Thanks so much Christophe!

This week at The Sick Times, @rorpreston.bsky.social shares why he founded CrunchME, a new patient-led organization seeking to compile evidence and accelerate research on ME, Long COVID, and other Infection Associated Chronic Conditions (IACCs). bit.ly/4hvBUrw

I wanted to call out @rorpreston.bsky.social and his team of volunteers, for their brilliant work in gathering all the facts and figures about #ME/CFS and #LongCovid in one place over at www.crunchme.org If you can afford to, please consider donating: gofund.me/2b3d5185

As our Clinical Trials database continues to grow, we will be spotlighting some of the treatments being tested around the world, for Long COVID, ME/CFS & other IACCs 💊 Thank you to @mildtin.bsky.social, our clinical trials lead, for putting these together! A visual thread 🧵 #MECFS #LongCovid

I have now added some new caps to the Against ME & Co. line up 🧢 We have 'Cure Long Covid' in faded pink and red lettering, and 'Cure POTS' in faded navy and pink lettering If you'd like one, you can get there here 🔗 yewjk2-s6.myshopify.com Thank you for your support! #MECFS #LongCovid #POTS

The case for ramping up ME/CFS research, through both public and private funding, is absolutely compelling 📈 Especially in light of the COVID-19 pandemic, which has significantly worsened this humanitarian crisis happening under our noses A visual thread 🧵

The case for ramping up ME/CFS research, through both public and private funding, is absolutely compelling 📈 Especially in light of the COVID-19 pandemic, which has significantly worsened this humanitarian crisis happening under our noses A visual thread 🧵

A comparison of UK Government research funding for ME/CFS compared to other diseases like MS, IBD and Parkinson's 🧐 @nihr.bsky.social and @ukri.org we need ring-fenced funding for ME as part of the Delivery Plan Thank you to @mediumwhite.bsky.social & co. for analysis #MECFS #NHS

New chart from @crunchme.bsky.social showing just how low NIH funding levels for ME/CFS & Long Covid are compared to disease burden 🔍 $14 and $62 per disability adjusted life year (DALY respectively) #MECFS #LongCovid

Cure ME/CFS caps getting out there to help spread awareness + spark conversation 🔥 If you wanna, you can get yours here 👇 yewjk2-s6.myshopify.com #MECFS #LongCovid

To help fund my work on @crunchme.bsky.social I'm selling 'Cure ME/CFS' caps! If you'd like to buy one, here is the link to my store: yewjk2-s6.myshopify.com Shipping only in the UK for now while I get the ball rolling! Only 5 left of this first batch 👀 #MECFS #LongCovid

This is such an incredibly critical paper and we need so much more of this #MenstruationScience to better understand #WomensHealth and illness!!! Thanks and congrats to all the authors! @rorpreston.bsky.social

Really chuffed to be a co-author on this paper (pre-print) via Visible & Imperial College 💙 Odds of a crash 45% lower during late luteal phase compared to peak during menstrual phase www.medrxiv.org/content/10.1... #MECFS #LongCovid

Your yearly reminder of how shockingly low the funding for MECFS research is.

A shameful lack of funding for an illness which studies have shown offers a significantly lower quality of life than people with cancer, multiple sclerosis, heart attack, or stroke. #MECFS #MyagicEncephalomyelitis #MedicalScandal

This visual shows UK gov funding levels for different diseases over time - analysis by @mediumwhite.bsky.social 💸 It shows how paltry funding for ME has been, especially considering that data from the US suggests the ME disease burden is larger than for the other 3 *combined* 😅 #MECFS #LongCovid

This visual shows UK gov funding levels for different diseases over time - analysis by @mediumwhite.bsky.social 💸 It shows how paltry funding for ME has been, especially considering that data from the US suggests the ME disease burden is larger than for the other 3 *combined* 😅 #MECFS #LongCovid

To advocates & policymakers in the #IACC space: Please check out this new report on data-driven insights and the case for much more attention on & funding for IACCs such as #MECFS & #LongCovid. Please share widely! So thankful to @mildtin.bsky.social for leading this incredible report 💙

Very excited to say that @crunchme.bsky.social's first report is out and about 🙌 The Future is a Policy Choice: Addressing Infection-Associated Chronic Conditions Our goal here is to bring together the key info needed to make the case for taking action *now*! drive.google.com/file/d/17fgU...

I’ll be reading this in its entirely today, @crunchme.bsky.social! Thanks so much! #mecfs #millionsmissing

Really great document, policy-oriented. Every slide is comprehensive, up to date, extremely clear in argumentation, great referencing... Hopefully LOTS of MPs, MEPs and policy-makers will have access to it 👏📌 THANK YOU @mildtin.bsky.social via @crunchme.bsky.social & @rorpreston.bsky.social

Vitally important report from @crunchme.bsky.social on Addressing Infection Associated Chronic Conditions "It brings together much of the key information needed to help bring policymakers up to speed on these conditions - including #LongCovid, #ME/CFS, #POTS"

This is a hugely important paper particularly for policymakers on #ME #LongCovid Thanks to all who worked on it. Please #pwME pass it round. Let’s get this scientific evidence out 🔥

Very excited to say that @crunchme.bsky.social's first report is out and about 🙌 The Future is a Policy Choice: Addressing Infection-Associated Chronic Conditions Our goal here is to bring together the key info needed to make the case for taking action *now*! drive.google.com/file/d/17fgU...

First batch of stock has arrived, online store coming soon! ✌️💙

Anybody in the #ME tech/app field looking for an ME and #LongCovid informed (though not #pwME themselves ) full stack web developer to join the team? @rorpreston.bsky.social

Has anyone had any positive experiences with specialist clinicians or clinics for ME/CFS, Long Covid, POTS, Chronic Lyme or other IACCs? Please shout them out below! Want to make sure our Clinics database in CrunchME reflects community experience! 🩺 crunchme.notion.site/clinics

We've updated the @crunchme.bsky.social scientific conferences & events table with so-far announced details of 2025 events 📅 So if you're wondering what events lie ahead, check it out! Also includes links to recording from the previous event where available crunchme.notion.site/conferences

An overview of where clinical treatment trials are happening for Long Covid, ME/CFS and other IACCs - according to the @wecrunchme database 🌎 🥇 = USA 🥈 = Germany 🥉 = Canada & UK Imo international gov discussion on funding is critical to encourage smaller nations!

It's encouraging to see there has been a significant uptick in the number of biomarker & diagnostic projects for ME/CFS & Long COVID 📈🔬 crunchme.notion.site/biomarkers Note: year relates to publication date if available, initiation date otherwise. Please let us know if we're missing any! 🙏

Thanks to @mildtin.bsky.social, who I'm delighted to say has joined CrunchME as a volunteer contributor, our Biomarkers & Diagnostics Projects table has received a serious refresh 💅 We now have 29 projects listed in there, with 19 of them ongoing. Check it out 👇 crunchme.notion.site/biomarkers

One of our volunteer contributors at CrunchME, Fiona, has done a brilliant job refreshing our Politicians table after the latest UK election 💼 crunchme.notion.site/politicians If you know of any IACC supporters amongst politicians in your country not listed, please let us know! #MECFS #LongCovid

Really struggling to find doctors who understand very severe ME, understand that I cannot speak etc. Does anyone know of a doctor like this in Switzerland? If not possible Germany? Austria? France? @sgme.bsky.social

Where I think it’s all headed for ME and ME-like diseases: mitochondrial transfer. Affected cell lines may receive donations from less affected ones. Treatments may focus on providing reinforcements for those poor, de-energized little beans. 🫘 translational-medicine.biomedcentral.com/articles/10....

2025 energy ⚡

This is beautiful 😍💙 #MECFS #LongCovid

I think this chart is a stark reminder, or informant to many outside our community, that the COVID pandemic *isn't just* about deaths and acute illness. The shadow COVID casts is long indeed 😮

Really looking forward to CrunchME @crunchme.bsky.social and #ThereForME collaborating in 2025 🤝 The #ThereForME team are a class act, and I think our data science & mapping work is sharpest in the context of supporting campaigning & fundraising 🔥

I think this chart really captures the extent to which we need to bend the curve upwards on IACC funding 📈 I call the gap between MS (an underfunded disease) and HIV/AIDS (a highly funded disease) the 'cone of attention' that ME/CFS, Long Covid etc need to push into. crunchme.org 🔗

Great to see people (Yann!) picking up on our new visualisation gallery! 📈 Wanna see more...? crunchme.org 🔗 #MECFS #LongCovid

ME/CFS Publications have steadily increased for a while. Despite this, ME is still one of if not the most underfunded common disabling illness on earth. Source: @crunchme.bsky.social #MEAwarenessHour

Remarkable to see the lack of attention to MCAS (Mast Cell Activation Disorder) within the current context of Long Covid research funding 👀 Given quite a lot of pwLC on here seem to struggle with it - and it can cause rapid deteriorations - deserves more attention? crunchme.org 🔗 #LongCovid #MCAS

Wearable Technology [Visible] in the Management of Complex #ChronicIllness: Preliminary Survey Results on Self-Reported Outcomes www.researchsquare.com/article/rs-5... "Of those with at least 30 days of data, 77% saw improvements in symptoms ..." #MEcfs #CFS #PwME #LongCovid #PASC #PwLC 1/

What an absolute legend 🔥 Thank you David, and also to your whole team at CoRE & Mt Sinai! #MECFS #LongCovid #ThereForME

David Putrino is #ThereForME! @putrinolab.bsky.social is a leading #LongCovid clinician and Director of the @mountsinainyc.bsky.social#ThereForME#LongCovidenter for Recovery From Complex Chronic Illnesses. His message: “Happy Holidays! We won’t stop fighting for pwME! Love David” #PatientSafety #pwME #pwLC

I want to share the intro to CrunchME's fundraising pitch with the community, as I think it most clearly communicates what we're doing and why! 💙 www.loom.com/share/9c5988... #MECFS #LongCovid #PAIS

Thanks so much for the kind words, and so glad it has helped you. I think no question for many, biometric-assisted pacing is a massive improvement on 'guesswork pacing' 🙌

I’ve been using Visible since it first came out. I now use the paid version. It has fundamentally changed my life. Prior, I thought I was pacing properly, but continued to decline. With Visible, I learned quickly how poorly I was actually pacing.

Dec 6: Caroline Nokes, Conservative MP & Deputy Speaker of the House of Commons. Her message: “For everyone with ME and Long Covid- I wish you a very Happy Christmas and want you to know that you’re not forgotten. They are hideous conditions, we need more research & much better understanding.”

Delighted to be a co-author on this 2nd paper with @putrinolab.bsky.social 🙌 Looking at Visible Armband effectiveness, on self-reported outcomes Significant benefits to energy mgmt, understanding of energy budget & some aspect of PEM More modest for improving daily & physical activities