Blog Archives - Page 4 of 5

🧬 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.…

[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…

[Podcast] Chris Ponting: ‘patients are the experts in ME/CFS’

Involving 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…

Update: DecodeME to launch in January 2022

We 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.…

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…

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…

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:…

People with ME/CFS need big change. Research & collaboration can fuel this.

The transformation needed for people with the chronic, disabling disease/s Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) is huge. Sonya Chowdhury, Chief Executive of Action for M.E. and Chair of DecodeMe’s Management Group, writes. For many years, children, adults and their families have faced significant stigma, neglect and disadvantage. This has been further compounded by low levels of funding for biomedical…

Winter webinar transcript available now

Share this page (links open in new tab): [scriptless] Following our second Management Group webinar held in December 2020, in which DecodeME’s Chris Ponting, Andy Devereux-Cooke, and Sonya Chowdhury were joined by SolveME’s Sadie Whittaker to answer your questions on the study, a full transcript of the webinar has been made available. Produced by our…

Why we need ME/CFS research like DecodeME

Share this page (links open in new tab): [scriptless] Today, we know almost nothing for sure about what causes ME/CFS. We do know that the illness can be triggered by certain infectious diseases, such as glandular fever. But we don’t know why most people recover from those infections but a minority instead develop ME/CFS. There…