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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. 🎃

Kami Anya (they/them) 🏳️‍⚧️♿️✡️ @kamianya.bsky.social · 1d

A thing about chronic health issues:

It doesn’t matter how intelligent, educated, skilled, talented, etc, you are. When your body stops letting you do the things, there’s only so much you can do to fight it.

It doesn’t matter how sharp your brain is if fatigue won’t let you access it.

#NEISVoid

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

When you finish your book email [email protected] and I’m sure she can add you 🙂

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Alexis M. 🎃 @turnoftheshrew.bsky.social · 10h

If you are an #author of a book (about any topic) who has #MECFS #LongCovid #POTS #fibromyalgia #EDS or a related illness & would like your book to be included on Chronic Market’s new book webpage for people to purchase or know of, fill out your book’s details here:
docs.google.com/forms/d/e/1F...

docs.google.com

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Reposted by Alexis M. 🎃

50501: The People’s Movement ❌👑 @50501movement.bsky.social · 13h

Caturday meets No Kings day.

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Reposted by Alexis M. 🎃

Billy Hanlon @bhanlon15.bsky.social · 1d

The Sick Times: 'Nicotine patches help relieve symptoms in some people with Long COVID. Can the science behind it lead to future therapies?'

Written by Astra Lincoln

thesicktimes.org/2025/10/17/n...

Nicotine patches help relieve symptoms in some people with Long COVID. Can the science behind it lead to future therapies? - The Sick Times

Some people with Long COVID and the providers who were treating them wondered if nicotine, delivered by a mechanism other than cigarettes, might help with the chronic disease. For the next several yea...

thesicktimes.org

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

It’s all so ridiculous & unfair. “Do no harm” does not mean doing nothing at all! That is indeed harmful.

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Reposted by Alexis M. 🎃

Emily Johnson @emilyrj.bsky.social · 1d

If you missed today’s @renegaderesearch.bsky.social event, you can watch/listen to the recording here www.youtube.com/playlist?lis...

Clinician's Roundtables - YouTube

www.youtube.com

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

I have long said that in the #MECFS #LongCovid space one of the biggest barriers to care is the unwillingness & fear of MDs to prescribe off label meds, even ones that are well-known & generally safe. Hearing trusted, knowledgeable MDs on a panel agree w/ that is both validating & disheartening.

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Reposted by Alexis M. 🎃

Emily Johnson @emilyrj.bsky.social · 1d

Major thanks to Dr. Stuart Malcolm for bringing this paper to attention in the discussion about patient GLP-1 care experiences

“The effect of GLP-1RA exenatide on idiopathic intracranial hypertension: a randomized clinical trial”

pmc.ncbi.nlm.nih.gov/articles/PMC...

The effect of GLP-1RA exenatide on idiopathic intracranial hypertension: a randomized clinical trial

Therapeutics to reduce intracranial pressure are an unmet need. Preclinical data have demonstrated a novel strategy to lower intracranial pressure using glucagon-like peptide-1 (GLP-1) receptor signal...

pmc.ncbi.nlm.nih.gov

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

This was the most useful thing I’ve seen in a long time. Thanks so much to all involved. I took notes!

Reposted by Alexis M. 🎃

It's ME(Jaime) @exceedhergrasp1.bsky.social · 1d

Genuinely never realized why the pity response to disability is so uncomfortable, even frustrating, until I realized: it's because "ohhh how sad!" is about the listener.

"By telling me that, you've made ME sad."

It centers the listener, and even sounds accusative: you've burdened them. By existing

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Reposted by Alexis M. 🎃

Renegade Research @renegaderesearch.bsky.social · 1d

Micro-dosing GLP-1/GIP RA Tx in ME/CFS & Long Covid with
@kaufmanmd.bsky.social @ruhoy.bsky.social &
Tania Dempsey, MD.

2 pm ET USA, Friday, Oct 17, 2025

A Clinician's Roundtable by @renegaderesearch.bsky.social

Recording posted to YouTube soon.

us06web.zoom.us/webinar/regi...
#MedSky

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Alexis M. 🎃 @turnoftheshrew.bsky.social · 2d

In 2025 if an article title begins with the phrase “ #LongCovid is real,” no matter how good it might be, no matter how prestigious the publication, I’m not reading it.

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Reposted by Alexis M. 🎃

Kristin Houlihan, Writer @kristinwrites.bsky.social · 2d

of suffering and limitations. We always want more, even as gains are made. We are always aware of what we’ve lost. And we generally feel like hot garbage. Yes, even on good days. Degrees of hot garbage.

- Finally, there is NO WAY this is harder on you than it is on us. Not a chance. Don’t go there

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Reposted by Alexis M. 🎃

Kristin Houlihan, Writer @kristinwrites.bsky.social · 2d

I can continue to live.

- we are unpredictable. Sometimes we WILL remember, or reach out, or show up. That doesn’t mean we’re cured and the rest of the time we’re choosing not to… we do what we can, when we can, and it often doesn’t make any rational sense

- this existence is measured in degrees

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Reposted by Alexis M. 🎃

Kristin Houlihan, Writer @kristinwrites.bsky.social · 2d

deeply about my daughter’s sports, but I do not — can not — SHOW that by showing up

- we will forget things. Conversations, promises, special occasions- I swear, they disappear. Like they never happened.

- we will APPEAR selfish but it is self preservation. My world revolves around me so that

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Reposted by Alexis M. 🎃

Kristin Houlihan, Writer @kristinwrites.bsky.social · 2d

Brutal truth: having a relationship with a person with ME requires a paradigm shift.

- we will not meet you halfway, bc we can’t. I give what I can, when I can, and the other party must close the gap. It’s unfair and obnoxious.

- we will often not back up our words with actions. Ex: I care

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Alexis M. 🎃 @turnoftheshrew.bsky.social · 2d

Standing up clapping and cheering to every word of this in agreement

Reposted by Alexis M. 🎃

Hanna Jo @hannajow.bsky.social · 3d

New paper on #physicaltherapy education for people w/ #MECFS.

#chronicillness
#disability
#MEDsky
#rehab
#knowPEM

nsuworks.nova.edu/ijahsp/vol24...

Clinical Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome as a Curriculum Thread to Meet Accreditation Standards in Physical Therapy Education

Purpose: ME/CFS is a debilitating, complex, chronic illness that is estimated to affect up to nine million Americans. It requires a paradigm shift in treatment approach to one of energy conservation d...

nsuworks.nova.edu

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Reposted by Alexis M. 🎃

The Sick Times @thesicktimes.org · 8d

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 · 9d

So relatable haha

Reposted by Alexis M. 🎃

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

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 · 10d

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 · 9d

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

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

Fair point!

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

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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