HealthInfo Canterbury
Diagnosing & self-care for 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 journal 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 is often delayed, happening 12 to 24 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. 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.
- Reduce your activity level enough to limit your chances of getting PEM symptoms. It helps to keep an activity and symptom diary 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.
- Ask about support. Many people with ME/CFS can't work or go to school. If you can't work or can only work reduced hours, talk to your GP to find out if you are eligible to go onto a benefit. Children might try distance education if they are struggling to attend school. Talk to your child’s school and GP about this.
- If orthostatic intolerance is a problem and you have normal or low blood pressure, it may help to eat more salt. Drink plenty of fluids. Some people may find compression clothing helpful.
- Follow good sleep practices. If you have a lot of trouble sleeping, consider talking to your GP about medication.
- See your doctor for a review of your illness once a year, and whenever you get new symptoms or your symptoms get much worse than usual.
- Let your whānau 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 painkillers may help ease headaches as well as muscle and joint pain. Your doctor may prescribe stronger painkillers, although they should only be used short-term. You may be referred to a pain management clinic if you have long-term pain or fibromyalgia.
Medication for sleep may be helpful if you have problems getting to sleep or staying asleep.
Medication may be useful if you are experiencing depression or anxiety as a result of living with ME/CFS, and other approaches such as counselling and support from a patient group haven't helped.
If you can't 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 families.
- Psychologists and counsellors, who can help you find ways to come to terms with the loss and disability of ME/CFS.
- Dietitians if you are losing weight, or having difficulty with food intolerances and digestive system symptoms.
- Occupational therapists, who can provide access to equipment such as shower stools and mobility aids that can reduce the energy needed for daily activities. If you are having significant difficulties, they may also arrange home help and personal care services.
- Physiotherapists, who may be able to help with pain management. If you are bed-bound, they can help you find ways to avoid deconditioning (your body working less well) that don’t make your symptoms worse.
Some people choose to use alternative therapies for ME/CFS. There is no evidence that they help and they can be expensive. Talk to your GP before starting any therapies or supplements.
Written by HealthInfo clinical advisers. Endorsed by MECFS Canterbury advisors. Page created May 2019. Last updated September 2020.
Review key: HICFS-70801
