Frequently Asked Questions
How will you ensure that you have the support of the community of people with ME/CFS for this project?
We’ll do this by continuing our outreach to, and engagement with, the community of people with ME/CFS. Gaining the support of the community will be a crucial challenge for the study and is one that we do not take for granted.
As we began work on the study design, we listened to previous issues raised by patients and consulted on the Science for ME online forum. We set up a Public and Patient Involvement Steering Group that involves patients, expert clinicians, a House of Lords expert representative, and representatives from most UK charities (directly or through Forward-ME). Our project has almost unprecedented levels of patient involvement compared to similar research projects on other diseases.
We have engaged with almost all of the UK’s ME charities/groups already. Hopefully all will spread the word, as we need to reach as much of the UK patient population as possible. We also plan to have members of the PPI team, including a paid PPI coordinator (to be recruited), who will visit patient groups who meet up offline to talk about the study. We will also provide updates to the community during the study.
We hope to gain public support from individuals whose views are well respected within the ME/CFS community to encourage people with ME/CFS to also support the project.
We are also working to the National Standards for Public Involvement.
We have been working hard to engage with the community to win its trust and will continue to do so. We are relying on the support of the community to spread the word, to enhance our chances of recruiting the number of participants that the science needs.
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The largest ever DNA study of ME/CFS
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