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Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Care Instructions

Your Care Instructions

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).

Follow-up care is a key part of your treatment and safety. Be sure to make and go to all appointments, and call your doctor or nurse call line if you are having problems. It's also a good idea to know your test results and keep a list of the medicines you take.

How can you care for yourself at home?

  • Manage your activity so that you can be as active as possible without causing your symptoms to get worse. Focus on not pushing 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, use eye masks or 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 counselling. It can help you learn to cope with ME/CFS. It may also help to work with a professional counsellor who understands ME/CFS.

When should you call for help?

Watch closely for changes in your health, and be sure to contact your doctor or nurse call line if:

  • Your fatigue continues to get worse.
  • You do not get better as expected.

Where can you learn more?

Go to https://www.healthwise.net/patientEd

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Care instructions adapted under license by your healthcare professional. If you have questions about a medical condition or this instruction, always ask your healthcare professional. Healthwise, Incorporated disclaims any warranty or liability for your use of this information.