Webinar transcript: Anna Redshaw and Pippa Stacey’s talks

Patients Life of Pippa’s Pippa Stacey and Blue Sunday: the Tea Party For ME creator Anna Redshaw appeared in video messages on our January 2022 webinar, explaining their roles talking to the online ME/CFS community about the study and encouraging people to register. Sonya Chowdhury: So we’re now going to hear from, we’ve got two…

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Webinar transcript: Carer & PPI Steering Group member Claire Tripp

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,…

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Exciting! We’re testing spit kits ahead of launch.

Big 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…

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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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[Webinar recording & transcript] Why patient involvement is crucial

We 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…

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Migraine drug shows how big DNA studies can help find treatments

A 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…

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Important update & first look at ‘spit kit’

Blog 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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What we learned from the current largest genetic study into M.E./CFS

DecodeME will be the world’s largest genetic study of Myalgic encephalitis (ME) / Chronic Fatigue Syndrome (CFS). The current largest is by the UK Biobank, which analysed the DNA of people with self-reported CFS. Has the study help unravel the genetic secrets of ME/CFS? Here’s what we learned from a paper just published. Quick summary:…

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