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 emphatically rejected by the 2021 NICE guidelines for ME/CFS — catastrophically held back biomedical research and left patients fighting for basic recognition. But the science is finally moving, and there are finally good reasons 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 to this Just Giving crowdfunder will go towards SequenceME, 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.
You can contribute to ResetME here - https://www.me-foreningen.no/om-oss/stott-me-foreningen/me-fondet/english-me-fund/
The single most effective thing you can do right now is to help fund high-quality biomedical research, and encourage others to do the same
A UK man with ME is fundraising for SequenceME, a deeper look at the DecodeME samples (whole-genome sequencing study).
www.justgiving.com/page/gregsan...
Screenshot is extract from his story where he argues there has been a lack of investment in research
#MEcfs #PwME #ME #MyalgicE
![Relapse
by Heather Gill, proud mother and carer of Sarah (16)
have been asked to share with you one of the awful parts of ME - The Relapse. My daughter, Sarah, has had many of these in the last couple of years, some not too bad, some very bad. Let's look at this together.
Reflect
A time to Reflect. Have we been overdoing things? We must now rest and let our bodies Recover.
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en
nergy
Laughter
A
P
atience
S
urvival
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Conserve your Energy to give you the resources to get back.
Laughter is one of the best therapies. I know it is hard when you feel so down, frightened and ill but, believe me, a laugh will make you feel better. [To find out why laughter is good medicine read Dr Darrel Ho-Yen's HOW TO: Float (and not drown!) on page 12. Ed.]
Achievement Achievements, however small, are important. Celebrating the little achievements every day gives a welcome boost.
Patience, with yourself and others, is important at this time. Give yourself and others time for you to feel better.
Learn the art of Survival. No matter how bad things get, remember you can get through the endurance test that is ME.
ncouragement This is a very upsetting time, for sufferers and carers. Encouragement is so valuable. Always be prepared to listen to how the other feels.
The TYMES Magazine Issue 31 Winter 2000](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:43rudsv62fuwsmnk7oppgtdy/bafkreiat7uubgk3xq433jxqtucbzbjpn7obqbbs5g2naxthvb6jp2swwsi)
