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Children and young people

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Guidelines and diagnosis

Official guidelines

In England and Wales, a government organisation called the National Institute of Health and Care Excellence (NICE) publishes evidence-based guidelines for doctors about how to manage many illnesses and health conditions, including the NICE guideline for M.E.

In Scotland, the government has produced a guideline for doctors called the Scottish Good Practice Statement on M.E. There are no official guidelines for M.E. in Northern Ireland.

These guidelines say that doctors should consider diagnosing M.E. if a child, young person or adult has fatigue and all of the following apply:

  • There was a clear starting point.
  • It is persistent and/or recurrent.
  • It is unexplained by other conditions.
  • It substantially reduces the amount of activity you can do.
  • It feels worse after physical activity.

They also set out what other symptoms should be present to make a diagnosis of M.E., and how long you should have the symptoms for before a diagnosis can be confirmed. A child or young person with M.E.-type symptoms should be referred to a paediatrician to exclude other conditions within six weeks of first going to see the doctor. A diagnosis should be made after other possible conditions have been ruled out, and the symptoms have persisted for three months. Advice on managing symptoms should not be delayed until a diagnosis is made.

Guidelines also make it very clear that:

  • your doctor should work with you and your family to agree a care plan that feels right to you
  • you and your family should be provided with accurate information throughout your care, and that this should be available in the format that best suits you
  • healthcare professionals responsible for caring for you should have the right skills and knowledge about M.E.
  • you should have a "named health care professional" - a person who takes the lead on managing your care - and that this is especially important if you are severely affected
  • your doctor should not ell you to go to the gym or do unsupervised exercise, as this may worsen your symptoms
  • you have the right to refuse or stop any part of your care plan (this is important to remember if you feel under pressure to try a treatment or symptom management approach that you don't want to)
  • you should be supported to return to education when you are ready and fit enough.

Severe M.E.

Because managing severe M.E. is complicated, the guidelines make it clear that specialist expertise is needed to plan for this. For example, they may need to use community services. The guideline also sets a realistic picture of what activities and long-term goals should be like for someone with severe M.E. (such as "sitting up in bed or brushing hair" as a long-term goal).