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Involving young people in the NICE guideline development

August 13, 2019

We are pleased to announce that Action for M.E. will be working with Oxford Brookes University to gather the experiences of children and young people with M.E. to develop a new guideline for M.E./CFS.

Earlier this year, the National Guideline Centre, which has been commissioned by the National Institute for Clinical Excellence (NICE) to develop the guideline, invited stakeholders to submit proposals to run a focus group for children and young people with M.E./CFS. Their experiences will be used to inform the current ongoing review of the NICE guideline.

Working in collaboration with Action for M.E., Professor Helen Dawes and her team at Oxford Brookes submitted a successful proposal to carry out this piece of work.

Sonya Chowdhury, Chief Executive of Action for M.E. said, “We are looking forward to working with Professor Dawes to ensure children and young people from all backgrounds have the opportunity to have their voice heard. In order to meet their needs, the revised guideline must reflect their wide range of experiences of diagnosis, treatment, management and support.”

Helen Dawes, of the Oxford Clinical Allied Technology and Trial Services Unit (OxCATTS) at Oxford Brookes, added: “We are delighted to be delivering this consultation on behalf of NICE. We are particularly pleased to be working with Action for M.E. on such an important area of healthcare for children and young people.”

Prof Dawes worked with Forward-ME earlier this year to conduct and analyse a survey of people with M.E./CFS about their experiences of Graded Exercise Therapy and Cognitive Behavioural Therapy.

Countess of Mar, Chair of Forward-ME, said, “I am pleased that Helen and her team were successful in this tender. It was vital that someone with her experience and connection to patient organisations be chosen to conduct focus groups with children and young people. Forward-ME and its member organisations will work with Oxford Brookes to recruit a wide range of young people whose experience is so important.”

Action for M.E.’s focus will be on ensuring information about taking part is easily understood. We will then be promoting the project, working with the other charities of Forward-ME to reach a large audience. Anyone interested in taking part will be signposted directly to the Oxford Brookes team. Prof Dawes and her team will conduct focus group interviews which can be in person, by telephone and/or by video call to ensure as many are able to participate as possible. We are working with Oxford Brookes to identify ways of enabling those who are severely affected to share their experiences safely and effectively, led by the needs of those children and young people.

When the project launches later in August people will be able to contact Oxford Brookes directly for more information and, if they are under 18, to take part.