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Billy Hanlon @bhanlon15.bsky.social · 14h

Mariners - Tigers Game 5 extra innings is cinema

a baseball player wearing a green shirt that says manners

ALT: a baseball player wearing a green shirt that says manners

media.tenor.com

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Reposted by Billy Hanlon

thetranscendedman @atranscendedman.bsky.social · 23h

At the University of East Anglia, scientists studied 108 people and found distinct epigenetic changes in immune cells that identified chronic fatigue syndrome with 96% accuracy.

The discovery could lead to the first reliable blood test for ME/CFS.

www.nature.com/articles/d41...

First proposed blood test for chronic fatigue syndrome: what scientists think

A blood test has achieved 96% accuracy in diagnosing the condition in a small study of individuals. What does the test detect, and is it a biomarker of the condition?

www.nature.com

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Billy Hanlon @bhanlon15.bsky.social · 22h

The Independent: 'A blood test could diagnose chronic fatigue with 96% accuracy. Here’s what we know'

'Despite affecting millions of people worldwide, myalgic encephalomyelitis or chronic fatigue syndrome remains poorly understood'

www.the-independent.com/life-style/h...

A blood test could diagnose chronic fatigue with 96% accuracy. Here’s what we know

Despite affecting millions of people worldwide, myalgic encephalomyelitis or chronic fatigue syndrome remains poorly understood

www.the-independent.com

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Reposted by Billy Hanlon

C.H. Romatowski @chromatowski.bsky.social · 3d

Great piece on joint hypermobility, which is common among people with Long Covid and related chronic conditions.

I’d add getting diagnosed can lend important insight into how to protect yourself. Better to know in advance than find out the hard way that, say, yoga could really mess you up.

Miles W. Griffis @mileswgriffis.bsky.social · 3d

Hypermobility is a common, overlapping condition with Long COVID. Upcoming guidelines may make it easier for people to be diagnosed with the syndrome.

A new feature by Margot Armbruster in @thesicktimes.org

thesicktimes.org/2025/10/07/g...

Getting diagnosed with hypermobility can help some people with Long COVID. Upcoming guidelines may make it easier. - The Sick Times

Current diagnostic criteria for hypermobile Ehlers-Danlos syndrome (hEDS), a common comorbidity of Long COVID, are restrictive. The Ehlers-Danlos Society is developing new hEDS criteria that will be r...

thesicktimes.org

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Reposted by Billy Hanlon

margot @marmb.bsky.social · 3d

pleasure working with @thesicktimes.org <3

Miles W. Griffis @mileswgriffis.bsky.social · 3d

Hypermobility is a common, overlapping condition with Long COVID. Upcoming guidelines may make it easier for people to be diagnosed with the syndrome.

A new feature by Margot Armbruster in @thesicktimes.org

thesicktimes.org/2025/10/07/g...

Getting diagnosed with hypermobility can help some people with Long COVID. Upcoming guidelines may make it easier. - The Sick Times

Current diagnostic criteria for hypermobile Ehlers-Danlos syndrome (hEDS), a common comorbidity of Long COVID, are restrictive. The Ehlers-Danlos Society is developing new hEDS criteria that will be r...

thesicktimes.org

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Reposted by Billy Hanlon

betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 3d

We just reached 10,000 (!!!) newsletter subscribers at The Sick Times, and we are doing a giveaway to celebrate! If you already read it, you can enter by forwarding the newsletter to a friend :)

The Sick Times @thesicktimes.org · 4d

We’ve hit 10K newsletter subscribers, so we’re giving away five The Sick Times swag packs, including pins, stickers, a patch, and our famous dad hat!

Sign up for our newsletter, or forward a recent newsletter to a friend, then comment “10K GIVEAWAY” to be entered. thesicktimes.org/newsletter/

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Reposted by Billy Hanlon

Heather Hogan @heatherhogan.bsky.social · 3d

You fundraiser perks are coming @thesicktimes.org readers! I dropped off four bike crates full of packages at the post office today! (And now I’m gonna take a nap 😅)

Don’t forget to post pics of yourself in your new TST dad hats and tag us!

A blue e-bike with a crate attached to the back. The crate is full of manilla envelopes.

A middle age lesbian wearing a khaki hat that reads “THE SICK TIMES” in stitched purple letters.

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Reposted by Billy Hanlon

The Sick Times @thesicktimes.org · 3d

Getting diagnosed with hypermobility can help some people with Long COVID. Upcoming guidelines may make it easier. Read more from @marmb.bsky.social: bit.ly/3VVXSf6

Graphic with a zebra-print background, representing EDS awareness. At the center of the image, there is a plus icon for healthcare offset with cartoon representations of the virus SARS-CoV-2. The text reads, “The Sick Times. Getting diagnosed with hypermobility can help some people with Long COVID. Upcoming guidelines may make it easier. By Margot Armbruster.”

Key points you should know:

Current diagnostic criteria for hypermobile Ehlers-Danlos syndrome (hEDS), a common comorbidity of Long COVID, are restrictive. Many people receive a diagnosis of hypermobility spectrum disorder (HSD) instead, but say doctors don’t take HSD as seriously as hEDS.

The Ehlers-Danlos Society is developing new hEDS criteria that will be released in 2026. Some experts think the new criteria may enable more patients to get an hEDS diagnosis.

Experts are also debating whether hypermobility is primarily a genetic condition or could also be caused by immune reactions to triggers like toxins and viral infections, including SARS-CoV-2.

People who are able to show how hypermobility affects their daily activities and interacts with their other conditions may be able to secure disability benefits or accommodations at work.

Moving forward, the Ehlers-Danlos Society will continue to incorporate patient feedback and scientific research into the forthcoming criteria.

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Reposted by Billy Hanlon

The Sick Times @thesicktimes.org · 2d

🧸 Risk of LC doubled in children following SARS-C0V-2 reinfection

🩸 Researchers may have found a biomarker & treatment target for cognitive dysfunction in LC

💉 Clinical trial recruiting to test the GLP-1 agonist drug Liraglutide for LC

This week's #LongCOVID research updates: bit.ly/48j2kMt

🧸 A new study that found the risk of Long COVID doubled in children following SARS-C0V-2 reinfection made mainstream headlines this week. As part of the National Institutes of Health (NIH) RECOVER program, researchers assessed health records from over 460,000 participants under the age of 21 across 40 hospital systems and found that the risk of developing Long COVID may be cumulative with each infection. The authors stated the findings aligned with studies on adults and emerging evidence on immune waning post-infection. “The new evidence that reinfections can trigger or worsen this chronic condition suggests that the societal burden is set to grow,” researcher Danilo Buonsenso (who was not involved with the study) wrote in an editorial about it.

🩸 Researchers in Japan may have found a potential biomarker and treatment target for cognitive dysfunction in Long COVID. The small study, published in Brain Communications, assessed 30 participants with the disease and compared them to 80 controls using advanced brain imaging. They discovered a significantly increased density of AMPA receptors in people with Long COVID; these are learning and memory receptors found in the brain and spinal cord. Based on their findings, the researchers suggested future clinical trials on drugs that target AMPA receptors, like perampanel, which is used to treat some types of epilepsy.

💉 A new phase 1 clinical trial is currently recruiting to test the GLP-1 agonist drug Liraglutide for Long COVID, multiple sclerosis, and acute leukemia. The small study plans to recruit 30 participants with a body mass index over 27 at its study site in Chicago, Illinois. Researchers will measure how the drug affects a disease marker called Brain Derived Neurotrophic Factor (BDNF). The NIH’s RECOVER-Treating Long COVID initiative is also planning a clinical trial for Long COVID using another GLP-1 agonist drug (the exact drug has not been officially announced). Study contact: cancerclinicaltrials@bsd.uchicago.edu.

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Reposted by Billy Hanlon

Miles W. Griffis @mileswgriffis.bsky.social · 1d

NEW: 53 participants involved in the Vyvgart trial for Long COVID are calling on the government to fund research for the drug after they saw significant improvements that the study didn’t capture.

thesicktimes.org/2025/10/10/v...

Vyvgart brought us back to life, but the Long COVID trial was canceled. We are calling on the NIH and HHS to study the drug. - The Sick Times

We are a group of 53 individuals with Long COVID from across the U.S. In 2023, we joined a Long COVID clinical trial for Vyvgart (efgartigimod), a drug approved by the Food and Drug Administration (FD...

thesicktimes.org

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Reposted by Billy Hanlon

The Sick Times @thesicktimes.org · 1d

A group of 53 people with #LongCOVID joined a clinical trial for Vyvgart. For many of them, the treatment changed everything.

Then, without warning, Argenx canceled the trial.

Most of them have now relapsed.

They're calling on the NIH and HHS to study the drug: bit.ly/48l1Qp5

A photo Nicole Barrick, a woman in a pink KN95 mask, receives an infusion of Vyvgart. The text reads, "The Sick Times. Vyvgart brought us back to life, but the Long COVID trial was canceled. We are calling on the NIH and HHS to study the drug. By Clare Banaszewski, Nicole Barrick, Mike Bilik, Addie Davis, Mia Delli Gatti, Ellie Hayes, Roman White."

"For those living with Long COVID, every ounce of hope is hard-won. This isn’t just about physical symptoms. It’s about the emotional toll of being given hope — and then having it taken away." - Vyvgart clinical trial participants
Clare Banaszewski, Nicole Barrick, Mike Bilik, Addie Davis, Mia Delli Gatti, Ellie Hayes, Roman White

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Billy Hanlon @bhanlon15.bsky.social · 22h

H/T @thesicktimes.org

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Billy Hanlon @bhanlon15.bsky.social · 22h

The Sick Times: 'Vyvgart brought us back to life, but the Long COVID trial was canceled. We are calling on the NIH and HHS to study the drug.'

By Clare Banaszewski, Nicole Barrick, Mike Bilik, Addie Davis, Mia Delli Gatti, Ellie Hayes, Roman White

thesicktimes.org/2025/10/10/v...

Vyvgart brought us back to life, but the Long COVID trial was canceled. We are calling on the NIH and HHS to study the drug. - The Sick Times

We are a group of 53 individuals with Long COVID from across the U.S. In 2023, we joined a Long COVID clinical trial for Vyvgart (efgartigimod), a drug approved by the Food and Drug Administration (FD...

thesicktimes.org

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Billy Hanlon @bhanlon15.bsky.social · 23h

Bateman Horne: “When the Body’s Alarm Won’t Turn Off”

‘The results, taken together, suggest an immune system that’s hypersensitive to danger signals, a metabolism struggling to generate clean energy…’

batemanhornecenter.org/when-the-bod...

When the Body’s Alarm Won’t Turn Off

Blog Summary Imagine if a fire alarm kept ringing long after the smoke was gone. That’s similar to what happens in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), where the body seems…

batemanhornecenter.org

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Billy Hanlon @bhanlon15.bsky.social · 1d

Solve ME: “Unique Blood-based Test Holds Much Promise for Diagnosing People with ME/CFS”

“A critical next step will be to investigate whether the EpiSwitch test can distinguish people with ME/CFS from people with these other diseases”

solvecfs.org/unique-blood...

Unique Blood-based Test Holds Much Promise for Diagnosing People with ME/CFS - Solve ME/CFS Initiative

Dr. Dmitri Pchejetski, at the University of East Anglia Medical School (United Kingdom), has developed a new blood-based assay, the EpiSwitch CFS test, that may prove very effective for diagnosing peo...

solvecfs.org

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Reposted by Billy Hanlon

OhTWIST @ohtwist.bsky.social · 7d

A (not so) New Disease Cluster: #MCAS, #POTS & #EDS via JACI 2015: www.jacionline.org/article/S009... #MedEd #FOAMed #medicine #zebras #doctors #nurses #MedStudents #MedTwitter #doctors #nurses #NEISvoid

A New Disease Cluster: Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome, and Ehlers-Danlos Syndrome

Patients with postural orthostatic tachycardia syndrome (POTS) and hypermobility often describe symptoms suggestive of mast cell activation. Herein, we describe a new, unique phenotype, characterized ...

www.jacionline.org

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Billy Hanlon @bhanlon15.bsky.social · 1d

University of Toledo: 'POTS Patient Finds World-Class Care in Toledo'

'With nearly 40 years of experience studying and treating the condition, Grubb is one of the world’s leading voices on POTS, drawing patients from across the country.'

news.utoledo.edu/index.php/10...

POTS Patient Finds World-Class Care in Toledo | UToledo News

UToledo Health cracked the mystery of Chris Bowers’ unexplained symptoms, leading to nearly 20 years of lasting relief and peace of mind.

news.utoledo.edu

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Reposted by Billy Hanlon

Rhys Pockett @notrhyspockett.bsky.social · 1d

I'm very cautious about this. It's a small study and will need replication but could be really exciting for both identification of cases and identifying disease pathways and treatment options.

Billy Hanlon @bhanlon15.bsky.social · 2d

Female First: 'Scientists create first accurate blood test for chronic fatigue syndrome'

'The test..showed 92% sensitivity and 98% specificity. The team examined 47 patients with severe ME/CFS and compared results to 61 healthy individuals.'

www.femalefirst.co.uk/lifestyle/sc...

Scientists create first accurate blood test for chronic fatigue syndrome

Scientists say they have developed the worlds first accurate blood test to diagnose myalgic encephalomyelitis, also known as chronic fatigue syndrome MECFS.

www.femalefirst.co.uk

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Billy Hanlon @bhanlon15.bsky.social · 1d

The Mirror: 'New blood test could diagnose serious condition patients are told is ‘in their head’

'Scientists have developed a blood test to diagnose chronic fatigue syndrome with 96% accuracy'

www.mirror.co.uk/news/health/...

New blood test could spot serious condition often misdiagnosed

Scientists have developed a blood test to diagnose chronic fatigue syndrome with 96% accuracy

www.mirror.co.uk

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Billy Hanlon @bhanlon15.bsky.social · 1d

The Conversation: 'Can a new blood test really detect ME/CFS? An expert unpacks new research'

By Sarah Annesley, Senior Postdoctoral Research Fellow in Cell and Molecular Biology, La Trobe University

theconversation.com/can-a-new-bl...

Can a new blood test really detect ME/CFS? An expert unpacks new research

Diagnosis for myalgic encephalomyelitis/chronic fatigue syndrome currently relies on sometimes controversial diagnostic criteria – and can take years.

theconversation.com

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Billy Hanlon @bhanlon15.bsky.social · 1d

Wales Online: 'New blood test could provide hope for misdiagnosed condition affecting 400,000 in UK'

'Chronic fatigue syndrome has been lacking reliable diagnostic tools, often leaving patients misdiagnosed and facing an arduous journey to find support'

www.walesonline.co.uk/news/health/...

New blood test could provide hope for misdiagnosed condition

Chronic fatigue syndrome has been lacking reliable diagnostic tools, often leaving patients misdiagnosed and facing an arduous journey to find support

www.walesonline.co.uk

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Billy Hanlon @bhanlon15.bsky.social · 1d

Nature: 'First proposed blood test for chronic fatigue syndrome: what scientists think'

'A blood test has achieved 96% accuracy in diagnosing the condition in a small study of individuals. What does the test detect, and is it a biomarker of the condition?'

www.nature.com/articles/d41...

First proposed blood test for chronic fatigue syndrome: what scientists think

A blood test has achieved 96% accuracy in diagnosing the condition in a small study of individuals. What does the test detect, and is it a biomarker of the condition?

www.nature.com

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Reposted by Billy Hanlon

valebodi.bsky.social @valebodi.bsky.social · 1d

“Well said! It’s not rest, a strange feeling to never or rarely feel rejuvenated. Like a permanent sick “rest” without recharging and feeling rested. Very unnatural & not a full life. It’s actual torture in a sense. Limited life force. People will never understand.”

#ME/CFS #pwME

valebodi.bsky.social @valebodi.bsky.social · 2d

When “Rest” does not feel like an accurate term (in regard to #ME/CFS)

To me, rest has a positive connotation. My idea of resting when I was healthy was taking a long hot shower, taking a bubble bath, having a spa day, lounging on the beach, reading a book, or binge watching a tv series in bed.

From the cfs community on Reddit

Explore this post and more from the cfs community

www.reddit.com

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Reposted by Billy Hanlon

Alex @admiringbog.bsky.social · 2d

I’ve learnt an incredible amount about #ME/CFS from social media.

Conrad Hackett @conradhackett.bsky.social · 3d

Has anything great happened in your life because of social media?

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Reposted by Billy Hanlon

valebodi.bsky.social @valebodi.bsky.social · 2d

When “Rest” does not feel like an accurate term (in regard to #ME/CFS)

To me, rest has a positive connotation. My idea of resting when I was healthy was taking a long hot shower, taking a bubble bath, having a spa day, lounging on the beach, reading a book, or binge watching a tv series in bed.

From the cfs community on Reddit

Explore this post and more from the cfs community

www.reddit.com

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