Sequence ME & Long Covid

A groundbreaking partnership is working together to secure funding for a study to analyse the entire genetic code of up to 9,000 people with ME and 9,000 with Long Covid. The study, called Sequence ME & Long Covid, aims to uncover the root causes of the illnesses,  determine whether each is one illness or several, reveal how they are related – and help to understand post-infection syndromes generally.

The study will bring together experts from genome-sequencing company Oxford Nanopore Technologies, the University of Edinburgh, the European Molecular Biology Laboratory’s European Bioinformatics Institute, and Action for ME.

The project will build on the DecodeME study, the world’s largest genetic study of ME, led by the University of Edinburgh and Action for ME. DecodeME looked at the DNA of over 15,000 people with ME, and examined the one million locations on the genome – the body’s complete set of DNA instructions – where DNA changes are common.

But Sequence ME & Long Covid will use advanced whole-genome sequencing technology to look at every location in the three-billion-letter genome. This will enable the researchers to identify DNA changes where they are normally rare, and changes in structure, such as deleted or repeated sequences of DNA.

This detailed picture will allow researchers to search for the biological causes of ME and Long Covid with unprecedented precision, laying the foundations for breakthroughs in diagnosis and treatment.

If funded, the researchers will use Oxford Nanopore Technology’s world-leading ‘long-read’ nanopore-based sequencing technology. ‘Long-read’ sequencing allows very long strings of DNA to be sequenced, making it possible to piece each person’s genome together much more accurately than with other methods.

In Oxford Nanopore Technology’s sequencing devices, strands of DNA are fed through tiny pores – ‘nanopores’ – in a membrane, that have an electric current running through them. Each of the four types of possible DNA molecule, labelled ‘A’, ‘C’, ‘G’ or ‘T’ for short, disturbs the current in a different way, allowing the device to read out the DNA sequence in real time.

The team already has the DNA of 9,000 people with ME from DecodeME who gave permission for part of their DNA samples to be kept back for sequencing. The study will also need to recruit 9,000 people with Long Covid. It will collect DNA samples from them using the same ‘spit and post’ design as for DecodeME. This will make Sequence ME & Long Covid the biggest long-read, disease-specific whole-genome sequencing study in the world – for both diseases.

The collaboration is supported by Edinburgh Innovations, the University of Edinburgh’s commercialisation service.

As with DecodeME, Action for ME is a partner in the study and will make sure that people with lived experience of ME and Long Covid will be at the heart of everything, co-producing the study and being involved in all aspects of it.

The researchers have already successfully pilot-tested the sequencing technology on ten DecodeME DNA samples. This confirms that DecodeME’s samples are suitable for sequencing at scale. The project is ready to go and is seeking funding for its first phase.

Professor Chris Ponting, who led DecodeME and will lead Sequence ME & Long Covid, has urged stakeholders to seize this opportunity.

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If you are able, please consider donating to Action for ME’s research fund, which supports this work.