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ME/CFS Science
@mecfsscience.org

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.

ME/CFS Science
@mecfsscience.org

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.

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ME/CFS Science
@mecfsscience.org

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.

ME/CFS Science
@mecfsscience.org

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.

ME/CFS Science
@mecfsscience.org

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.

ME/CFS Science
@mecfsscience.org

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.