DecodeME launch news,

 

Update: DecodeME launches in January 2022.   Thanks for registering your interest in taking part in the DecodeME study into genetic causes of ME/CFS. We have an important update on the start date.   Quick summary: Recruitment will launch in early 2022 in two phases, starting in January. We will email your invite when you can take part and send reminders, so you don’t miss it. Join our next webinar live on Facebook at 4pm today or register for the recording.

More detail if you have the energy:   We’re pleased to announce recruitment will start in January, and this will happen in two phases.   First, a test phase with randomly-chosen participants allowing us to check everything is working well and get feedback. We will then open full recruitment to everyone soon after.   This is a few months later than we hoped. We know this wait feels like a long time when people with ME/CFS have waited so long for a study like this to happen. Thank you so much for bearing with us.   We are committed to ensuring this study delivers to the highest standard possible, with maximum impact for people with ME/CFS. This means that some tasks have taken longer than expected, while other unexpected issues contributed to the delays.

We know openness is important to the ME/CFS community, so we have detailed some of the key reasons for the delays below:   Impact of the pandemic: this impacted supply chains, making it difficult to find key items like cardboard boxes for the spit kits, and made contracting times take longer.   Avoiding launching over the busy Christmas period: this is to avoid spit kits being lost in the post and managing holidays/office closures over this period.   People with ME/CFS are at the heart of this study, involved in every aspect of the design and development. We have adapted what we’re doing and sometimes slowed things down to be as inclusive as possible.   Sickness and impact of loss of loved ones: we have had a number of people from our small team off at times during the project.   Needing to work through more data protection issues than we anticipated to ensure your health information is protected to the highest level possible.   Hiring more staff for the project, ensuring they are fully inducted while working from home.

However, we remain confident of completing the study on time thanks to the fantastic level of support from the community. We’re excited about launching in the new year. The good news is we’re making excellent progress, like getting ethics approval and designing the survey and spit kit that are as easy to use as possible for people with ME/CFS. We are also working with the 25% Group to organise support for people with very severe symptoms. You will receive your invite by email as soon as you can take part. We will send reminders if you miss this. You may see some people posting about their spit kit online who are part of the first phase before the full launch. If you are not part of this randomly selected small group, you will receive your invite as soon as the full recruitment launches. We look forward to updating you at this afternoon's webinar - whether you've registered on Zoom, will watch on Facebook live at 4pm, or will view the recording in your own time.

Warmest wishes, Sonya. Sonya Chowdhury, Chair of Management Group. DecodeME.