Billy Hanlon

This is so well-written & powerful by @darthfoo.bsky.social

When Your Body Becomes Your Enemy Living with Long COVID’s Brutal Economics

When Your Body Becomes Your Enemy

#LongCovid #MECFS #Disabled

open.substack.com/pub/darthfoo...

this line - "Frequent PEM doesn’t just make you sicker. It steals your life in increments."

so true. sometimes i can't remember what it was like Before.

this is a really good essay about PEM.

Best piece on PEM I've read in awhile. 🏆
I should send it to my money manager, who told me I need to go to the gym to get my health back. Or my doctor who Dx'd me with "exercise intolerance."

This is the best thing I’ve ever read about PEM. My wedding was amazing but I crashed for weeks and my baseline is lower now.

“They’re failing to understand the central mechanism that governs your entire existence.” Bingo! Whether I’m crashed or trying to avoid a crash, my whole life, such as it is, revolves around PEM. That it prevents me from gaining function makes it the one ME symptom I just can’t overcome.

Why I Can’t Just Meet You for Dinner The Reality of Post-Exertional Malaise

This is an excellent piece on PEM by @darthfoo.bsky.social. Seriously considering sending to literally everyone I know.

substack.com/home/post/p-...

Chronic Fatigue Syndrome: Bundesregierung will Erforschung von ME/CFS stärker fördern Die Zahl der Long-Covid- und ME/CFS-Erkrankungen hat seit der Pandemie stark zugenommen. Bis 2036 sollen deswegen 500 Millionen Euro in die Forschung investiert werden.

Germany pledges €500 million for research through the “National Decade Against Post-Infectious Diseases” (2026-2036), including #MECFS and #LongCOVID.

Addressing what they call “one of the greatest public health challenges of the 21st century.”

www.zeit.de/politik/deut...

(S+) Ex-Gesundheitsminister Lauterbach: Forschung gegen ME/CFS wird ausgeweitet Union und SPD wollen mehr Geld in die Erforschung postinfektiöser Erkrankungen wie Long Covid stecken. Deutschland könne damit zum weltweiten Vorreiter werden, sagt Ex-Gesundheitsminister Lauterbach.

After some hardcore protesting in Germany!! Well done‼️‼️🇩🇪🇩🇪

"The coalition plans to invest 500 million euros by 2036 in the fight against #LongCovid and chronic fatigue syndrome (#MECFS)."

www.spiegel.de/politik/karl...

So 💔 & angry… that Alice is gone, Teen Vogue is gone, community care is all but gone, but dangerous infectious diseases are still being given red carpet treatment. The disability, Long Covid, & ME communities keep losing people, & it doesn’t have to be this way. We can do better. We must.

One Red Leaf at a Time Greetings Cards - Raising funds for research into Myalgic Encephalomyelitis Since so many of you have asked, greetings cards featuring images from the Red Leaf Creative Collaborative are now available to purchase.

Available to buy now: One Red Leaf at a Time Greetings Cards.

All proceeds go to our #MEcfs research @uoe-igc.bsky.social.

Thank you @drjogreer.bsky.social & Dr Clare Raynor!

theredtreeandme.substack.com/p/one-red-le...
#oneredleafatatime

"Participants were asked to perform upper body exercise initially and bring-in the lower body exercises in week 3."
=GET by any other name.

1) 🇺🇸 The RECOVER study published its data on Long COVID trajectories.

Of those infected with SARS-CoV-2 infection, 5% had persistently high Long COVID-related symptom burden. An additional 12% had a high burden that fluctuated but did not improve over time.

Tessa Munt MP introduces the #MEWHDebate

She notes how over half those with Long Covid now meet the diagnostic criteria for ME, including teachers and healthcare workers.

Women are 5x more likely to get ME than men.

Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise - The Sick Times An analysis by The Sick Times find that less than 15% of Long COVID clinical trials testing the benefits of exercise or cardiopulmonary rehabilitation measured post-exertional malaise, according to th...

I've been surprised to see how many Long COVID trials focus on exercise & how few measure PEM.

Thanks to @spichaksimon.bsky.social for covering this in @thesicktimes.org

"Testing exercise is “money down the drain” & won’t advance understanding of LC, experts say"

thesicktimes.org/2025/11/21/l...

Clip: Julie Heath shares the impact of becoming a carer for her husband and two children with #MECFS, and how she’s become their advocate because they don’t have the energy to do things like speak to their GP. ME/CFS doesn’t just affect individuals it affects whole families.

I was reminded of Anne today. I saw that it's almost 8 years since she died.
I read her last words again.

I so wish the world would have been better by now. That her words had made the impact they deserved.
That we weren't still dying.
TW: Assisted death
#SevereME #VerySevereME #PwME #NEISvoid

H/T @the-polyphony.bsky.social

Brilliant post by @kacheston.bsky.social

Privilege and Pain: Why the Medical Humanities Matter Katharine Cheston reflects on her own experience of ME and the need for a more caring, curious, and compassionate approach to health research.

Katharine Cheston reflects on her own experience of ME and the need for a more caring, curious, and compassionate approach to health research.

thepolyphony.org/2025/10/09/p...

This year, I've been lucky enough to work with @actionforme.bsky.social, as part of a collaboration between Action for ME and @durhamimh.bsky.social. (More on this soon!)

For now, this reflective post explains my motivations - and what I believe a collaborative, cross-sector approach can achieve.

An incredibly moving post:

"I have spent the vast majority of my 20s in bed and alone in the darkness and silence"

H/T @kacheston.bsky.social

Privilege and Pain: Why the Medical Humanities Matter Katharine Cheston reflects on her own experience of ME and the need for a more caring, curious, and compassionate approach to health research.

October, 2025: The Polyphony: 'Privilege and Pain: Why the Medical Humanities Matter'

'Katharine Cheston reflects on her own experience of ME and the need for a more caring, curious, and compassionate approach to health research'

thepolyphony.org/2025/10/09/p...

ME and ME-like symptoms affect approximately 1.35 million people in the UK.
Find out how @kacheston.bsky.social, from our Department of Sociology and @durhamimh.bsky.social, is collaborating with @actionforme.bsky.social to understand the impact of this condition: www.durham.ac.uk/news-events/...

The Big Survey is now live!

It has been such a privilege to get to work on this with such a wonderful, inspiring team at @actionforme.bsky.social, including our brilliant Patient and Public Involvement Group, made up of people with lived experience of ME and Long Covid.

Privilege and Pain: Why the Medical Humanities Matter Katharine Cheston reflects on her own experience of ME and the need for a more caring, curious, and compassionate approach to health research.

I recently wrote a reflective piece for the Polyphony blog @the-polyphony.bsky.social explaining the motivations behind my work on ME, and what I think a medical humanities approach has to offer this field - and health research more generally

thepolyphony.org/2025/10/09/p...

❗Help us spread ME/CFS awareness❗

People living with #ME/CFS are severely ill, yet often don't receive welfare, specialised medical treatment and accessible education opportunities.
Furthermore, sufficient awareness in the areas of politics, healthcare and research is lacking.

David Tuller's Trial by Error Fall 2025 Help UC Berkeley raise $68,000 for the project: David Tuller's Trial by Error Fall 2025. Your gift will make a difference!

For several years, I have spent my time busting terrible and even fraudulent research into ME, ME/CFS, Long COVID, etc. If this crowdfunding works out, I will do one more in the spring and then retire from Berkeley. If you'd like to support my work, here's how: crowdfund.berkeley.edu/project/47768

#MECFS pals—

There’s a study going on to assess whether FUNCAP can be used to capture PEM in the moment, in addition to its original purpose to capture the average impact PEM has on you.

You take their surveys twice, once during PEM and once after you recover.

Sign up at the link below!