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Please give us your ideas about recruitment

We’ll need saliva samples from at least 20,000 people with ME/CFS for our study. But we’ll need to recruit many more than this because not everyone will meet the study inclusion criteria.

Getting this many patients won’t be easy. At a rough estimate, there are about 180,000 adults in the UK with ME/CFS. Many will never have been diagnosed. And to get our 20,000, we’ll need to reach one in six of those 180,000. That will be a huge challenge.

But even the sickest patients should be able to take part, and participation should be easy for everyone. Patients will be able to sign up via a website or a phone app or via paper forms. Patients will have to give some information and, if they’re eligible for the study, they’ll spit in a tube and mail the sample to the researchers.

The key question is how to reach patients as many patients as possible. If you have any ideas as to how we could do this, please tell us below.

 And if you have any concerns or questions, please add them too. We won’t be able to respond to them individually but we’ll use them to inform the development of the project.

Question Title

* 1. Do you have ideas that would help us recruit as many people with ME/CFS as possible?

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