This information offers further details about the NICE guideline focus group that is being conducted by Oxford Brookes. You can read the original post here.
Thank you to everyone who has posted questions and shared their views about this important project.
We agree that it is absolutely essential that any young person living with M.E. who wants to take part, including those who are severely affected, is properly supported to have their voice and views heard. We are engaging with Tymes Trust and #MEAction to share this as widely as possible with the children, young people and families we support to highlight this.
There are a number of digital, telephone and face-to-face options (including home visits) that the Oxford Brookes team, who are running this project, are looking at that can be tailored to each young person’s individual needs. The time at which they can participate, and the duration of this, will depend on each individual. If a child or young person can only manage a few minutes then that is all they will do, with no expectation that anyone taking part will have to do an hour session.
The consultation methods for this project are being developed in consultation with a steering group of parents, carers, education and health professionals and patient advocates. We very much support their view that, if at all possible, a child or young person should be able to speak directly for themselves, with appropriate support put in place to enable this. We also agree that parents should be able to input their views and experiences, and understand that the Oxford Brookes team will facilitate this through additional methods.
Please contact the research team directly to find out what support young people who want to take part can expect, and also how parents can share their views as well. You can call them on their dedicated research mobile 07741330498 or by e-mail at email@example.com.
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