Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

What is myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)?

From: MedlinePlus, National Library of Medicine

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, long-term illness that affects many body systems. Another name for it is chronic fatigue syndrome (CFS). ME/CFS can often make you unable to do your usual activities. Sometimes you may not even be able to get out of bed.

What causes myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)?

From: MedlinePlus, National Library of Medicine

Researchers don't yet know what causes ME/CFS. There may be more than one potential cause. It is also possible that two or more triggers might work together to cause the illness.

Researchers are studying many possible causes, including:

• Infections
• Immune system changes
• Physical or emotional stress
• Changes in the way cells in the body get their energy
• Genetics; the illness can sometimes run in families

Who is more likely to develop myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)?

From: MedlinePlus, National Library of Medicine

Anyone can get ME/CFS, but it is most common in people between 40 and 60 years old. Adult women are more likely to develop it than adult men.

What are the symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)?

From: MedlinePlus, National Library of Medicine

The primary, or core, symptoms of ME/CFS are:

Along with the primary symptoms, to be diagnosed with ME/CFS, you need to have one or both of these symptoms:

Some of the other symptoms that ME/CFS can cause include:

ME/CFS can be unpredictable. Your symptoms may come and go. They may change over time; sometimes they might get better, and other times they may get worse.

• Not being able to do activities that you used to do before the illness, along with severe fatigue. The fatigue must last six months or longer, and it is not improved by rest.
• Post-exertional malaise (PEM), which means that your symptoms get worse after any physical or mental activity.
• Sleep problems.
• Problems with thinking and memory.
• Worsening of symptoms while standing or sitting upright. This is called orthostatic intolerance. It can cause you to feel lightheaded, dizzy, weak, or faint while standing or sitting up.
• Pain, including muscle pain, joint pain, and headaches
• Sore throat
• Tender lymph nodes (glands) in the neck or armpits
• Digestive issues, like irritable bowel syndrome
• Chills and night sweats
• Allergies and sensitivities to foods, odors, chemicals, light, or noise

How is myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) diagnosed?

From: MedlinePlus, National Library of Medicine

ME/CFS can be difficult to diagnose. There is no specific test for ME/CFS, and other illnesses can cause similar symptoms. Your health care provider has to rule out other diseases before making a diagnosis of ME/CFS.

Your provider will do a thorough medical exam, which will include:

• Asking about your medical history and your family's medical history.
• Asking about your current illness, including your symptoms. Some questions they may ask could include how often you have symptoms, how bad they are, how long they have lasted, and how they affect your life.
• Thorough physical and mental status exams.
• Blood, urine, or other tests to check for other illnesses which could be causing your symptoms.

Your provider may also ask you to see a specialist to check for other conditions which can cause similar symptoms.

What are the treatments for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)?

From: MedlinePlus, National Library of Medicine

There is no cure or approved treatment for ME/CFS, but you may be able to treat or manage some of your symptoms.

You, your family, and your provider should work together to decide on a plan. You should figure out which symptom causes you the most problems and try to treat that first. For example, if sleep problems affect you the most, you might first try using good sleep habits. If those do not help, you may need to take medicines or see a sleep specialist.

Strategies such as learning new ways to manage activity can also be helpful. You need to make sure that you do not "push and crash." This can happen when you feel better, do too much, and then get worse again.

When you have ME/CFS, it can be hard to help develop a treatment plan. It can also be difficult to try to take care of yourself. So it's important that you have support from family members and friends.

There are also various resources and strategies that might be helpful to you, such as:

• Getting counseling to help you cope with the illness and its impact on your life.
• Eating a healthy diet.
• Nutritional supplements, if your provider suggests them.
• Complementary therapies such as meditation, gentle massage, or relaxation therapy.

Make sure to talk to your provider before you try any new treatments. Some treatments that are promoted as cures for ME/CFS are unproven, often costly, and could be dangerous.

Which doctor should you see?

The suggested department for discussing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is Neurology, with a neurologist as the relevant type of clinician. General physician / Family Medicine; paediatrician for children. Referral depends on symptoms.

This is an editorial referral starting point. The appropriate clinic depends on the person’s age, symptoms, previous diagnosis and local services. The first clinician can decide whether another specialty or a team is needed; a department label does not confirm the diagnosis.

How to prepare for an assessment

Bring a short timeline of the main symptoms: when they first appeared, whether they are constant or episodic, what seems to change them, and how they affect daily activities. Include previous reports, discharge summaries, current medicines and supplements, allergies, and any relevant family history. A dated record is more useful than trying to match every feature in an online article.

Ask the clinician what is already established and what remains uncertain. If a test is suggested, ask what question it answers, what its limitations are and how the result would change the next step. The information here is not an instruction to arrange every possible test. In children, bring growth, developmental and school information if it is relevant to the concern.

• Which nervous-system findings help explain the symptoms?
• Would an assessment of walking, communication or daily function be helpful?
• Are rehabilitation or other specialist services relevant?

Treatment discussions and follow-up

Where the source describes treatments, these are an overview of possible care, not a prescription for an individual. Ask which option applies to the confirmed diagnosis, what benefit is expected, what adverse effects to watch for and how progress will be assessed. Availability, approvals and local practice can differ from the country described in the source.

Before leaving the appointment, clarify the next review date, who will communicate results, and whom to contact if the situation changes. Discuss difficulties with sleep, work, school, mobility, eating or emotional wellbeing when these are relevant. Practical support may require coordination between the treating clinician and other services.

When to seek emergency help

Severe breathing difficulty, collapse, new stroke-like symptoms, a seizure that is prolonged or repeated without recovery, uncontrolled major bleeding, or an immediate risk of self-harm require emergency help. In India, call 112 or reach the nearest emergency department. This is a general, non-exhaustive warning list; it is not a condition-specific triage tool.