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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.

4) The question for SequenceME is: Are there genes that are commonly broken in people with ME/CFS that increase the risk of the disease? Answering this question will provide stronger evidence that may help to identify different types of ME/CFS and targeted treatments.

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.

8) Ponting highlights that with evidence on rare mutations, we're much more likely to persuade pharmaceutical companies to invest in drug development. Because studies have shown that with that type of evidence, their investments are more likely to succeed.

9) The Nanopore technology is not new, but it's only now affordable in large numbers. The 6000 ME/CFS cases may be the largest single disease cohort ever sequenced using this technology. ME/CFS is behind, but with this project we're jumping in front of the queue.