Unraveling the Mystery of Myalgia Encephalomyelitis (ME): How the SequenceME Study Could Change Everything

Nearly 17,000 individuals experiencing Myalgic Encephalomyelitis (ME) will have their entire genetic code analyzed in pursuit of the genetic origin for this particular complicated disease, Oxford Nanopore Technologies will participate in a groundbreaking study.

Experts at Oxford Nanopore Technologies, Action for ME, and the University of Edinburgh all together are aiming to find out exactly what causes ME, and if ME is a single disorder or a bundle of them, e.g. long-term coronavirus disease (COVID) and related complications.

Despite affecting 24 million population universally ME, also called ‘chronic fatigue syndrome’ (CFS) remains a medical mystery with least to no clarification of its origin or any authorized treatments. Advanced genome sequencing technique will be used by the research team to scan a total of 3 billion genetic-code data of every cell in the body to find uncommon genetic mutants, structural variations, and even the smallest change in the deoxyribonucleic acid (DNA).

The comprehensive picture will enable researchers to explore ME’s biological causes with unusual precision, paving the way for major progress in treatment and diagnosis as well.

However, the understanding from SequenceME can be a breakthrough for ME, and various other medical conditions as long Covid with widespread post-infection sickness. The study stands to deliver major health, and economic advantages by improving understanding of this complex and disabling condition, ranging from reduction of the burden on healthcare systems to enabling patients to receive personalized care and treatment. This builds on the world’s enormous genetic analysis of ME, the DecodeME study, which is carried out by the University of Edinburgh and Action for ME.

Through the new study, further analysis will be carried out after the collection of spit samples donated by a total of seventeen thousand candidates with their consent. If funded, SequenceME can become the biggest ‘long read’ single disease genetics study in the world, providing richer and clearer data besides the primary ME study to use Oxford Nanopore’s new generation of nanopore-based technology. This collaboration is encouraged by Edinburgh Innovations, the University of Edinburgh’s commercialization service.

‘‘DecodeME built the world’s largest ME/CFS study, we are honored to reach a further step with SequenceME,’’ says Dr. Gordon Sanghera, CEO of Oxford Nanopore Technologies. This project uses Oxford Nanopore’s any-length read sequencing technology to discover genetic understanding which would revolutionize healthcare and lead to personalized medicine for those with ME.

CEO of Action for ME, Sony Chowdhury explained, ‘‘The affected people will be prioritized by SequenceME.’’ This will place the candidates with the ME experience as the main focus for this collaboration. “In the initial phase of the study, the researchers will focus on the severest and even most critical ME cases, to ensure the candidates living with ME’s most life-threatening impacts are at the heart of understanding and moving things forward meaningfully.”

SequenceME offers a rare opportunity to strategically invest in persistent disease investigation with an important opportunity to transform results for individuals. In this latest quarter, the associate collaborators brought their pilot phase to a successful conclusion by sequencing ten specific analysis test samples from the DecodeME collection to accuracy and above the scale of any length sequencing. To get to that sequencing phase, involving 10,000 candidates, it needs £6 million funding. By continuing where DecodeME left off and using remarkable technology to solve one of the most challenging medical mysteries of a long time, the SequenceME study is precisely that unique opportunity.

The SequenceME pilot represents a much-needed and critical step forward in comprehending and attacking ME, with its ambitious goals and commitment to put patients at the center.

Reference: Clinical Research News. Oxford Nanopore, Action for ME, and University of Edinburgh launch groundbreaking study into the genetics of ME. Published December 18, 2024. Accessed December 20, 2024. https://www.clinicalresearchnewsonline.com/cln/pressreleases/2024/12/18/oxford-nanopore-action-for-me-and-university-of-edinburgh-launch-groundbreaking-study-into-the-genetics-of-me

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