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Children and young people with M.E./CFS

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NICE guideline focus group

Involving young people in the development of the NICE guideline review for M.E./CFS

Action for M.E. is working with Oxford Brookes University to gather the experiences of children and young people with M.E. to help create a new guideline for how health professionals in England and Wales diagnose and support them and their family. In order to best meet the needs of children and young people with M.E./CFS, this guideline should be representative of their voices and experiences. It is being written by the National Institute of Health and Care Excellence, and will replace the guideline being used at the moment.

If you are aged between 9 and 18 and would like to take part, please read the information below.


What does this involve?

This project involves taking part in a group discussion or a 1-2-1 conversation to talk about your experiences of having M.E./CFS. You can do this in person, over the phone and video link. Before the discussion the research team will give you more information so you know what to expect and they will plan it so it works for you.


Who can take part?

You can take part if you:

  • live anywhere in England and Wales
  • are aged between 9 and 18 years
  • have a diagnosis of M.E./CFS
  • are seeing a doctor or specialist about M.E./CFS, or not – it doesn’t matter.

If you decide to take part, a parent or adult that looks after you will also be invited to complete an online survey.


What will happen with the results?

The information provided by those that take part will be used to produce a report. This report will be used by the team updating the guideline to make sure they consider the experiences of young people like you with M.E./CFS.

If you are interested in taking part, please take a look at the relevant information sheet and privacy notice (this tells you how Oxford Brookes University will use your data and keep it safe) below and then contact Sophie Lawrie at Oxford Brookes on the dedicated research mobile 07741330498 or by e-mail at slawrie@brookes.ac.uk.

Contacting the research team will not mean you have to take part in the study – there’s no pressure, this is up to you – and you can change your mind or withdraw at any point.


Further information

If you are aged between 9 and 15:

If you are aged between 16 and 18:

For parents:


How is Action for M.E. involved?

We have been working with the research team to make sure the information they share is easy to understand, and to help them find children and young people who might want to take part. We will be working to involve children and young people through the other charities in Forward-ME. We will not be involved in the focus groups or interviews, which will be delivered by the research team.