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Billy Hanlon @bhanlon15.bsky.social · 23h

The Courier: 'Fifers left with ‘nowhere to turn’ in ME care crisis'

'Paula Notman, 63, is among those left angry and frustrated after the last ME specialist in Scotland passed away two years ago and has still not been replaced.'

www.thecourier.co.uk/fp/lifestyle...

Fifers left with 'nowhere to turn' in ME care crisis

Paula Notman, 63, is among those left angry and frustrated after the last ME specialist in Scotland passed away two years ago and has still not been replaced.

www.thecourier.co.uk

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Billy Hanlon @bhanlon15.bsky.social · 23h

Institute for Neuro-Immune Medicine: "Orthostatic Intolerance: Clinic Assessment and Treatment"

'Dr. Lucinda Bateman, Founder and Medical Director of the Bateman Horne Center of Excellence, shares her expert presentation...'

www.youtube.com/watch?v=Wtxf...

Orthostatic Intolerance: Clinic Assessment and Treatment

YouTube video by Institute for Neuro-Immune Medicine

www.youtube.com

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Billy Hanlon @bhanlon15.bsky.social · 1d

Montreal Gazette: 'Quebec's latest COVID campaign is underway, but vaccines aren't free for all'

“We don’t know everything yet about why severe disease happens, why complications like blood clots and strokes happen, or why long COVID happens' - Dr. Donald Vinh

montrealgazette.com/news/quebec/...

Quebec's latest COVID campaign is underway, but vaccines aren't free for all

Only certain groups will be eligible to receive a free COVID shot. Other will have to pay $150 to $180.

montrealgazette.com

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Billy Hanlon @bhanlon15.bsky.social · 1d

CIDRAP: 'Nearly 1 in 3 adults with severe long COVID have rare heart-rhythm disorder, data suggest'

'Karolinska Institutet investigators prospectively evaluated the prevalence and clinical effects of POTS in 467 nonhospitalized patients...'

www.cidrap.umn.edu/covid-19/nea...

Nearly 1 in 3 adults with severe long COVID have rare heart-rhythm disorder, data suggest

www.cidrap.umn.edu

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Reposted by Billy Hanlon

Long Covid Collective @longcovidcollect.bsky.social · 7d

6 years in, Long COVID still lacks awareness.

📌 1 in 5 U.S. adults have had it—higher than diabetes.
📌 Millions disabled, few recoveries.
📌 No approved treatments.
📌 Only sure prevention: don’t get COVID.

Not rare. Not gone. Still growing.

Seven Things to Know About Long COVID - WHN

This post is part of a new blog series focusing on long COVID. See part 2. After nearly six years of living with the SARS-CoV-2 virus, everyone knows about COVID-19. However, public awareness of long ...

whn.global

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Reposted by Billy Hanlon

Long Covid Collective @longcovidcollect.bsky.social · 7d

“My brain feels like a soggy sponge.”

“My legs are molasses, my arms are lead.”

“Every sound too loud, every light too bright.”

This is what chronic illness feels like. Not fatigue on a bad day, but a body that won’t cooperate.

#me/cfs #longcovid #fibromyalgia

In Their Own Words: Chronic Fatigue Syndrome and Fibromyalgia Patients Describe Their Symptoms

I would not wish this illness on my worst enemy (if I had one), but sometimes I wish the naysayers could live in our bodies for a few days.. The symptoms are taken from a thread on the Health Rising ...

www.healthrising.org

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zencoffeebreak @zencoffeebreak.bsky.social · 7d

ur 30s are for getting the hang of adulting, becoming a financially stable, getting long covid and having it all ripped away & moving back in with your parents

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Long Covid Collective @longcovidcollect.bsky.social · 5d

New study: older adults with COVID had a higher risk of vascular dementia — but when compared to other serious respiratory illnesses, the extra risk disappeared. Association, not proof, and follow-up was short. Still, it’s a signal worth watching. #longcovid

COVID-19 infection associated with increased risk of new-onset vascular dementia in older adults

Prior COVID-19 infection was associated with a 41% increased risk of all-cause dementia.

www.cidrap.umn.edu

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Billy Hanlon @bhanlon15.bsky.social · 1d

🤞 🤞 🤞

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vee.soy @vashetc.bsky.social · 2d

i am almost done with this grant proposal

i am so tired but hopeful

i hope we get it

Black with Long COVID Symposium and Forum Proposal
In 2019 the lives of every human were changed by the introduction of SARS-CoV-2, a novel Coronavirus that has since led to the death of over 7 million people across the world, and counting. The pandemic has had a long-lasting impact on the most marginalized communities, exacerbating systemic inequities that existed prior to the pandemic including that which has led to centuries of mass premature death, debility, and disability. Yet those most impacted, particularly Black Americans and the larger Black Diaspora across the globe, continue to be excluded from conversations about the virus and its sequela. This exclusion has contributed to the current state of COVID and Long COVID today -- we are five years in without any approved treatments.

Grounded in Sins Invalid’s Disability Justice framework, Social Determinants of Health frameworks, and Simone Browne’s Dark Sousveillance, is twofold: 1) To uplift transnational Black and Afro-descendant expert knowledge about Long COVID in efforts to support rapid progress towards treatment, and decrease systemic inequities and 2) To provide accessible patient-led spaces to foster community building and collective consciousness raising for Black people with Long COVID.
As Browne writes in Dark Matters, Dark Sousveillance is place in which to mobilize a critique of racializing surveillance, in the form of freedom practices. Collective consciousness raising

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Clinically Vulnerable Families 💙💜💗 @cvcev.bsky.social · 8d

Seren is a young person who lives in a really vulnerable household.

Everyone should listen to her story.

💙💜💗 #educationANDlives

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Jessica Ellis @baddestmamajama.bsky.social · 2d

Long Covid is the most common chronic illness among children now. Congratulations?

Benjamin Balthaser @blbalthaser.bsky.social · 2d

The Great Barrington Dec. aka the “let covid rip” policy, legitimated the death of over a million Americans, is disabling of tens of millions more, & failed to achieve its own instrumental goal, ending the pandemic. It did succeed hwvr in gutting public health & eroding public trust in science

Five years ago today, we authored the Great Barrington Declaration, arguing for focused protection instead of lockdowns. A wholehearted thank you to the almost one million co-signers. We were proven right.

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Richard Vallée @richardvallee.bsky.social · 10d

All the same things have been written about Long Covid in the last 5 years. A giant record of failure, thousands of articles, reports and studies spanning decades exposing the ruin of millions of lives.

A giant record of criminal negligence. All in broad daylight.

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Richard Vallée @richardvallee.bsky.social · 10d

You can go back 24 years, or 50, or 70, or a 100, and things are still just as bad.

Even Long Covid didn't change anything, the medical profession is still locked firmly in its refusal to do anything, prefers to see millions of lives wasted than admit they got anything wrong.

Royal Free 1955 @rfh1955.bsky.social · 10d

From The Guardian (UK) on this day twenty-four years ago - 27th September 2001. Charles Shepherd is featured and given the newspaper and the era, Simon Wessely makes his inevitable appearance.

#myalgicencephalomyelitis #fibromyalgia #gws #gulfwarsyndrome #cfsme #mecfs #myalgice

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Reposted by Billy Hanlon

Richard Vallée @richardvallee.bsky.social · 7d

Thousands of people warned medical and public health institutions of this in early 2020.

So many begged them to research this from the start and warned that it could be a huge problem if the pandemic was not controlled, which it wasn't.

They all declined. Every last one of them refused.

Cara Martin (C. K. Kelly Martin) @caramartin.ca · 7d

Study "findings reinforce an urgent message that children and adolescents can develop long COVID not only after an initial infection, but also after reinfection. The public health implications are substantial." www.thelancet.com/journals/lan...

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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Reposted by Billy Hanlon

Richard Vallée @richardvallee.bsky.social · 6d

When some governments want to pretend that they did something about Long Covid, know that that 'something' was often listening to and gifting overt deniers with funding so they could corruptly produce garbage-tier research covering it up.

Experts failed us. Governments failed us. Total failure.

Lucibee @lucibee.bsky.social · 6d

At the end of Sammie McFarland's evidence session, we are shown this extract from a government meeting of 9 June 2020.

Dr Shamez Ladhani from PHE advises against using the label "long covid" on children.

#UKCovidInquiry

Extract reads:
"Cases in children do not give us an indication of the general population. The pandemic has taken a huge toll on children and families, irrespective of whether they have had the virus or if it is due to lockdowns or school closures. Dr Ladhani was clear that children should not be labelled with long COVID (i.e., a medical condition) as this has potential to cause longer-term, psychological harm."

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Martin Grimshaw Has Long Covid @thrivingplanet.bsky.social · 1d

"The evidence has been building for years and has been consistent; COVID causes brain damage.

Despite the clear evidence, we’ve continued to infect the population, not once, but repeatedly, with no plan to end the onslaught of reinfections."

#LongCovid

Julia Doubleday @juliadoubleday.bsky.social · 2d

Nobody has Long COVID, but everybody has brain fog, cognitive decline and memory loss. I talk about the overwhelming scientific evidence that COVID damages the brain, and the overwhelming social unwillingness to acknowledge it in my latest:

www.thegauntlet.news/p/when-will-...

When Will the Lion Concern Himself

Joking memes make light of the uncomfortable reality: everyone's got a little of that post-COVID brain damage these days

www.thegauntlet.news

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Reposted by Billy Hanlon

babs ✨ @itsbabs.bsky.social · 3d

i started experiencing lupus symptoms at 12, but remained undisguised until 22. my experiences resonate so very heavily with these young people. i am so devastated to know many are living these lives now. i hope to offer them camaraderie, whatever that looks like. 🥺🙏🏻

thetranscendedman @atranscendedman.bsky.social · 3d

16 Swedish children aged 9-18 described how long COVID reshaped their lives.

Fatigue ruled their days, friendships faded, and school became a struggle.

Yet with time and support, many found acceptance and hope that life could improve.

bmcpediatr.biomedcentral.com/articles/10....

Experiences of living with long COVID during childhood and adolescence: a qualitative study from the child’s perspective - BMC Pediatrics

Background In February 2023, the World Health Organization (WHO) defined long COVID in children, highlighting limited knowledge about its psychosocial impact. Studies show it as a complex, long-lasting condition affecting multiple systems. WHO and researchers emphasise the need for more understanding, particularly its effect on daily life. The aim of this study was to explore how life is experienced and how it changed whilst living with long COVID during childhood. Methods We present a qualitative study with an inductive and exploratory approach. Between October 2022 and March 2024, 16 children between 9 and 18 years old diagnosed with long COVID were interviewed face-to-face using a semi-structured interview guide. The results were analysed using reflexive thematic analysis by Braun and Clarke. Results The results present the subjective reality of children suffering from long COVID and their struggle in daily life. The findings are presented through three themes: Losing my foothold, Fatigue decides my path, and My way forward, illustrating a temporal and emotional journey, reflecting how children make sense of their experiences, adapt to the persistent impact of long COVID, and gradually move toward acceptance. Conclusions This study addresses the lack of knowledge of long COVID in the society, how it affects children in their struggle to find a new path in life. It also shows that, with knowledge and support, the symptoms and the burden of the condition can decrease or even pass. It is important that people around these children, including health care, school and family, use this knowledge to promote health and avoid educational, health and social problems at a vulnerable time in life.

bmcpediatr.biomedcentral.com

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Julia Doubleday @juliadoubleday.bsky.social · 2d

If you enjoy The Gauntlet and want to see more reporting on COVID & Long COVID, please become a paid supporter at the link! I never paywall public interest reporting but paid members do receive additional personal essays each month. TY!

www.thegauntlet.news/subscribe

Subscribe to The Gauntlet

COVID Information, Updates, and Commentary. Click to read The Gauntlet, by Julia Doubleday, a Substack publication with tens of thousands of subscribers.

www.thegauntlet.news

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Julia Doubleday @juliadoubleday.bsky.social · 2d

Nobody has Long COVID, but everybody has brain fog, cognitive decline and memory loss. I talk about the overwhelming scientific evidence that COVID damages the brain, and the overwhelming social unwillingness to acknowledge it in my latest:

www.thegauntlet.news/p/when-will-...

When Will the Lion Concern Himself

Joking memes make light of the uncomfortable reality: everyone's got a little of that post-COVID brain damage these days

www.thegauntlet.news

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Reposted by Billy Hanlon

#9 Dream @gayfabfourfan.bsky.social · 2d

Another must read: 🔥
“[Masses] are being harmed, more slowly, in more subtle ways... [Disabled people & people with Long COVID] have been harmed first and worst, but we are warning you that COVID is dangerous because our bodies are made of flesh and blood - hearts and brains- just like yours.”

Julia Doubleday @juliadoubleday.bsky.social · 2d

Nobody has Long COVID, but everybody has brain fog, cognitive decline and memory loss. I talk about the overwhelming scientific evidence that COVID damages the brain, and the overwhelming social unwillingness to acknowledge it in my latest:

www.thegauntlet.news/p/when-will-...

When Will the Lion Concern Himself

Joking memes make light of the uncomfortable reality: everyone's got a little of that post-COVID brain damage these days

www.thegauntlet.news

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Reposted by Billy Hanlon

David Kaufman @kaufmanmd.bsky.social · 3d

This has been happening to families with kids with ME/CFS for literally decades!!! Cruel and outrageous.

Neurologist Mom @neurologistmom.bsky.social · 3d

Everyone ignores this huge problem striking families with LC kids, already devastated. If these extremely vulnerable children were taken from their parents “by mistake,” they’d lose the essential care they need to survive. Even the hint of this is terrifying. This is inhumane.

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Billy Hanlon @bhanlon15.bsky.social · 1d

12 News Now: 'Austin-based nonprofit spreading awareness on the effects of long covid'

'The Long Covid Collective is a support group that formed last year to show those suffering that they are not alone'

www.12newsnow.com/video/news/l...

Austin-based nonprofit spreading awareness on the effects of long covid

The Long Covid Collective is a support group that formed last year to show those suffering that they are not alone

www.12newsnow.com

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Billy Hanlon @bhanlon15.bsky.social · 1d

Medscape: 'ESC Aims to Tackle Cardiac Risks Associated With Long COVID'

'Researchers estimate up to 5% of all individuals infected with COVID, or approximately 5 million people globally, develop cardiac long COVID'

www.medscape.com/viewarticle/...

ESC Tackles Cardiac Risks of Long COVID

An ESC report outlining the effects of COVID and long COVID on the heart emphasizes the need for early detection, vaccination, and cardiac rehab.

www.medscape.com

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Billy Hanlon @bhanlon15.bsky.social · 1d

SciAM: 'Repeat COVID infections raise long-term health risks for kids'

'According to a study published last week in the Lancet Infectious Diseases, the risk of children and young adults developing long COVID could be twice as high with a second infection'

www.scientificamerican.com/podcast/epis...

Scientists Develop Flu Test That Produces Herbal Flavor When Virus Is Present

Saturn’s moon Enceladus shows signs of life-supporting chemistry, fungi may have shaped Earth before plants, and repeat COVID infections raise long-term health risks for kids.

www.scientificamerican.com

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