What is myalgic encephalomyelitis/chronic fatigue syndrome?

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disease that causes you to feel so ill that you can't do your normal daily activities. Sleeping problems occur along with extreme fatigue that doesn't get better with rest. Any kind of activity often makes your symptoms worse. This is called post-exertional malaise. You may have other symptoms like problems with thinking.

How severe ME/CFS is varies from person to person.

Your doctor can prescribe medicines that can help ease your symptoms. Your doctor can also help you learn to manage your energy. This can help you be as active as possible without overdoing it and causing your symptoms to get worse.

Another name for this condition is systemic exertion intolerance disease (SEID).

ME/CFS may come upon you gradually or all of a sudden. It is hard to say what is normal with ME/CFS. That's because the diagnosis often is not clear for some time.

In general, most people with ME/CFS:

• Feel that the illness doesn't improve over time.
• Report that symptoms are always present. But from day to day, symptoms may be better or worse.

But some people with ME/CFS may:

• Feel that the illness gets worse over time.
• Notice that their symptoms go away completely and then return.
• Notice that their symptoms get better with treatment, but they don't return to feeling as well as they did before the illness.

Most people with ME/CFS find that their symptoms greatly reduce their ability to do the things they want and need to do. But ME/CFS is different for everyone. Symptoms are worse for some people than for others.

Symptoms can vary with ME/CFS. If you have ME/CFS, you have extreme fatigue that doesn't get better with rest. Your symptoms often flare up after mental or physical activity. You also have problems sleeping and wake up feeling not rested. It may be harder for you to think clearly, concentrate, and remember things.

There isn't a cure yet for ME/CFS. So the keys to living with ME/CFS are learning how to pace your activities and treating your symptoms. Find a primary doctor who understands ME/CFS, knows how to treat it, and helps you feel supported.

A good relationship with your doctor is important. That's because the two of you will need to work together to find a mix of medicines and behavior changes that will help you get better. Some trial and error may be needed. That's because no single combination of treatments works for everyone.

Treat the worst symptom first

Start by listing your worst symptoms—the ones that make it hardest to get through the day. With your doctor, focus first on treating those symptoms. Decide whether a specialist might be helpful for any of them.

The most common ME/CFS symptoms can also be the most treatable.

Symptoms worse after activity (post-exertional malaise).

Learning how to manage your activity can help you be as active as possible without causing your symptoms to get worse. This includes:

• Estimating how much energy you have on a given day. This is sometimes called your "energy envelope." You spend only that much energy, and not more.
• Estimating how much energy an activity takes and how long you can do that activity. You stop when you reach that time, and then take a break.
• Not pushing yourself to get more done on days you feel well.
• Adapting activities to make them easier. One example is sitting down while doing the dishes.

Sleep.

Good sleep habits can help improve the quality of your sleep. If you also try medicine for sleep, it's best to start on a low dose. Certain antidepressants help with sleep, mood, and chronic pain, so your doctor may suggest trying one.

Feeling dizzy or weak while sitting or standing (orthostatic intolerance).

Your doctor may have you wear pressure stockings, put your legs up while sitting, or increase your salt intake. Your doctor may also suggest medicines like fludrocortisone or midodrine.

Pain.

Different kinds of pain can be treated in different ways. If one treatment doesn't work, you and your doctor can try another until you find what works best for you.

• It's important to control focused pain, such as arthritis or migraine. This kind of pain can make ME/CFS body pain worse. First try an over-the-counter pain reliever, like acetaminophen (such as Tylenol), ibuprofen (such as Advil or Motrin), or naproxen (such as Aleve). Be safe with medicines. Read and follow all instructions on the label.
• There are different types of prescription medicines that help with pain, such as antidepressants or anticonvulsants for chronic pain.
• Other treatments that can help with ME/CFS pain include acupuncture or massage. Yoga may also help. Look for a gentle form of yoga. It may be best to start off with short sessions at home.

Cope with depression, anxiety, and distress

When you have ME/CFS, you may not be able to do the things you would like to do. This may lead to feelings of frustration and anxiety. It can also lead to depression. Depression is not the same thing as ME/CFS. But it can make your ME/CFS symptoms worse.

• Work with your doctor to watch for signs of depression.
• If your doctor suggests an antidepressant, ask if there is one that can help control your pain and help you sleep, as well as improve your mood.
• For support and help with mood problems, you can also work with a professional counselor who understands ME/CFS.

An ME/CFS support group can be a good source of information and tips for managing your illness. It also gives you a chance to share your frustrations and problems with others who have ME/CFS.

Get the care you need

Visit your doctor every few months to help track your symptoms and check for any need to change your treatment.

Get specialized care if you need it. For example:

• A rehabilitation specialist can help you treat pain and improve your ability to do your daily tasks.
• A pain management specialist can offer a number of pain treatments.

Sign "release of information" forms so that your doctors can work together as a team.

Doctors use a specific list of symptoms to diagnose ME/CFS. Sometimes they may have you track your symptoms, activity, and rest in a diary. Since symptoms of ME/CFS can be similar to other conditions, doctors may do additional tests to confirm a diagnosis of ME/CFS. Or they may use a variety of tests to rule out other conditions.

Criteria for diagnosing ME/CFS

To be diagnosed with ME/CFS, you must have all of these symptoms:

• Major decrease in your ability to do the things you did before you got sick—including work, school, social, or personal activities—that has continued for more than 6 months.
• Worsening of symptoms after being mentally or physically active (post-exertional malaise).
• Sleep problems, including not feeling rested after sleeping (unrefreshed sleep).
• Extreme fatigue that is:
  • New or has not been a life-long problem.
  • Not caused by being active for a long period of time.
  • Not much better after resting.

You must also have one or more of these symptoms:

• Problems with concentration, short-term memory, or using the correct word (cognitive impairment).
• Feeling dizzy or faint while standing or sitting upright that gets better when you lie down (orthostatic intolerance).

Tests to confirm a diagnosis of ME/CFS

Other conditions can cause symptoms similar to ME/CFS, so your doctor may do more tests to confirm the diagnosis. These may include:

Orthostatic testing.

Tests may be done to see if you have symptoms after being upright for long periods of time.

Neuropsychological testing.

This may be done to see if you are having problems with your ability to think, concentrate, or remember.

Cardiopulmonary exercise test (CPET).

This may be done to see if you recover after physical activity. Often the test is done and repeated about 24 hours later.

Tests to rule out other conditions

Other tests, such as blood or urine tests, may be done to rule out other conditions. And based on your symptoms, the doctor may do additional tests to look for signs of a chronic infection, autoimmune disease, or low levels of hormones.

Medicines don't cure ME/CFS. But they can help relieve your symptoms.

Over-the-counter (OTC) medicines.

You might take over-the-counter pain relievers and anti-inflammatory drugs. They include acetaminophen (such as Tylenol), ibuprofen (such as Advil or Motrin), and naproxen (such as Aleve). They sometimes relieve joint and muscle pain, headaches, and fevers. Be safe with medicines. Read and follow all instructions on the label. Talk to your doctor if your pain isn't helped by OTC medicine.

Prescription medicines.

These include:

• Anticonvulsants, also called antiseizure medicines. This type of drug, such as gabapentin or pregabalin, is sometimes prescribed for pain and sleep problems. It seems to work best when used for nerve pain.
• Antidepressants. These are prescribed to ease depression, anxiety, and pain. They may also help you concentrate more and sleep better.
• Other medicines, such as fludrocortisone or midodrine. These may help you feel less dizzy or weak when sitting up or standing after lying down.

While there are doctors who specialize in the treatment of ME/CFS, it is always wise to start with your family doctor and learn as much as you can about the illness.

Depending on your symptoms, your family doctor may refer you to a specialist like a physiatrist, rheumatologist, neurologist, pain management specialist, or cardiologist.

It's common to also have depression or anxiety along with a chronic condition like ME/CFS. So you may also be referred to a psychologist, or psychiatrist for treatment.

Here are some steps you can take to control and sometimes relieve your ME/CFS symptoms.

• Manage your activity so that you can be as active as possible without causing your symptoms to get worse.
  • Stay within your energy envelope. This is the amount of energy you have to spend in a day. For each activity you want to do, think about how much energy it will take. This can help you manage your day so that you don't spend too much or too little energy.
  • Pace yourself. Have a plan for how long you will do an activity before you take a break. Don't push yourself to get more done on days you feel well. During and between activities, take rest breaks often. This takes practice. You may find that keeping a diary or using a fitness tracker to track your activities helps.
• If you have problems sleeping, try to improve your sleep habits.
  • Avoid drinking or eating anything with caffeine after 3 p.m. This includes coffee, tea, cola drinks, and chocolate.
  • Make sure your bedroom is not too hot or too cold, and keep it quiet and dark.
  • Avoid watching TV or using your cell phone, tablet, or computer before bed.
  • Make sure your mattress provides good support.
  • Take naps if you need to. Keep them short, no more than 1 hour, and try not to take them late in the afternoon.
• If you have problems with your ability to think, remember, or concentrate, you may try finding ways to simplify your daily tasks. For example, have one spot you always put your keys and write down things you need to remember. Also make sure to pace any mental activities like phone calls or reading and writing emails.
• If you are sensitive to certain foods or chemicals, sound, or light, you may try to avoid those things. Some people may find it helpful to modify their diet and to use eye masks, sunglasses, or earplugs.
• Consider joining a support group with other people who have ME/CFS. These groups can be a good source of information and tips for what to do to feel better. Your doctor can tell you how to contact a support group.
• Consider going to counseling. It can help you learn to cope with ME/CFS. It may also help to work with a professional counselor who understands ME/CFS.

Along with daily self-care and the treatment you get from your doctor, you might find that other treatments help too.

There are safe nontraditional treatments that can relieve pain and stress, ease muscle tension, and help you feel better and healthier.

Some popular complementary treatments include:

• Acupuncture.
• Massage therapy.
• Mind-body techniques like mindfulness, meditation, and yoga.

Some types of yoga may be very intense and cause your symptoms to worsen. Look for a gentle form of yoga. It may be best to start off with short sessions at home so that you can take breaks.

Some people may try different diets, vitamins, or supplements to help manage their symptoms. Talk with your doctor before you try a new diet, vitamin, or supplement. And pay attention to how your body and symptoms respond to it. You can work closely with your doctor to figure out what works best for you.

Doctors don't know what causes ME/CFS. It seems to follow after a flu-like illness. High stress may also lead to ME/CFS for some people. And changes in a person's immune system may also play a role. It's likely that a number of factors or triggers come together to cause ME/CFS.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disease that causes you to feel so ill that you can't do your normal activities. Sleeping problems occur along with extreme fatigue that doesn't get better with rest. Any kind of activity often makes your symptoms worse. You may have other symptoms like problems with thinking.

Two techniques can help you manage your energy when you have ME/CFS. They are:

• Staying within your energy envelope.
• Pacing yourself.

These techniques can give you better control over your symptoms so that you can be as active as possible. They may also lead to fewer times when you feel so ill that you can't do anything at all. This worsening of symptoms is called post-exertional malaise. People who have ME/CFS often call it a "crash."

Staying in your energy envelope

You can think of the amount of energy you have to spend in a day as your "energy envelope." You stay within your energy envelope when you use about the same amount of energy as you have in a day—not more and not less.

Pacing yourself

With pacing, you plan your activities so that you can rest when you need to. No matter what kind of activity you are doing—physical, mental, social—you stop to rest. Have a plan for how long you will do the activity before you take a break (for example, every 15 minutes). Even if you are still feeling well, it is important to still stop and rest. It may help to set an alarm so that you don't lose track of time.

Putting it all together

Using these two techniques can be hard to do. When you are having a good day, it's tempting to overdo it. But if you do too much in a day or force yourself to keep going when your body needs rest, you could then crash and need several days to recover.

But with practice, it will get easier. Soon you'll get better at knowing how much you can do in a day and when you need to rest, so you can do more of what you want to do.