-finding ability, numbness, sleep disturbance; visual problems; seizure-like episodes; and altered spatial perception among others. Emotional problems associated with CFIDS include anxiety and depression [7]. These symptoms seem to be endogenous [chemically induced] rather than exogenous [Freidan 37].

WHO GETS IT?
Dr. William C. Reeves, chief of the CDC branch responsible for a 1998 CFIDS study reports that "CFIDS affects women and men of all racial and ethnic groups, as well as adolescents." The CDC also concluded that CFIDS is a serious women's public health concern. "To put this into perspective, CFIDS is three times more common than HIV infection in women, 25 times the rate of AIDS among women, and is considerably higher than a woman's lifetime risk of getting lung cancer," Reeves said.

DIAGNOSIS
For patients, the diagnosis of CFIDS is a long and expensive process. Usually many physicians are consulted before a diagnosis is made. The criterion for diagnosis is based on symptoms, length of illness, degree of impairment and ruling out other illnesses with similar symptoms, which means that numerous costly tests must be performed. CFIDS is under diagnosed because it's not taken seriously or the symptoms are misunderstood, and over diagnosed in cases where the fatigue is caused by other factors such as anemia, sleep disorders, effects of drugs or other illness.

LIVING WITH CFIDS
Mark Loveless, M.D., an infectious disease specialist who heads the AIDS and CFIDS clinic at Oregon's Health Sciences University shed some light on what it feels like living with CFIDS. During a U.S. congressional briefing he testified that, "everyday a CFIDS patient feels significantly the same as an AIDS patient feels two months before death" [Berne xiii]. AIDS is generally accepted to be a life-threatening disease, CFIDS is not. Dr. Robert Hallowitz compared the two diseases saying that if AIDS is a death sentence, CFIDS is a life sentence. For most CFIDS patients, that tends to be more of a curse than a blessing. Speaking as someone who has lived with this illness for over 16 years, I can say that it is true that living with this illness and with so many limitations can seem like a life not worth living, but for those of us who hang in there and find ways to cope, there is hope [Coping Phase IV - Integration]. It is possible to move beyond old expectations, goals and dreams and structure a life that has worth and meaning just as it is from moment to moment.

BEING MISUNDERSTOOD
With statistics and symptoms as serious as these, it seems curious that CFIDS is a disease that is often overlooked and dismissed by a large percentage of the general public and the medical profession. This is most likely due to the fact that the name does not adequately reflect the seriousness of the illness and because there is no "magic pill" or cure. According to the CFIDS Association of America, "the name Chronic Fatigue Syndrome trivializes the disease. It is often confused with "chronic fatigue", a symptom of most illnesses. The name CFIDS places too much emphasis on merely one of the major symptoms of the disease, fatigue, and conveys a lack of understanding of its complexity."

"Historically people condemn what they don't understand", CFIDS researcher Robert J. Shadolnik Ph.D. explains. After the 1984 outbreak, CFIDS was unfairly dubbed the "yuppie flu" because it seemed to affect primarily young white professionals with type "A" personalities [Smith]. The CFIDS Association of America says that "yuppie flu" was a demeaning label, which merely reflected differences in access to health care among those with the disease, and it showed a lack of understanding about its complexity. They emphasize that there is nothing "yuppie" about CFIDS and that it is a serious illness that knows no demographic or socioeconomic boundaries. There is an ongoing campaign by patients, doctors and advocates to adopt a more appropriate name for CFIDS that will adequately encompass the scope of this illness. De Paul University is hosting a study to objectively measure the stigma associated with different labels for CFIDS. They say that it's possible that various alternate names could be field tested to ensure that the new label itself would not carry a stigma. Myalgic Encephalopathy [ME] is the name change most often discussed most often because of its 40-year presence in medical literature and favorable acceptance in countries outside of the United States.

EMOTIONAL FALLOUT
As with many chronic illnesses, "the emotional fallout of CFIDS can be as devastating as the symptoms themselves," writes CFIDS patient Katrina Berne, PH.D in her critically acclaimed guide to CFS, "Running on Empty." A recent study conducted confirmed that CFIDS patients experience a stigma associated with their condition. Almost all of the subjects studied felt estranged and 70% believed that others saw their symptoms as psychologically related. For apparent protection from stigma, more than 40% of the subjects saw a need to be secretive about their symptoms [Green 63-64]. Adding insult to injury, patients are often treated with condescension or rejected when seeking medical help [Freidenberg 4]. Uninformed friends, family members, and some doctors frequently and unfairly label people with CFIDS as "hypochondriacs," most likely because fatigue is the main symptom of CFIDS and those who don't have it are not likely to understand that it is a different type of fatigue than healthy people experience. PWCs [Person with CFIDS] are often accused of merely being "depressed" and that they should just "snap out of it." However, and this is a critical distinction, the symptoms of CFIDS do not fit the description of exogenous depression, and in fact, "appears to have physiological origins within the body" [Freidan 37].

Dr. Carol Jessop, a leading CFIDS physician and researcher says that CFIDS is not "simply a state of mind, nor is it a somatization disorder." She wants people to know that while depression, even suicidal depression may develop in PWCs; it almost always develops as a consequence of organic changes in the immune, endocrine, nervous and other systems of the body [Crook 371]. Immunologist Nancy Klimas agrees. She was skeptical of CFIDS at first and thought what she found to be viral infection in the CFIDS patients. The fact that CFIDS patient's white blood cell ratios and other immune system parameters pointed to a body fighting infection struck her. "The immunology is not your run of the mill immunology," Klimas states, "Nor is it depression immunology, this is different" [Johnson 158,159].

TREATMENT
At this time, there is no cure for CFIDS and it is not possible to predict how long someone will remain ill with CFIDS, or whether full or significant recovery will ever take place [Berne 9]. Treatment exists solely to alleviate symptoms [Ganz]. Various analgesics, pain medications and low doses of tricyclic antidepressants which have shown to effectively help with sleep disturbances, fatigue, and muscle pain are the most common treatments. Eating a healthy diet, getting extra sleep, eliminating stress, meditating, and in some cases light exercise [when tolerated] is also helpful.

THE FOUR PHASES OF COPING:
"Sickness has been called an insult to the body but it is also a tremendous affront to the mind and to the spirit. Rare is the individual who can adjust to the trauma of [CFIDS] without first enduring a period of desperation." Patients must also go through a grieving process, mourning the loss of previous times of good health eventually and hopefully reaching a stage of acceptance [Freidan 119, 120].

Director of Albany Health Management Associates, Inc., Ms. Fennel has outlined the Four Phases of Coping with CFIDS. I have traversed all four phases and can verify their accuracy. Throughout the coping phases, the physical aspects are of course difficult and challenging, but the social aspects and losses have been the most devastating. I think most people with CFIDS would agree with me. Listed below are the Four Phases of Coping: Trauma/Crisis, Stabilization, Resolution, and Integration.

HOPE & CREATING A NEW IDENTITY

"You can't go home when home's no longer there. It's like our past life is a building condemned after a disaster, an earthquake, hurricane, tornado, fire, or flood. Instead of tearing the old house down and rebuilding, we pitch a little tent and camp out in the yard, dreaming of how nice the place used to look, all the great times we had in there, [but] if you are still camped out in your old yard, its time to move on. By all means, take what mementos you can find, but it is time to start building new dreams, new memories, new life."

Michelle Akers has retired from Professional Soccer due to an injured shoulder and her long battle with CFIDS. She writes about the hope many of us have found:

"On a personal and emotional level, I have hope. I am encouraged. I still consider this illness to be a blessing and an opportunity. I learn more from CFIDS and the people who have it than anything else I have ever experienced. It is a continual and constant challenge and one I take on with a warrior mentality each and every day. We can overcome this thing! We will overcome it. Maybe not today or next month, but one day."

Indeed, CFIDS forces a patient to re-evaluate their values, purpose, and way of life. Many PWCs describe their illness as a wake-up call saying that it forces them to change their relationship with themselves and others [Collinge 188]. PWCs are forced to rediscover who they are. In fact, after partial or full recovery many PWCs report a new calmness and inner strength having survived the depths of despair [Berne 195]. Having to cope with physical limitations and an inability to do things, many PWCs have learned that we are not what we do or the roles we take on. We are not our careers or our actions. We are ultimately greater and deeper than our external identities.

CONCLUSION:
With over a million known cases in the United States, CFIDS remains a frustrating enigma. Unraveling the mystery of this complex illness has been slow and difficult. PWCs are asking local representatives and politicians to join in the fight by supporting ongoing research and protecting federal CFIDS funding among other things, but it is only a beginning. As more and more CFIDS support groups, educational resources, research, and advocates join the cause, progress will be made. And with increased public awareness, compassion, continued research and better funding, this "mystery waiting for a miracle" may one day be solved. Until then, we'd be happy with a little understanding and acceptance.

- end -

NOTES
1. The case definition of CFS as published in the December 1994 Annals of Internal Medicine is as follows: Fatigue: Patients must have otherwise unexplained, relapsing fatigue that is new [not life-long]; not the result of ongoing exertion; not relieved by rest; and that results in substantial decrease in levels of occupational, social, educational, or personal activities. Symptoms: The patient must have four or more of the following eight symptoms. Symptoms must persist for six months and the patient must not have predated fatigue. Self-reported impairment of memory or concentration that affects occupational, social, educational, or personal activities. Fatigue [see above description], sore throat, tender cervical [neck area] or axillary [underarm area] nodes, myalgias [muscle pain], arthralgias [pain along the nerve of a joint], no redness or swelling, headache of a new type, unrefreshed sleep, post-exertional malaise lasting at least 24 hours.

WORKS CITED
Books:
Berne, Katrina. Running on Empty. Alameda: Hunter, 1995.
Collinge, William. Recovering From Chronic Fatigue Syndrome. New York: Berkley, 1993.
Crook, William. Chronic Fatigue Syndrome and the Yeast Connection. Jackson: Professional,1992.
Freidberg, Fred. Coping with Chronic Fatigue Syndrome. Oakland: New Harbinger, 1995.
Feiden, Karyn Hope and Help for Chronic Fatigue Syndrome. NJ: Prentice Hall, 1990.
Ganz, N.M., Holmes, G.P. �Treatment of Patients with Chronic Fatigue Syndrome,� Drugs, 1989, Vol.38, [6] Pp. 855
Green, Judith. Romei, Jennifer. Natelson, Benjamin. "Stigma and Chronic Fatigue Syndrome.� Journal of Chronic Fatigue Syndrome, Vol. 5.2 [1999]: 63-64.
Isakson, S. "Great Lakes/Midwest Chronic Fatigue Syndrome Conference Report". Heart of America News, Fall/Winter 1989. Johnson, Hillary. Osler�s Web. New York: Crown, 1996.
Scott, L.V., The J., Rezneck, R., Martin, A., Sohaib, A., Dinan, T.G. Psychoneuroendocrinology 1999. 1999 Oct. 24 [7]: 759-68.
Dept. of Psychiatry, Trinity College Dublin Medical School, St. James, Hospital, Ireland.
Websites:
Akers, Michelle. 14, November 2000. http://www.cccinc-7candlesticks.org/CCCIncN+EMichelleAkers.html
The Chronic Fatigue Association of America. 1 Nov. 1999. http://www.cfids.org
Chronic Neuroimmune Diseases. 27, May 2003 http://www.anapsid.org/cnd/coping/index.html

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