Fact: There is no test for CFS and there is not yet a cure
What is Chronic Fatigue Syndrome?
Chronic fatigue syndrome, or CFS, is a devastating and complex disorder. People with CFS have overwhelming fatigue and a host of other symptoms that are not improved by bed rest and that can get worse after physical activity or mental exertion. They often function at a substantially lower level of activity than they were capable of before they became ill.
Besides severe fatigue, other symptoms include muscle pain, impaired memory or mental concentration, insomnia, and post-exertion malaise lasting more than 24 hours. In some cases, CFS can persist for years.
There are several case definitions for CFS and all require fatigue as one of the symptoms. CDC uses the 1994 CFS case definition, which requires meeting three criteria:
- The individual has had severe chronic fatigue for 6 or more consecutive months and the fatigue is not due to ongoing exertion or other medical conditions associated with fatigue (these other conditions need to be ruled out by a doctor after diagnostic tests have been conducted)
- The fatigue significantly interferes with daily activities and work
The individual concurrently has 4 or more of the following 8 symptoms:
- post-exertion malaise lasting more than 24 hours
- unrefreshing sleep
- significant impairment of short-term memory or concentration
- muscle pain
- pain in the joints without swelling or redness
- headaches of a new type, pattern, or severity
- tender lymph nodes in the neck or armpit
- a sore throat that is frequent or recurring
These symptoms should have persisted or recurred during 6 or more consecutive months of illness, and they cannot have first appeared before the fatigue.
Scientists don't know exactly what causes chronic fatigue syndrome. It may be a combination of factors that affect people who were born with a predisposition for the disorder.
Some of the factors that have been studied include:
- Viral infections. Because some people develop chronic fatigue syndrome after having a viral infection, researchers question whether some viruses might trigger the disorder.
Suspicious viruses include Epstein-Barr virus, human herpes virus 6 and mouse leukemia viruses. No conclusive link has yet been found.
- Immune system problems. The immune systems of people who have chronic fatigue syndrome appear to be impaired slightly, but it's unclear if this impairment is enough to actually cause the disorder.
- Hormonal imbalances. People who have chronic fatigue syndrome also sometimes experience abnormal blood levels of hormones produced in the hypothalamus, pituitary glands or adrenal glands. But the significance of these abnormalities is still unknown.
Tests and diagnosis
There's no single test to confirm a diagnosis of chronic fatigue syndrome. Because the symptoms of chronic fatigue syndrome can mimic so many other health problems, you may need patience while waiting for a diagnosis.
Your doctor must rule out a number of other illnesses before diagnosing chronic fatigue syndrome. These may include:
- Sleep disorders. Chronic fatigue can be caused by sleep disorders. A sleep study can determine if your rest is being disturbed by disorders such as obstructive sleep apnea, restless legs syndrome or insomnia.
- Medical problems. Fatigue is a common symptom in several medical conditions, such as anemia, diabetes and underactive thyroid (hypothyroidism). Lab tests can check your blood for evidence of some of the top suspects.
- Mental health issues. Fatigue is also a symptom of a variety of mental health problems, such as depression, anxiety, bipolar disorder and schizophrenia. A counselor can help determine if one of these problems is causing your fatigue.
To meet the diagnostic criteria of chronic fatigue syndrome, or myalgic encephalomyelitis, you must have unexplained, persistent fatigue for six months or more, along with at least four of the following signs and symptoms:
- Loss of memory or concentration
- Sore throat
- Enlarged lymph nodes in your neck or armpits
- Unexplained muscle pain
- Pain that moves from one joint to another without swelling or redness
- Headache of a new type, pattern or severity
- Unrefreshing sleep
- Extreme exhaustion lasting more than 24 hours after physical or mental exercise
Management of CFS
Managing chronic fatigue syndrome can be as complex as the illness itself. There is no cure, no prescription drugs have been developed specifically for CFS, and symptoms can vary a lot over time.
Thus, people with CFS should closely monitor their health and let their doctor know of any changes; and doctors' should regularly monitor their patients' conditions and change treatment strategies, as needed.
A team approach that involves doctors and patients is one key to managing CFS. Patients benefit when they can work in collaboration with a team of doctors and other health care practitioners, who might include rehabilitation specialists, mental health professionals, and physical or exercise therapists. Together, they can create an individualized treatment program that best meets the needs of the patient with CFS. This program should be based on a combination of therapies that address symptoms, coping techniques, and managing normal daily activities.
Home treatment is the most important part of treating chronic fatigue syndrome (CFS). You can take steps to control and sometimes relieve your CFS symptoms:
- Adjust your schedule to take advantage of times when you have more energy and feel less tired. Keep a diary for a week or so. Write down the times of day when you have energy and when you are tired. If there is a pattern to how your energy level changes during the day, try to plan your work, school, or other activities around that pattern.
- Do what you can to take charge of your fatigue level. Try not to do too much when you have more energy. If you do too much, you may become overtired. And it may take several days for you to recover.
Improve your sleep habits. Sleep problems may add to your fatigue and other symptoms.
- Go to bed only when you are sleepy. Get up at the same time every day, whether or not you feel rested.
- If you lie awake for longer than 15 minutes, get up, leave the bedroom, and do something quiet until you feel sleepy again.
- Avoid alcohol, caffeine, and tobacco well before bed. Alcohol can disrupt your sleep when you drink it within 4 hours of bedtime. Caffeine is a stimulant that stays in the body for 12 hours. So make sure to avoid it during that block of hours before your bedtime.
- Keep the bedroom at a comfortable temperature. Get rid of all sound and light disturbances.
- Make sure your mattress provides good support. Use a neck support pillow to keep your head and neck from moving too much when you sleep.
- Take naps if you need to. Keep them short (20 to 60 minutes). And try not to take them late in the day or evening
- Get light, gentle exercise regularly. Stretching is a good start. Light aerobic exercise such as walking, swimming, or riding a bicycle or stationary bike can also be helpful. Try to keep a balance between being active enough to benefit from it and exercising so much that you become overtired.
- Try taking nonprescription pain medicines to relieve muscle and joint pain and headaches caused by CFS. Medicines that may be helpful include acetaminophen (such as Tylenol), ibuprofen(such as Advil or Motrin), and naproxen(such as Aleve). Be safe with medicines. Read and follow all instructions on the label. Talk to your doctor if your pain is not relieved by nonprescription medicine.
- Join a support group. These groups can be a good source of information and tips for managing your illness. They also give you a chance to share your frustrations and problems with others who have CFS. Ask your doctor or contact a local hospital for the location of a support group near you.
- Eat a balanced diet. Include plenty of fruits, vegetables, grains, cereals, legumes, poultry, fish, lean meats, and low-fat dairy products.
Try to be patient. Keep in mind that daily home treatment usually helps relieve or control CFS symptoms. Your doctor may suggest cognitive-behavioral therapy to help you with your home treatment.
Information on this page taken directly from:
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The following are organizations and/or websites dedicated to providing information and education surrounding Chronic Fatigue Syndrome. These organizations are dedicated to research, education, awareness, and/or support. They are listed in Alphabetical order without any preference or prejudice. Listing these organizations is not a recommendation or referral in any regard for seeking treatment or consultation or support for treatment.
Solve ME/CFS Initiative