We were blown away by the response when we announced funding for the DecodeME study in June. Thousands of people shared and posted on social media, and both The Times (paywall) and the Guardian ran articles.

DecodeME coverage in The Times

17,400 people registered their interest on our new DecodeME website, in addition to over 8,000 people who had already registered before we had secured funding, a total of e 25,500 people. And 19,100 of these live in the UK, have a diagnosis and want to take part in the study when it goes live next year. These are fantastic figures and our thanks go to every person who signed up.

It might look like we’re close to reaching our goal of recruiting 20,000 participants to the study. But in reality, we’re probably closer to being halfway there – we know that for similar studies, fewer than half of those who started the sign-up process actually joined the studies. People might not complete the questionnaire, meet the study selection criteria or return the spit sample for analysis.

Even so, our chances of reaching the 20,000 target are certainly looking good.

The first DecodeME webinar Q&A

On 6 July, over 2,000 people joined our live webinar on Zoom and Facebook. Professor Chris Ponting, Dr Eliana Lacerda, Andy Devereux-Cooke and host Sonya Chowdhury answered questions such as ‘I registered online, what happens next?’, ‘How are you identifying people to take part?’ and ‘Can those outside the UK take part?’. You can watch the full webinar, or view answers to individual questions here.

We’ll let you know when the next webinar is due to happen.

Interview with Chris Ponting: ‘People with ME are the real experts’

Chris Ponting, lead investigator for DecodeME, gave an in-depth interview to the ME Association about the study.

He stressed that DecodeME is a joint project, with scientists, people with ME, carers and charities planning the study together. ’As a scientist,’ he said, ‘it is hugely valuable to be able to consult regularly with the true ME experts (i.e. people with ME) as colleagues. The ME community is front, and centre, of this study and we would not have received funding and the overall positive response without it.’

He highlighted the goals of DecodeME.

  • Home in on causes of ME/CFS.
  • Build a bioresource of DNA data and questionnaire answers from more than 20,000 people with ME.
  • Change the conversation about ME by revealing its biomedical causes.

Chris also discussed the plausible links between ME and a “long-Covid” illness, where some people have failed to make a normal recovery and develop something like post-viral fatigue syndrome. He added that ‘it should not have taken a pandemic to highlight the prevalence and impact of ME’.

The next steps

DecodeME officially starts next month so we are pressing ahead with some work, such as getting the ethical permission that every research study must have. We are aiming to open for recruitment in spring 2021 once we have all the required arrangements in place.

Until then, we will continue to provide updates on our work.

If you have signed up for updates, you will be the first to hear when recruitment opens. We will contact you to send you all the necessary information and a link so that you can begin the process.

Please do continue to help us with getting more people signed up. The quicker we can recruit 20,000 who are eligible for this study, the quicker we can begin the genetic analysis and complete the study.