Long Covid SOS @longcovidsos.bsky.social

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

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

#LONGCOVIDAWARENESSDAY

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1️⃣ Read our open letter
2️⃣ Use our template to write to your MP
3️⃣ Demand funding for #LongCovid research

Six years after the start of the pandemic millions are still living with Long Covid.

On #LCAD26 we ask UK policymakers for…

[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.

[Long Covid Advocacy Ireland @LCAIreland]

Today, on International ME Awareness Day, we stand with the millions of patients across the world effected by this dreadful disease.

We call on the Irish government to finally give Myalgic Encephalomyelitis the recognition it deserves and fund services for patients.

#pwME

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

We have huge respect and gratitude for, and will continue to work alongside, the ME/CFS community.

End of🧵

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

Today is #MECFS Awareness Day 🧵

As a #LongCovid charity, we recognise that a significant proportion of #pwLC - around half, but not all - meet/would meet the ME/CFS diagnostic criteria. We exist to advocate for everyone with LC, including those who also have an ME/CFS diagnosis

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

At the same time, where we do not explicitly reference ME/CFS in all communications or campaigns, this reflects our intention not to overstep into the work of ME-focused organisations or speak on behalf of communities we do not fully represent.

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

We wrote to @rcpsych yesterday asking them to review the platforming of psychologising models of #LongCovid contrary to the significant and growing evidence base demonstrating unequivocally that #pwLC have a biomedical condition.

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

#LongCovid is a serious, multi-system biomedical disease.

That is why we have written to the Royal College of Psychiatrists @rcpsych to express concern about the continued promotion of psychologising approaches to post-viral illness.

https://t.co/hrdoIBiL56