Updates
Webinar transcript: Carer & PPI Steering Group member Claire Tripp – talk from our January 2022 webinar: Claire: Don’t forget to unmute myself! Hi, so hello everyone. As Sonya said, I’m Claire Tripp and I’m going to talk to you a little bit about what we’ve been doing behind the scenes in designing the study,…
Read MoreME/CFS patients and a carer made their voices heard on our January 2022 webinar. Patients Life of Pippa’s Pippa Stacey and Blue Sunday: the Tea Party For ME creator Anna Redshaw explained their roles talking to the online ME/CFS community about the study and encouraging people to register. Claire Tripp, a carer and part of…
Read MoreQuick summary: Great news! DecodeME opens for first participants this month. Recruitment will happen in two phases. Phase 1 opens on January 31 for around 550 people. Once we’re sure everything is running smoothly, we’ll open the study for everyone with ME/CFS in the UK (Phase 2). We’re holding a webinar on Thursday 27th January…
Read MoreBig news! The DecodeME team is testing spit kits, ahead of our launch in the new year. This includes the process of giving a saliva sample (containing your DNA) & posting it back. We’re making sure saliva samples reach us safely before we roll out the study to over 28,000 people early next year in…
Read MoreThe DecodeME launch is just weeks away! We’re busy behind-the-scenes getting the world’s largest genetic study of ME/CFS ready for people like you to take part. With over 28,000 people from all over the UK waiting for their invite, we’re working hard to make sure this large science study runs smoothly. Here are some of the tasks we’re working on: 1.…
Read MoreWe held our Winter Webinar in mid-November. Sonya Chowdhury, Chris Ponting and Sian Leary from the DecodeME team updated on study progress, explained why involving patients and carers is vital in this study, and answered your questions. If you were unable to join live you can access the recording in your own time: Read the…
Read MoreInvolving people with ME/CFS in every stage of our study is a crucial part of DecodeME. Professor Chris Ponting, the study’s Principal Investigator, talks about the value of involving people with lived experience in the study on the Genetics Podcast. Listen to the podcast. Read the transcript. (With thanks to Sly Saint from the Science…
Read MoreWe have an important update on DecodeME’s start date. Quick summary: DecodeME will launch in January 2022. Recruitment will happen in two phases. If you are in the UK and have registered your interest in taking part, we will email your invite when you can take part and send reminders, so you don’t miss it.…
Read MoreA recent breakthrough in migraine treatment shows, indirectly, how big DNA studies like DecodeME can help find highly effective drugs for patients. Watch the easy to follow one minute video, or continue to read the article. Traditional biological research some years ago identified a pair of proteins as being involved in triggering migraines. This insight…
Read MoreBlog updated November 2021: DecodeME will launch in the new year. It will launch in two phases, the first starting in January 2022. Read the full update. Important update: DecodeME will launch a few weeks later than planned. We know how important this study is to you and everyone in the M.E./CFS community, so we…
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