Why DecodeME Matters To People With ME/CFS

ME/CFS advocacy is a non-stop effort. Many advocates and online campaigners work tirelessly year-round to raise awareness of this significantly debilitating medical condition, and some have done so for decades. However, the annual ME Awareness Week in May is a time when the whole ME community and ME charities band together to advocate for change…

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DecodeME puts people with ME/CFS at the heart of all its decisions

By Claire Tripp and Sian Leary (patient and public involvement team members)   Believe it or not, there’s no minimum standard for patient and public involvement (PPI) in scientific research. But one of the most important things in a study for people with ME/CFS is making sure that they are considered in everything we do.…

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Webinar recording and transcript – The science behind DecodeME

Chris Ponting and Shona Kerr talk about the science behind the DecodeME study and their roles in the project. Chris explains the purpose of genome-wide association studies (GWAS) and how DecodeME will benefit ME/CFS research. Chris and Shona then answer your scientific questions about the study. Watch the recording: Direct link: Watch the webinar recording…

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DecodeME project update

Quick summary:  DecodeME has welcomed its first test participants and has received valuable feedback from them. We are working to make improvements to the questionnaire after receiving feedback from these participants in the testing phase. We are creating a new online system for the online questionnaire as we are no longer working with the questionnaire system adapted…

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Why do we need a genetic study like DecodeME?

People with ME/CFS want effective treatments. To find treatments, researchers must first find the causes of ME/CFS. Despite having several promising lines of enquiry, the causes of ME/CFS remain unknown. A genetic study can help because DNA studies are particularly good at identifying the root causes of disease. The problem: biological differences might not reveal…

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DecodeME testing phase has launched!

Since DecodeME – the biggest ever study into ME/CFS – was announced, tens of thousands of people have been patiently waiting to take part. A project of this size and nature takes an extraordinary amount of work. Delays and setbacks are inevitable but, in January 2022, we launched the study – starting with a small…

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January webinar: Recording & Transcript

ME/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…

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Great news! DecodeME opens for first participants this month.

Quick 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…

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🧬 Behind-the-scenes: what we’re doing [December 2021]

The 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.…

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