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Long Covid Families

@longcovidfam.bsky.social
3.8K followers 843 following 675 posts

Advancing research, medical care, and educational access for children with Long COVID. U.S.-based.

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Long Covid Families @longcovidfam.bsky.social · 06/10/2026
1/10 🔬 A 2026 study reviewed records of 122 children with a clinical diagnosis of Mast Cell Activation Syndrome (MCAS). Most had levels of tryptase, a protein made by mast cells, within the lab range used in the paper. The findings raise questions about how MCAS is diagnosed in children.
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Long Covid Families @longcovidfam.bsky.social · 02/10/2026
What does COVID-19 during pregnancy mean for the risk of developing Long COVID? A new Discover RECOVER video looks at this question with Dr. Torri Metz, physician and researcher, and Leah Castro, Community and Caregiver Representative. #LongCOVID #RECOVER #Pregnancy #COVID19
youtube.com
Discover RECOVER Presents: Does COVID-19 During Pregnancy Change Your Risk of Long COVID?
YouTube video by RECOVER: Researching Covid to Enhance Recovery
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Long Covid Families @longcovidfam.bsky.social · 01/10/2026
We are proud to welcome eleven researchers and clinicians, including leaders of pediatric Long COVID clinics and the RECOVER pediatric observational cohort, to our Scientific Board on Pediatric Long COVID. Read more: longcovidfamilies.org/pediatric-lo... #LongCOVID #PediatricLongCOVID
longcovidfamilies.org
Pediatric Long COVID Scientific Board | Long Covid Families
Meet the eleven-member Scientific Board guiding Long Covid Families’ work on pediatric Long COVID research, medical care, and educational access.
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Long Covid Families @longcovidfam.bsky.social · 07/09/2026
An article titled "Why Is No One Talking About Long COVID?" then spends the whole piece not talking about kids with Long COVID. Most people don't know kids can get it at all — because articles like this never say so. Stop leaving kids out of public discourse on Long COVID.
medpagetoday.com
Opinion | Why Is No One Talking About Long COVID?
Attention has waned but patients are still suffering
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Long Covid Families @longcovidfam.bsky.social · 02/09/2026
The doctor's note is the medical record. It is not what decides a child's educational support at school. New from Long Covid Families: longcovidfamilies.org/long-covid-a...
longcovidfamilies.org
Long COVID at school: Five Things a Doctor's Note Does Not Cover
Learn what a doctor's note does not cover when Long COVID at school affects workload, instruction, scheduling, and attendance.
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Long Covid Families @longcovidfam.bsky.social · 02/09/2026
The doctor's note is the medical record. It is not what decides a child's educational support at school. New from Long Covid Families: longcovidfamilies.org/long-covid-a...
longcovidfamilies.org
Long COVID at school: Five Things a Doctor's Note Does Not Cover
Learn what a doctor's note does not cover when Long COVID at school affects workload, instruction, scheduling, and attendance.
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Long Covid Families @longcovidfam.bsky.social · 01/09/2026
A CDC analysis found more than 1 in 10 children who had experienced Long COVID missed more than 30 school days for health reasons in the previous year. School absence is one of the clearest records of what pediatric Long COVID costs a child.
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Long Covid Families @longcovidfam.bsky.social · 27/08/2026
A child got COVID and never got better, and her illness becomes the argument for prevention. Using children as the frightening outcome carries a cost, and it falls on the children who are living it. longcovidfamilies.org/long-covid-s...
longcovidfamilies.org
The Cost of Using Sick Children as a Warning
Explore the realities of Long COVID stigma in children and how it affects their well-being and social interactions.
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Long Covid Families @longcovidfam.bsky.social · 25/08/2026
Kids with Long Covid often land in the nurse's office over and over. A headache. A stomachache. Too dizzy to stand. No one connects them. Pediatric Long Covid has established patterns. Know what they are: longcovidfamilies.org #PediatricLongCOVID
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Long Covid Families @longcovidfam.bsky.social · 19/08/2026
NIH RECOVER Initiative found different Long COVID symptom patterns in school age children and adolescents. That age difference matters when pediatric Long COVID research is interpreted. Go to our website for more information. www.longcovidfamilies.org #PediatricLongCOVID
longcovidfamilies.org
Home
Supporting families and raising awareness by providing comprehensive support to families navigating the challenges of pediatric Long Covid.
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Long Covid Families @longcovidfam.bsky.social · 17/08/2026
Clean air advocates use kids with Long COVIDto prove the danger, then say don't mention COVID in advocacy. Don't use kids when useful and ignore what they need. Naming COVID helps families connect infection to illness. Don't make the word unspeakable. That increases stigma. #CleanAir #LongCOVID
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Long Covid Families @longcovidfam.bsky.social · 17/08/2026
Clean air advocates use kids with Long COVIDto prove the danger, then say don't mention COVID in advocacy. Don't use kids when useful and ignore what they need. Naming COVID helps families connect infection to illness. Don't make the word unspeakable. That increases stigma. #CleanAir #LongCOVID
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Long Covid Families @longcovidfam.bsky.social · 13/08/2026
NIH RECOVER found worsening grades and attention problems among children with Long COVID. Changes in school performance may be one piece of context when families and the professionals involved are trying to under stand a broader change in health. #PediatricLongCOVID
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Long Covid Families @longcovidfam.bsky.social · 03/08/2026
#LongCOVID describes ongoing, recurring, or new symptoms or health problems that last at least three months after a COVID infection. It can happen to any child, even after a mild infection or one with no noticeable symptoms. Some symptoms never go away; others improve and return.
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Long Covid Families @longcovidfam.bsky.social · 18/06/2026
A new study found people with Long COVID were 50% more likely to have had a heart attack and 81% more likely to have chest pain (angina). These are measurable heart problems that deserve real attention. #LongCOVID www.cidrap.umn.edu/covid-19/lon...
cidrap.umn.edu
Long-COVID patients more likely to develop heart disease, study finds
People with long COVID are more likely to experience angina and myocardial infarction, according to a national survey.
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Long Covid Families @longcovidfam.bsky.social · 17/06/2026
TAKE ACTION A proposed federal rule could let the government end research grants before studies finish. For pediatric Long COVID, that means questions go unanswered. The rule is not final. Comments are open through July 13. Take action. Links below. #PediatricLongCOVID #LongCOVID #Research
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Long Covid Families @longcovidfam.bsky.social · 10/06/2026
New resource: Pediatric Long COVID School Navigation Roadmaps. Developed by education specialists, Long COVID experts, neuropsychologists, and families, these roadmaps help parents understand how symptoms may affect school and identify possible accommodations and supports. #PediatricLongCOVID
kennedykrieger.org
Resources from the Pediatric Post-COVID-19 Rehabilitation Clinic
The Pediatric Post-COVID-19 Rehabilitation Clinic team at Kennedy Krieger Institute has collected these resources for patients and their families.
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Long Covid Families @longcovidfam.bsky.social · 02/06/2026
A new paper highlights rising concern about stroke among survivors of severe COVID-19. The article adds to growing evidence that some people face increased stroke risk after infection, particularly following more severe illness. #LongCOVID link.springer.com/article/10.1...
link.springer.com
Rising incidence of stroke in survivors of severe COVID-19 - Neurological Sciences
Neurological Sciences -
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Long Covid Families @longcovidfam.bsky.social · 25/05/2026
The quiet $8 billion crisis: long COVID costs keep rising as Washington looks away #LongCOVID fortune.com/2026/05/24/l...
fortune.com
The quiet $8 billion crisis: long COVID costs keep rising as Washington looks away | Fortune
NIH grants canceled, the federal office shuttered, clinics closing — the government is turning its eyes elsewhere as 44 million suffer.
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Long Covid Families @longcovidfam.bsky.social · 20/05/2026
Questions have been raised about dosing in the RECOVER TLC low dose naltrexone (LDN) trial for children and adolescents with #LongCOVID. Long Covid Families reviewed the pediatric evidence, trial design, and safeguards. Read the full statement. longcovidfamilies.org/recover-tlc-...
longcovidfamilies.org
Long Covid Families statement on the RECOVER-TLC pediatric LDN trial
Learn why the RECOVER TLC pediatric LDN trial was designed, how dosing works, and what current pediatric evidence shows.
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Long Covid Families @longcovidfam.bsky.social · 22/05/2026
Routine vaccines keep showing up in dementia studies, each linked to lower risk. Shingles, flu, RSV, Tdap, pneumococcal, hepatitis. Scientists now think the shots may be training a branch of the immune system long believed to be untrainable, with effects that reach the brain.
arstechnica.com
Routine vaccines may cut dementia risk—experts have startling hypothesis on how
Vaccines may be training a part of our immune system long thought to be untrainable.
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Long Covid Families @longcovidfam.bsky.social · 20/05/2026
Questions have been raised about dosing in the RECOVER TLC low dose naltrexone (LDN) trial for children and adolescents with #LongCOVID. Long Covid Families reviewed the pediatric evidence, trial design, and safeguards. Read the full statement. longcovidfamilies.org/recover-tlc-...
longcovidfamilies.org
Long Covid Families statement on the RECOVER-TLC pediatric LDN trial
Learn why the RECOVER TLC pediatric LDN trial was designed, how dosing works, and what current pediatric evidence shows.
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Long Covid Families @longcovidfam.bsky.social · 19/05/2026
New episode of the Joy Tax Podcast: pediatrician Dr. Elham Raker, who is also raising a child with #LongCOVID, on what it takes to advocate for kids and teens at the doctor's office. #LongCovidFamilies #PediatricLongCOVID
youtu.be
Ep. 6: “Trust Your Intuition”-Dr. Elham Raker on Advocating for Kids & Teens at the Doctor's Office
YouTube video by Joy Tax Podcast
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Long Covid Families @longcovidfam.bsky.social · 18/05/2026
Long COVID is costing children their friendships. A new analysis of the NIH RECOVER pediatric study of nearly 2,000 kids, coauthored by LCF President Megan Carmilani, found children with #LongCOVID were significantly more likely to have diminished peer interactions. Link to article below.
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Long Covid Families @longcovidfam.bsky.social · 18/05/2026
Long COVID is costing children their friendships. A new analysis of the NIH RECOVER pediatric study of nearly 2,000 kids, coauthored by LCF President Megan Carmilani, found children with #LongCOVID were significantly more likely to have diminished peer interactions. Link to article below.
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Long Covid Families @longcovidfam.bsky.social · 12/05/2026
Nearly half the children w/ confirmed C19 in Jamaica's first #pediatricLongCOVID study developed the condition. All were seen at a single hospital. Standard assessments found no impairment. The researchers say the tools were too blunt to detect real harm. Better tools are needed. #LongCovidFamilies
journals.lww.com
Long COVID-19 in Hospitalized and Ambulatory Children in... : The Pediatric Infectious Disease Journal
flammatory syndrome in children and multivariable composite predictors of multisystem inflammatory syndrome in children, vomiting and ageusia. The 47.3% incidence supports the need for improvements in...
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Long Covid Families @longcovidfam.bsky.social · 11/05/2026
Getting a diagnosis is only the beginning. Without the medical infrastructure to support children, treatment cannot reach them. We wrote about what has to be in place before any of this can reach children. #PediatricLongCOVID #LongCovidFamilies longcovidfamilies.org/treatment-ca...
longcovidfamilies.org
Children Need More Than Treatment
Children Need More Than Treatment Treatment alone is not enough. Kids need screening, clinical guidance, care pathways, and systems prepared to recognize them.
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Long Covid Families @longcovidfam.bsky.social · 11/05/2026
Babies under 6 months have some of the highest COVID hospitalization rates, but there’s no COVID vaccine for this age group. COVID vaccination during pregnancy helps pass antibodies to the baby, giving newborns protection in the first months of life. www.npr.org/2026/03/25/n...
npr.org
Yep, a mom's COVID shot during pregnancy protects her baby, a large study finds
A 3-year study published in Pediatrics examined newborns in Norway. It found a clear benefit for the baby when mom gets a COVID vaccination during pregnancy.
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Association Covid Long Enfants @associationcle.bsky.social · 10/05/2026
Encore une étude pédiatrique, n'en déplaise à certains médecins.. " Les trajectoires immuno-métaboliques permettent de définir des sous -groupes chez les enfants atteints de Covid Long pédiatrique" 👉 Une signature métabolique du Covid Long pédiatrique
nature.com
Immune-metabolic trajectories delineate subgroups in paediatric long COVID - Nature Communications
Here the authors show in a longitudinal cohort with up to 3 years follow-up that paediatric long COVID comprises temporally structured immunometabolic subgroups shaped by disease phase, EBV imprinting...
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Long Covid Families @longcovidfam.bsky.social · 05/05/2026
Public health departments shape what clinicians know and what resources reach families. #PediatricLongCOVID has been missing from that infrastructure. Long Covid Families is working to change that.
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Long Covid Families @longcovidfam.bsky.social · 05/05/2026
Public health departments shape what clinicians know and what resources reach families. #PediatricLongCOVID has been missing from that infrastructure. Long Covid Families is working to change that.
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Mark Ungrin @mark-ungrin.bsky.social · 02/05/2026
Getting #longCOVID onto the front page of a major newspaper like this is a huge win, and will leave medicine's management class needing to change its underwear. Between this sort of thing and the UK COVID Inquiry Module 3 report, the coverup is crumbling. Next up: accountability #medsky #polisky
covid19.public-inquiry.uk
Module 3: The impact of the Covid-19 pandemic on the healthcare systems of the United Kingdom - UK Covid-19 Inquiry
The independent public inquiry to examine the Covid-19 pandemic in the UK
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Long Covid Families @longcovidfam.bsky.social · 01/05/2026
🧵Federal civil rights protections for disabled students are quietly eroding. If your child has a 504 plan or IEP, a 2025 Senate HELP Committee minority staff report has information you need to know about what’s happening at the Department of Education’s Office for Civil Rights (OCR).
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 29/04/2026
Incredibly excited to announce a new coauthored publication in Annals of Family Medicine ( @annfammed.bsky.social ): ✨"Underutilization of Pharmacologic Therapies for #MECFS Prior to Evaluation at a Specialty Clinic✨ This study has been chosen as an early-access publication! 🧵🧪
Underuse of Pharmacologic Therapies for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Before Specialist Evaluation | Annals of Family Medicine

"Our retrospective cohort study of 371 patients with an ME/CFS diagnosis, without a co-diagnosis of fibromyalgia, suggests medications used by ME/CFS specialists are being underused by nonspecialists. Furthermore, it shows that this patient population commonly uses supplements.  Given the increasing frequency of ME/CFS diagnosis, especially after COVID-19 infection, efforts should focus on educating clinicians generally on medications that can be used to manage symptoms of the condition."

April 2026 Early Access Latest Research: Stephanie L. Grach, MD, MS et al.
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Long Covid Families @longcovidfam.bsky.social · 29/04/2026
So grateful to see #PediatricLongCOVID on the front page of The Boston Globe. Thank you to 16-year-old Kaylee for her courage in sharing her story, and to reporter Aayushi Datta for telling it well. We were grateful to contribute to the piece.​​​​​​​​​​​​​​​​ www.bostonglobe.com/2026/04/23/m...
Image of front page of Boston Globe lead story long Covid also taking too long kids
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Long Covid Families @longcovidfam.bsky.social · 27/04/2026
POTS shows up often in long COVID. In this study of 467 highly symptomatic long COVID patients, 31% were diagnosed with POTS. They had lower activity levels and reduced walking capacity, even though symptoms looked similar. Screening matters. #LongCOVID
Infographic summarizing a study of 467 highly symptomatic long COVID patients followed for one year. It shows 31% diagnosed with POTS, 27% evaluated but not meeting criteria, and 42% with no POTS symptoms. The POTS group is mostly female with a mean age of 40.

Compared to other groups, those with POTS have lower activity levels, shorter walking distance, and higher heart rates on walking and sit to stand tests. There are no differences in pulmonary function, symptom prevalence, psychiatric illness, or MAPS score.

Conclusion states about one third of symptomatic long COVID patients have POTS, which adds to physical limitation and can be difficult but important to diagnose.
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Long Covid Families @longcovidfam.bsky.social · 25/04/2026
Kaylee was 12 when long COVID hit. Six weeks after a mild infection, she was sleeping 23 hours a day, too weak to climb the stairs to her own bedroom. Now her story, and what families like hers are up against, is in @BostonGlobe. Our President Megan Carmilani spoke with reporters. #LongCOVID
bostonglobe.com
Long COVID potentially affects nearly 6 million children in the US. This South Shore teen is one of them. - The Boston Globe
In children, long COVID symptoms vary by age, possibly because of how the immune system develops.
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Timothy Caulfield @caulfieldtim.bsky.social · 21/04/2026
COVID-19 was still the largest driver of hospitalizations for vaccine-preventable respiratory diseases in 2024 www.cihi.ca/en/priority-... via @cihica.bsky.social #VaccinesWork
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Long Covid Families @longcovidfam.bsky.social · 17/04/2026
New study finds long COVID leaves a distinct immune “fingerprint” in the blood, with persistent inflammatory and neurology-related protein changes months after infection—helping define immune patterns that could guide biomarker development and targeted care. #LongCOVID
unmc.edu
Study finds long COVID leaves a distinct immune signature in the blood
Medical News In a recent study published in the journal Communications Medicine, researchers in Australia and Norway examined how inflammatory and neurological protein levels differ between long co…
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#MEAction Network @meactnet.bsky.social · 11/04/2026
Are you frail & fabulous? Frail & fighting…formidable…funny? We want to hear what your “and” is…so tell us, what is your “f” word? Join us this #MillionsMissing to tell the world we are #FrailAndFurious & so much more! Fight for our healthcare Will you join us? Millionsmissing.org
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Long Covid Families @longcovidfam.bsky.social · 10/04/2026
New eye symptoms after COVID aren’t a minor side effect. A Yale study found they signal more severe long COVID, with higher rates of tremors, dizziness, and financial hardship. #COVID #LongCOVID
cidrap.umn.edu
Eye symptoms may signal higher-severity long COVID
Doucefleur / iStock
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Long Covid Families @longcovidfam.bsky.social · 10/04/2026
High blood pressure plus COVID carries higher long-term heart risk than previously understood. A new study followed 75,000+ hypertensive patients for 4+ years and found elevated rates of heart attack, stroke, and death compared to those who never had COVID. #COVID
nature.com
COVID-19 and cardiovascular outcomes in patients with pre-existing hypertension - Journal of Human Hypertension
Journal of Human Hypertension - COVID-19 and cardiovascular outcomes in patients with pre-existing hypertension
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Solve M.E. @solveme.bsky.social · 09/04/2026
Tell your Senators to sign the Dear Colleague letter in support of ME/CFS research funding. Contact them by April 15th with our easy-to-use action tool here: solvecfs.quorum.us/campaign/157943
Call to action urging Congress to increase funding for ME/CFS research and support CDC and NIH programs in FY27.
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Long Covid Families @longcovidfam.bsky.social · 09/04/2026
UPDATE: They responded. Long Covid Families secured a seat in LA County’s Long COVID workgroup. The pediatric perspective will now be in the room where decisions get made. This is why we exist.​​​​​​​​​​​​​​​​ #PediatricLongCOVID
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Long Covid Families @longcovidfam.bsky.social · 09/04/2026
UPDATE: They responded. Long Covid Families secured a seat in LA County’s Long COVID workgroup. The pediatric perspective will now be in the room where decisions get made. This is why we exist.​​​​​​​​​​​​​​​​ #PediatricLongCOVID
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C.H. Romatowski @chromatowski.bsky.social · 08/04/2026
RECOVER-TLC is taking comments on the proposed protocol for its GLP-1 trial for Long Covid! I hope lots of pwLC as well as clinicians and researchers will send feedback! Get a log-in here (if you don’t have one): forms.cloud.microsoft/pages/respon... Comment here: recover-tlc.org/secure/publi...
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Long Covid Families @longcovidfam.bsky.social · 08/04/2026
You tested negative. Your symptoms faded. But TIME’s new feature shows the virus doesn’t always leave. For millions of people, post-viral illness starts exactly where the “recovery” ends. time.com/article/2026...
time.com
Do You Have Unexplained Symptoms? They Might Be Post-Viral
When symptoms defy an obvious explanation, they could be the result of a past virus.
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Long Covid Families @longcovidfam.bsky.social · 08/04/2026
You tested negative. Your symptoms faded. But TIME’s new feature shows the virus doesn’t always leave. For millions of people, post-viral illness starts exactly where the “recovery” ends. time.com/article/2026...
time.com
Do You Have Unexplained Symptoms? They Might Be Post-Viral
When symptoms defy an obvious explanation, they could be the result of a past virus.
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Long Covid Families @longcovidfam.bsky.social · 06/04/2026
In people with post‑COVID “brain fog,” this study found unusual blood flow in the occipital and parietal lobes and higher blood levels of NfL and GFAP, proteins released when brain cells are stressed. These changes were linked with thinking, anxiety, and depression scores. #LongCOVID
jns-journal.com
Association of symptoms of neuropsychological long COVID with imaging and plasma biomarkers
Some patients recovered from COVID-19 may experience cognitive and psychological symptoms, such as “brain fog” or neuropsychological long COVID, and its mechanism is unclear.
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C.H. Romatowski @chromatowski.bsky.social · 04/04/2026
“Over a 3-year follow-up period, individuals w/SARS-CoV-2 infection had significantly higher risks of developing HPV-related cancers compared to those w/o infection: a 67% increase in cervical cancer, 131% in vaginal cancer, 98% in vulvar cancer, 92% in anal cancer, and 78% in oropharyngeal cancer.”
link.springer.com
SARS-CoV-2 infection heightens the risk of developing HPV-related carcinoma in situ and cancer - Discover Oncology
Objective This study aims to investigate the impact of SARS-CoV-2 infection on HPV-related cancer and carcinoma in situ. Method We utilized data from TriNetX, a database encompassing 106 healthcare or...
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