Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has no cure and no approved treatment. Its cause is unknown, and it affects people differently, so there is no one-size-fits-all plan. But some symptoms can be treated or managed, and that can bring relief and a better quality of life — though no strategy works for everyone.
Image from CDC's page on managing ME/CFS.
Start with the worst symptom
People with ME/CFS, their families and their healthcare providers should decide together which symptom causes the most trouble, and treat that first. Before starting, they should talk through the possible benefits and harms of each option, medicines and other therapies alike. Providers also need to support families as they learn to live with a life-altering illness — a process that can be extremely hard for the person who has it.
Post-exertional malaise and pacing
Post-exertional malaise (PEM) is a worsening of symptoms after exertion. It can start soon after, or days later — typically 12 to 48 hours after an activity — and can last days or weeks.
The main tool is pacing, or activity management: balancing activity and rest to avoid flare-ups.
- Find your limits. People with ME/CFS have their own limits for physical and mental activity. Activity and symptom diaries help find them, especially early on. Staying within them is sometimes called staying inside the "energy envelope."
- Watch everyday tasks. Shopping for groceries, brushing teeth or talking with people can be enough to bring on a crash. Monitoring activity through the day allows limits to be set when needed.
- Resist the "push." On a good day it's tempting to do more to make up for lost time — which often leads to a crash, and the cycle repeats.
- Make tasks easier. Sit while doing laundry or showering, take frequent breaks, and split big tasks into small steps. Rehabilitation specialists or exercise physiologists who understand ME/CFS can help.
- Use a heart rate monitor. Some people find it helps them see how hard their body is working. Those who learn to listen to their bodies may be able to do more over time.
Exercise is not a cure. Vigorous aerobic exercise helps many chronic illnesses, but people with ME/CFS don't tolerate it, and standard exercise advice for healthy people can harm them. Activities they can tolerate still matter. Because PEM is unpredictable, every plan should be tailored to the person, with their input.
Symptom by symptom
| Symptom | What can help |
|---|---|
| Unrefreshing sleep — trouble falling or staying asleep, extreme sleepiness, vivid dreams, restless legs, night-time muscle spasms | Good sleep habits first; then over-the-counter sleep aids, then a prescription, at the smallest dose for the shortest time. If sleep is still unrefreshing, see a sleep specialist — conditions like sleep apnea and narcolepsy usually respond to therapy, though ME/CFS symptoms may not all go away |
| Pain — deep muscle and joint pain, pressure-like headaches, skin sore to the touch | Talk to a provider before any medicine. Over-the-counter acetaminophen, aspirin or ibuprofen first; then possibly a pain specialist. Counseling can teach new ways to cope. Stretching and movement therapies, gentle massage, heat, toning exercises and water therapy may help, and acupuncture by a licensed practitioner helps some |
| Depression, stress and anxiety | Should be treated. Antidepressants and anti-anxiety medicines help some, but must be prescribed with caution because some worsen other ME/CFS symptoms. A mental health professional may help. Deep breathing, muscle relaxation, massage, stretching, yoga and tai chi can reduce stress |
| Dizziness and lightheadedness (orthostatic intolerance) — worse when standing or sitting up; also blurred vision or spots, weakness, a fluttering, skipping, racing or pounding heart | Providers check heart rate and blood pressure and may refer to a cardiologist or neurologist. If there's no heart or blood vessel disease: more fluids and salt, and support stockings; prescription medicine if symptoms persist |
| Memory and concentration problems | Organizers and calendars. Stimulants used for ADHD may improve concentration for some, but can trigger the push-and-crash cycle |
More help
CDC's ME/CFS patient toolkit helps patients and families prepare for healthcare visits, and its guidance for providers covers treating the most disruptive symptoms first.
Sources
Based on "Manage ME/CFS," Centers for Disease Control and Prevention; a work of the United States government in the public domain.
Licence: CC0 1.0 (public domain) · Adapted from www.cdc.gov
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