Alex
@admiringbog.bsky.social
410 followers 390 following 430 posts
person with ME/CFS professional slug
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admiringbog.bsky.social
I’ve learnt an incredible amount about #ME/CFS from social media.
conradhackett.bsky.social
Has anything great happened in your life because of social media?
Reposted by Alex
broadwaybabyto.bsky.social
“1 in 17 acute-care hospital stays involved at least one harmful event. In 1/4 of those cases, patients experienced more than one.”

This is why disabled patients say no one should be alone in hospital.

Everyone needs an advocate.

Most of us have experienced tremendous harm:
‘No blame, no shame’: Experts urge culture shift to reduce hospital harm
A new report shows preventable harm continues to be a significant issue in Canadian hospitals, affecting thousands of patients and adding pressure to the health-care system.
www.ctvnews.ca
Reposted by Alex
grachstephanie.bsky.social
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.
Reposted by Alex
clancyny.bsky.social
Scientists who study Long Covid at a conference. All are wearing N95 masks. source:
x.com/AnciraBecky/...
Becky A Robertson
@AnciraBecky
Scientists who study Long Covid pictured last week wearing N95 respirators.

photo

people sitting in a conference center ballroom with golden chandeliers overhead. they are at long, slender tables draped in black cloth that many are using for laptops or to take notes on paper.


all of the scientists are wearing face masks.
Reposted by Alex
thebreakdownab.bsky.social
WOW!

Alberta just got another approved referendum petition!

And this one calls for the practice of funding private schools with public money to be put to an end!

During the teachers strike!

Strap in Alberta, we’re going on a ride!

#abpoli #ableg #cdnpoli
admiringbog.bsky.social
I thought that was odd, because aren’t rhythms different from HR? But I also thought maybe it was a new term I didn’t know.
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Reposted by Alex
baddestmamajama.bsky.social
Long Covid is the most common chronic illness among children now. Congratulations?
blbalthaser.bsky.social
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.
Reposted by Alex
bhanlon15.bsky.social
Global News: 'Photo exhibition highlights reality of Canadians with long COVID'

'The Living with Long COVID exhibition is a collaboration by the Museum of Vancouver and SFU's Faculty of Health Sciences - offering a glimpse into the daily lives...'

globalnews.ca/video/114650...
Photo exhibition highlights reality of Canadians with long COVID | Watch News Videos Online
Watch Photo exhibition highlights reality of Canadians with long COVID Video Online, on GlobalNews.ca
globalnews.ca
Reposted by Alex
cvcev.bsky.social
Seren is a young person who lives in a really vulnerable household.

Everyone should listen to her story.

💙💜💗 #educationANDlives
Reposted by Alex
vashetc.bsky.social
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
Reposted by Alex
annabookwriter.bsky.social
The number of parents who gasped when we told them no, we could not tell them what their kids checked out because their kids have a right to privacy!

We offered “one book cards” to kids whose parents wouldn’t agree to let them have a card. They could take out a book at a time. The FURY.
blumagaincurios.bsky.social
My feelings about Banned Books Week are that no indeedy parents do NOT have the right to decide what their own children read, because children are human beings with the right to dignity and privacy.

Agreeing w the parents rights premise shifts the Overton window in the wrong ass direction.
Reposted by Alex
kaufmanmd.bsky.social
This has been happening to families with kids with ME/CFS for literally decades!!! Cruel and outrageous.
neurologistmom.bsky.social
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.
Reposted by Alex
gayfabfourfan.bsky.social
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.”
juliadoubleday.bsky.social
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
Reposted by Alex
itsbabs.bsky.social
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. 🥺🙏🏻
atranscendedman.bsky.social
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
admiringbog.bsky.social
I developed ME/CFS as a teenager, I can barely read this stuff. What if instead of things getting better for the next generation, the problem just exploded.
admiringbog.bsky.social
It was bad back when people were paying for it.
admiringbog.bsky.social
explanation of the dam analogy:
valebodi.bsky.social
“The big sample size of @decodemestudy.bsky.social is like a microscope that allows us to zoom in on #ME/CFS, closer than ever before. It’s the highest-resolution picture of the illness that we have. And because it looks at DNA, we know that it uncovers causal relations. It’s not only a microscopic
DecodeME: the biggest ME/CFS study ever - ME/CFS Science
The first results of DecodeME are in, the largest research project ever undertaken on myalgicContinue readingDecodeME: the biggest ME/CFS study ever
mecfsscience.org
admiringbog.bsky.social
I like the dam explanation here. I didn’t really understand the analogy when Chris Ponting mentioned it.
Reposted by Alex
valebodi.bsky.social
“The big sample size of @decodemestudy.bsky.social is like a microscope that allows us to zoom in on #ME/CFS, closer than ever before. It’s the highest-resolution picture of the illness that we have. And because it looks at DNA, we know that it uncovers causal relations. It’s not only a microscopic
DecodeME: the biggest ME/CFS study ever - ME/CFS Science
The first results of DecodeME are in, the largest research project ever undertaken on myalgicContinue readingDecodeME: the biggest ME/CFS study ever
mecfsscience.org
Reposted by Alex
chromatowski.bsky.social
We have the opportunity to make a similarly historic gain with clean indoor air.

To take 2023 as a benchmark, respiratory viruses (especially flu and Covid) are killing in the vicinity of 100k a year in the U.S.

It doesn’t have to be that way.
kenburnside.bsky.social
I'm a historian. Sewage systems have saved more lives than any medical intervention. Vaccines are second and antibiotics third.

Prior to the 1880s, the urban annual death rate was ~25%; it dropped to ~0.5% in under a generation.

Support your sewage system. Dispose of bodies responsibly.
neorsd.org
I’m a sewage system. I also have a great personality.
admiringbog.bsky.social
I looked him up and immediately yikes
Reposted by Alex
gayfabfourfan.bsky.social
“Stratus is known 2 cause hoarseness and a scratchy or sore throat, which can be mistaken for allergies… The strain carries unique mutations that enhance its ability 2 evade antibodies gained from prior COVID infections or vaccinations.”

Unfortunately the article, like most, fails 2 mention masks.
New, highly transmissible COVID-19 strain fueling wave of infections across US
The increased Covid activity comes as the US heads into fall respiratory illness season, which tends to bring a rise in cases of the common cold, flu and respiratory syncytial virus (RSV).
nypost.com