Gary Anderson

‘Most People with Long COVID Are Their Own Doctors’: Self-Tracking and Online Patient Groups as Pathways to Challenging Epistemic Injustice — Sazana Jayadeva and Deborah Lupton "Epistemic justice for people with Long COVID and other contested illnesses will never be fully achieved until the medical profession can develop greater epistemic humility and takes steps to redress testimonial and hermeneutical injustice."

‘Most People with Long COVID Are Their Own Doctors’: Self-Tracking and Online Patient Groups as Pathways to Challenging Epistemic Injustice by @sazanajayadeva.bsky.social ‪& @dalupton.bsky.social

journals.sagepub.com/doi/10.1177/...

Screenshot from Science for ME weekly update

#LongCovid #PASC

Skeletons in yoga poses on a lawn of a house

#chronicillness

🚨 New National Guidelines Alert!
Our very own Dr. Dimitri Drekonja together with colleagues just authored the IDSA guidelines for urinary tract infections.

ID expertise from the University of Minnesota helping shape clinical care nationwide. 💪💊 #IDSky #UMNproud #UTI #MedSky #InfectiousDiseases

A harmful algal bloom, fueled by a marine heat wave, has been choking South Australia's coastline, turning once-colorful ecosystems filled with thriving marine life into underwater graveyards.

Read more: cnn.it/3H9z0wu

Star letter Using language to describe ME I think Helen explained severe ME very well with the description “Severe ME is like dragging around a dead body and I’m both the dead body and the person dragging it around” (Interaction 117, p 21). I often use the phrase “dragging myself round like a corpse” when asked how I’m doing. I also use the analogy, “Someone turned up the gravity!” I like to stay positive and not feel like I’m moaning all the time, so I find dark humour and descriptive language (and swear words!) very useful to describe how I’m feeling without seeming too negative. I also find it useful to have shorthand to use with close friends and family to communicate easily which state I’m currently in. For example, “struggling” means I’m able to get out of bed, but even the slightest activity is incredibly difficult, and “wrecked” roughly translates as “Don’t expect me to be able to move much or string together a coherent sentence.” They also understand that when I say I’m “good”, “okay” or “not bad” I mean it in a purely comparative sense! Nikki Pope Age 46, ME for over 30 years

"Using language to describe ME"

From the Winter 2024 InterAction magazine of Action for ME

#MEcfs #CFS #PwME

Screen shot of text: "Capitalism is an economic system founded on colonial looting. It operates on a constantly shifting and self-consuming frontier, on which both state and powerful private interests use their laws, backed by the threat of violence, to turn shared resources into exclusive property, and to transform natural wealth, labor, and money into commodities that can be accumulated." This is from the book Invisible Doctrine: The Secret History of Neoliberalism by George Monbiot and Peter Hutchison. It is offered as a definition of capitalism. IMHO this is very useful in a variety of ways, not the least of which that it distinguishes capitalism from commerce. Many seem to think that commerce is capitalism rather than a form of trading that precedes capitalism by thousands of years. By using their definition of capitalism as a lens through which to examine current govt. and industry actions around the world, a much clearer understanding can be gained. To pick a few, the current actions of the Trump led US government and the many policies the AoNZ govt has pushed through under urgency - including the new pay equity law.

I'm reading @georgemonbiot.bsky.social and and Peter Hutchison's Invisible Doctrine: The Secret History of Neoliberalism. They offer this definition of capitalism. See alt text for more.
I just finished The Internet Con: How to Seize the Means of Computation by Cory Doctorow. NFTs are now gone...

What’s the real beef over sustainable cattle farming? | Letters Letters: Øistein Thorsen of FAI Farms, Aidan Harrison and Nelly Trevelyan of Yorkshire Organic Millers respond to an article by George Monbiot

So the meat industry has beef with @georgemonbiot.bsky.social, but the three responses here merely double down on bullshit.
1) The FAI farms guy attempts to dodge Monbiot's criticisms with vague obfuscation, providing no clarity in his explanation. 🧵
1/2
www.theguardian.com/environment/...

A small bird with shimmering green, blue, and golden feathers, a dark head, and a slender black beak perched on a light brown branch against a softly blurred background.

I love these too much. I just can't help myself with photographing them.

Fiery-throated Hummingbird at Batsu Gardens, San Gerardo de Dota #CostaRica

#birds #hummingbirds #nature 🌿

The impact of the PEPFAR funding freeze on HIV deaths and infections: a mathematical modelling study of seven countries in sub-Saharan Africa The sudden cessation of PEPFAR funding likely results in tens of thousands of HIV deaths and new infections. These losses of life and health should compel the United States government to rapidly and f...

Projected deaths from cessation of USAID PEPFAR funding
www.thelancet.com/journals/ecl...
a 90-day freeze is expected to result in ~60,000 excess deaths

A stacked bar chart (oriented horizontally) labeled: Living with ME (myalgic encephalomyelitis / chronic fatigue syndrome) Each horizontal bar is a disease status: Pre-ME, Mild ME, Moderate ME, Severe ME, Very Severe ME. The width of each bar represents how much energy is available in each status (100, 50, 25, 12.5, and 6.25 respectively). Each bar is divided into sections for how one might allocate their energy: hygiene & nutrition (gray); caregiving, cleaning errands (red); work (orange); exercise (yellow); friends (green); hobbies (blue); fun (purple). With worsening ME, the hygiene & nutrition takes up a larger proportion of total available energy and the amount of energy available for all other parts of life shrinks. Mild ME has most things cut in half, with exercise cut smaller. Moderate ME removes exercise altogether, and everything else shrinks. Severe ME has only tiny slivers of red, orange, green, blue and purple. Very Severe ME has only a tiny sliver of green.

NIH recently found 1 in 22 ppl who’d had Covid developed ME/CFS. The “mild” form of that disease, as @julialmv.bsky.social’s graph shows, means losing capacity to do 50% of your daily activities.

What would you give up?

Friends? Time w/your kids? Could you cut work hours in half w/o losing yr job?

Screenshot from webinar showing image of Dr Margaret O’Hara at the top below which is a slide with a blue background with the Long Covid Kids and Long Covid Support logos in the top right. The slide is titled 08 Hidden Demand below which is a chart showing the hidden demand for Long Covid Services in Derbyshire Primary Care Network. Text on the right reads Hidden demand far outstrips visible demand Referrals are NOT a good metric for demand.

At our webinar on our #LongCovid Clinics report with @longcovidkids.bsky.social, our Trustee @margaretohara.bsky.social talked about hidden demand for Long Covid care:

“Hidden demand far outstrips visible demand. Referrals are NOT a good metric for demand.”

Link to report below.

#ClosingClinics

Pedro Pascal matched to ME/LongCovid research infographic The future is a policy choice: Addressing Infection-Associated Chronic Conditions Crunch ME, 2025 Medicine has long had a blind spot on Infection-Associated Chronic Conditions (IACC), which include: Long Covid, ME/CFS, POTS, MCAS, Fibromyalgia, & Chronic Lyme Disease. ME/CFS has a greater disease burden than MS & Parkinson's combined, while Long Covid disease burden is comparable to diabetes. Despite the high severity and disease burden, Long Covid & ME/CFS are deeply underfunded in proportion to their Disability-Adjusted Life Years (DALY).

#PedroPascalPapers
#LongCovidAwarenessDay
@crunchme.bsky.social

Pedro Pascal matched to ME/LongCovid research infographic Long Covid Now Looks Like a Neurological Disease Scientific American, 2023 Covid protein found in neurons & astrocytes up to 3 months after initial infection in those with neuropsychiatric symptoms. Autopsies have found Covid RNA in the brain up to 8 months after infection. Those with cognitive problems have immune-related abnormalities in their cerebrospinal fluid & higher amounts of immune cells in the brain that should not be there, causing inflammation. "(Long Covid) is not a psychological or psychosomatic disorder; this is a neuroimmune disorder"

Pedro Pascal matched to ME/LongCovid research infographic Current update on the neurological manifestations of long COVID PubMedID: 39850323, 2024 Neuroinflammation: elevated levels of pro-inflammatory cytokines & autoantibodies →chronic inflammation in central & peripheral nervous systems. Latent virus reactivation exacerbates & viral reservoirs may perpetuate inflammation. Endothelial dysfunction damages blood brain barrier. Hypometabolism likely due to mitochondrial dysfunction & oxidative stress are found in high ACE2 areas such as brainstem, hippocampus, olfactory bulb. Autonomic dysfunction is possibly due to damage to the brainstem & vagus nerve. Genetic susceptibility

Pedro Pascal matched to ME/LongCovid research infographic Persistence of spike protein at the skull-meninges-brain axis may contribute to the neurological sequelae of COVID-19 Cell, 2024 The accumulation of SARS-CoV-2 spike protein in the skull-meninges-brain axis of human COVID-19 patients was observed, persisting long after viral clearance. Biomarkers of neurodegeneration were elevated in the cerebrospinal fluid from long COVID patients. Proteomic analysis of human skull, meninges, and brain samples revealed dysregulated inflammatory pathways and neurodegeneration-associated changes.

Pedro Pascal matched to ME/LongCovid research infographic Microglia dysfunction, neurovascular inflammation & focal neuropathologies are linked to... systemic inflammation in COVID Nature Neuroscience, 2025 Microglial dysfunction, mitochondrial failure & cell death occurs at sites of Covid-associated vascular inflammation. These pathologies are found in several areas of the brain, but more severe in the medulla, where key autonomic centers are localized. Covid induced inflammation may lead to gliovascular failure in the brain, which could be a common contributor to COVID-19-related neuropathologies

#PedroPascalPapers
Pedro Pascal as Neurological Manifestations of #LongCovid #LongCovidAwarenessDay

Microglia dysfunction, neurovascular inflammation and focal neuropathologies are linked to IL-1- and IL-6-related systemic inflammation in COVID-19 - Nature Neuroscience The authors show that brain inflammation in COVID-19 correlates with viral load, systemic inflammation and virus-sensing pattern recognition receptors. Microglial dysfunction occurs at sites of vascular inflammation with myelin injury and synapse loss.

A study in Nature Neuroscience shows that brain inflammation in COVID-19 correlates with viral load, systemic inflammation and virus-sensing pattern recognition receptors. Microglial dysfunction occurs at sites of vascular inflammation with myelin injury and synapse loss. 🧪

#LongCovid syndrome in children: neutrophilic granulocyte dysfunction and its correlation with disease severity

"Because younger and middle-age people are the most frequently and severely affected by Neuro-PASC, whether this could potentially translate into a higher or earlier incidence of subsequent cognitive impairment and neurodegenerative diseases in this population is a matter of serious concern"

For people to accept vaccinations, they need to accept there is a small risk of adverse outcomes, for a much larger benefit. This is a rational response. The same is not true of pretending that a dangerous pathogen is not pecking away at our population for the sake of "normalcy" & profit.

"It takes so long to be found... "

Case Study: Aranet Sensors at Riga First Hospital - Aranet Aranet sensors optimize indoor climate and energy efficiency at Riga First Hospital by providing accurate, real-time monitoring of environmental conditions. About the hospital Riga First Hospital, Lat...

Deployment of 100 monitors in Riga 1st Hospital: find out how to ensure a safe indoor environment for patients and staff, particularly in high-risk areas and how to reducing energy consumption and improving operational efficiency.
pro.aranet.com/riga-first-h...

Hi Sabrina! I would appreciate being added to this ME & LC community. Ty. 🙂

We want Bluesky to be a great home for journalists, publishers, and creators. Unlike other platforms, we don't de-promote your links. Post all the links you want — Bluesky is a lobby to the open web.

Thank you, Katharina! I'm relieved and comforted seeing you here on Blue Sky. Hopefully, more our Berlin peeps will be here soon. 🫶

Well, AI DOES seem like it's developing into a silicon-based organic AI lifeform! 😁

It's just nuts how many illnesses are doing this here since 2021.
Hepatitis D, England.

#LongCovid + #NHS waiting lists can explain this in #DWPWhitePaper: "The UK is also the only major economy that has seen its employment rate fall over the last five years, which has been largely driven by a significant rise in the number of people out of work due to long-term ill health" #DWP #Work

Economist screenshot of an artificially coloured brightly rainbow bowl of fruit loops. Headline - scientists are learning why ultra-processed foods are bad for you

Ok, this made me laugh. I love that someone had the research question:

"Why are fluorescent neon, artificially coloured, highly- processed rainbow fruit loops produced by big money brands bad for our bods?"

💙 jetzt und sowieso: #unitetofight

Can you spare a minute to help this campaign? Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

Cochrane is stubbornly refusing to withdraw the 2019 review recommending exercise therapy for ME/CFS despite being supplied with ample evidence that it doesn't work and causes harm for #pwME with post exertional malaise.
Please sign the petition:
chng.it/zTZ7vX9Czd