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@longcovidsos.bsky.socialOct 9, 2026, 1:29 PM

We have written to the JCVI before about the evidence that vaccination reduces the risk of developing Long Covid. We’ve now written AGAIN following their advice for autumn 2027
2 million #pwlc in the UK.
Yet #LongCovid isn’t mentioned in the latest advice.

www.longcovidsos.org/post/respons...

@tomkindlon.bsky.socialOct 9, 2026, 12:02 AM

From Ireland

Characterizing Host Inflammatory Bioprofiles in People With Postacute Sequelae SARS-CoV-2 Infection (PASC)

onlinelibrary.wiley.com/doi/10.1155/...

Screenshot from latest Science for ME weekly update

#LongCovid #PASC #PwLC #postcovid #postcovid19

Characterizing Host Inflammatory Bioprofiles in People With Postacute Sequelae SARS-CoV-2 Infection (PASC) — Marmont et al "six distinct inflammatory clusters were identified within people with PASC, three of which showed elevated biomarkers related to tissue damage and repair, coagulation, axonal injury, and antiviral immune responses and were associated with component 3 of the complement pathway." Article | Thread
@tomkindlon.bsky.socialOct 8, 2026, 11:51 PM

From the US

Neurocognitive Indices of Long COVID: Dysregulated Engagement of Inhibitory Control and Oscillatory Slowing

www.mdpi.com/2673-4087/7/...

Screenshot from latest Science for ME weekly update

#LongCovid #NeuroPASC #COVIDBrain #PASC #PwLC #postcovid #postcovid19

Neurocognitive Indices of Long COVID: Dysregulated Engagement of Inhibitory Control and Oscillatory Slowing — White et al "Taken together, these findings clearly indicate that even mild PASC is associated with significant alterations in cell signaling, characterized by oscillatory slowing." Article | Thread
@tessamunt.bsky.socialOct 7, 2026, 7:23 PM

👇🏽NB Helpful analysis and advice on the current Covid situation from @buds-disability.bsky.social. Remember that having Covid may bring long-term complications. And the data is that 50% of those with Long Covid develop ME-like symptoms.

So, be wise, be Covid cautious. 😷

#pwME #pwLC

@tomkindlon.bsky.socialOct 6, 2026, 1:29 AM

From Austria

Remnant virus proteins sustain vascular inflammation post coronavirus infection in mice and humans

portlandpress.com/clinsci/arti...

Screenshot from latest Science for ME weekly update

#LongCovid #PASC #PwLC

Remnant virus proteins sustain vascular inflammation post coronavirus infection in mice and humans
@phillyphile215.bsky.socialOct 6, 2026, 12:03 AM

Patient advocates #pwME #pwLC (who are not lawyers) this could be a great opportunity to explore systemic reforms needed for our communities 👇

@crookedneighbor.bsky.socialOct 4, 2026, 9:04 PM

Oh hey this is my dream for #pwLC and #pwME 🏠🛌🐈

@s4me.infoOct 4, 2026, 8:33 PM

Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of Sept. 28 - Oct 4:

s4me.info/threads/news...

#MEcfs #PwME #LongCovid #PwLC

@tomkindlon.bsky.socialOct 2, 2026, 12:41 AM

From Sweden

Booster dose of COVID-19 vaccine and its effectiveness against post COVID-19 condition in individuals with pre-existing immunity

www.thelancet.com/journals/ecl...

Screenshot from Science for ME update

#LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome

Booster dose of COVID-19 vaccine and its effectiveness against post COVID-19 condition in individuals with pre-existing immunity: a sequential propensity score-matched cohort study — Morris et al "we demonstrate that receiving a fourth dose of COVID-19 vaccine is associated with a decreased risk of being diagnosed with post COVID-19 condition during the first 6 months after vaccination, although the incidence rate difference was small." Article | Thread
@tomkindlon.bsky.socialOct 1, 2026, 12:34 AM

From the UK

An Open-Label Feasibility Study of Remdesivir in Long COVID: Results from the ERASE LC Trial

dx.doi.org/10.1093/oxfi...

Screenshot from latest Science for ME weekly update

#LongCovid #PASC #PwLC #postcovid #postcovid19

An Open-Label Feasibility Study of Remdesivir in Long COVID: Results from the ERASE LC Trial — Faghy et al "The mean (SD) distance achieved in the 6MWT was 408 (113) metres at baseline compared to 468 (109) metres post-intervention" "whilst improvements were observed in health-related quality of life, the mean change in EQ-5D-5L index score (0.06) did not exceed the published MCID of 0.11" "Improvements could reflect natural fluctuation in symptom burden, behavioural modification associated with trial participation, or expectation effects." Article | Thread
@meactnet.bsky.socialSep 30, 2026, 5:18 PM

Dealing with Uncertainty and Chronic Illness -A Workshop with Marisa Renee Lee is now available to watch! https://youtu.be/gopHHk_4R4c

We had a meaningful time coming together as a community. Huge thanks to Lee (author of Grief is Love and Waiting for Dawn) for leading this workshop. #pwME #pwLC

Portrait of Marisa Renee Lee smiling with information on her workshop video on managing uncertainty and chronic illness. Photo: Black woman with long hair wearing a deep purple top and smiling. On each side of that photo is a picture of one of her books: Waiting for Dawn and Grief is Love. Text above: Dealing with Uncertainty and Chronic Illness- A workshop with Marisa Renee lee. Video now available!
@cgatist.bsky.socialSep 29, 2026, 10:41 AM

Rob Wust (Amsterdam) shows that #pwME and #pwLC (all with PEM) *perfectly* separate from healthy controls with respect to their muscle microvasculature radius. Lower lumen radius in ME/LC. Needs replication, but this muscle biopsy metric has high diagnostic potential.
#MEcfs #PRIME26 #LongCovid

@meactnet.bsky.socialSep 28, 2026, 9:45 PM

We’ve also connected with state health officials in California, Wisconsin, and Colorado, while pursuing connections in Alaska and Nevada.

Four advocates have shared their lived experiences directly with Medicaid leaders. Thank you, advocates!

#PwME #medicaid #pwLC

@s4me.infoSep 27, 2026, 8:50 PM

Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of Sept. 21 - 27.

s4me.info/threads/news...

#MEcfs #PwME #LongCovid #PwLC

@belasco.bsky.socialSep 25, 2026, 4:41 PM

Today I’m feeling particularly grateful for the #pwME & #pwLC who have the energy to get angry, stand up to & make the community aware of bad studies & bad actors, & even occasionally the ability to physically show up to represent the unseen masses.

@meactnet.bsky.socialSep 25, 2026, 4:19 PM

Have you checked out all the amazing things Pillow Writers has going on lately? So many options! https://pillowwriters.wordpress.com/

They are an international ME/CFS writing community, free and open to anyone with ME/CFS or Long Covid. We are honored to host this amazing group!
#pwME #pwLC

Calendar listing October events for Pillow Writers with dates and times in GMT and PST, featuring sessions like Early Pillows, Standard Pillows, Pillow Crafters, WIMEL, and Softest Pillows. On cream background with fall leaves at the top.
@tomkindlon.bsky.socialSep 25, 2026, 12:34 AM

From the UK

Bidirectional Associations Between Autonomic Function, Sleep Quality, & Daily Fatigue & Energy Symptoms in Long COVID: Longitudinal Digital Health Study

cardio.jmir.org/2026/1/e99630

s4me.info/threads/bidi...

Screenshot from Science for ME update

#LongCovid #PASC #PwLC #postcovid19

Bidirectional Associations Between Autonomic Function, Sleep Quality, and Daily Fatigue and Energy Symptoms in Long COVID: Longitudinal Digital Health Study — Aboagye et al. "sleep duration and REM sleep showed significant within-person (day-to-day) associations with next-day fatigue, and sleep efficiency showed a counterintuitive negative association with next-day energy" Article | Thread
@meactnet.bsky.socialSep 23, 2026, 6:01 PM

Registration is now open for the RECOVER-TLC’s 3rd annual workshop on Nov. 4-5, 2026. Virtual & in person options: https://ow.ly/Jwrt50ZQIou

"This two-day session includes keynote speakers, interactive panels, input from people with lived experience, and networking opportunities."

#MECFS #pwLC

Save the date for RECOVER-TLC's third annual workshop on November 4 and 5, 2026, available in person and virtually. Registration is now open.
@tomkindlon.bsky.socialSep 23, 2026, 12:32 AM

From Germany

Association of mRNA SARS-CoV-2 vaccination with fatigue and functional recovery in patients with post-acute sequelae of COVID-19 (PASC)

www.tandfonline.com/doi/abs/10.1...

Screenshot from latest Science for ME weekly update

#LongCovid #PASC #PwLC #postcovid #postcovid19

Association of mRNA SARS-CoV-2 vaccination with fatigue and functional recovery in patients with post-acute sequelae of COVID-19 (PASC) — Pries et al "Adults with […] PASC and at least two visits 3 to 6 months apart […] were eligible." "The exposure of interest was receipt of an additional SARS-CoV-2 vaccination" "we did not detect a statistically significant worsening of fatigue or exercise capacity" "Both vaccinated and non-vaccinated participants showed gradual improvement over time." Article | Thread
@tomkindlon.bsky.socialSep 22, 2026, 12:40 AM

From Sweden

Longitudinal epigenetic rewiring in lung immune cells in patients with post COVID-19 condition

link.springer.com/article/10.1...

s4me.info/threads/long...

Screenshot from latest Science for ME weekly update

#LongCovid #COVIDLung #PASC #PwLC #postcovid #postcovid19

Longitudinal epigenetic rewiring in lung immune cells in patients with post COVID-19 condition — Nikesjö et al "Distinct DNAm patterns were observed across pulmonary immune cell fractions, with longitudinal changes primarily detected in neutrophil- and macrophage-enriched populations, while alterations were not evident in PBMCs." "This divergence between lung and blood suggests tissue-specific epigenetic remodeling following SARS-CoV-2 infection and underscores the limitations of relying solely on peripheral blood to capture disease-relevant molecular changes in PCC." Article | Thread