Sequence ME & Long Covid now open for fundraising

Sasha

Sasha

Senior Member (Voting Rights)
Short story long:

"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."

Andy said:
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:

  • 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
We are delighted to be able to begin this ground-breaking research, however the total cost of the initiative is £20million, with phase one lasting two years and costing £388,138. The funding provided by project partners CODA and The Schmidt Initiative for Long Covid will enable us to recruit a full-time Partnerships and Business Development Manager to help drive this work, including seeking further funding and partnerships for the study.

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
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Someone posted a link to JustGiving fundraiser for Action for ME (mentions SequenceME) on Mastodon today:

www.justgiving.com

Eleanor's fundraiser for medical research

Help Eleanor Crawford raise money to support Action for M.E.
www.justgiving.com
Eleanor's story

This year it’s my fiftieth birthday and my fifth year of being disabled by Long Covid.

There are no treatments for Long Covid and the similar illness ME/CFS. The research prospect that gives me the most hope is SequenceME, a project of the University of Edinburgh, Oxford Nanopore Technology and the European Bioinformatics Institute, with Action for ME. It will be the world’s largest ‘long-read’ whole-genome study of any disease, identifying biological mechanisms and pointing towards treatments.

Phase 1 of SequenceME will cost £388,138 and they are close to that target now. Can we get them closer?

Read more about SequenceME:

www.actionforme.org.uk

Sequence ME & Long Covid launches

We're excited announce the launch of Sequence ME & Long Covid – the world’s largest long-read, whole-genome study of any disease.
www.actionforme.org.uk www.actionforme.org.uk

megenetics.org.uk

Sequence ME & Long Covid - ME Genetics Centre of Excellence

Sequence ME & Long Covid A groundbreaking partnership is working together to secure funding for a study to analyse the […]
megenetics.org.uk megenetics.org.uk
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ahimsa said:
Someone posted a link to JustGiving fundraiser for Action for ME (mentions SequenceME) on Mastodon today:

www.justgiving.com

Eleanor's fundraiser for medical research

Help Eleanor Crawford raise money to support Action for M.E.
www.justgiving.com
Click to expand...
Has now been highlighted by someone else on Bluesky

Hotblack (@invalid-handle.com)

This author has chosen to make their posts visible only to people who are signed in.
bsky.app bsky.app
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Has it been highlighted elsewhere e.g. X, Threads, Facebook, etc.? Some sites are difficult to search.
 
Eleanor said:
My husband has posted it on Facebook. Very happy to have it shared on any platform. I'm only on Mastodon myself (all the others are a bit hectic for me!)
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Amazing @Eleanor - congrats. You've inspired me/I think I'm going to copy you and make a JustGiving page. I've been meaning to do some fund-raising for a while now.
I wanted to ask - I can see that on the Action For ME website they offer the option to donate specifically to their "ring-fenced" biomedical research fund :



Screenshot 2026-03-22 at 10.28.21.png


- have you been able to / had to talk directly to Action For ME to ensure that the JustGiving total raised will go to that fund, and not to Action For ME's general fund-raising?

I've started making a JustGiving page and found ActionForME as an option of who to raise money for, but I'm uncertain thus far about that bit of it (how to make sure the money goes to the biomedical research fund)
 
josepdelafuente said:
I wanted to ask - I can see that on the Action For ME website they offer the option to donate specifically to their "ring-fenced" biomedical research fund :



View attachment 31266


- have you been able to / had to talk directly to Action For ME to ensure that the JustGiving total raised will go to that fund, and not to Action For ME's general fund-raising?

I've started making a JustGiving page and found ActionForME as an option of who to raise money for, but I'm uncertain thus far about that bit of it (how to make sure the money goes to the biomedical research fund)
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I selected Action for ME as the charity and was intending to email them to say it was for Sequence specifically, but then I got an email from them almost immediately saying 'thank you for fundraising for SequenceME'. Very efficient!

They also suggested I could send them my 'fundraising story' and they could highlight it on their own website. I'm not up to doing that at the moment but it might be another good place for you to share your own one.
 
Eleanor said:
I selected Action for ME as the charity and was intending to email them to say it was for Sequence specifically, but then I got an email from them almost immediately saying 'thank you for fundraising for SequenceME'. Very efficient!
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How did they know that you wanted to raise money for Sequence rather than AfME in general? Did you select a Sequence option when you set up the fundraiser?

Could the email have just meant that by raising money for AfME you helping Sequence?

Thanks for doing this. I have found birthday and Christmas fundraisers on Juatgiving and Facebook to be a really good way to raise money for ME research charities, and I hope more people will be encouraged do it – particularly now that we have Sequence ME & LC. And I suspect more people might do it if there was an easy one click way to set up a fundraiser for Sequence.
 
Robert 1973 said:
How did they know that you wanted to raise money for Sequence rather than AfME in general? Did you select a Sequence option when you set up the fundraiser?

Could the email have just meant that by raising money for AfME you helping Sequence?

Thanks for doing this. I have found birthday and Christmas fundraisers on Juatgiving and Facebook to be a really good way to raise money for ME research charities, and I hope more people will be encouraged do it – particularly now that we have Sequence ME & LC. And I suspect more people might do it if there was an easy one click way to set up a fundraiser for Sequence.
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The email is titled 'THANK YOU for choosing to fundraise for SequenceME!' and in the body of the email 'Thank you so much for choosing SequenceME as your cause' so I'm going to trust that that's good enough for now.
 
Guys, I have just written an email about this to ActionME, but was wondering if you could share your perspective on this as well.

I am bedridden with severe ME and quite illiterate when it comes to fundraising honestly. I’ve been wondering whether I could share information about the SequenceME project with some of my former colleagues/former course mates in the financial consulting and investment banking industry. Do you think its worth it?.. I just don’t have any resources for pitching and selling, so I am not sure any such contact turns out to be fruitful.
 
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N_Dina said:
I’ve been wondering whether I could share information about the SequenceME project with some of my former colleagues/former course mates in the financial consulting and investment banking industry. Do you think its worth it?
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Maybe you could try sending a short message to a handful of people you knew best, asking if they could help by forwarding or sharing it?

The message could be specific enough to be recognisable to people who know you personally, but not to identify you to those who don't. Something like "I'm a former [work role] at X company" or "a graduate of Y course at Z university", followed by a few words about how ill and disabled you are now, that there is currently no treatment, and that genetic sequencing is one of our best hopes of solving the puzzle of ME/CFS.

It's a matter of luck whether things like this sink or swim, but it might be worth trying. Make the 'ask' as clear as you can, for instance whether you're asking individuals to consider donating, or the organisations they work for.
 
Kitty said:
Make the 'ask' as clear as you can, for instance whether you're asking individuals to consider donating, or the organisations they work for.
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Thank you so much for your feedback.
Yes, I probably need to think about the “ask” little bit more. Ideally I wanted to ask not for personal donations, but for the contacts of probable bigger donors as organisations with such funds usually love participating in charity activities in the UK. But I may be overestimating the potential of this endeavour and it would be more useful just to go for personal donations.
 
N_Dina said:
Guys, I have just written an email about this to ActionME, but was wondering if you could share your perspective on this as well.

I am bedridden with severe ME and quite illiterate when it comes to fundraising honestly. I’ve been wondering whether I could share information about the SequenceME project with some of my former colleagues/former course mates in the financial consulting and investment banking industry. Do you think its worth it?.. I just don’t have any resources for pitching and selling, so I am not sure any such contact turns out to be fruitful.
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Hi N_Dina, thanks for reaching out to Action for ME already.

Do I think it's worth it? It is hard for me to give an absolute answer; your health is important so I wouldn't want you to over-exert yourself and no fundraising efforts are ever gauranteed to be successful. I'll continue my answer though on the basis of what I think would be useful if you are able to.

With 'kick starter' funding recently secured, initial ground work has started including more informative and publicly available information (i.e website pages) on SequenceME, so that will be available in the near future. It also allows for employment of a Business Development Manager.

What often is the most crucial step in terms of high(er) value fund raising for a project is finding an individual or organisation who is willing to consider a donation. So in your situation, if you are able to contact potential donors, introduce SequenceME and why you feel it is important to them, and then pass on any positive leads to the SequenceME Business Development Manager (once they are in place), then I believe that would be potentially incredibly valuable. And of course any donors can also make use of the SequenceME donation page here.
 
Andy said:
Hi N_Dina, thanks for reaching out to Action for ME already.

Do I think it's worth it? It is hard for me to give an absolute answer; your health is important so I wouldn't want you to over-exert yourself and no fundraising efforts are ever gauranteed to be successful. I'll continue my answer though on the basis of what I think would be useful if you are able to.

With 'kick starter' funding recently secured, initial ground work has started including more informative and publicly available information (i.e website pages) on SequenceME, so that will be available in the near future. It also allows for employment of a Business Development Manager.

What often is the most crucial step in terms of high(er) value fund raising for a project is finding an individual or organisation who is willing to consider a donation. So in your situation, if you are able to contact potential donors, introduce SequenceME and why you feel it is important to them, and then pass on any positive leads to the SequenceME Business Development Manager (once they are in place), then I believe that would be potentially incredibly valuable. And of course any donors can also make use of the SequenceME donation page here.
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Hi Andy,

Thank you for your guidance. I’m glad to hear more materials and structure will be available soon. I will discuss it with my partner if such a “connector” role is realistic under the circumstances.
 
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