obeat
Senior Member (Voting Rights)
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!
SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME
Wish I had the energy to coordinate it!
OrganicChilli
Senior Member (Voting Rights)
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.
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
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.
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neophyte32
Established Member (Voting Rights)
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...
Andy
Senior Member (Voting rights)
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.
V.R.T.
Senior Member (Voting Rights)
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.
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.
Kitty
Senior Member (Voting Rights)
Their other option is to admit part of their life's work was a sham, and they knew it.
Too much to lose if you enjoy being king of a castle, even if it's a pretty rubbish one.
V.R.T.
Senior Member (Voting Rights)
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.
Robert 1973
Senior Member (Voting Rights)
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.
hotblack
Senior Member (Voting Rights)
Me either, there seems to be discussion in this thread but a blog or summary would be useful if anyone can point to one
https://www.s4me.info/threads/invis...ria-to-long-covid-2026-mendenhall-book.44402/
Peter T
Senior Member (Voting Rights)
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]
Andy
Senior Member (Voting rights)
From an email update:
As a valued supporter of our work, we are delighted to share the exciting news that we have secured funding for phase 1 of Sequence ME & Long Covid - the world’s largest long-read whole-genome study of any disease.
The study will analyse the entire genetic code of 9,000 people with ME and 9,000 people with Long Covid. The initiative is designed to explore the causes of Myalgic Encephalomyelitis (ME) and Long Covid using large-scale, long-read whole-genome sequencing.
Building directly on the success of the DecodeME study, this project aims to unlock deeper genetic insights that could accelerate the development of diagnostics and future life-changing treatments.
Find out more about Sequence ME & Long Covid
The Schmidt Initiative for Long Covid and CODA (Complex Disorders Alliance) have provided $200,000 and $50,000 respectively towards the cost of the project’s first phase.
In this first phase we will:
Once further funding is secured, we will immediately move into sample collection and analysis – aiming to sequence 9,000 Long Covid samples, as well as the 9,000 samples already collected through DecodeME.
We are now in a position to take donations towards the project from those who are able to. If you would like to support the project, you can make a donation here.
We will share future updates on the study’s progress with you as soon as possible. Our ability to develop research partnerships such as these is only possible due to the support of people like you.
Thank you for helping us create real change for people with ME and Long Covid, now and in the future.
Warmest wishes,
The Action for ME Team
P.S. We still have some seats available at our Breakthrough ME fundraising dinner in London on Thursday 15th October 2026. For more information or to book your seat, please contact breakthrough@actionforme.org.uk
As a valued supporter of our work, we are delighted to share the exciting news that we have secured funding for phase 1 of Sequence ME & Long Covid - the world’s largest long-read whole-genome study of any disease.
The study will analyse the entire genetic code of 9,000 people with ME and 9,000 people with Long Covid. The initiative is designed to explore the causes of Myalgic Encephalomyelitis (ME) and Long Covid using large-scale, long-read whole-genome sequencing.
Building directly on the success of the DecodeME study, this project aims to unlock deeper genetic insights that could accelerate the development of diagnostics and future life-changing treatments.
Find out more about Sequence ME & Long Covid
The Schmidt Initiative for Long Covid and CODA (Complex Disorders Alliance) have provided $200,000 and $50,000 respectively towards the cost of the project’s first phase.
In this first phase we will:
- establish the project’s Management Group, Scientific Advisory Board, and build on the existing involvement of people with lived experience who have driven this study from the start
- develop the research criteria for Long Covid
- collect expressions of interest from 15,000 people with Long Covid
Once further funding is secured, we will immediately move into sample collection and analysis – aiming to sequence 9,000 Long Covid samples, as well as the 9,000 samples already collected through DecodeME.
We are now in a position to take donations towards the project from those who are able to. If you would like to support the project, you can make a donation here.
We will share future updates on the study’s progress with you as soon as possible. Our ability to develop research partnerships such as these is only possible due to the support of people like you.
Thank you for helping us create real change for people with ME and Long Covid, now and in the future.
Warmest wishes,
The Action for ME Team
P.S. We still have some seats available at our Breakthrough ME fundraising dinner in London on Thursday 15th October 2026. For more information or to book your seat, please contact breakthrough@actionforme.org.uk
Sasha
Senior Member (Voting Rights)
I thought that deserved its own thread!
Great to hear.
It's interesting that only 9,000 of 15,000 pwME consented to further analysis. I understand if some don't want their data used by other research teams, but I would think that if they had the option, almost everyone would consent to further research by the same lab.
V.R.T.
Senior Member (Voting Rights)
Glad they've got funding to start but this is a very daunting gap in how much they need for the whole thing. I guess they wouldn't start if they didn't think it was realistic that more funding will be secured?
Are they saying that once they get further funding they will immediately start work on the collection and analysis regardless of the two years phase one will take? Like if it was next week they'd start collection and analysis then? I really hope so.
Andy
Senior Member (Voting rights)
I don't believe that the restriction (to 9k samples) is consent, I believe it is cost of sequencing and what is needed for scientific validity - there being no point in spending more than is needed, especially as it would make it less likely for the required fundraising to be successful.
Andy
Senior Member (Voting rights)
DecodeME samples are obviously sat in the freezer ready to go, while the Long Covid samples would be the ones that would need the extra collection work.
V.R.T.
Senior Member (Voting Rights)
So if the team got funding to analyse the DecodeME samples next week they would get started on it then?
(Obviously being a bit hyperbolic here, the point is whether they will wait the full two years to start if they get funding to analyse the DecodeME samples)
Oh, ok thanks. I was going by this statement from the site, but I see that it could also mean 9000 of those who consented.
I see that >17,000 people consented, which is great.