Long Covid SOS @longcovidsos.bsky.social

UK based charity advocating for those impacted by #LongCovid
Recognition - Research - Rehabilitation

[Adam @ABrokenBattery]

Symptoms are “horrible” and severe cases are a “living nightmare.”

George Monbiot speaks to Natasha Devon on LBC about ME/CFS, it’s long history of being dismissed and psychologised, and the role of governments and insurers.

[Long Covid SOS @longcovidsos.bsky.social @LongCovidSOS]

For many of us living with Long Covid, becoming disabled has meant navigating huge changes and fighting for our rights.
What does Disability Pride mean to you? We’d love to hear your perspective in the comments. 💙
#DisabilityPrideMonth #DisabilityInclusion

[Prof. Akiko Iwasaki @VirusesImmunity]

New preprint by @alex_winnett @S_Tabachnikova et al.! We asked: which cellular immune signals control viral replication in the nose during the first days of SARS-CoV-2 infection — and how do they change with vaccination? With @ismagilovlab (1/)
https://t.co/HIpMpvahDc

[Long Covid SOS @longcovidsos.bsky.social @LongCovidSOS]

What does it mean to recover from Long Covid?
This question has been at the heart of Long Covid conversations for years: Defining recovery is crucial: https://t.co/B6b2KYV9KT

[Long Covid SOS @longcovidsos.bsky.social @LongCovidSOS]

Members of our Board of Trustees have played key roles here: Prof Amitava Banerjee led the trial & Dr Melissa Heightman was a member of the research team
Our Deputy Chair, Kim Horstmanshof, brought lived experience to the forefront
#LongCovidResearch
https://t.co/lFHxVBhVXj

[Long Covid SOS @longcovidsos.bsky.social @LongCovidSOS]

People living with Long Covid may struggle more with the heat.

Check the latest heat alerts from @UKHSA and follow their tips and advice:
https://t.co/SqtDxM5j0K

[Long Covid SOS @longcovidsos.bsky.social @LongCovidSOS]

Good news to wrap up this week 📰
Dr Melissa Heightman has joined our Board of Trustees. She is a Consultant Physician and Clinical Lead for the Post Infection Condition & Post-COVID Service at University College London Hospital
⬇️
https://t.co/kp1zllyK1c

[Long Covid SOS @longcovidsos.bsky.social @LongCovidSOS]

Over 10% of people with SARS-CoV-2 infection develop long COVID. A new study by Keyla de Sá and colleagues, published in Cell, provides evidence for a causal link between autoantibodies and the neurological symptoms of long COVID.
⬇️
https://t.co/TAFNvwBy3I

[Long Covid SOS @longcovidsos.bsky.social @LongCovidSOS]

On the subject of #heat
This BBC article highlights why women may be particularly vulnerable during heatwaves and shares practical tips for staying cool. See: https://t.co/2NjH1BRQtn

[Long Covid SOS @longcovidsos.bsky.social @LongCovidSOS]

#Heatwave and #LongCovid 🌞
For many people with Long Covid, a heatwave is much more than an inconvenience. High temperatures can place extra strain on a body that is already working as hard as it can.
⬇️

[Harry Spoelstra @HarrySpoelstra]

Retinal microvascular alterations consistent with endothelial dysregulation in paediatric post-COVID-19 syndrome: A prospective matched-cohort study

🚨More “hidden” post-COVID damage in children!

Kids with long COVID show blood-vessel damage in their eyes, persistent, with partial & slow reversibility in some, still clearly abnormal months after one infection (retinal scans prove it)!

➡️German study design:
- Prospective matched-cohort; 58 children (7–17 yrs) with paediatric post-COVID-19 syndrome (chronic phase) vs. 58 healthy controls (matched age/sex/BMI),
- Retinal vessel analysis (static: CRAE/CRVE/AVR + dynamic flicker vasoreactivity) at baseline, and ~14-week follow-up,
- Single-infection chronic PCS kids,

➡️Main findings:
- Markedly wider central retinal arterioles (+28.1 μm, p<0.001) and venules (+21.7 μm, p<0.001) + higher AVR (+0.038, p=0.005), independent of BP or confounders,
- Pattern = endothelial dysregulation,

➡️Longitudinal changes:
- No overall group improvement at follow-up,
- Kids with largest baseline venular dilation & reduced flicker response showed greatest recovery,
- Longer follow-up + reduced symptoms → venular narrowing & AVR improvement,

➡️Implication:
- First in-vivo evidence of persistent microvascular alterations in paediatric PCS, detectable non-invasively,

➡️Conclusion (paper):
- “This study provides the first in-vivo evidence of altered retinal microvascular parameters in children and adolescents with PCS… persistent alterations in microvascular regulation several months after SARS-CoV-2 infection… heterogeneous, time-dependent changes… some patterns consistent with partial normalisation.”

‼️So paediatric post-COVID-19 syndrome causes long-lasting endothelial dysfunction in the microvasculature, visible months after infection, confirming a biological, vascular basis for kids’ persistent symptoms (not psychosomatic or transient).

This isn’t “mild” anymore. It never was!

This is measurable microvascular damage and remember: a second COVID infection DOUBLES their risk of Long COVID (Lancet Infect Dis 2026, RR 2.08).
#AvoidSars2 #AvoidReinfections #ChildrenCovid19
https://t.co/ggQ3taMKnf
https://t.co/rR6KTdiHif

[The BMJ @bmj_latest]

Hantavirus outbreak should reset WHO’s default approach to airborne risk
https://t.co/LHfwL4fFRw

[CIDRAP @CIDRAP]

COVID vaccination may protect household members.

A new study finds that vaccinated COVID-19 patients are less likely to infect household members than unvaccinated patients are.

Read more: https://t.co/qKfvvsTTX3

[Rob Wüst @RobWust]

ABSTRACT DEADLINE EXTENDED UNTIL 28TH MAY!
We have received over 125 abstracts related to #LongCOVID and Post-Acute Infection Syndromes (#PAIS) for the ISLC-PAIS Conference 2026 (26-29 August) in Amsterdam. Register at https://t.co/SHD33RV9dR for the largest PAIS conference?!

[Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic]

🚨MCAS: EXCITING NEWS &amp; SURVEY OPPORTUNITY🚨

Dr Larry Afrin &amp; MANY others have been working behind the scenes for years trying to improve the mast cell activation syndrome situation. It has paid off &amp; we now have an International Society for MCAS: https://t.co/N2sBuBbyL3 🧵

[CIDRAP @CIDRAP]

Virus in the vents: Study traces COVID spread in high-rise apartment

According to a study, a COVID-19 outbreak in a residential building in Spain during the early months of the pandemic likely spread through shared bathroom ventilation ducts.

Read more: https://t.co/VZwl5pYy6s

[Daily Mail @DailyMail]

Why Covid could be to blame for the rise in deadly meningitis, according to scientists - and the early symptoms of the disease that patients must act on https://t.co/HhMZfXPAe5

[The BMJ @bmj_latest]

The multinational outbreak of #hantavirus linked to cruise ship travel should prompt the WHO to change its default response to the risk of airborne transmission
https://t.co/ECUSmEJHg8

[Harry Spoelstra @HarrySpoelstra]

Tissue-specific autoantibody signatures reveal immune alterations undetected by routine serology in long COVID

🚨83% of long COVID patients have rogue autoantibodies attacking their own heart, lungs & blood vessels, and every standard blood test misses it completely. VERY INTERESTING!

➡️In a UNIQUE Hungarian cohort of 114 long COVID patients versus 36 pre-pandemic controls, tissue-specific Western blotting detected autoantibodies in 83% of cases, with strong cardiovascular dominance,

➡️Vascular autoreactivity was markedly higher in long COVID (34% vs. 8%, p<0.05), cardiac (54%) and pulmonary (34%) signals trended elevated but did not reach significance( cohort size?),

➡️Autoantibodies were predominantly IgM-skewed, polyreactive (up to 8 bands per patient), and persisted longitudinally (mean 141 days), with new isotypes emerging over time,

➡️Standard ANA testing showed no group differences and zero clinical correlations, rendering it useless for detecting these alterations,

➡️Cardiac autoreactivity associated with hypertension and headache, overall autoreactivity correlated with anosmia/ageusia, female sex, CRP, BMI, creatinine, and troponin levels,

➡️The study used human cardiac, pulmonary, and vascular tissue homogenates.

➡️Findings were independent of routine serology and highlight an under-recognized immune component invisible to current diagnostics.

➡️“This persistent, IgM-skewed profile suggests ongoing immune dysregulation and may reflect a previously underrecognized component of the immunological response in long COVID, highlighting the need for targeted immunodiagnostic approaches beyond routine serology.”

‼️Why this is shocking:
It proves that in 83% of long COVID patients, the immune system is actively producing autoantibodies that directly target their own heart, lung, and especially blood-vessel tissues, yet every standard blood test (ANA HEp-2) comes back normal.
These rogue antibodies are polyreactive, IgM-dominant, persist for months, and keep evolving.
They correlate with real symptoms (anosmia, hypertension, headache) and lab markers of damage (troponin, CRP).

‼️In other words:
The majority of long COVID sufferers have smouldering, organ-specific autoimmunity that is completely invisible to routine diagnostics. Doctors are flying blind while patients’ tissues are quietly under autoimmune attack.

🤔As far as I know, this is the first direct evidence of hidden, cardiovascular-dominant tissue autoimmunity driving the chronic L0ngC0vid phase! #BookMark
#AvoidSars2 #AvoidReinfections
https://t.co/3n4gS7gZVI

[Channel 4 News @Channel4News]

The world's first genomic study into ME, or Myalgic Encephalomyelitis, has been announced.

Researchers are hoping that by building a genetic map of the illness, it will help pave the way for a future diagnostic test and even treatments.

But charities have warned that there is more to do and this must only be the start.