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

Andy said:
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.
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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!
 
neophyte32 said:
It's expensive... the Germans should fund this basic research instead of wasting the decade's worth of money fighting infectious diseases on autoimmunity.
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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).
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nako.de

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

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 nako.de

But I agree, a collaboration with the University of Edinburgh would be good.
 
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Is there no way to donate money through a crowdfunding campaign for SequencEM? I donated quite a bit for Daratumumab and I think we'll soon be approved for this study. I don't see how we can manage without SequencEM... I stumbled across a 2011 interview with Scheibenbogen on Twitter where she said we were close to a treatment and that it was all set. I don't think the answer will come from Germany and autoimmunity. This reminds me of the Davis family (very involved in communication, thank you to them) who announced every year that they were going to solve the itaconate shunt. In short, Ponting and his team have done more with DecodeME than anyone else in 50 years. How can we help? How can we donate? We're all so desperate that many of us have spent 1,500 euros on Amatica...
 
neophyte32 said:
Is there no way to donate money through a crowdfunding campaign for SequencEM? I donated quite a bit for Daratumumab and I think we'll soon be approved for this study. I don't see how we can manage without SequencEM... I stumbled across a 2011 interview with Scheibenbogen on Twitter where she said we were close to a treatment and that it was all set. I don't think the answer will come from Germany and autoimmunity. This reminds me of the Davis family (very involved in communication, thank you to them) who announced every year that they were going to solve the itaconate shunt. In short, Ponting and his team have done more with DecodeME than anyone else in 50 years. How can we help? How can we donate? We're all so desperate that many of us have spent 1,500 euros on Amatica...
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Due to the amounts needed for SequenceME there has been no call for the community to fund it via a crowdfunding campaign. Efforts by Chris, Sonya Chowdhury, and the rest of the team at Action for ME are focused on sourcing governmental and philanthropic funding. However any support that anybody would like to give them to support those efforts can be done via these links,

Action for ME research activities

where they say that "Donations will be managed by Action for ME, and used towards research projects delivered in partnership with the University of Edinburgh, such as the Genetics Centre of Excellence and Sequence ME and Long Covid."

or

directly to Chris Ponting's team at University of Edinburgh

Any donation to either option would be greatly appreciated.
 
Sean said:
How many decades have been lost now because of this and the blocking of non-psych research by the psychs?
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Given we have recently seen how active SW still is in threatening people who write about PACE, I am wondering if the MRC are being lobbied heavily by BPS interests behind the scenes.

The MRC spending £20m on SequenceME would have been a huge legitimising moment for biomedical MECFS research, and signalled the BPS approach has had its day. I can imagine they would have been very unhappy at the prospect.
 
V.R.T. said:
Given we have recently seen how active SW still is in threatening people who write about PACE, I am wondering if the MRC are being lobbied heavily by BPS interests behind the scenes.
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I would be amazed if it was not hardcore 24/7 lobbying.

Never believe these clowns have conceded anything, no matter what they say, you only have to look at what they do. Their fundamental beliefs about ME/CFS have not changed one iota. If anything they just get more and more entrenched and resistant to change. Which is more than a little ironic.

Their basic tactic is to simply wear everybody down, including patients, by an utterly shameless obnoxious pig-headed refusal to admit any error or change anything.
 
Sean said:
Never believe these clowns have conceded anything, no matter what they say, you only have to look at what they do.
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Despite knowing the history of MECFS and the past behavior of the psychobehavioural school, I was absolutely shocked how aggressive SW was in his bagering and legal threats towards Mendenhall. It is not the behavior of someone confident of their own legacy or in the quality of their work.

If after all these years they still cannot tolerate any criticism of PACE to be published, the prospect of SequenceME must have seemed like a world ending comet hurtling towards them.
 
V.R.T. said:
Given we have recently seen how active SW still is in threatening people who write about PACE, I am wondering if the MRC are being lobbied heavily by BPS interests behind the scenes.
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V.R.T. said:
Despite knowing the history of MECFS and the past behavior of the psychobehavioural school, I was absolutely shocked how aggressive SW was in his bagering and legal threats towards Mendenhall. It is not the behavior of someone confident of their own legacy or in the quality of their work.
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I’ve not managed to keep up with things lately. Can someone point me to a summary of this? Has anyone blogged about it? Thanks.
 
Robert 1973 said:
I’ve not managed to keep up with things lately. Can someone point me to a summary of this? Has anyone blogged about it? Thanks.
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It is discussed under our thread on Mendenhall’s book ‘Invisible Illness’ (see https://www.s4me.info/threads/invis...ria-to-long-covid-2026-mendenhall-book.44402/ ), but this is rather a long thread. The book was edited under pressure of legal threats from Wessely, as well as a related article by the author being withdrawn.

@dave30th wrote a blog in the Trial by Error series (See https://virology.ws/2026/02/01/tria...Fg655Yk94w9jMKQAfQ_aem_K75ePo70gH08iXhnBQhZhg ) and there is another in Long Covid Advocacy (see https://longcovidadvocacy.substack....tm_medium=android&r=1s0n2a&triedRedirect=true ).

[sorry I don’t see to be able to access the link option]
 
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