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Reposted by C.H. Romatowski

The Sick Times @thesicktimes.org · 43m

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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C.H. Romatowski @chromatowski.bsky.social · 56m

Just to be specific, it’s hypermobility that can emerge after infection. Whether that’s EDS or not is still a subject of debate.

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Reposted by C.H. Romatowski

vee.soy @vashetc.bsky.social · 1h

I would LOVE to chat with anyone who has read decarcerating disability, I am trying to wrestle with stuffs in it, it’s my first time reading it

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Reposted by C.H. Romatowski

Greg Pak @gregpak.net · 21h

before the rush

selfie of greg pak in a mask riding the escalator at the 34th st hudson yards subway stop (the one near the javits center) a couple of days before the nycc. very few people on the escalator.

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C.H. Romatowski @chromatowski.bsky.social · 13h

Often the process is trial and error but many of us do find at least some relief. And people affected are often glad to share info on what we’ve tried and how it’s gone.

Glad to see someone tagged in Jaime Seltzer, who is a font of wisdom, and I’m also very happy to share more if could be helpful.

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C.H. Romatowski @chromatowski.bsky.social · 13h

By baclofen, a muscle relaxer also used as migraine med and treatment for ME/CFS, a neuro disease Covid can trigger.

For both conditions, treatment varies person to person so that specific med isn’t necessarily the answer; more to say, specialists in those fields may have options worth exploring.

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C.H. Romatowski @chromatowski.bsky.social · 13h

This happened to me too; I was a doctoral candidate and had to drape my bookshelves because even accidentally reading the titles on spines, exactly as you say, cooked my brain alive. Scariest year of my life.

I still deal w/impairment but I was pulled out of the worst of it—

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Reposted by C.H. Romatowski

Dr. Jen Irwin @drjenirwin.bsky.social · 17h

“COVID-19 infection associated with increased risk of new-onset vascular dementia in adults ≥50 years”

www.nature.com/articles/s44...

COVID-19 infection associated with increased risk of new-onset vascular dementia in adults ≥50 years - npj Dementia

npj Dementia - COVID-19 infection associated with increased risk of new-onset vascular dementia in adults ≥50 years

www.nature.com

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Reposted by C.H. Romatowski

Gail Drakes @gaildrakes.bsky.social · 2d

I just learned that the number of children in the U.S. navigating life with Long COVID exceeds that of the number of kids with asthma.

Wow.

Long COVID is here to stay—even in children

Post-acute sequelae of SARS-CoV-2 infection (PASC, also known as long COVID) are complex, multisystem, long-lasting complications of SARS-CoV-2 infection that profoundly impact the daily life of those...

www.thelancet.com

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C.H. Romatowski @chromatowski.bsky.social · 16h

RFK should not be HHS Secretary.

Joshua Weitz @joshuasweitz.bsky.social · 1d

More are united around a simple message: RFK Jr should not be HHS Sec. His decisions undermine our public health capacity and put lives and health at risk.

As 6 former Surgeon Generals argue:

"He has rejected science, misled the public and compromised the health of Americans."

🎁
wapo.st/3VTALll

Opinion | Six surgeons general: RFK Jr. is a threat to the health of Americans

It was our duty in office to warn of dangers when we found them. We’re doing that again today.

wapo.st

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Reposted by C.H. Romatowski

Elizabeth Lanphier @ethicselizabeth.bsky.social · 20h

"We are missing a really crucial window to vaccinate kids. We have been giving flu vaccines for a couple of weeks...It’s a huge lost opportunity. I don’t know if we’ll get those families to come back" said a pediatrician quoted in this piece on Covid-19 vaccines.

HELLody SchreiBOO @melodyschreiber.com · 1d

The CDC now officially recommends the updated Covid vaccines. Yet the delays, and the announcement itself, compound misinformation and persistent access issues. My latest:
theguardian.com/us-news/2025...

CDC backs updated Covid vaccines as access issues persist: ‘We still don’t have doses in hand’

Delays in recommending the shots and misinformation have created obstacles for vaccine access

theguardian.com

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Reposted by C.H. Romatowski

betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 21h

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 · 1d

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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C.H. Romatowski @chromatowski.bsky.social · 22h

I really can’t stress enough that by the time this happens to you—which is how I got diagnosed with EDS—you will wish you’d found out much, much sooner.

Rachel Graves @rachelgraves.bsky.social · 22h

“It shouldn’t take needing to have your head reattached to your body for a doctor to realize you have EDS," said me.

Miles W. Griffis @mileswgriffis.bsky.social · 23h

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...

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Reposted by C.H. Romatowski

Rachel Graves @rachelgraves.bsky.social · 22h

“It shouldn’t take needing to have your head reattached to your body for a doctor to realize you have EDS," said me.

Miles W. Griffis @mileswgriffis.bsky.social · 23h

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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C.H. Romatowski @chromatowski.bsky.social · 22h

I’m excited for this, I hope other #NEISvoid folks think of joining too!

ali alkhatib @ali-alkhatib.com · 1d

hello, my reading group for Workshops4Gaza is starting a new book: "Health Communism" by @avierkant.bsky.social and @reallandsend.bsky.social

please buy the book ASAP (or get it *some other way*, and try to support Palestinians however you can)

Reading Group (Thought Soup) - Health Communism

Hi everyone, welcome to a new book. For the next few weeks, we're going to be reading Health Communism by Beatrice Adler-Bolton and Artie Vierkant. Support...

buttondown.com

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Reposted by C.H. Romatowski

Julia Métraux @juliametraux.bsky.social · 23h

For National Disability Employment Awareness Month at @motherjones.com, I spoke to four disabled federal workers who were laid off about how their old jobs were very accessible—and what the federal government loses out on by having fewer disabled employees. www.motherjones.com/politics/202...

The human costs of Trump's war on government

For many disabled workers, federal jobs were decent, human, and accommodating: everything the president hates.

www.motherjones.com

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C.H. Romatowski @chromatowski.bsky.social · 23h

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 · 23h

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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C.H. Romatowski @chromatowski.bsky.social · 1d

That’s incredible, I’m so happy to hear it!

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Reposted by C.H. Romatowski

Tom Kindlon @tomkindlon.bsky.social · 1d

Please support Dr David Tuller's important work: he has the necessary skills, knowledge & networks to be able to challenge those who promote dubious psychobabble theories & that conditions can be overcome with enough effort/discipline

crowdfund.berkeley.edu/project/47768

#MEcfs #LongCovid #PwME

Trial By Error: Reporting on ME, ME/CFS, Long COVID, & so on...

Ten years ago this month, I launched Trial By Error with a 15,000-word investigation of the fraudulent PACE trial, which tested cognitive behavior therapy and graded exercise therapy as curative treatments for what was then being chronic fatigue syndrome. What I thought was a one-off somehow morphed into an extended academic project on psycho-behavioral research across a broad range of conditions, including what is known as Long COVID.

Amazingly, the pandemic and its consequences have rendered much of my earlier work relevant in a way I could never have anticipated. I had planned to end the project a couple of years ago, but decided to continue as I saw the same investigators I'd already criticized for their flawed research pursuing the exact same strategies in taking on Long COVID.

This current crowdfunding will cover my work on Trial By Error and my position at Berkeley from January-June, 2026. Assuming it goes well, there will be one more crowdfunding campaign next spring to cover July-December, 2026. I plan to retire from Berkeley at the end of 2026. (I will be 70 on October 10, 2026.)

I have been busy since last spring’s crowdfunding!!!

*I’ve written dozens of posts on Virology Blog, many explaining why awful papers about psycho-behavioral interventions for ME/CFS and Long Covid are, in fact, awful.

*I've covered news events and developments not only in the UK and US but also in multiple European countries as well as Australia, New Zealand, and Canada.

*I've posted video interviews with Yale immunologist Akiko Iwasaki about the latest in Long COVID research, University of Edinburgh geneticist Chris Ponting about the DecodeME findings; Columbia University's Ian Lipkin about immune-related abnormalities in ME/CFS; the UK ME Association's Charles Shepherd about the UK government's pathetic plan for ME/CFS; and others.

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C.H. Romatowski @chromatowski.bsky.social · 1d

I helped road test this and am so excited for it!

Join the waitlist to be alerted when enrollment starts: longcovid.scripps.edu

Julia MV @julialmv.bsky.social · 1d

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 C.H. Romatowski

Stephanie Grach M.D. M.S. @grachstephanie.bsky.social · 1d

Truly honored to have lead the inaugural chapter on #MECFS management in the @elsevierconnect.bsky.social textbook Scientific Basis of Fatigue, "Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A New Narrative." The greatest honor of all was co-authoring with my role models--

Dr. Stephanie Grach, a Caucasian woman with brown eyes and (currently) shoulder-length brown hair, holding a textbook open to the mentioned chapter's first page. Wearing a blue suit jacket, red/blue shirt, and blue KN95 mask, against a purple-gray background.

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Reposted by C.H. Romatowski

Femke Nijsse @femkenijsse.bsky.social · 1d

Anyone know how to get metformin for long COVID prevention in the UK? Got infected again.

GP not familiar enough with research to be willing to prescribe.

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Reposted by C.H. Romatowski

David Kaufman @kaufmanmd.bsky.social · 1d

Just as millions and millions become disabled with Long Covid, Trumps solution is this:

www.washingtonpost.com/politics/202...

Trump plan would limit disability benefits for older Americans

Trump administration officials are considering eliminating age as a factor in deciding whether someone is capable of working.

www.washingtonpost.com

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C.H. Romatowski @chromatowski.bsky.social · 1d

Agree on all counts

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C.H. Romatowski @chromatowski.bsky.social · 1d

😭😭 I’m so sorry, can only imagine how much harder that makes this, and it is already PLENTY hard on its own

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