COMMON QUESTIONS (about CFS)
How is CFS diagnosed?
When evaluating patients with chronic fatigue of unknown origin, physicians can use the following definition of CFS as a guide. This updated definition was developed for research use under the leadership of the Centers for Disease Control. It was published in the Annals of Internal Medicine in December of 1994. Because the disease is still poorly understood, however, the outlined criteria should be considered provisional. The definition is as follows:
First, there must be clinically evaluated, unexplained, persistent fatigue of new or definite onset; is not the result of ongoing exertion, not relieved by rest; results in substantial reduction of activities.
In addition, 4 or more of the following symptoms must occur concurrently and which must have persisted for 6 months and must not have predated the fatigue:
1. self-reported short-term memory loss or concentration severe enough to cause substantial reduction in previous levels of activity;
2. sore throat;
3. tender cervical or axillary lymph nodes
4. muscle pain;
5. multijoint pain without joint swelling or redness;
6. headaches of a new type, pattern or severity;
7. unrefreshing sleep;
8. post-exertional malaise lasting more than 24 hours.
What is the difference between 'chronic fatigue' and 'chronic fatigue syndrome?'
Chronic fatigue is tiredness that occurs frequently. Chronic fatigue syndrome is a systemic, organic illness with a wide variety of symptoms. The fatigue that CFS patients experience is so extraordinary that it became the defining element of the disorder.
How is chronic fatigue syndrome related to fibromyalgia syndrome?
Fibromyalgia syndrome is a painful inflammation of connective tissue, and a large percentage of chronic fatigue syndrome patients have received an overlapping diagnosis of fibromyalgia syndrome.
Can CFS be diagnosed through a blood test, brain scan, brain biopsy or any diagnostic test?
There is no blood test, no X-ray and no laboratory test that is diagnostic of CFS yet. Chronic fatigue syndrome is diagnosed by careful history, previous medical record examination, exclusion of certain illnesses, exclusion of primary depression and by following, as carefully as one can, the CDC (Centers for Disease Control) guidelines without adding numerous other symptoms common to many other illnesses.
How long will I be sick?
Symptoms wax and wane. Some medical professionals feel symptoms can peak in 1-3 years in some patients, while others seem to have consistent symptoms that may have several years’ duration. Some patients have been ill for 20 years or more.
Am I contagious?
Most medical professionals do not feel that chronic fatigue syndrome is contagious because so few people who come in contact with a CFS patient become ill also.
Is this related to AIDS?
No. Chronic fatigue syndrome appears to involve an over-active immune system, whereas AIDS involves a suppressed immune system. However, both AIDS and CFS involve inflammation caused by non-pathological organisms.
Is this fatal?
Some patients improve over time, but a very small number have died. CFS is a mysterious illness, but in some rare cases, a general breakdown in immune system functioning results in the inability to battle secondary disease. Severe depression, related to CFS, has resulted in some suicides.
What kind of treatment is available?
Reputable physicians treat symptoms as well as underlying inflammation. When the inflammation can be reduced, symptoms tend to improve. Nutritional supplements as well as rest can be beneficial. Also, credible support groups can provide educational materials to help patients learn to cope with chronic fatigue syndrome.
Caution is advised when seeking treatment from those who offer a quick fix, a cure for CFS.
How is CFIDS related to CFS?
Some patients and patient advocacy groups feel the name, "chronic fatigue syndrome," trivializes the illness. Thus, these groups use the name CFIDS, "chronic fatigue immune dysfunction syndrome." However, the scientific literature refers to the illness as 'chronic fatigue syndrome' (CFS). CFS was designated by a groups of researchers to encompass the chief symptom of the syndrome without implying a causative agent. Medical professionals advise that the name will remain ‘chronic fatigue syndrome’ until research identifies the basic abnormal mechanism.
How important is communication between patients and physicians?
A patient’s optimum health may depend on the quality of the working relationship with the physician. Well-treated patients have a physician who is honest, curious and willing to have patients become partners in their own health care.
If patients do not follow proper nutrition, get adequate rest and conserve their energy levels, they may be decreasing their energy. A physician cannot fix everything. However, a physician who is uninformed or misinformed will not be able to help you at all.
What can individual patients do?
Patients can join a reputable support group, educate themselves about the facts of CFS, become a partner in their health care with their physician, write their local, state and federal government representatives requesting additional funding for research into chronic fatigue syndrome.
Centers for Disease Control: Chronic Fatigue Syndrome Hotline—(404) 332-4555. This hotline has been established to answer questions about the illness.
National Institute of Allergy and Infectious Diseasesof the National Institutes of Health—(301) 402-1663.
Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A and the International Chronic Fatigue Syndrome Study Group. The Chronic Fatigue Syndrome: A Comprehensive Approach to Its Definition and Study. Ann Int Med Dec 1994: p 953-958