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longcovidactionuk.bsky.social
Long Covid Patient Action UK
@longcovidactionuk.bsky.social
330 followers 620 following 18 posts
Was LC_UK_ACTION on the other place.
Trying to rebuild community.
LC since Dec 2019. Disabled. Masking.
#CleanAir #LongCovid
Posts Replies Media Videos
Reposted by Long Covid Patient Action UK
putrinolab.bsky.social
At LAX rn feeling pretty exhausted but happy after providing CME-accredited #LongCOVID, #MECFS and chronic #Lyme disease education to over 1000 physicians this week. This is going to be the rhythm for 2025: sharing what we have learned from research and clinical experience 1/
January 25, 2025 at 3:35 AM
Reposted by Long Covid Patient Action UK
broadwaybabyto.bsky.social
“Currently, Kansas has the largest outbreak that they've ever had in history," Ashley Goss, a deputy secretary at the Kansas Department of Health and Environment”

A perfect example of why we need robust and functioning public health.

Also respirators will protect from TB.
Kansas tuberculosis outbreak is now America's largest in recorded history
Kansas public health officials say the state's ongoing tuberculosis outbreak is the largest since the CDC started reporting TB cases in the 1950s.
www.cjonline.com
January 24, 2025 at 8:29 PM
Reposted by Long Covid Patient Action UK
mackayim.bsky.social
Child deaths in England rising above pre-pandemic levels, study finds
-Amazing what happens when you protect children from infection. Then stop protecting children from infection.
I bet this would have been a smaller figure if the air was cleaned.
www.theguardian.com/world/2025/j...
Child deaths in England rising above pre-pandemic levels, study finds
Number surges after temporary decline during lockdowns, with rate higher for children from non-white backgrounds
www.theguardian.com
January 24, 2025 at 6:40 AM
Reposted by Long Covid Patient Action UK
scottsquires.bsky.social
COVID-19: Study Suggests Long-term Damage to Immune System

www.infectioncontroltoday.com/view/covid-1...
COVID-19: Study Suggests Long-term Damage to Immune System
NIH News Release: "...findings suggest that SARS-CoV-2 infection damages the CD8+ T cell response, an effect akin to that observed in earlier studies showing long-term damage to the immune system afte...
www.infectioncontroltoday.com
January 24, 2025 at 12:54 PM
Reposted by Long Covid Patient Action UK
dalupton.bsky.social
Many social researchers and public health experts have stopped commenting on the apathy, complacency and poor management of
COVID. Here’s some references to the recent work of scholars who are still keeping up the fight

simplysociology.wordpress.com/2025/01/24/r...
Recent critiques of COVID pandemic management and politics – a bibliography
We are now in the sixth year of the COVID-19 pandemic, with ever greater revisionism, apathy and complacency on the part of governments, health agencies, healthcare services, workplaces and the gen…
simplysociology.wordpress.com
January 24, 2025 at 7:41 AM
Reposted by Long Covid Patient Action UK
mark-ungrin.bsky.social
From populists on the right, but also from establishment figures desperate to bury their responsibility, there's an ongoing push to bury the harms of COVID.

Long COVID alone costs 7M life-years (QALYs) and on the order of a trillion dollars a year in the OECD.
www.oecd-ilibrary.org/social-issue...
1. While a precise estimate of long COVID prevalence is still emerging, current research suggests that up to 10-30% of people who contracted COVID-19 exhibit symptoms corresponding to long COVID in the weeks and months following acute infection. Across OECD countries at a minimum, this would represent upwards of 39 million people who had or are currently living with long COVID. Sustainable investment in long COVID research is crucial to inform health and social care resource allocation. As the evidence base grows, developing standardised measures of symptoms and functional impact to support a more precise definition that enables the disaggregation of levels of long COVID severity could be useful to better understand the condition, assess its impact, and to tailor care and support. 3. Long COVID can severely limit people’s ability to undertake basic activities of daily life and can dramatically hamper quality of life. More than 7 million quality-adjusted life years may be lost annually across OECD countries due to the condition. Studies from across a range of OECD countries suggest that one sixth to more than one-third of people may have persistent cognitive symptoms, often lasting more than 12 weeks, after a COVID-19 infection. 4. Even conservative estimates of long COVID prevalence would indicate that long COVID may be reducing the workforce by nearly 3 million workers across OECD countries, amounting to an economic cost of at least $141 billion USD from lost wages alone. Moreover, even among those who were able to return to the labour force, a significant proportion reported needing to reduce the number of hours they worked, compared to before their infection. 5. The economic and social welfare costs of long COVID are dramatic: Even excluding the direct costs of health care, long COVID is likely costing OECD countries as much as $864 billion $1.04 trillion USD per year due to reductions in quality of life and labour force participation. The limitations in activities experienced by long COVID patients, including dropping out or reducing their participation in the labour force, as well as direct medical care costs, can have dramatic implications on their financial well-being. Costs to health and social protection systems may also be high over time. 6. Long COVID could further exacerbate inequalities: The COVID-19 pandemic brought attention to longstanding socioeconomic and demographic inequalities in health. Evidence from some countries suggests that certain groups – including populations with lower education attainment, and those living in more deprived areas – may be at risk of developing long COVID, and of experiencing more severe symptoms. 7. Patients have played a critical role in bringing attention and action to long COVID: Throughout the pandemic, countries deprioritized many key aspects of person-centred care in exchange for rapidly implementing policies intended to contain the virus. While the need for rapid action was clear, the lack of patient voice in the process was notable. In contrast, patients and patient groups have been at the forefront of advocating for both a recognition of long COVID as a legitimate condition, in articulating their care and support needs, and in spearheading research into the condition. In many cases, countries have responded by actively working together with patient groups to disseminate information and develop patient-centred support services.
November 25, 2024 at 8:11 PM
Reposted by Long Covid Patient Action UK
gavinyamey.bsky.social
"Any prolonged pause in funding could disrupt HIV treatment programs, leading to treatment interruptions, rise of drug-resistant HIV. That’s playing with fire, risking progress that we’ve made over decades to control the HIV epidemic”
[email protected]

www.nytimes.com/2025/01/24/u...
Trump Pauses Disbursements to Program Supplying H.I.V. Treatment Worldwide (Gift Article)
Pepfar, which is estimated to have delivered lifesaving treatment as many as 25 million people in 54 countries, faces a funding delay of as long as 180 days.
www.nytimes.com
January 24, 2025 at 9:02 PM
Reposted by Long Covid Patient Action UK
thanhneville.medsky.social
One of my friends has a grant from the #FDA to look at disparities in clinical trial research and just submitted a manuscript with the findings. She was told today by the collaborators from the #FDA to rescind it.

#Censorhip has started, we are living in authoritarian government.
US FDA drops web pages on improving clinical trial diversity
The U.S. Food and Drug Administration has pulled draft guidance from its website requiring companies to test medicines and devices in diverse populations as part of a purge of diversity, equity and inclusion efforts at U.S. health agencies.
www.reuters.com
January 25, 2025 at 2:22 AM
Reposted by Long Covid Patient Action UK
me-cfs.bsky.social
If they won’t accept a new study into GET, they must withdraw the outdated one that recommends GET based on the definition of ME/CFS as “chronic fatigue” without requiring PEM.

Please sign and share far and wide: chng.it/zTZ7vX9Czd
December 16, 2024 at 10:48 AM
longcovidactionuk.bsky.social
And so the
#greatestMEdicalscandal continues.
Undoubtedly due to immense pressure from the usual grifters.
sunsopeningband.bsky.social Todd Davenport @sunsopeningband.bsky.social · Dec 16
The author team received word today that Cochrane will not accept the protocol we submitted to update the 2017 review on exercise therapy for ME/CFS. To say the very least—a disappointing development for people living with ME/CFS and the state of the science.
December 16, 2024 at 3:28 PM
longcovidactionuk.bsky.social
New:Journal of Medical Virology: 'Multi-Organ Spread & Intra-Host Diversity of SARS-CoV-2 Support Viral Persistence, Adaptation, & Mechanism That Increases Evolvability'.
Confirms viral reservoir AND compartmentalised evolution in multiple organs. #longcovid
onlinelibrary.wiley.com/doi/10.1002/...
Multi‐Organ Spread and Intra‐Host Diversity of SARS‐CoV‐2 Support Viral Persistence, Adaptation, and a Mechanism That Increases Evolvability
Intra-host diversity is an intricate phenomenon related to immune evasion, antiviral resistance, and evolutionary leaps along transmission chains. SARS-CoV-2 intra-host variation has been well-eviden...
onlinelibrary.wiley.com
December 16, 2024 at 3:15 PM
Reposted by Long Covid Patient Action UK
njbbari3.bsky.social
Content warning…

HICPAC not recommending respirator use in healthcare because…

wait for it…

“health care facilities must also focus on other major problems they face, such as health care staffing shortages”

Bahahahahahaha

🤡

www.infectioncontroltoday.com/view/cdc-hic...
CDC HICPAC Considers New Airborne Pathogen Guidelines Amid Growing Concerns
The CDC HICPAC discussed updates to airborne pathogen guidelines, emphasizing the need for masks in health care. Despite risks, the committee resisted universal masking, highlighting other mitigation ...
www.infectioncontroltoday.com
December 16, 2024 at 12:07 PM
Reposted by Long Covid Patient Action UK
1goodtern.bsky.social
I don't know who needs to hear this, but you don't cure a disease by pretending it doesn't exist.
December 10, 2024 at 3:20 PM
longcovidactionuk.bsky.social
From 2020. Pre vaccines. "SARS-CoV-2 Infections Regardless of Severity Linked to Blood Vessel Damage in Children". "A high proportion met clinical & diagnostic criteria for thrombotic microangiopathy, a syndrome that causes small blood clots in blood vessels."
www.research.chop.edu/cornerstone-...
SARS-CoV-2 Infections Regardless of Severity Linked to Blood Vessel Damage in Children
SARS-CoV-2 Infections, even those with minimal or no symptoms, are linked to blood vessel damage in children.
www.research.chop.edu
December 10, 2024 at 8:25 AM
Reposted by Long Covid Patient Action UK
davetuller1.bsky.social
Here's a letter to The BMJ seeking a correction in the review of Long Covid interventions. They based their recommendation for rehabilitation on another BMJ study that had already been corrected.
virology.ws/2024/12/09/t...
Trial By Error: Letter to BMJ Editor Seeking Correction in New Review of Interventions for Long Covid | Virology Blog
By David Tuller, DrPH The BMJ recently published a review of interventions for Long Covid that--surprise!--recommended CBT and a rehabilitation program as t ...
virology.ws
December 9, 2024 at 7:58 PM
longcovidactionuk.bsky.social
It's like something* is causing a massive spike in cardiovascular events. (Spoiler: it's covid. Since 2020. Pre vaccines)
"COVID-19..significantly increase the risk of heart attack, stroke & death for up to 3 years among unvaccinated people early in the pandemic"
www.thetimes.com/article/b9d2...
Heart attack patients advised to get themselves to A&E
With six of England’s ten ambulance trusts at risk of service failure, another winter of scandal and tragedy is upon us
www.thetimes.com
December 9, 2024 at 6:35 AM
Reposted by Long Covid Patient Action UK
sunny-rae1.bsky.social
4/to reduce viral transmission and reinfections. I am witnessing healthy children having their lives destroyed by being exposed to Covid over and over again. I am witnessing a lack of understanding by many of the very serious long term implications of this disease, I am witnessing a lack of
November 29, 2024 at 12:11 PM
longcovidactionuk.bsky.social
'Persistence of spike protein at the skull-meninges-brain axis may contribute to the neurological sequelae of COVID-19' in Cell. Compare vs *that* BMJ review peddling CBT for #longcovid & ask yourself: 'Which of these = objective evidence? But which will my Dr read?'

www.cell.com/cell-host-mi...
Persistence of spike protein at the skull-meninges-brain axis may contribute to the neurological sequelae of COVID-19
SARS-CoV-2 infection can lead to long-lasting neurological sequelae, but underlying mechanisms are unclear. Rong et al. report that SARS-CoV-2 spike protein persists in the skull-meninges-brain axis, ...
www.cell.com
December 1, 2024 at 6:55 AM
Reposted by Long Covid Patient Action UK
scholerined.bsky.social
Patients deserve universal respirator use in all healthcare settings. It's part of the oath we take as physicians to do no harm. Shame on you if you work in healthcare with face-to-face patient contact and you don't wear a respirator mask every. single. time.
broadwaybabyto.bsky.social Kelly @broadwaybabyto.bsky.social · Nov 27
Young child with possible leukaemia goes to hospital for bone marrow biopsy & ends up in ICU with RSV

We need mandatory masking in healthcare.

A baby can’t protect themselves. You can’t take a “you do you” approach with an infant.

www.disabledginger.com/p/a-plea-to-...
Screenshot of a TikTok post that shows a young baby in the hospital. White text reads Kirstin About a week ago, we found out Luca most likely has AML leukemia. They were waiting for more tests to return but felt pretty confident this was the route we were headed. Since it was the very beginning stages we had.someny time as a family perore St treatment. Could be a Couple Weeks to max a couple of months. I hated the diagnosis but was unbelievably grateful we had some time before being admitted and starting chemo. Unfortunately, when Luca came to the hospital for his bone marrow biopsy he caught RSV. He was doing ok and then declined very quickly. On Wednesday night, he was admitted into the ICU and throughout the night declined more and was intubated. Yesterday morning was some of the scariest moments of our life. Luca was fighting for his life. They were able to
November 27, 2024 at 4:33 PM
Reposted by Long Covid Patient Action UK
walkerbragman.bsky.social
Another way of framing it:

Bhattacharya and his Great Barrington Declaration co-authors were providing scientific cover for an economic agenda supported by right-wing business interests.

They wanted mass infection of the population to keep the economy rolling. They never cared about the elderly.
adamjkucharski.bsky.social Adam Kucharski @adamjkucharski.bsky.social · Nov 27
Note to journalists: important to communicate that the stated aim of GBD was to have a massive epidemic (immediately before vaccines became available), and also somehow keep it away from older population at higher risk (which would be about 25% of UK population if take age 60 as cutoff)
November 27, 2024 at 5:27 PM
Reposted by Long Covid Patient Action UK
brandyzadrozny.bsky.social
New: Recordings from private autism conferences show Trump HHS pick Robert F. Kennedy Jr. vilifying & conspiracy theorizing about agencies he's set to lead. Videos show RFK Jr comparing CDC vaccine programs to "Nazi death camps" & calling for researchers to be jailed. www.nbcnews.com/health/healt...
RFK Jr. attacked the CDC’s ‘fascism’ and likened vaccinating children to abuse by the Catholic Church
Robert F. Kennedy Jr., Donald Trump’s pick for Health and Human Services secretary, also argued for jailing vaccine scientists in previously unreported comments at autism conferences.
www.nbcnews.com
November 28, 2024 at 12:20 AM
Reposted by Long Covid Patient Action UK
broadwaybabyto.bsky.social
Young child with possible leukaemia goes to hospital for bone marrow biopsy & ends up in ICU with RSV

We need mandatory masking in healthcare.

A baby can’t protect themselves. You can’t take a “you do you” approach with an infant.

www.disabledginger.com/p/a-plea-to-...
Screenshot of a TikTok post that shows a young baby in the hospital. White text reads Kirstin About a week ago, we found out Luca most likely has AML leukemia. They were waiting for more tests to return but felt pretty confident this was the route we were headed. Since it was the very beginning stages we had.someny time as a family perore St treatment. Could be a Couple Weeks to max a couple of months. I hated the diagnosis but was unbelievably grateful we had some time before being admitted and starting chemo. Unfortunately, when Luca came to the hospital for his bone marrow biopsy he caught RSV. He was doing ok and then declined very quickly. On Wednesday night, he was admitted into the ICU and throughout the night declined more and was intubated. Yesterday morning was some of the scariest moments of our life. Luca was fighting for his life. They were able to
November 27, 2024 at 4:47 AM
Reposted by Long Covid Patient Action UK
kateviolette.com
I appreciate liberals suddenly caring about disinformation again, but those of us that've been tending this home fire for the past four years are gonna need y'all to recognize the covid disinformation you need to undo in your own mind if you want to stand in solidarity with disabled people.
November 20, 2024 at 2:31 AM
Reposted by Long Covid Patient Action UK
drjoepajak.bsky.social
'The costs associated with working days lost due to Long COVID could potentially cost the UK economy up to £20billion a year.' Senior author, Professor, @ManuellGomes @UCL_IEHC @CSJMagazine @uclnews
#CovidIsNotOver #COVID19
Nota bene: @wesstreeting
www.clinicalservicesjournal.com/story/46597/...
Long Covid could cost the economy billions every year
Working days lost to long Covid could be costing the economy billions of pounds every year as patients struggle to cope with symptoms and return to work, finds a new study led by UCL researchers.
www.clinicalservicesjournal.com
November 16, 2024 at 8:15 AM