Oxford Brookes working with Action for M.E. to involve young people in NICE guideline development

Friday, 04 October 2019

actionforme

The Oxford Clinical Allied Technology and Trial Services (OxCATTS) Unit based at Oxford Brookes University is working with Action for M.E. to help develop NICE’s new guideline on the diagnosis and treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Together, they will gather information from children and young people with the condition, ensuring the guideline reflects their experience.

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.

Sonya Chowdhury, Chief Executive of Action for M.E.

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 ME. 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.”

Professor Helen Dawes, Scientific Manager of 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 ME on such an important area of healthcare for children and young people.”

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

The 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."

Professor 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. Action M.E. 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.

Further information on OxCATTS is available on the Oxford Brookes website.