Data-informed advocacy to accelerate research on ME/CFS, Long COVID, and other infection-associated chronic illnesses (IACIs) 💙

United Kingdom
CrunchME retweeted
Whilst we know the average quality of life for ME/CFS patients is amongst the very worst for chronic diseases, I think in advocacy the true disaster that is severe / very severe ME has been significantly underplayed. New @wecrunchme visual on this topic 💙
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CrunchME retweeted
Whilst the human cost & immense suffering ME/CFS causes should always be front of mind, from a policy advocacy perspective it is also very useful to highlight the economic cost this disease imposes on society at large. We've pulled together 5 published estimates from the US, UK, Germany and Australia 🇺🇸🇬🇧🇩🇪🇦🇺 These suggest that the economic cost of ME/CFS reaches or even exceeds 1% of GDP every year. For the countries shown, this means tens or even hundreds of billions of dollars lost each year - and is an important part of strengthening the case or far greater investment research into this terribly neglected disease. #MECFS
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CrunchME retweeted
On the clinical trials front, we've also now incorporated the feed of trials from clinicaltrials.gov (where many but not all of them are registered) 💊 However, we have taken the important step of *filtering* out the BPS-style interventions to leave the real biomedical stuff! crunchme.org/database/clinic…
Excited to share that all 22 (!) of the @wecrunchme ecosystem databases have now been moved natively onto our own website, and are now vastly better for looking through on mobile 👊 This has been a big bit of work, so delighted to get it done for the community. crunchme.org/database #MECFS #LongCOVID
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CrunchME retweeted
Excited to share that all 22 (!) of the @wecrunchme ecosystem databases have now been moved natively onto our own website, and are now vastly better for looking through on mobile 👊 This has been a big bit of work, so delighted to get it done for the community. crunchme.org/database #MECFS #LongCOVID
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CrunchME retweeted
Thanks to a major & extremely generous donation from a long-time friend @FreddieFarmer, my birthday fundraiser has hit an amazing £3.5k for @wecrunchme 🙌🥳 Thank you so much to Freddie, & everyone else who's donated to set us up well for the next 12 months 💪 #MECFS #LongCOVID
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CrunchME retweeted
We're steadily moving over all the @wecrunchme ecosystem databases to a view that is in our style, and much better suited to mobile 📱 Just finished the Specialist Care & Patient Services one - covering clinicians, clinics, specialist pharmacies etc around the world 🩺🌎 @Michaeltikus @pheob289
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CrunchME retweeted
Investments into startups focusing on ME/CFS, long COVID, and other complex chronic illnesses are growing 📈 And we are tracking them @wecrunchme Since 2020 (and mostly since '22) we've seen $14.4m of venture investments into startups in this space 👀
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My birthday fundraiser for @MEResearchUK has reached £907! I’m truly amazed! 🤯 Thank you SO much to all who donated and to those who couldn’t but shared it 🫶💕 justgiving.com/page/naomi-ha…
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CrunchME retweeted
A few more shout-outs for generous donations to my birthday fundraiser for @wecrunchme (who have put their name publicly on the donation page): 🎈 @amyrochlin from @CODA_research 🎈 @OrestesGaolin from @visible_health 🎈 @paddy_monahan from @vindarahealth 🎈 @LukasBarth54728 Thank you so much for your support!! #MECFS #LongCOVID
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CrunchME retweeted
It's my birthday next week 🥳 To celebrate, I'm fundraising for @wecrunchme - the non-profit I founded to bring data-informed advocacy to ME, long COVID, and other infection-associsted chronic illnesses 💪💙 If you'd like to support, donation link below or please RT! Tysm
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CrunchME retweeted
I was curious to see which physiological systems are being most heavily researched in #MECFS Analysis below of PubMed papers suggests the immune system, with autonomic quickly rising - and the gut establishing itself since ~2015 🛡️🧠⚡🫀🧬🦠
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CrunchME retweeted
Progress update with @wecrunchme: we have finished adding downloadable datasets to all of our visuals 🙌 The goal here is to make it easier for organisations to recreate our visuals in their own branding, if required for funding pitches etc. Also a good opportunity to say we've opened a waitlist for CrunchME Pro! This allows you to connect your AI agent of choice to all our visuals and datasets (link below) - allowing it to sift through our work and pull out what is most valuable to your pitch, marketing material, and so on 🤖 #MECFS #LongCOVID
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CrunchME Pro waitlist is open! An MCP for connecting your AI agent to all of CrunchME's visuals and data Should be especially useful for orgs (charities, researcher labs, startups etc) who want to make regular use of our work in fundraising and awareness
Progress update with @wecrunchme: we have finished adding downloadable datasets to all of our visuals 🙌 The goal here is to make it easier for organisations to recreate our visuals in their own branding, if required for funding pitches etc. Also a good opportunity to say we've opened a waitlist for CrunchME Pro! This allows you to connect your AI agent of choice to all our visuals and datasets (link below) - allowing it to sift through our work and pull out what is most valuable to your pitch, marketing material, and so on 🤖 #MECFS #LongCOVID
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CrunchME retweeted
ME/CFS has some of the lowest quality-of-life scores of any chronic illness studied (Hvidberg 2015). On the SF-36 it scores ~27 vs cancer ~41. Lower means worse. A physiological illness this disabling should be taken seriously. For too long it hasn't been. Chart: @wecrunchme
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CrunchME retweeted
⬇️ This could potentially be an opportunity to greatly speed up research into ME/CFS. @wecrunchme provides data and charts showing why this is of utmost importance — for decades the world has ignored unimaginable amounts of suffering of tens of millions of people w/ ME/CFS.
Over the next decade, AI is likely to create an extraordinary amount of new philanthropic capital, much of it concentrated in the US and flowing through EA-adjacent circles. Those networks have the potential to (re)create entire scientific fields. The question for our community is whether ME/CFS and related (post-)infectious illnesses will even enter the conversation. There are good reasons to think they will not do so automatically. For decades, institutional medicine has underestimated the scale and significance of post-infectious chronic illness. Philanthropists will inevitably inherit many of those priors. That is one reason I find initiatives like Intercept so encouraging. They recognize that the downstream consequences of common infections deserve far more attention than they have received. But one critical omission remains. While preventing future infections is essential, prevention comes too late for the millions already living with the long-term consequences of past infections. They need to be part of the same broader framework. Also, the discussion tends to focus on dramatic endpoints such as stroke, dementia, and cardiovascular disease. Those outcomes matter enormously. But there is another burden that is much harder to see and measure: people who simply never feel the same again after an infection. They recover, but not completely. They have less energy, lower exercise capacity, poorer resilience, and a persistent decline in everyday functioning that often escapes diagnosis. Some meet criteria for ME/CFS. Many probably do not. Together they may represent one of the largest consequences of infectious disease, yet they barely register in this conversation. They remain mostly hidden. Nobody knows exactly how these conditions relate biologically, and ME/CFS is almost certainly heterogeneous. But there are good reasons to investigate potential overlaps with mechanisms of aging and the possibility that there is a continuum between "not feeling the same" and ME/CFS. If the next generation of philanthropists is going to reshape medicine, we need to help them see the whole picture through careful reasoning, honest uncertainty, and the best evidence we have. Once you do see it, it becomes difficult to understand why (post-)infectious illness remains so neglected.
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CrunchME retweeted
Really pleased to say that Michael (@Michaeltikus) and Fiona (@pheob289) are the new co-leads for the CrunchME ecosystem database 🌱 They've done great work adding to it and updating it since it first started. If you have any suggestions for additions, or would like to contribute to it yourself, please tag in or reach out to them! #MECFS #LongCOVID
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CrunchME retweeted
Replying to @sunsweptforest
At @wecrunchme we have had over 1.8 million views of our data-centric advocacy visuals on Instagram! And launched our new website
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CrunchME retweeted
Thank you so much to all those who have supported @wecrunchme in 2025 - volunteers and donors 🙏💙 If you'd like to help us prepare for 2025, and are in a position to do so, we have opened our Festive Fundraiser for 2026 🎄 Link below and in our bio! #mecfs #longcovid
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CrunchME retweeted
The 2024 survey from European ME Alliance shows just how disabling ME/CFS can be: 💙 54% are mostly housebound 💙 Nearly 1 in 5 are mostly or completely bedridden ME/CFS is far from 'just fatigue', but an immensely debilitating & serious multi-system disease, which demands far greater recognition & funding. #MECFS #LongCovid
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