By David Tuller, DrPH
Last year’s release of the results from the DecodeME, a UK-based genome wide association study of more than 15,000 DNA samples, generated significant excitement. Action for ME, which spearheaded DecodeME, recently announced that it had received funding for a multi-phase follow-up project called Sequence ME & Long Covid. The UK government has committed £4,750,000, and private donors have offered additional funds.
From the Action for ME announcement:
“Sequence ME & Long Covid, a new research initiative designed to explore the root causes of Myalgic Encephalomyelitis (ME) and Long Covid using large-scale, long-read whole-genome sequencing. Building directly on the success of the DecodeME study, this project aims to unlock deeper genetic insights that could accelerate the development of diagnostics and future life-changing treatments. This proposed £20 million study will analyse the entire genetic code of 9,000 people with ME and 9,000 people with Long Covid.”
I recently spoke about Sequence ME & Long Covid with Professor Chris Ponting, a geneticist at the University of Edinburgh and the co-lead investigator. (This interview does not have the greatest video quality, given a fussy online connection. It also has a touch of cinema verite. At the end, I thought I had shut off the recording—and then it turned out I hadn’t. I decided not to edit out our brief exchange about it because I found it entertaining.)