Excellent summary www.docdroid.com/GSDDVHM/long...

It’s almost Christmas Eve across the pond... @baldypidge.bsky.social Colin, Merry Christmas to you and your entire family! ❤️ 🎄🌟 XO, Ann

"Our data show that chronic inflammation, T cell exhaustion, metabolic dysregulation and upregulation of the JAK-STAT and interleukin-6 (IL-6) signaling pathways are key features of LC." www.nature.com/articles/s41...

(1/5) Long Covid: Latest Evidence-based Pathophysiology Clues Infographic 🧩 On this day, exactly 5 years ago I tested positive for a Covid infection that triggered the onset of my Long Covid and its devastating symptoms, which still debilitate me to this day.

Swirling wind blown snow Has a dizzying effect Chaos all around

You @baldypidge.bsky.social & Rosie were featured today by Sammie @longcovidkids.bsky.social during #ICanCME ❤️ You are all such good advocates!

Rosie's piece Prisoner of my Heartrate (a digital rendering of her actual ribcage and ❤️) made it to the @ukcovid-19inquiry.bsky.social today in support of Sammie and @longcovidkids.bsky.social .

Monochromatic Midday meandering moth Mystic messenger

the world is upside down, the appropriate response to deafening silence in the wake of mass-disabling of our children is to scream at the top of your lungs. That's what Violet was doing on Tuesday. That's not anxiety, that's humanity. /end

NEW: At a UN event today, advocate Violet Affleck gave a short speech on pediatric #LongCOVID. She also talked about how clean air and masking could help address the ongoing COVID-19 pandemic and protect children from the disabling disease. thesicktimes.org/2025/09/23/v...

I feel like I know Rosie even though an ocean separates us. She is an amazing young woman who acquired Long COVID as a teen. She & her father @baldypidge.bsky.social have been public about her journey.

Rosie challenged visitors to contribute to Rona Lisa 2 by thinking of kind things they could say to people with #longcovid #mecfs. They were invited tonwrit on post its and add them to the piece.

If anyone else would like to add a virtual message to Rosie's piece Rona Lisa 2, please do so. She is looking for kind or supportive things that an adult or friend can say to someone with an #invisibleillness like #longcovid or #mecfs

"After an episode of PEM, patients may return to their prior cognitive baseline...or decline to a new, lower baseline, suggesting cumulative neurological injury. Conversely, strict avoidance of PEM— ...may allow partial neurological recovery."

It is only when we give up hope, that we lose. Or to quote Victor Frankl: “For the world is in a bad state, but everything will become still worse unless each of us does his best.”

Really proud of my team for getting this out. It has been a heavy lift. When we opened the Cohen Center for Recovery from Complex Chronic Illness, we wanted to create a place that could provide the very best of care for people with #LongCOVID, #MECFS, www.beckershospitalreview.com/quality/pati... 1/

When I posted this, I thought of you, @baldypidge.bsky.social because your poems inspire me!

Southern exposure Unexpected sunset sight Solar reflection

"We hypothesized that fatigue experienced by ME/CFS and LC patients may be connected with the increased energy consumption by the immune system due to lingering pathologies, even after the recovery from a specific infection."

"Disability is the only minority group you can join at a moment’s notice with no warning or predisposition."

@bhanlon15.bsky.social When I read your post last night I thought of Rosie's art. Rosie was featured in vimeo.com/1017483971

mecfs-research.org/wp-content/u... @amsterdamumc.bsky.social What wonderful work by Anouk Slaghekke and her team!

"Our patients need protection."

This is an amazing resource. I am so grateful for the effort and thoroughness that is evident in the creation and distribution of this comprehensive guidance. ❤️

“Postural reductions in stroke volume [heart] and cerebrovascular pulsatility, a marker of brain perfusion, were significant determinants of postural ventilation and sympathetic activity.” www.jacc.org/doi/10.1016/... #POTS #LongCovid #ME/CFS

Meliora is the motto of my alma mater. @urochester.bsky.social‬ #EverBetter www.rochester.edu/emerging-lea...

“When haters go after your looks and differences, it means they have nowhere left to go. And then you know you’re winning! I have Aspergers and that means I’m sometimes a bit different from the norm. And — given the right circumstances — being different is a superpower.” — Greta Thunberg #autism

Activism works. Case in point: #LongCovid @nature.com www.nature.com/articles/d41...

From an operational security perspective, this is the highest level of fuckup imaginable. These people cannot keep America safe.

I am grateful to be participating in your study!

“When I first got sick, I was like, OK, I just have to survive 3 to 5 years and I think there will be, at least, decent symptom management trial data so that we have options. But we’ve made almost no progress...it’s nowhere near the volume it should be given the burden of disease.” 2/3

I was explaining ME/CFS to a provider who had never seen a patient with it. He asked about who diagnosed me & the diagnostic criteria. I started listing the IOM criteria & knew I was forgetting one... Realized on the way home the criteria I couldn't remember was cognitive dysfunction 🙃

“We can do better—and we have to do better, for each other.”

The Federal Advisory Committee on Long COVID has been ordered terminated on 2/19/25 within 14 days. “the Secretary of Health and Human Services shall terminate the Secretary’s Advisory Committee on Long COVID.” www.whitehouse.gov/presidential... #LongCOVI

"That our Long COVID patients also exhibited significantly lower gas exchange thresholds and respiratory compensation points, which are effort-independent, indicates a reduction in aerobic function that is not effort-independent."

“We are witnessing one of the worst and most costly foreign policy blunders in U.S. history.” www.nytimes.com/2025/02/06/o...

Hi @ravenscimaven.bsky.social Can you comment on this thread?

Hi @putrinolab.bsky.social A while ago I read about differentiating between Long Covid terminology: fatigue, exercise intolerance, & post exertional malaise. I was confused. But, here is what I think I understand now. Please let me know if my understanding is correct.