Post

1) In this interview with David Tuller, Prof. Chris Ponting gave more info about the SequenceME & Long Covid project that received £4.75 million from the UK government. It will measure the whole genome of ME/CFS patients in high resolution so that rare mutations can be found.

2) The project will use the Oxford Nanopore Technology. It will read 3 billion DNA letters per person as they go through a minuscule opening (a nanopore) one by one. They plan to do 30 readouts per person on average to reduce errors.

3) DecodeME answered two broad questions: - Is ME/CFS genetic? Does it have a genetic predisposition? The answer is yes. - What physiological system is most affected? Turns out it's the nervous system.

5) It's an expensive technology, so they're doing it in phases. Phase I was setting up the project; Phase II plans to analyse 6000 ME/CFS samples from DecodeME. The government money was only on consumables, not on people. Luckily, the WE&ME Foundation gave funding for this.

6) They already have control data, collected and sequenced in the same way, through the NIHR bioresource. The goal is to collect the Phase II data before the end of March 2027. Analysis will take another year, so it will probably be more than 2 years before the first results.

7) The next phases aim to read 3000 additional ME/CFS samples and 6000 Long Covid samples which still need to be collected. They're working out inclusion criteria and a case definition for this with patient involvement.