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. The October 2021 NICE guideline for M.E./CFS offers lots of information and advice about caring for young people with M.E.
It says that doctors should consider diagnosing M.E. if a young person has had a set of specific symptoms for a minimum of four weeks that can't be explained by another conditions, and if these symptoms are having a significant impact.
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, so doctors there often follow the NICE guideline.
Guidelines also make it very clear that:
- your doctor should work with you and your family to agree a care and support 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" - someone who takes the lead on managing your care - and that this is especially important if you are severely affected
- your doctor should not tell 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 agree with)
- you should be supported to return to education as your health allows.
Severe M.E.
Because managing severe M.E. is complicated, the guidelines make it clear that specialist expertise is needed immediately to plan for this. For example, they may need access 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).
