HealthInfo Waitaha Canterbury
Diagnosing & self-care for ME/CFS
Whakatau me tiaki ake i a koe i te ME/CFS
Diagnosing myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can be difficult because the symptoms of ME/CFS are similar to several other medical conditions, which need to be ruled out first. There are no specific tests available to diagnose ME/CFS yet.
Your doctor will ask you about your symptoms and how they affect your life, including work or school. They may ask you to keep an activity diary to identify any patterns between your activity and symptoms.
For your doctor to diagnose you with ME/CFS, you need to have the following key symptoms:
- Much less ability to do the kinds of activities that were normal before the illness, along with fatigue. It must last six months in adults and three months in children.
- Post-exertional malaise (PEM) – your symptoms get much worse after doing physical or mental work. You might feel as if you have the flu. It's often delayed, happening 12 to 48 hours after the activity, and recovery is much slower than normal.
- Sleep problems, especially unrefreshing sleep.
And either:
- Cognitive performance problems – it's hard to think quickly or concentrate.
- Orthostatic intolerance – your symptoms get worse when standing or sitting upright. You might feel light-headed, dizzy or weak. Your heart might beat faster, or your blood pressure might drop.
Self-care for ME/CFS
Currently there is no specific treatment for ME/CFS. But managing your activity level, good self-care and getting help with symptoms can improve your quality of life. Consider trying the following things:
- Learn about ME/CFS and consider joining a local or online support group.
- Be aware that exercise doesn't cure ME/CFS. If you get post-exertional malaise, you need to reduce your activity level enough to limit your chances of getting PEM. It helps to keep an activity and symptom diary for a while to find the right level for you and to identify any patterns. Be aware that your level can change from day to day.
- Use your energy wisely, as your energy store is limited. Plan your activities, prioritising the things that are important to you. Plan rest before and after a more energy consuming activity such as a social event.
- Prepare for periods of PEM so you can look after yourself and those who depend on you. Have a plan – who will walk the dog, prepare meals or help you to the bathroom. Keep healthy snacks, water and a phone charger by your bed.
- Ask for support. Many people with ME/CFS cannot work or go to school. If you cannot work or can only work reduced hours, talk to your general practice team about income support and workplace accommodations. If children are struggling to attend school, talk to your school and general practice team about options for distance education or taking a break.
- If orthostatic intolerance is a problem, drink plenty of fluids. Some people may find compression clothing helpful.
- There may be times when your body needs to sleep a lot more than normal. There is no evidence that this is harmful but make sure you drink and eat enough at these times.
- Let your whānau (family) know that their practical and emotional support can make a big difference to your quality of life. Do ask for help.
Medication and other help for ME/CFS
Some medications are useful for treating the symptoms of ME/CFS.
Over-the-counter pain relief may help ease headaches as well as muscle and joint pain. Your doctor may prescribe stronger pain relief, although they should only be used short-term.
Medication for sleep may be helpful if you have problems getting to sleep or staying asleep.
Medication for orthostatic intolerance may be helpful if being upright is causing you problems.
Medication may be useful if you're experiencing depression or anxiety as a result of living with ME/CFS, and other approaches such as counselling and support from a patient group have not helped.
If you cannot get outside much, talk to your GP about getting the right amount of vitamin D.
As well as your GP, people who can help with ME/CFS include:
- MECFS Canterbury – a patient support group that provides education, assistance and advocacy for people with ME/CFS and their whānau (families).
- Psychologists and counsellors – can help you find ways to come to terms with the loss and disability of ME/CFS.
- Dietitians – if you're losing weight or having difficulty with food intolerances and digestive system symptoms.
- Occupational therapists – can provide access to equipment such as shower stools and mobility aids that can reduce the energy needed for daily activities. If you're having significant difficulties, they may also arrange home help and personal care services.
- Physiotherapists – may be able to help with pain management. If you're bed-bound, they can help you find ways to avoid deconditioning (your body working less well) that do not make your symptoms worse.
Some people choose to use alternative therapies for ME/CFS. There is no evidence that they help, they can be expensive, and they may cause problems with medicines you take. Talk to your general practice team before starting any therapies or supplements.
Written by HealthInfo clinical advisers and MECFS Canterbury. Last reviewed June 2022.
Review key: HICFS-70801
