What is CFIDS/CFS/ME?
CFIDS (Chronic Fatigue and Immune Deficiency Syndrome) is an emerging illness characterized by debilitating fatigue (experienced as exhaustion and extremely poor stamina), neurological problems, and a variety of flu-like symptoms. The illness is also known as Chronic Fatigue Syndrome (CFS). Outside of the USA it is usually known as Myalgic Encephalomyelopathy (ME). In the past, the syndrome has been known as Chronic Epstein-Barr Virus (CBEV).
The core symptoms include excessive fatigue, general pain, mental fogginess, and often gastro-intestinal problems. Many other symptoms will also be present; however, they will typically be different among different patients. These include fatigue following stressful activities, headaches, sore throat, sleep disorder, abnormal temperature and others.
The degree of severity can differ widely among patients, and will also vary over time for the same patient. Severity can vary between getting unusually fatigued following stressful events, to being totally bedridden and completely disabled. The symptoms will tend to wax and wane over time. This variation, in addition to the fact that the cause of the disease is not yet known, makes this illness difficult to diagnose.
More about CFIDS: a press release by Jayne Hitchcock, PWC
Did you know:
**An episode of the "Golden Girls" dealt with CFIDS (Chronic Fatigue and Immune Deficiency Syndrome)?
**Cher had it?
**Welterweight champion Grahame Cheney of Australia announced on March 26, 1996 that he is retiring due to CFIDS (Dallas Morning News/World Sports Roundup)
**Florence Nightingale is believed to have had CFIDS--May 12 is also her birthday?
CFIDS (Chronic Fatigue and Immune Deficiency Syndrome) affects tens of thousands of people who are at a loss to explain why they were the ones to become ill with CFIDS.
"I was slim, worked out at the gym, jogged on the weekends and had an executive position at an advertising agency in southern California," Anne*, a PWC (Person With CFIDS) noted. "Then I became ill with bronchitis, but it never fully went away. Suddenly, I was so tired I couldn't get out of bed, I couldn't think straight, I was sick all the time and the doctors I saw told me it was all in my head."
It turns out it wasn't all in Anne's head. She finally found a doctor who not only diagnosed her with CFIDS, but also helped her lessen her symptoms with vitamins and learn how to live with her illness.
But for Anne and other PWCs, there is no cure for CFIDS--yet. Some PWCs have had CFIDS for less than a year, others five years, and some for over ten years. How does someone become ill with CFIDS? No one knows the answer yet, although big strides have been taken to search for an answer. However, it is believed CFIDS is not contagious--healthy spouses and family members who live with PWCs almost never show a sign of illness. And although there is no specific test to diagnose CFIDS, there are tests to help determine whether someone may have it or not. These include positive antibody tests of EBV (Epstein-Barr Virus) and CMV (Cytomegalovirus), and a Tilt Table Test for low blood pressure, also known as NMH (Neurally Mediated Hypotension). NMH is viewed as a possible link to CFIDS in a joint study being conducted by the John Hopkins Medical Center and National Institutes of Health.
[Ed note: NMH is not normal "low blood pressure" but is a reflex caused by a sudden drop in blood pressure. It can be caused by low circulating blood volume, pooling of blood in the arms and legs, and/or an inappropriate response to adrenaline. NMH is treated with standard blood pressure regulating medications such as fludrocortisone and/or beta blockers, and many CFIDS patients have reported significant improvement in symptoms after being treated for NMH. Thanks to Linda Clement for this definition!]
CFIDS may be in the limelight, but there are still too many disbelievers, especially medical practitioners. An article that ran in the March 1996 issue of SELF magazine tried to link CFIDS with hypochondria. CFIDS may be a mysterious illness, but PWCs are not hypochondriacs. Many of them were like Anne--active, hard-working, and healthy. Now they live day-to-day, wondering if their CFIDS will ever go away and if they will ever get their lives back.
WHO GETS CFIDS?
Caucasian women seem to be diagnosed more often with CFIDS, with the majority in their 20s-40s. However, CFIDS has been diagnosed in people of all ages and races.
WHAT ARE THE SYMPTOMS OF CFIDS?
The CDC (Centers for Disease Control) has an official list of symptoms for medical practitioners to use when diagnosing CFIDS. Revised in 1994, there are two criteria:
1) Clinically evaluated, unexplained, persistent, or relapsing fatigue for at least six months that is: Of new or definite onset; not the result of ongoing exertion; not substantially alleviated by rest; and results in substantial reduction in previous levels of occupational, educational, social, or personal activities
2) Four or more of the following concurrent symptoms on a persistent or recurrent basis during six or more consecutive months of illness, none of which may predate the fatigue: Self-reported impairment in short-term memory or concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social, or personal activities; sore throat; tender cervical or axillary lymph nodes; muscle pain; multi-joint pain without joint swelling or redness; headaches of a new type, pattern, or severity; unrefreshing sleep; and postexertional malaise lasting more than 24 hours.
(From "Chronic Fatigue Syndrome: New Insights Into An Enigmatic Illness," by Capt. Ceabert J. Griffith, PA-C, Physician Assistant Journal, February 1996 issue)
*Editor's note: Anne is a pseudonym for Jayne herself.