SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

[obeat]

It also is worth pointing out that smaller funding sums could prove helpful in either topping up, or helping to secure further funding for, an individual £5m work package amount, although a minimum c. £100k or more would likely be needed to make a difference.

That would be a good goal for me awareness in May for all the charities to pull together to raise that amount.

Wish I had the energy to coordinate it!

 

[OrganicChilli]

It's expensive... the Germans should fund this basic research instead of wasting the decade's worth of money fighting infectious diseases on autoimmunity.

They're working on some sort of genetics project. The way I understand it is that they have 200k samples from the general population and they're currently analysing 35k of those - who may or may not have LC or ME/CFS.

The Helmholtz Centres participating in NAKO are currently conducting extensive genome sequencing in 2025 and 2026. “The genome sequencing data and valuable biosamples from NAKO provide an important basis for a more precise understanding of the genetic and molecular factors that lead to post-infectious diseases. We expect that this will reveal new pathophysiological mechanisms and enable the development of targeted therapies,” says Prof. Annette Peters. The genetic analyses are being coordinated by Helmholtz Munich and carried out in collaboration with the German Cancer Research Centre (DKFZ), the Max Delbrück Centre (MDC) and the Helmholtz Centre for Infection Research (HZI).

NAKO participates in the National Decade of Post-Infectious Diseases – German National Cohort (NAKO)

The German National Cohort (NAKO) contributes its scientific expertise to the National Decade of Post-Infectious Diseases initiated by the Federal Ministry of Research, Technology and Space (BMFTR). With two central projects, it makes an important contribution to research into the long-term...

nako.de

Access to NAKO genetic data is planned to be available from 2027 onwards as part of reviewed and approved research projects.

myNAKO - Participants portal – German National Cohort (NAKO)

myNAKO – Participants portal Below you find more detailed information on the German National Cohort (NAKO) and current research projects. Scientific use of the NAKO data The German National Cohort (NAKO) is a major scientific resource that should be used as widely as possible in order to...

nako.de

But I agree, a collaboration with the University of Edinburgh would be good.