Cort explores the £20m #SequenceME & Long COVID study's plan to study the whole genome of 18,000 ME/CFS & long-COVID patients. He explains what Dr Chris Ponting aims to do, why & how it adds to other research like #DecodeME. They have employed a fundraiser to raise first £6m.
tinyurl.com/mryx2w4j
SequenceME: partnering for potential Together with Oxford Nanopore Technologies and the University of Edinburgh, we are seeking to secure funding for an exciting new study. Should funding be successful, the SequenceME study aims to build on the DecodeME project and will analyse the genetic code of up to 17,000 people with ME. It would seek to uncover the root causes of ME and to determine whether ME is one illness or an umbrella condition encapsulating multiple diseases, such as long Covid and other chronic conditions. The research team would use advanced whole genome sequencing technology to look at every location in the threebillion- letter genome, enabling the identification of rare genetic variants (small changes to DNA sequence) and structural variations. This detailed picture would help researchers advance the biological understanding of ME with more precision and lay the foundation for progress in diagnosis and treatment. By advancing understanding of this complex and debilitating illness, the study has the potential to deliver profound health, social, and economic benefits, from reducing the strain on healthcare systems to empowering patients with personalised treatments and plans. SequenceME would be the first genetics study in ME to use Oxford Nanopore’s new generation of nanopore-based technology. “DecodeME created the world’s largest ME/CFS study, and we are proud to take the next step with SequenceME,” says Dr Gordon Sanghera, CEO of Oxford Nanopore Technologies. “Using Oxford Nanopore’s any-length read sequencing technology, this project will uncover genetic insights that could transform patient care and open the door to personalised medicine for those living with ME.” “The SequenceME study will focus in its initial phase on severe and very severe cases of ME, ensuring that the people who live with its most devastating impacts are central to advancing understanding and driving meaningful change,” explains our CEO, Sonya Chowdhury. We will keep you upda…
Some info on #SequenceME, an exciting research project that wishes to use in a different way the samples collected for DecodeME
People can financially support such research here:
www.actionforme.org.uk/research-cam...
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
I donated to the #SequenceME project - seems absurd that such an important project would rely on fund raising but such is the ME world #DecodeME
If you'd like to support the researchers behind #DecodeME with other projects eg #SequenceME www.clinicalresearchnewsonline.com/cln/pressrel..., here's donation link www.decodeme.org.uk/support-us/
Alternatively donate directly to Prof Ponting's #MECFS research
donate.ed.ac.uk/support/ME-C...
#CFS
Thank you to the heroes…
@actionforme.bsky.social
@decodemestudy.bsky.social
@cgatist.bsky.social
Calling on the #MECFS & #LongCovid communities to please keep pushing & donate to fund #SequenceME to help find out more & get us effective treatments as quickly as possible, particularly for #SevereME
Anyone know if a crowdfunding has been started anywhere yet?
Let’s help get the #SequenceME research underway asap!!
#DecodeME #ME/CFS #SevereME #LongCovid
The #DecodeME study only looked at a subset of the total DNA. The same research team would like to deeper with a study called #SequenceME but unfortunately need significant funds to do this. Fingers crossed it happens. 🤞 #MEcfs #CFS #PwME
patient care and open the door to personalised medicine for those living with ME.” #MECFS #pwME #SequenceME
Can you provide a separate Sequence ME Donate Button and Funding Meter so that we can help fundraise for it?
#SequenceME is an ambitious and exciting project.
I hope it can secure donors quickly.
As someone living with the devastation that’s #ME, this study by #Edinburgh university and #Oxford gives so much hope. Please help spread the word, this study needs funding. Please help #DecodeME #SequenceME #NEISvoid #LongCovid
