josepdelafuente
Senior Member (Voting Rights)
Inspired by @Eleanor 's JustGiving page, I want to do some fund-raising for high quality ME research. At the moment, for me, this principally means SequenceME and ResetME.
I've used Claude (an LLM/AI) to make a first draft of the text I'll use for the Just Giving page and social media posts etc.
I'm planning to edit it and re-write some bits so it sounds more like me.
I don't want it to have a "sob-story" vibe, but I do want it to make people give money!
And I (obviously) don't want it to sound like it was written by an AI (even though it was!)
If anyone is up for reading this first draft and giving me feedback, I'd really appreciate it.
You can read it and make "comments" here - https://docs.google.com/document/d/1jGyiTdFSY7om5T4siErW2a9mf4kR49z1TdnAfpRUDLQ/edit?usp=sharing
Also it's here pasted below.
So in true S4ME style - please get stuck in and tear it to shreds!
I mostly stopped marking my birthday a few years ago. Another year passing in illness isn't much of a celebration, and a party is physically out of the question. So this year, I want to make it count for something instead.
I have ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). My symptoms started ten years ago, at 27. I was a working musician — teaching children in schools, composing, arranging, playing sessions — and physically active: cycling everywhere, swimming, running, surfing, taking kids on camping holidays. Over several years, the illness gradually took all of that away. At 33, I had to stop working entirely and apply for disability benefits. I'm now 37.
A lot of my friendships have effectively ended — not through any falling out, but simply because I'm not physically able to talk on the phone enough, let alone meet up, to maintain them. I was part of an incredible community of musicians in London, and my participation in that community has been ended by this illness.
I'm not writing this to make anyone feel sorry for me. I'm writing it because this is happening to at least 400,000 people across the UK — and probably over a million including those who developed ME after Covid. Each one has a version of this story.
Whatever you care about most right now — the climate, the economy, the NHS, the state of the world — every one of those problems is harder to solve when hundreds of thousands of people who could be contributing are too ill to leave the house. That's just the UK. Globally, an estimated 24 million people have ME. That's a lot of missing doctors, engineers, teachers, musicians, writers, researchers, and parents. Funding ME research isn't in competition with other causes. It's an investment in getting people back into the world.
And yet ME research is almost unfunded.
Between 2019 and 2024, the UK government spent roughly £6.6 million on ME research — about £1.3 million a year. Meanwhile, the government has never published a figure for what ME costs the benefits system.
So here's a rough estimate: around 400,000 people with ME, averaging £10,000/year in disability benefits through PIP and Universal Credit (deliberately averaged down — the DWP's own data shows only a fraction of people with ME successfully claim, and many receive nothing at all). That puts the annual bill at around £4 billion. That's a ratio of roughly 3,000 to 1: for every £3,000 spent managing the consequences of ME, about £1 goes towards understanding or treating it. The government itself has acknowledged that ME is an underfunded research area. And with ME rates rising since Covid, that benefits bill is only going up.
Decades of the illness being wrongly characterised as psychological — something now rejected by the 2021 NICE guidelines — held back biomedical research and left patients fighting for basic recognition. But the science is finally moving.
There is genuine reason for hope.
SequenceME will sequence the entire genome of 18,000 people with ME and Long Covid — potentially the world's largest 'long-read' whole-genome study of any disease. Building on the landmark DecodeME study (which identified eight genetic signals confirming ME involves the immune and nervous systems), it could identify the biological mechanisms driving ME and point directly towards treatments.
Phase 1 is funded and a pilot has successfully proven the method works. The next phase — sequencing 10,000 participants — needs £7 million, and the full study will cost £20 million. Donations go through Action for ME, a UK charity (Gift Aid eligible).
In Norway, ResetME is a placebo-controlled trial of a drug called daratumumab that showed remarkable results in a pilot study — 6 out of 10 patients markedly improved. It's being funded almost entirely by patients and their families, because public funders won't step up and the drug manufacturer won't offer a discount.
The single most effective thing anyone can do right now — if you're not an ME researcher yourself — is contribute to high-quality biomedical research, and encourage others to do the same.
Instead of a birthday gift, please consider donating.
I've used Claude (an LLM/AI) to make a first draft of the text I'll use for the Just Giving page and social media posts etc.
I'm planning to edit it and re-write some bits so it sounds more like me.
I don't want it to have a "sob-story" vibe, but I do want it to make people give money!
And I (obviously) don't want it to sound like it was written by an AI (even though it was!)
If anyone is up for reading this first draft and giving me feedback, I'd really appreciate it.
You can read it and make "comments" here - https://docs.google.com/document/d/1jGyiTdFSY7om5T4siErW2a9mf4kR49z1TdnAfpRUDLQ/edit?usp=sharing
Also it's here pasted below.
So in true S4ME style - please get stuck in and tear it to shreds!
I mostly stopped marking my birthday a few years ago. Another year passing in illness isn't much of a celebration, and a party is physically out of the question. So this year, I want to make it count for something instead.
I have ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). My symptoms started ten years ago, at 27. I was a working musician — teaching children in schools, composing, arranging, playing sessions — and physically active: cycling everywhere, swimming, running, surfing, taking kids on camping holidays. Over several years, the illness gradually took all of that away. At 33, I had to stop working entirely and apply for disability benefits. I'm now 37.
A lot of my friendships have effectively ended — not through any falling out, but simply because I'm not physically able to talk on the phone enough, let alone meet up, to maintain them. I was part of an incredible community of musicians in London, and my participation in that community has been ended by this illness.
I'm not writing this to make anyone feel sorry for me. I'm writing it because this is happening to at least 400,000 people across the UK — and probably over a million including those who developed ME after Covid. Each one has a version of this story.
Whatever you care about most right now — the climate, the economy, the NHS, the state of the world — every one of those problems is harder to solve when hundreds of thousands of people who could be contributing are too ill to leave the house. That's just the UK. Globally, an estimated 24 million people have ME. That's a lot of missing doctors, engineers, teachers, musicians, writers, researchers, and parents. Funding ME research isn't in competition with other causes. It's an investment in getting people back into the world.
And yet ME research is almost unfunded.
Between 2019 and 2024, the UK government spent roughly £6.6 million on ME research — about £1.3 million a year. Meanwhile, the government has never published a figure for what ME costs the benefits system.
So here's a rough estimate: around 400,000 people with ME, averaging £10,000/year in disability benefits through PIP and Universal Credit (deliberately averaged down — the DWP's own data shows only a fraction of people with ME successfully claim, and many receive nothing at all). That puts the annual bill at around £4 billion. That's a ratio of roughly 3,000 to 1: for every £3,000 spent managing the consequences of ME, about £1 goes towards understanding or treating it. The government itself has acknowledged that ME is an underfunded research area. And with ME rates rising since Covid, that benefits bill is only going up.
Decades of the illness being wrongly characterised as psychological — something now rejected by the 2021 NICE guidelines — held back biomedical research and left patients fighting for basic recognition. But the science is finally moving.
There is genuine reason for hope.
SequenceME will sequence the entire genome of 18,000 people with ME and Long Covid — potentially the world's largest 'long-read' whole-genome study of any disease. Building on the landmark DecodeME study (which identified eight genetic signals confirming ME involves the immune and nervous systems), it could identify the biological mechanisms driving ME and point directly towards treatments.
Phase 1 is funded and a pilot has successfully proven the method works. The next phase — sequencing 10,000 participants — needs £7 million, and the full study will cost £20 million. Donations go through Action for ME, a UK charity (Gift Aid eligible).
In Norway, ResetME is a placebo-controlled trial of a drug called daratumumab that showed remarkable results in a pilot study — 6 out of 10 patients markedly improved. It's being funded almost entirely by patients and their families, because public funders won't step up and the drug manufacturer won't offer a discount.
The single most effective thing anyone can do right now — if you're not an ME researcher yourself — is contribute to high-quality biomedical research, and encourage others to do the same.
Instead of a birthday gift, please consider donating.
