Shelley

Huge congrats to Chris Ponting and the whole Decode ME team on their preprint on #genetics of people with #MECFS!

Pre-print plus li'l video before we get into a deeper dive.

Vid: www.youtube.com/watch?v=0S5u...

Preprint: www.pure.ed.ac.uk/ws/portalfil... 🧪 🧵

A sincere thank you to Prof Chris Ponting for driving ME research in a meaningful way in the UK & for standing up for #pwME

@cgatist.bsky.social

How wonderful !! 👏

Altruistic to stranger or for a friend/family member in need?

President Zelenskyy: "We are not kids with Putin at the playground in the park. He [Putin] is a murderer who came to this park to kill the kids" — ABC News.

Zelenskyy responded to Trump's comparison of the Russo-Ukrainian war to "two little kids fighting in a park."
⤵️

Thrilled to welcome actress and chronic illness advocate, Eliza Charley as our new Ambassador! Known for 'The Fort', 'Time Apart', & 'Neighbours: Road Trip', Eliza lives with Myalgic Encephalomyelitis. Welcome, Eliza! 🎉🌟

Multiple studies show that children face elevated health risks after COVID infection Long COVID can result in increased risk for a variety of serious health problems for young people, including those affecting the kidney, gut, and cardiovascular system, according to a group of new stu...

Long COVID Linked to Organ Damage in Young People

New studies led by UPenn researchers show long COVID may increase the risk of issues affecting the kidneys, gut, and heart in youth. Kids need care that reflects these realities. #PediatricLongCovid

What DEI threatens isn’t merit. It’s monopoly. Political science professor Hakeem Jefferson argues for DEI's importance to de-monopolizing universities.

A colleague at Stanford’s business school used The Stanford Daily to argue—poorly—against DEI. The piece was riddled with historical errors and left one searching for fact, so I broke my public writing hiatus to respond.

I hope you’ll read and share the piece.

stanforddaily.com/2025/04/22/w...

Modulating the brain's immune system may curb damage in Alzheimer's New research suggests that calming the brain's immune cells might prevent or lessen the damaging inflammation seen in Alzheimer's disease.

Enhancing norepinephrine signaling in brain immune cells may reduce inflammation and neuronal injury in Alzheimer's, highlighting a potential early intervention target for tailored therapies. doi.org/g9fxc3

The Greens support all our #MECFS #longCOVID election commitments! Research investment, clinical education, healthcare and disability support access. Thank them and urge all parties to do the same. Tag your local candidates! #FairGoForME

Thank you to the Greens for promising a #FairGoForME 🙌

No commitments yet from Labour? 🤔

#MECFS afflicts growing numbers of Australians since Covid but remains shockingly underfunded and unrecognised.

@chrispicton.bsky.social @markbutlermp.bsky.social

#Auspol #MECFS #LongCovid

 World ME Day Myth vs Fact The Myalgic Encephalomyelitis Edition 12TH MAY Fact ME often starts after an infection, common flu or COVID. Millions of people worldwide have ME, with about 75% of them being women. Many struggle with daily activities, up to 75% cannot work or attend school, and at least 25% of patients are so severely affected that they are housebound or bedridden. What facts do you want the world to understand this World ME Day? Photo Credit: Reinhard Balzer/German Association for ME/CFS

3/

Myth versus fact

The Myalgic Encephalomyelitis Edition

From:
worldmealliance.org/2025/04/worl...

#MyalgicEncephalomyelitis #MEcfs

Ain’t that the truth! “survey of selected scented consumer goods showed the products emitted more than 100 volatile organic compounds (VOCs), including some that are classified as toxic or hazardous by federal laws.”

Before you do delete - I heard you - and I’m so sorry for the horrendous toll of this life-sapping illness. I hope sleep comes and that the waves of grief calm. Your strength to carry on is friggn amazing tbh! I’ve seen what this illness takes.

oh my GOD i love it

@meactnet.bsky.social has a few temp qual research positions available 👇

Have you registered yet?

March 28, 2025 - Research Roundtable: The Acid Test - a Patient-led Study of Lactate in #MECFS and #LongCOVID

Todd Davenport, PhD and Ciara Wright, PhD.
@sunsopeningband.bsky.social and @ciarawrightphd.bsky.social

Registration link and QR code below!

Labour’s Devastating Cuts To Disability Benefits Are A Blow To Us All “As a Disabled writer, let me be clear: disability payments shouldn’t be understood as a replacement for income. Rather, they help to make up for the roughly £1,000 extra a month that Disabled househo...

Lottie Jackson in the British Vogue on #DisabilityBenefits cuts threatening disabled people's independence.
"In the end, it will be impossible for our government to cut its way to the transformative change that people with disabilities so urgently need." www.vogue.co.uk/article/welf...

Thank you - that’s exactly what I thought when I googled too. I just want to bother our doctor with something that’s usual for other MCAS peeps. You know, and be “that parent”.

Is there anyone who can help me identify this rash that looks like a cluster of micro blood vessels bursting under the skin? This is quite different to my son’s usual MCAS rashes. It usually appears in his torso for no apparent reason, unrelated to pressure or heat. 🙏 thank you.

Good news, Brisbane! Soon, eligible donors can donate blood to the AusME Biobank for important ME/CFS and long COVID research. Eligible AusME Registry participants in Qld, watch your inbox. If you're not a member yet and want to contribute, sign up now at https://www.emerge.org.au/ausme/

Watercolour blue blooms surrounding the words. Daily kindness reminder. You don’t have to earn the right to stop rest pace

Daily kindness reminder for all the spoonies and chronics. #pwME #mecfs #longcovid #neisvoid

All of Australia has been hoping n praying he would be found alive. Luckily, it’s our summer here or he wld never have survived more than a few nights in that high country area.

How a neuroscientist solved the mystery of his own long COVID When Jeff Yau started having strange symptoms after his COVID-19 infection – numbness, tingling, and shaking – he experienced what thousands of others with long COVID have found: answers were hard to ...

“How a neuroscientist solved the mystery of his own long COVID”

“More tests revealed the identity of the antibody causing Jeff’s symptoms: an antibody that binds to neurofascin 155…”

www.youcanknowthings.com/how-one-neur...

Abnormal T-Cell Activation And Cytotoxic T-Cell Frequency Discriminates Symptom Severity In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating but poorly-understood disease. ME/CFS symptoms can range from mild to severe, and include immune system effects alongside ...

New research paper: 'Abnormal T-Cell Activation and Cytotoxic T-Cell Frequency Discriminates Symptom Severity in ME/CFS'
www.medrxiv.org/content/10.1...

Photo of a small cove with a beach and palm trees. Text reads: We are not all in the same boat. We are in the same storm. Some have yachts, some have canoes, and some are drowning. Just be kind and help whoever you can.

Happy Sunday lovely phone family. We've had a smattering of snow here ❄️ Anyone else?
The gap between the poorest and richest in society has become a huge chasm. I hope future generations change this for the better, but for now we have to stand together ❤️
Have a great day 😘
#HaveCourageAndBeKind 🥰

Ly Xīnzhèn is an androgynous and transmasculine East Asian person in their early thirties. They have short black hair with light highlights and they’re wearing a blue top with an abstract pattern, a handmade watermelon pin, and a silver magen david necklace.

All new guest essay by @lydiaxzbrown.bsky.social for the Disability Visibility Project

Not Just Gus Walz: Understanding the Ableist Logic of Toxic White Masculinity in the New Eugenics Era

disabilityvisibilityproject.com/2024/12/15/n...

That BMJ review of Long Covid therapies does not show what it says it does The BMJ have published a “living systematic review” of interventions for the management of Long Covid. It sets out to gather all relevant studies, and to comb their findings in order to see what works...

Nice rebuttal of a crap paper.

With thanx to Špela Salamon

thesciencebit.net/2024/11/28/t...

Interesting replies to this question out of Chat GPT…worth the read.