Key Takeaways
  • Chronic fatigue syndrome treatment tends to focus on symptom management as there is no cure.
  • Combining various approaches, including medications and lifestyle changes, is usually effective.
  • Support groups and talking to your doctor about your experience can help with coping and improving quality of life.

Chronic fatigue syndrome, or myalgic encephalomyelitis (ME/CFS), causes people to experience severe fatigue and unrefreshing sleep. An estimated 2 million Americans have ME/CFS. Worldwide, about 1% of people likely have ME/CFS, with the disorder occurring more frequently in women.

Also called systemic exertion intolerance disease (SEID) , this condition commonly debilitates people who have the illness, leading to unemployment or requiring a person to spend much of their time in bed. In addition, some people with ME/CFS also experience symptoms other than fatigue, such as pain, sleep troubles, cognitive problems, and exercise intolerance. As a result, many are eager to find a treatment that works. Treatments are aimed at managing and reducing the severity of ME/CFS symptoms, rather than at curing the illness.

Medications

Currently, there are no U.S. Food and Drug Administration (FDA)-approved prescription medications for ME/CFS. However, the FDA is actively seeking research trials for ME/CFS drugs. Also, studies of potential ME/CFS medications are currently underway.

Doctors may first recommend over-the-counter sleep aids or pain medications. Doctors may also recommend nutritional supplements, including vitamins or minerals the doctor suspects a person could benefit from, such as magnesium and vitamin B-12.

When over-the-counter medications and supplements do not adequately lessen ME/CFS symptoms, doctors might prescribe drugs for the disorder. These are considered “off-label” prescriptions, meaning the medications are being prescribed for purposes other than what the FDA originally approved them for, and can include antidepressants, antihistamines, and corticosteroids. The type of medication a doctor prescribes for ME/CFS depends on the specific symptoms a particular person experiences.

Therapy

Medical professionals often recommend cognitive behavioral therapy (CBT) as a treatment for ME/CFS. This recommendation can be controversial, since some experts consider CBT an outdated treatment recommendation and have questioned the designs of previous CBT studies of people with ME/CFS. Others argue that CBT should not be a primary ME/CFS treatment but can help with illness management and associated emotional problems. Some people with ME/CFS also experience anxiety or depression, and therapy can potentially treat those issues and help a person cope with the way ME/CFS impacts their life.

Lifestyle Changes

Medical professionals frequently recommend a variety of lifestyle changes to people with ME/CFS:

  • Gentle Exercise: Exercising may help some people with ME/CFS, but it comes with risks. Too much exercise can trigger discomfort or post-exertional malaise (PEM). Some medical professionals recommend graded exercise therapy (GET), which involves exercising only as much as a person can without triggering post-exertional malaise, then slowly increasing the amount of exercise they engage in over time. Other experts, however, view graded exercise therapy as an outdated treatment that can potentially worsen symptoms.
  • Pacing: The purpose of pacing is to carefully plan and limit activities a person with ME/CFS engages in, so they don’t trigger post-exertional malaise. A person with this illness can pace independently by recognizing what prompts flare-ups and reducing their activity accordingly. Professionals can also help with pacing through adaptive pacing therapy (APT). Some, but not all, people with ME/CFS can handle more activity over time if they pace themselves and avoid flare-ups.
  • Assistive Devices: Certain devices can help with pacing by reducing the amount of energy a person expends. For example, a shower chair allows a person to take a shower without standing for an extended time, and a motorized scooter allows for travel throughout a store without standing. Devices like pedometers and heart rate monitors can also help with pacing by encouraging people to be mindful of the energy they’re using.
  • Decreased Sensory Stimulation: Many people with ME/CFS are more sensitive than average to stimuli, so avoiding certain sensory stimuli helps some people with symptom management. For example, people might wear sunglasses or eye masks to reduce light exposure and earplugs to reduce sound. They may also try to remain in spaces that are free from perfumes or other strong odors.
  • Good Sleep Hygiene: Since ME/CFS often involves sleep difficulties, healthy sleep hygiene practices are essential. Wearing an eye mask and earplugs can help reduce sleep disruptions. Other common sleep hygiene tips involve going to bed and waking up at the same time each day, avoiding electronic devices and large meals before sleep, and keeping the bedroom cool, quiet, and dark.
  • A Healthy Diet: Like everyone, people with ME/CFS might benefit from eating a balanced diet. Ideally, this diet should include a variety of different types of foods, but few that are processed. People with ME/CFS who have gastrointestinal symptoms might find they do better when they avoid certain types of foods, such as spicy foods, caffeine, alcohol, sugar and sugar substitutes, dairy, or gluten.

Alternative or Complementary Medicine

Since there is no standard treatment for ME/CFS, people often consider alternatives to traditional medicine or use non-traditional treatments to complement their other medications. Commonly used alternative and complementary treatments include:

  • Mind-body treatments, like qigong, tai chi, and meditation
  • Massage
  • Homeopathy
  • Supplements, like ginseng and melatonin
  • Light therapy
  • Heating pads or cold packs
  • Acupuncture
  • Trigger point therapy, called myofascial release
  • Chiropractic treatments

Complementary therapies have received mixed results when scientifically studied. Before beginning an alternative or complementary treatment, talk with your doctor to ensure that you aren’t trying something potentially dangerous.

Talking with Your Doctor About Chronic Fatigue Syndrome

If you are experiencing fatigue on an ongoing basis despite getting adequate sleep, talk to your doctor. While you could be facing ME/CFS, many illnesses ranging from obstructive sleep apnea to iron-deficiency anemia can cause fatigue. Your doctor will need to ask questions and order tests to determine what is causing fatigue in your personal situation. Preparing for your appointment can help it go more smoothly.

Keep Track of Your Symptoms and Their Onset

Tracking the frequency, timing, and severity of your symptoms might help your doctor better understand what you’re experiencing. Tracking your activity level and symptoms can also help you draw connections and learn your limits so that you can reduce flare-ups.

When tracking your symptoms, remember to write down everything ailing you, not just fatigue. People with ME/CFS often also have issues with pain, cognition, such as memory and concentration, and sleep. You might also consider keeping a sleep diary, so your doctor can see how well you’re sleeping and determine if sleep might play a role in your symptoms.

Identify Treatments You’ve Tried

In addition to tracking the symptoms you have experienced, keep a list of treatments you have tried. Keep a record of your medications, their dosage, how well they help, and if you experienced side effects. Write a separate list of other treatments you have tried beyond medications and supplements, such as cognitive behavioral therapy, exercise, acupuncture, or meditation.

Have a List of Questions to Ask Your Doctor

Compile a list of questions you would like to ask your doctor so you do not forget anything you want to say. This list might include questions about possible tests, diagnoses, treatments, or medication side effects.

Living with Chronic Fatigue Syndrome

Although experts have not yet found a cure for ME/CFS, many people who have the illness are able to make lifestyle changes and find treatments that allow them to reduce or manage their symptoms. Improvement is possible by living within your limits and working with a doctor to find treatments that help you. There are also many ME/CFS support groups both online and in-person. Meeting with such a group might prove to be helpful.

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References
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