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Alexis M. 🎃

@turnoftheshrew.bsky.social

1.5K followers 530 following 170 posts

Here for the latest research + advocacy for Long Covid, ME/CFS, dysautonomia, connective tissue disorders, etc + disability justice community. Former HCP.

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Alexis M. 🎃 @turnoftheshrew.bsky.social · Apr 4

In case anyone else needs this today: the best advice I ever read about #MECFS was “no one else is going to lie in that bed for you.” The decisions, fragile routine, the totally altered perspective on life— they don’t have to make sense to anyone else, bc they don’t have to live w/ the consequences.

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Reposted by Alexis M. 🎃

The Sick Times @thesicktimes.org · 21h

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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Alexis M. 🎃 @turnoftheshrew.bsky.social · 1d

So relatable haha

Reposted by Alexis M. 🎃

It's ME(Jaime) @exceedhergrasp1.bsky.social · 2d

OK so I read through this study, and here are my conclusions:
- What a cool tech to examine epigenetic factors so closely!
- This is a small study
- This only differentiates severe-presenting patients from healthy controls; hasn't been used to diagnose ME/CFS *versus* other inflammatory illness. 🧪

Billy Hanlon @bhanlon15.bsky.social · 2d

Open Access Government: 'UEA develops blood test for ME/CFS with 96% accuracy'

'A groundbreaking blood test from UEA can diagnose ME/CFS with 96% accuracy, offering hope for patients and new insights into chronic fatigue syndrome'

www.openaccessgovernment.org/uea-develops...

UEA develops blood test for ME/CFS with 96% accuracy

A blood test from UEA can diagnose ME/CFS with 96% accuracy, offering hope for patients and new insights into chronic fatigue syndrome

www.openaccessgovernment.org

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Alexis M. 🎃 @turnoftheshrew.bsky.social · 1d

Oh I see. I think I missed taking a good look at the first one

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Alexis M. 🎃 @turnoftheshrew.bsky.social · 1d

Fair point!

Alexis M. 🎃 @turnoftheshrew.bsky.social · 1d

There’s many new apps and services popping up using AI and data tracking to help people with #chronicillness manage symptoms, predict treatments, pace energy, etc. I find it hard to reconcile with using them in the current increasingly scary political climate. How are others feeling about this?

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Reposted by Alexis M. 🎃

MedPage Today @medpagetoday.com · 2d

"There is nothing beautiful about shifting the burden onto those least able to bear it. But this is precisely what our nation is now poised to do."

ME/CFS and long COVID advocate Laurie Jones writes on Medicaid work requirements. https://www.medpagetoday.com/opinion/second-opinions/117839?trw=no

Opinion | Medicaid Work Requirements Will Devastate People With Invisible Disabilities

ME/CFS and long COVID patients must qualify as 'medically frail'

www.medpagetoday.com

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Alexis M. 🎃 @turnoftheshrew.bsky.social · 1d

New oxaloacetate study:

“OAA supplementation was associated with improved cognitive performance and small improvement in UP Time in #MECFS participants receiving OAA.”
www.frontiersin.org/journals/neu...

Frontiers | Relationships between fatigue, cognitive function, and upright activity in a randomized trial of oxaloacetate for myalgic encephalomyelitis/chronic fatigue syndrome

BackgroundMyalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating condition characterized by fatigue, cognitive impairment, and reduced...

www.frontiersin.org

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Reposted by Alexis M. 🎃

Danielle Beckman @daniellebeckman.bsky.social · 2d

Join us at the Canadian Collaborative Conference on #ME, 100% free and online!
Register here: icancme.ca/research/202...
#MyalgicEncephalomyelitis #MECFS #LongCovid

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Alexis M. 🎃 @turnoftheshrew.bsky.social · 3d

Desensitized *

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Alexis M. 🎃 @turnoftheshrew.bsky.social · 3d

Caffeine from coffee or a diet Dr Pepper or other soda helps take the edge off for me. The only time I drink caffeine is when I have a headache so maybe it works better for me since I’m not densitized to it, but it is an ingredient in excedrin migraine

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Alexis M. 🎃 @turnoftheshrew.bsky.social · 3d

10K GIVEAWAY 🙂

Reposted by Alexis M. 🎃

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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Alexis M. 🎃 @turnoftheshrew.bsky.social · 5d

These chicken photos are really making me smile 😊 🐔

Reposted by Alexis M. 🎃

MedPage Today @medpagetoday.com · 6d

Children reinfected with Omicron-variant SARS-CoV-2 were twice as likely to develop long COVID & a range of related symptoms as those infected only once, according to a retrospective cohort study of nearly half a million U.S. children.
https://www.medpagetoday.com/infectiousdisease/longcovid/117787

Second Infection Doubles Long COVID Risk in Kids

Post-acute sequelae of virus may become a long-term problem for many children

www.medpagetoday.com

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Alexis M. 🎃 @turnoftheshrew.bsky.social · 6d

I’ve grown so weary of healthy people reminding sick people to have hope. How do they think we’ve survived it all, many of us alone? We are already far more resilient than they can understand. Hope is not a balm for the reality of pain, it is a witness to it. #pwME #LongCovid #chronicillness #MECFS

Screenshot of a tweet by Matthew @CrowsFault: People speak of hope as if it is this delicate, ephemeral thing made of whispers and spiders webs. It’s not. Hope has dirt on her face, blood on her knuckles, the grit of the cobblestones in her hair, and just spat out a tooth as she rises for another go. (Posted on March 10, 2022 at 2:21 PM.)

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Alexis M. 🎃 @turnoftheshrew.bsky.social · 7d

Have disabled incoming private messages on here bc apparently I’m no longer allowed to use the chat feature without verifying my age using personal sensitive data? Which I will not be doing. I resent #chronicillness for forcing me into necessary online spaces when my soul hates social media 🤪

Reposted by Alexis M. 🎃

Denis - The COVID Info Guy @thecovidinfoguy.bsky.social · 9d

Scientists Finally Reveal Biological Basis of Long COVID Brain Fog.

Patients with brain fog may have disrupted AMPA receptor (AMPAR) expression—key molecules for memory and learning. Imaging of Long COVID patients showed elevated AMPAR density tied to more severe cognitive impairment.

Scientists Finally Reveal Biological Basis of Long COVID Brain Fog

Researchers employed a specialized brain imaging technique to identify a potential biomarker and therapeutic target for Long COVID. More than four years after the onset of the COVID-19 pandemic, scien...

scitechdaily.com

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Reposted by Alexis M. 🎃

Julia Métraux @juliametraux.bsky.social · 9d

Ridiculously, Medicare Telehealth coverage keeps are getting tied to continuing resolutions. Bills could be passed separately. But political bureaucracy. This means Medicare Telehealth waivers are kaput as of today. My latest for @motherjones.com www.motherjones.com/politics/202...

Another shutdown casualty: Medicare telehealth coverage

It's got bipartisan support—and millions of Americans need it. But Congress keeps failing to lock in funding for Medicare telehealth services.

www.motherjones.com

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Reposted by Alexis M. 🎃

Tom Kindlon @tomkindlon.bsky.social · 9d

Exciting to see this 🔥

Specialised care for severely affected ME/CFS patients

Free:
www.tandfonline.com/doi/full/10....

Would be great to have such facilities in countries around the world. Approach is very different from the (inappropriate/dangerous) rehab/BPS approach

#MEcfs #SevereME #PwME

ABSTRACTIntroduction: A specialised care unit for severely and very severelyill ME/CFS patients opened in 2021. The results from the first 3 yearsare reported.Methods: People with ME/CFS who were diagnosed according tothe Canadian Consensus Criteria, who are aged 18 or above withsevere or very severe ME/CFS according to the UK NICEguidelines, are eligible to stay at Røysumtunet. The study designis a retrospective review of medical records.Results: Between June 2021 and June 2024, 24 ME/CFS patients, 20women and 4 men with a confirmed diagnosis of ME, wereadmitted to the unit for stays of at least 3 months. Seventeenwere very severely affected and 7 were severely affected. Agesranged from 18 to 68 years, with mean (SD) 37.5 (12.8) years.Seven patients showed significant improvement (p < 0.01), andfive others showed some improvement. In total 50% improved (p< 0.01). Patients who improved were borderline significantlyyounger than those who did not, with a mean age of 30.3 (SD12.6) years compared to 39.8 (SD 11.8) years (p = 0.06). The meanduration of disease was 2.3 (1.3) years for those who improvedversus 6.7 (3.9) years for those who did not improve (p < 0.05).Conclusion: This is the first report of a specialised care unit for themost severely ill ME/CFS patients. Fifty per cent of patients showedsignificant or partial improvement. The mechanisms behind theseimprovements are discussed but require further exploration infuture studies.

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Alexis M. 🎃 @turnoftheshrew.bsky.social · 9d

Thank you 😊

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Reposted by Alexis M. 🎃

It's ME(Jaime) @exceedhergrasp1.bsky.social · 9d

Hey, #MedSky & #SciSky! New text from Elsevier out today, "The Scientific Basis of Fatigue", with multiple chapters on different diseases, including #MECFS, COVID, Parkinson's, stroke and MS.

Proud to be the co-author of the #MECFS chapter with authors from Mayo and Bateman-Horne! More info:🧪

#MEAction Network @meactnet.bsky.social · 9d

Stellar new work from @grachstephanie.bsky.social, @exceedhergrasp1.bsky.social, @batemanhornecenter.bsky.social's Bell and Yellman & @raviganeshmd.bsky.social in the Elsevier text 'The Scientific Basis of Fatigue'! The book has chapters on #MECFS, COVID, Parkinson’s, stroke, and multiple sclerosis.

Text-based graphic with one photo. Text: New publication. Managing myalgic encephalomyelitis/chronic fatigue syndrome: a new narrative. a chapter in a new Elsevier textbook written by coauthors from #MEAction, Mayo Clinic Rochester and the Bateman-Horne Center. “I was honored to co-author this chapter with colleagues from Mayo Clinic and the Bateman-Horne Center to give clinicians and researchers the tools they need to better recognize, study and treat ME/CFS.”
Jaime Seltzer,
Scientific Director, #MEAction
Photo: Jaime Seltzer (white woman with long, dark hair) wearing glasses and cream blazer and red top slightly smiling.

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Reposted by Alexis M. 🎃

#MEAction Network @meactnet.bsky.social · 11d

#MEAction is asking you to take action to save telehealth NOW!

You can call or email your member of Congress. To make this action easier, we have drafted up a sample script you can use: www.meactions.org/telehealth

#Telehealth #PwME #LongCovid #MECFS #Congress #Disability

Image of a megaphone at bottom corner and Capitol building in top right corner. Text: Contact congress today to keep telehealth!

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Alexis M. 🎃 @turnoftheshrew.bsky.social · 11d

Ilene Ruhoy, David Kaufman, & Tania Dempsey MDs are having a round table discussion on microdosing GLP1/GIPs for #LongCovid #MECFS on Fri Oct 17, 2 pm EST; signup linked for anyone curious or interested

www.renegade-research.org/events-list

Events | Renegade Research

Upcoming Clinician's and Research Roundtables featuring doctors and other practitioners, scientists, deeply familiar with ME/CFS, Long Covid, and/or overlapping conditions including MCAS, EDS/HSD, POT...

www.renegade-research.org

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Reposted by Alexis M. 🎃

#MEAction Network @meactnet.bsky.social · 14d

Take action to save telehealth now! You can call or email your member of Congress.

To make this action easier, we have drafted up a sample script/email wording you can use: www.meactions.org/telehealth

#Telehealth #PwME #MECFS #LongCovid #disability

Graphic with megaphone and speech bubble in bright colors. Text: Take action today: support keeping telehealth!

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