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ProdigalHoosier

@prodigalhoosier.medsky.social

3.8K followers 7K following 6.3K posts

Co-conspirator/Partner to @Bellmore Mom of 2 badasses Punk Rock Grrrl IU Alum CASA Volunteer History, Politics, Policy Buff Healthcare, Justice, & Education Equity Trauma Informed Care Book Lover Spreadsheet 💖 Praying Mantid Mom Future Corvid Murder Bestie

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ProdigalHoosier @prodigalhoosier.medsky.social · Jan 24

Gonna say something that probably feels harsh.

Black and Minoritized communities have NEVER been able to “opt out” of being the target of these kinds of atrocities.

If you’re at DAY FOUR of this administration & wanting to tune out already you should reflect on the level of privilege you’ve had.

Mrs. PA-C @mrspac.medsky.social · Jan 24

I don’t wanna get off this app but yall I can’t handle seeing a timeline of only political shit

I did my portion of the group project and we still Failed. I don’t want to see the fall out 24/7. It’s too depressing

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ProdigalHoosier @prodigalhoosier.medsky.social · 3h

@skullsneuro.bsky.social any idea what direction I should go to find out if CPS services are historically better funded after media events?

Grand Rapids Michigan News @grandrapidsnews.mastodon.social.ap.brid.gy · 1d

Court docs: Mom threatened daughters' lives months before deadly fire. A Grand Rapids mom accused of setting fire to her home while her three daughters were inside, leading to the death of one of them, had a lengthy history with Children's Protective Services and allegedly made a threat to her […]

Original post on mastodon.social

mastodon.social

ProdigalHoosier @prodigalhoosier.medsky.social · 4h

My brain seems finally able to efficiently process shit for the first time all day so now I’m wide awake. 🤦‍♀️

ProdigalHoosier @prodigalhoosier.medsky.social · 4h

This feels like something @floregonian.com would post. 🥰

ProdigalHoosier @prodigalhoosier.medsky.social · 4h

I say functional, but it’s definitely more semi-functional since I can barely manage to feed myself if left unsupervised most days.

(I’m just too tired to think about food. It’s a weird level of tired. If you don’t understand I’m hella jealous.)

ProdigalHoosier @prodigalhoosier.medsky.social · 4h

This may be a 1/4 the scripts/supplements I take to be able to focus on anything for more than 5 minutes and not spend the entire day wrapped up in eleven blankets like a mummy b/c every muscle hurts & I’m exhausted for no damn reason.

The list of crap I take to get 6-8 functional hours/day is 🍌 🍌.

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ProdigalHoosier @prodigalhoosier.medsky.social · 4h

I have an entire crate of Kodak APS canisters…. Getting those all converted to disc is going to suuuuck.

ProdigalHoosier @prodigalhoosier.medsky.social · 4h

I’m the family archivist and I am SO BEHIND… but also what storage medium is going to be the next stupid new thing? We have pocket sized unlimited music, art, journalism and photos…. WTF more improvement do we really need? Like…stop forcing us to buy the same or shit on a million different formats!

ProdigalHoosier @prodigalhoosier.medsky.social · 4h

What was the last thing you celebrated?

ProdigalHoosier @prodigalhoosier.medsky.social · 4h

You wake up tomorrow and it’s magically 10% better than today: How?

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ProdigalHoosier @prodigalhoosier.medsky.social · 5h

My edible made me feel like I had robot polar bear feet and it was way too scary. No thank you.

ProdigalHoosier @prodigalhoosier.medsky.social · 5h

a man with his hands on his face and the words asking for a friend below him

Alt: a man with his hands on his face and the words asking for a friend below him

media.tenor.com

ProdigalHoosier @prodigalhoosier.medsky.social · 5h

Is there a distinction in the #PsychSky space between existential depression (that sense that your life no longer has value or purpose) and depression because 40% of the your country is made up of narcissistic, genocidal, racist, pedophile, supporters who DGAF about anyone but themselves.

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ProdigalHoosier @prodigalhoosier.medsky.social · 6h

Something is seriously wrong with a whole bunch of us and everyone is ignoring the fact we just went through a pandemic that caused a whole mass of people to become newly disabled in weird, unexpected and frustrating ways.

ProdigalHoosier @prodigalhoosier.medsky.social · 6h

There are more of me? 🤦‍♀️
🙈🙉🙊
H/t to @batemanhornecenter.bsky.social for validating that I have literally been TRYING to fix whatever dumb shit has been causing my body to fail me every single day.

I CANNOT ARTICULATE THE EXHAUSTION. Please make it stop.

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bdoc Hytochlerde loblet, 180 ml
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CHAPTER 2: BASICS OF LONG COVID, ME/CFS, AND COMORBIDITIES
2.5 Assessment & Diagnosis
• The U.S. Clinician Coalition offers Tier 1, Tier 2, and Tier 3 diagnostic tests. For additional guidance and information, please visit: https://mecfscliniciancoalition.org/
• Symptom History & Functional Impact:
• Document PEM triggers and functional capacity over time.
• Use validated symptom logs or PEM questionnaireS.32,77
• Key Diagnostic Tests:
• Orthostatic testing: 10-Minute NASA Lean Test (passive stand), Active Stand Test1z, Tilt Table Test (TTT) 133
• Autonomic testing: QSART, Valsalva, TTT if available o Small fiber polyneuropathy testing: Skin Biopsy134
• Standard labs: CBC, CMP, thyroid function tests, vitamin B12 and folate, iron studies, ANA, ESR/CRP, rheumatoid factor, tissue transglutaminase (celiac testing), total immunoglobulins, vitamin D, AM cortisol and DHEA, phosphorus, magnesium, urinalysis, overnight sleep study
2.6 Management Strategy Overview
Please see the respective chapter for more details and guidance.
Area of Management
Key Interventions
Energy Management
Pacing, structured rest, preventing PEM crashes 19,182
Ol Management
IV saline, oral fluids, electrolyte supplements, compression clothing, pharmacological supports (see Ol section) 17,112,161

Neuroinflammation & Pain Low-dose naltrexone (LDN) pyridostigmine, dextromethorphan (DM) 107,185
Gl & Nutritional Support
Low-FODMAP diet, low-histamine diet, probiotics, motility agents, anti-inflammatory diets33,127
Mast Cell Activation
Syndrome
MCAS stabilizers antihistamines, mast cell-directed biologicSs5,117,118
Sleep
Sleep hygiene, sedative-hypnotics, dual orexin receptor antagonists, benzodiazepines, melatonin receptor agonists (e.g., Remeron), antidepressants (e.g., doxepin, trazodone, mirtazapine, tricyclic antidepressants), herbals and supplements (e.g., magnesium glycinate), and antihistamineS12
Cognitive Impairment
NAC and guanfacine omega 3 fish oil, phosphatidylserine, phosphatidylcholine, st…

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ProdigalHoosier @prodigalhoosier.medsky.social · 6h

Sending my PCP the @batemanhornecenter.bsky.social Clinical Care Guide for #LongCovid. 🤞

batemanhornecenter.org/wp-content/u...

batemanhornecenter.org

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Reposted by ProdigalHoosier

C.H. Romatowski @chromatowski.bsky.social · 14h

Invaluable piece, grateful to these patients for organizing.

The Sick Times @thesicktimes.org · 18h

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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Reposted by ProdigalHoosier

Bateman Horne Center @batemanhornecenter.bsky.social · 14d

#Rheumatology once expanded from joints to systemic autoimmune disease. Now, it must prepare for infection-associated chronic conditions like ME/CFS, #POTS & dysautonomia, or risk leaving millions in limbo. Read more on today's blog → https://bit.ly/4mByFl3

#MECFS #LongCOVID

Screen displaying a joint with a magnifying glass and a virus icon, titled "New Blog Post." Text above: "The next expansion: Why Rheumatology Must Prepare for Infection-Associated Chronic Conditions." BatemanHorneCenter.org/blog/

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Reposted by ProdigalHoosier

Tom Kindlon @tomkindlon.bsky.social · 12d

"Why Rheumatology Must Prepare for Infection-Associated Chronic Conditions (IACCs)"

batemanhornecenter.org/why-rheumato...

New @batemanhornecenter.bsky.social blog suggesting the rheumatology specialty should expand to include Infection-Associated Chronic Conditions (IACCs) such as #MECFS & #POTS

Why Rheumatology Must Prepare for Infection-Associated Chronic Conditions

When The Lancet Rheumatology published Dr. Brittany Adler’s essay, Expanding the Rheumatology Lens: Should We Embrace POTS and Post-Infectious Syndromes?, it captured a reality many in the field have…

batemanhornecenter.org

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Reposted by ProdigalHoosier

Solve M.E. @solveme.bsky.social · 1d

🎉It’s DAF Day 2025—a nationwide celebration of generosity through Donor-Advised Funds. Help make ME/CFS and Long Covid widely understood, diagnosable, and treatable. Join us and be part of the movement! 🧡
ow.ly/FNuU50X9pnb

#DAFDay2025 #MECFS #LongCovid #givingtogether

Bright orange background with text celebrating Donor-Advised Fund Day and encouraging gifts to support ME/CFS and Long Covid research by Solve M.E.

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Reposted by ProdigalHoosier

Solve M.E. @solveme.bsky.social · 1d

A UK-based research team has developed a new blood-based assay, the EpiSwitch CFS test, that may prove very effective for diagnosing people with #MECFS. Read our summary of the study (published in the Journal of Translational Medicine) here:
ow.ly/UnXo50X9vyw

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...

ow.ly

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Reposted by ProdigalHoosier

Julia MV @julialmv.bsky.social · 3d

We are excited to open enrollment for the Long COVID Treatment Trial (LoCITT) soon!

We designed the first trial to be accessible & inclusive as possible. People across the US can participate from bed!

To sign up for the waitlist and/or watch our webinar recording, visit: longcovid.scripps.edu

Overcoming trial design challenges

Table with parallel challenges & solutions:
Challenge: Heterogeneous presentation
Solution: Match eligibility criteria to intervention & Power trial to detect subgroup effects

Challenge: Don’t understand cause & effect
Solution: Conduct mechanistic trials that can help disentangle

Challenge: Lack of biomarker
Solution: Utilize sensitive survey outcomes & wearable data

Challenge: Many are housebound/bedbound
Solution: Bring trials to participants

First trial size and metrics
Randomized, double-blind placebo controlled trial in 1,000 participants

Table of outcome types and metrics:
Primary: Fatigue Severity Scale (FSS)
Secondary: FUNCAP27, DSQ-PEM, EQ-5D-5L
Exploratory: Wearable data (step count, heart rate, variability, resting heart rate, max heart rate), demographics, medication compliance
Biosample (50 participants): 3 clinical labs, proteomics

Ways LoCITT centers on participants

You can complete study activities from wherever you are
We work to minimize participant burden
Secondary outcomes were selected for validation for future trials
Our first user testers were 2 people with very severe symptoms
Thank you to Catherine Romatowski and a second anonymous tester!
Participants choose how they communicate with the study team
24/7 phone line for time-sensitive matters, video calls, emails, etc.
We share a letter to help coordinate with your health care provider(s)
We welcome caregivers to support you in completing study tasks

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Reposted by ProdigalHoosier

Rehabilitation Science Research Network for COVID @uoftcovidrehab.bsky.social · 2d

New Event: Join us for the Fireside Chat: Deep dive into activity, movement, PESE and PEM in the context of Long COVID and Infection-Associated Chronic Conditions. Visit our website for more information and to register! tinyurl.com/33hd3r2a
@drjillcameron.bsky.social @kellyobrien25.bsky.social

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ProdigalHoosier @prodigalhoosier.medsky.social · 8h

actionnetwork.org/forms/s4hi-s...

Join Strategies for High Impact

Strategies for High Impact (S4HI) is building the power of chronically-ill & disabled people, our groups and our networks. S4HI is a hub for a network of activists, organizers, strategists and commu...

actionnetwork.org

Reposted by ProdigalHoosier

Miles W. Griffis @mileswgriffis.bsky.social · 19h

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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ProdigalHoosier @prodigalhoosier.medsky.social · 9h

🤬

If anybody wants to know why Gen X is always mad, it's because we had to replace our record collections with a tape collection that we had to replace with a CD collection that we had to replace with an MP3 collection...

And now we need a subscription to listen to music

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