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These booklets, factsheets, toolkits and reports are free for you to download. We are committed to provide free information on our website but we are a small charity and if you are able to make a donation to help cover costs of producing and revising our publications, it would make a big difference.

My mummy has M.E.

Having M.E. is challenging, especially when you are a parent. If you are struggling to explain your condition to your children, we have created this children's booklet to help. This children's story uses the words of one of our junior members and follows Jack whose mum has M.E.

Living with M.E. / What is M.E.? / Children and young people with M.E./CFS


My sister has M.E.

When your child gets sick it can be difficult for everyone in the family - especially young siblings who don't understand what is happening to their brother or sister. This children's booklet follows the story of Sophie whose big sister has M.E.

Children and young people with M.E./CFS / Living with M.E. / What is M.E.?


I have M.E.

It can be difficult for children with M.E. to understand what is happening to their body and why they feel the way that they do. This children's booklet follows the story of 7 year old Chloe who has M.E. Here she shares her experiences with symptoms, resting and day-to-day life with M.E.

What is M.E.? / Living with M.E. / Children and young people with M.E./CFS


Action for M.E. 2016-2021 strategy

Our purpose is to end the ignorance, injustice and neglect experienced by people with M.E. We will do this by meeting need now while taking action to secure change for the future. In August 2018, we revised our organisational strategy to include our promises to children and young people with M.E., following the launch of our Children and Young People's Services Team.

What is M.E.? / Living with M.E. / Health & care professionals / Employers & teachers / Research / Children and young people with M.E./CFS / Make a difference


Children's services leaflet

Find out all about our services for children with M.E.

Children and young people with M.E./CFS


Action for M.E. Trustee report and accounts 2018-2019

What progress have we made on our promises to improve the lives of young people and adults with M.E., inspire action at all levels, and bring more money and more people into biomedical M.E. research? Read our annual report to find out, along with how we raise and spend our funds.

What is M.E.? / Living with M.E. / Employers & teachers / Research / Children and young people with M.E./CFS / Health & care professionals / Make a difference


Families facing false accusations: our survey

The results of our 2017 survey into the experiences of families affected by M.E. who’ve faced false accusations of abuse, neglect and fabricated/induced illness, which show that one in five families have been subject to child protection referrals as a result.

Children and young people with M.E./CFS


Functional ability scale

The functional ability scale is an important tool to help you work out where you are with your M.E. You can use it to help you describe and measure how much you can do. If you are someone whose symptoms vary a lot, you may want to make a note of where you are on a good day, as well as where you are on a bad day.

Living with M.E. / Health & care professionals / Employers & teachers / Children and young people with M.E./CFS


Exams for pupils with M.E.

This Action for M.E. factsheet for children and young people with M.E., their parents, teachers, and other professionals supporting them, gives information on exam accessibility, special considerations, Standard Attainment Tests, GCSEs and A-levels.

Employers & teachers / Children and young people with M.E./CFS


The role of a social worker

This Action for M.E. factsheet is for parents of children and young people with M.E., teachers, and other professionals supporting the family. It sets out the role of social workers in relation to families with M.E., and what to do if they raise child protection or safeguarding concerns.

Employers & teachers / Health & care professionals / Children and young people with M.E./CFS


Supporting children with medical needs

Children with medical needs may receive education provision in a range of settings. They may attend school with some support. If they cannot attend school they may be educated in a medical alternative provision setting, or in a hospital school. Or they may intermittently attend school and receive education in a medical alternative provision setting, at hospital or at home. This document is designed to help schools identify the steps they should take to ensure children with medical needs receive the support that they need.

Children and young people with M.E./CFS