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.)
These are tiny sums of money required compared with the impact that this research could have on people’s health and productivity in years to come. Doesn’t the UK Government claim to want to be leading in the biotechnology arena? Couldn’t this become a real feather in its cap?
Thank you, Dr. Ponting for your work on Decode ME and Sequence ME.
It is a hard pill to swallow that drug development for ME/CFS would take 10 to 15 years after Sequence ME is completed, but I also appreciate the realistic assessment.
In 2005, I read an article about a Dr. Kerr who had discovered “genes switching on and off” in ME/CFS patients, and that treatments would be available in 5 years – that of course never happened.
In 2012, Ampligen was denied by the FDA because there is no diagnostic blood test for ME/CFS, of course many drugs are approved by the FDA without diagnostic blood tests. (Rules and Guidelines are never applied equally to ME/CFS patients)
Decode ME, Sequence ME, the X chromosome work is so vitally important to moving ME/CFS forward. I am grateful to the scientists working on this, and to the present and future donors to these projects.