Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic illness that causes extreme tiredness that doesn’t improve with rest. It often gets worse after physical or mental activity. It can make daily tasks difficult. In some cases, even getting out of bed can feel impossible.

With fatigue, symptoms feel like you have the flu. They can come and go, varying in intensity over time. Treatment options are available to manage ME/CFS.

Symptoms of ME/CFS

ME/CFS symptoms include:

• Severe fatigue that doesn’t get better with rest or sleep
• Difficulty sleeping (falling or staying asleep)
• Headaches
• Joint pain
• Muscle aches
• Trouble with thinking, attention, concentration and memory

Other symptoms include:

• Dizziness and fainting
• Chills
• IBS, painful bloating, gas, constipation and diarrhea
• Mood swings and irritability
• Night sweats
• Swollen lymph nodes
• Tingling or numbness in your feet, hands or face
• Vision problems
• Weakness

Symptoms differ widely from person to person. They usually last for six months or longer. They may worsen after physical activity or mental effort. This is known as post-exertional malaise.

Myalgic encephalomyelitis/chronic fatigue syndrome causes

The exact cause of ME/CFS isn’t known. But studies show that these might be involved:

• Immune system changes: Like some autoimmune conditions, ME/CFS may cause your immune system to attack healthy parts of your body by mistake.
• Problems with energy production: Your cells may have trouble converting food into energy, leaving less fuel for your brain and muscles.
• Genetic factors: This condition may run in biological families. This might mean it’s a genetic condition. More research is needed to identify the specific gene involved.

Research suggests the infections might trigger or cause a flare-up of symptoms:

• Epstein-Barr virus
• Ross River virus
• C. burnetti
• COVID-19

Stress (physical or emotional) may also trigger symptoms.

Risk factors of ME/CFS

While anyone can develop this condition, it’s more common among:

• Adults (ages 40 to 60)
• Adolescents (ages 10 to 19)
• Females

Complications of ME/CFS

The fatigue from ME/CFS makes daily activities hard to do. Things like completing your routine or having the energy to get through the work or school day can be very difficult. You may need to make changes or ask for help to adjust to these symptoms.

ME/CFS can also lead to mental health challenges, like depression and anxiety. If you’re feeling down or overwhelmed, talk to a healthcare provider. There are treatments available that can help you feel better.

How doctors diagnose ME/CFS

Healthcare providers diagnose ME/CFS after a physical exam, neurological exam and mental health evaluation. There’s no single test for ME/CFS. But lab tests, like blood or urine tests, can help rule out other conditions with similar symptoms.

The diagnostic criteria for ME/CFS, or the things that your physician will look for during an exam, include:

• Severe fatigue that lasts at least six months (it doesn’t improve with rest or sleep)
• Difficulty getting restful sleep
• Fatigue that gets worse after mental or physical activity
• Trouble sitting up without feeling symptoms (orthostatic intolerance) and/or problems with thinking or memory (cognitive function)

Getting a diagnosis can take time. Your doctor may need to run multiple tests, but not all at once. That process can be frustrating, especially when you’re already not feeling well. But try to stick with it. A clear diagnosis is the first step toward treatment that’s tailored to your body’s needs.

How is myalgic encephalomyelitis/chronic fatigue syndrome treated?

Treatment for ME/CFS may include:

• Changing your sleeping habits: You can try sticking to a regular sleep schedule, avoiding long naps, limiting electronics in the bedroom, and steering clear of caffeine and alcohol before bed.
• Taking medications: Medications may be recommended for pain, depression, infections, immune support or fatigue. Research into new treatments is ongoing.
• Pacing activities: Pacing is a technique that helps you balance activities and rest to avoid symptom flare-ups. Work with your provider to find your limits and plan around them to prevent getting too tired.

When should I see my healthcare provider?

If you have ME/CFS symptoms, contact a healthcare provider, especially if the symptoms last six months or more. They’ll evaluate your symptoms and create a treatment plan to help you feel better.

If you’re undergoing treatment, your doctor will schedule regular check-ins. This is to make sure treatment is working well and you don’t have any side effects. Let them know if you have any questions or concerns.

What can I expect if I have ME/CFS?

There’s no cure for ME/CFS. But your care team can help manage symptoms with treatments that fit your lifestyle. While many people see improvement, some may not return to their previous level of health or activity. The condition affects everyone differently.

Making routine changes isn’t easy, and sticking with them can be tough. Your physician may recommend cognitive behavioral therapy (CBT) to help you cope and support your mental well-being as you adjust.

What is the life expectancy of someone with myalgic encephalomyelitis?

Life expectancy with ME/CFS can vary. Some people live a typical lifespan, while others may have a shorter one. Research suggests a higher risk of suicide, often linked to mental health challenges.

If you have concerns about your future, talk to your physician. They can give you the most up-to-date information on your case.