Shelley
@shellchat.bsky.social
Reformed journo/editor, now working in health comms. Fighter of injustice in all its forms. Advocate for better research & support for ppl w uninvited friends POTS, ME/CFS, MCAS, LC, EDS, SjD, AnkSp plus other misunderstood AI conditions.
Reposted by 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... 🧪 🧵
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... 🧪 🧵
www.pure.ed.ac.uk
August 7, 2025 at 3:15 PM
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... 🧪 🧵
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... 🧪 🧵
Reposted by Shelley
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
@cgatist.bsky.social
June 20, 2025 at 12:00 PM
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
@cgatist.bsky.social
Reposted by Shelley
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."
⤵️
Zelenskyy responded to Trump's comparison of the Russo-Ukrainian war to "two little kids fighting in a park."
⤵️
June 7, 2025 at 8:52 AM
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."
⤵️
Zelenskyy responded to Trump's comparison of the Russo-Ukrainian war to "two little kids fighting in a park."
⤵️
Reposted by Shelley
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! 🎉🌟
April 29, 2025 at 5:54 AM
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! 🎉🌟
Reposted by Shelley
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
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
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...
medicalxpress.com
April 23, 2025 at 10:40 AM
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
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
Reposted by Shelley
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...
I hope you’ll read and share the piece.
stanforddaily.com/2025/04/22/w...
What DEI threatens isn’t merit. It’s monopoly.
Political science professor Hakeem Jefferson argues for DEI's importance to de-monopolizing universities.
stanforddaily.com
April 23, 2025 at 12:23 AM
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...
I hope you’ll read and share the piece.
stanforddaily.com/2025/04/22/w...
Reposted by Shelley
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
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.
medicalxpress.com
April 17, 2025 at 8:32 PM
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
Reposted by Shelley
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
April 17, 2025 at 6:21 AM
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
Reposted by Shelley
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
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
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
April 18, 2025 at 2:00 AM
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
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
Reposted by Shelley
3/
Myth versus fact
The Myalgic Encephalomyelitis Edition
From:
worldmealliance.org/2025/04/worl...
#MyalgicEncephalomyelitis #MEcfs
Myth versus fact
The Myalgic Encephalomyelitis Edition
From:
worldmealliance.org/2025/04/worl...
#MyalgicEncephalomyelitis #MEcfs
April 17, 2025 at 5:56 PM
3/
Myth versus fact
The Myalgic Encephalomyelitis Edition
From:
worldmealliance.org/2025/04/worl...
#MyalgicEncephalomyelitis #MEcfs
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.”
"Products intended to keep homes smelling fresh can set people up for a lifetime of chemically induced illness, & repeated exposure to small amounts of household chemicals can trigger symptoms to previously tolerated chemicals"
pmc.ncbi.nlm.nih.gov/articles/PMC...
#ScentFreeSpaces #Disability #VOCs
pmc.ncbi.nlm.nih.gov/articles/PMC...
#ScentFreeSpaces #Disability #VOCs
INDOOR AIR QUALITY: Scented Products Emit a Bouquet of VOCs
pmc.ncbi.nlm.nih.gov
March 24, 2025 at 12:24 PM
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.”
Reposted by Shelley
oh my GOD i love it
March 21, 2025 at 6:54 PM
oh my GOD i love it
Reposted by Shelley
@meactnet.bsky.social has a few temp qual research positions available 👇
Four contract qualitative researcher opportunities!
Qualitative researchers looking to pick up work and grad students looking to get more experience with qualitative coding-- #MEAction has four short-term opportunities for qualitative analysis work! Details below. 🧪
lnkd.in/gXX4_8Ff
Qualitative researchers looking to pick up work and grad students looking to get more experience with qualitative coding-- #MEAction has four short-term opportunities for qualitative analysis work! Details below. 🧪
lnkd.in/gXX4_8Ff
March 21, 2025 at 10:48 PM
@meactnet.bsky.social has a few temp qual research positions available 👇
Reposted by Shelley
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!
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!
March 19, 2025 at 8:58 PM
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!
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!
Reposted by Shelley
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...
"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...
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...
www.vogue.co.uk
March 22, 2025 at 7:50 AM
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...
"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...
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.
March 22, 2025 at 5:39 AM
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.
Reposted by Shelley
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/
March 21, 2025 at 9:00 PM
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/
Reposted by Shelley
January 9, 2025 at 12:57 AM
Reposted by Shelley
“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...
“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...
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 ...
www.youcanknowthings.com
January 8, 2025 at 4:36 AM
“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...
“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...
Reposted by Shelley
New research paper: 'Abnormal T-Cell Activation and Cytotoxic T-Cell Frequency Discriminates Symptom Severity in ME/CFS'
www.medrxiv.org/content/10.1...
www.medrxiv.org/content/10.1...
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 ...
www.medrxiv.org
January 8, 2025 at 7:54 AM
New research paper: 'Abnormal T-Cell Activation and Cytotoxic T-Cell Frequency Discriminates Symptom Severity in ME/CFS'
www.medrxiv.org/content/10.1...
www.medrxiv.org/content/10.1...
Reposted by Shelley
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 🥰
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 🥰
January 5, 2025 at 8:18 AM
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 🥰
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 🥰
Reposted by Shelley
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...
Not Just Gus Walz: Understanding the Ableist Logic of Toxic White Masculinity in the New Eugenics Era
disabilityvisibilityproject.com/2024/12/15/n...
December 16, 2024 at 1:14 AM
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...
Not Just Gus Walz: Understanding the Ableist Logic of Toxic White Masculinity in the New Eugenics Era
disabilityvisibilityproject.com/2024/12/15/n...
Reposted by Shelley
Interesting replies to this question out of Chat GPT…worth the read.
Following a report of an M.E. patient's recovery after treatment with the JAK1 Inhibitor, Rivoq (Upadacitinib), I was curious to explore what the specific therapeutic mechanism of action might be.
Reducing the elevated level of circulating Fibronectin might be the answer:
chatgpt.com/share/673eea...
Reducing the elevated level of circulating Fibronectin might be the answer:
chatgpt.com/share/673eea...
ChatGPT - Rinvoq in ME Fibronectin
Shared via ChatGPT
chatgpt.com
November 21, 2024 at 11:10 AM
Interesting replies to this question out of Chat GPT…worth the read.