Long Covid Families @longcovidfam.bsky.social · 06/10/20261/10 🔬 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. 132
Long Covid Families @longcovidfam.bsky.social · 02/10/2026What 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 #COVID19youtube.comDiscover RECOVER Presents: Does COVID-19 During Pregnancy Change Your Risk of Long COVID?YouTube video by RECOVER: Researching Covid to Enhance Recovery 133
Long Covid Families @longcovidfam.bsky.social · 01/10/2026We 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 #PediatricLongCOVIDlongcovidfamilies.orgPediatric Long COVID Scientific Board | Long Covid FamiliesMeet the eleven-member Scientific Board guiding Long Covid Families’ work on pediatric Long COVID research, medical care, and educational access. 082
Long Covid Families @longcovidfam.bsky.social · 07/09/2026An 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.comOpinion | Why Is No One Talking About Long COVID?Attention has waned but patients are still suffering 294
Reposted by Long Covid FamiliesLong Covid Families @longcovidfam.bsky.social · 02/09/2026The 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.orgLong COVID at school: Five Things a Doctor's Note Does Not CoverLearn what a doctor's note does not cover when Long COVID at school affects workload, instruction, scheduling, and attendance. 033
Long Covid Families @longcovidfam.bsky.social · 02/09/2026The 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.orgLong COVID at school: Five Things a Doctor's Note Does Not CoverLearn what a doctor's note does not cover when Long COVID at school affects workload, instruction, scheduling, and attendance. 033
Long Covid Families @longcovidfam.bsky.social · 01/09/2026A 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. 152
Long Covid Families @longcovidfam.bsky.social · 27/08/2026A 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.orgThe Cost of Using Sick Children as a WarningExplore the realities of Long COVID stigma in children and how it affects their well-being and social interactions. 085
Long Covid Families @longcovidfam.bsky.social · 25/08/2026Kids 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 053
Long Covid Families @longcovidfam.bsky.social · 19/08/2026NIH 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 #PediatricLongCOVIDlongcovidfamilies.orgHomeSupporting families and raising awareness by providing comprehensive support to families navigating the challenges of pediatric Long Covid. 044
Reposted by Long Covid FamiliesLong Covid Families @longcovidfam.bsky.social · 17/08/2026Clean 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 193
Long Covid Families @longcovidfam.bsky.social · 17/08/2026Clean 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 193
Long Covid Families @longcovidfam.bsky.social · 13/08/2026NIH 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 121
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. 051
Long Covid Families @longcovidfam.bsky.social · 18/06/2026A 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.eduLong-COVID patients more likely to develop heart disease, study findsPeople with long COVID are more likely to experience angina and myocardial infarction, according to a national survey. 052
Long Covid Families @longcovidfam.bsky.social · 17/06/2026TAKE 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 142
Long Covid Families @longcovidfam.bsky.social · 10/06/2026New 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. #PediatricLongCOVIDkennedykrieger.orgResources from the Pediatric Post-COVID-19 Rehabilitation ClinicThe Pediatric Post-COVID-19 Rehabilitation Clinic team at Kennedy Krieger Institute has collected these resources for patients and their families. 053
Long Covid Families @longcovidfam.bsky.social · 02/06/2026A 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.comRising incidence of stroke in survivors of severe COVID-19 - Neurological SciencesNeurological Sciences - 042
Long Covid Families @longcovidfam.bsky.social · 25/05/2026The quiet $8 billion crisis: long COVID costs keep rising as Washington looks away #LongCOVID fortune.com/2026/05/24/l...fortune.comThe quiet $8 billion crisis: long COVID costs keep rising as Washington looks away | FortuneNIH grants canceled, the federal office shuttered, clinics closing — the government is turning its eyes elsewhere as 44 million suffer. 052
Reposted by Long Covid FamiliesLong Covid Families @longcovidfam.bsky.social · 20/05/2026Questions 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.orgLong Covid Families statement on the RECOVER-TLC pediatric LDN trialLearn why the RECOVER TLC pediatric LDN trial was designed, how dosing works, and what current pediatric evidence shows. 034
Long Covid Families @longcovidfam.bsky.social · 22/05/2026Routine 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.comRoutine vaccines may cut dementia risk—experts have startling hypothesis on howVaccines may be training a part of our immune system long thought to be untrainable. 02011
Long Covid Families @longcovidfam.bsky.social · 20/05/2026Questions 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.orgLong Covid Families statement on the RECOVER-TLC pediatric LDN trialLearn why the RECOVER TLC pediatric LDN trial was designed, how dosing works, and what current pediatric evidence shows. 034
Long Covid Families @longcovidfam.bsky.social · 19/05/2026New 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 #PediatricLongCOVIDyoutu.beEp. 6: “Trust Your Intuition”-Dr. Elham Raker on Advocating for Kids & Teens at the Doctor's OfficeYouTube video by Joy Tax Podcast 054
Reposted by Long Covid FamiliesLong Covid Families @longcovidfam.bsky.social · 18/05/2026Long 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. 1159
Long Covid Families @longcovidfam.bsky.social · 18/05/2026Long 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. 1159
Long Covid Families @longcovidfam.bsky.social · 12/05/2026Nearly 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. #LongCovidFamiliesjournals.lww.comLong COVID-19 in Hospitalized and Ambulatory Children in... : The Pediatric Infectious Disease Journalflammatory 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... 032
Long Covid Families @longcovidfam.bsky.social · 11/05/2026Getting 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.orgChildren Need More Than TreatmentChildren Need More Than Treatment Treatment alone is not enough. Kids need screening, clinical guidance, care pathways, and systems prepared to recognize them. 021
Long Covid Families @longcovidfam.bsky.social · 11/05/2026Babies 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.orgYep, a mom's COVID shot during pregnancy protects her baby, a large study findsA 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. 0164
Reposted by Long Covid FamiliesAssociation Covid Long Enfants @associationcle.bsky.social · 10/05/2026Encore 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 pédiatriquenature.comImmune-metabolic trajectories delineate subgroups in paediatric long COVID - Nature CommunicationsHere 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... 144
Reposted by Long Covid FamiliesLong Covid Families @longcovidfam.bsky.social · 05/05/2026Public 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. 163
Long Covid Families @longcovidfam.bsky.social · 05/05/2026Public 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. 163
Reposted by Long Covid FamiliesMark Ungrin @mark-ungrin.bsky.social · 02/05/2026Getting #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 #poliskycovid19.public-inquiry.ukModule 3: The impact of the Covid-19 pandemic on the healthcare systems of the United Kingdom - UK Covid-19 InquiryThe independent public inquiry to examine the Covid-19 pandemic in the UK 18041
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). 151
Reposted by Long Covid FamiliesIt's ME(Jaime) @exceedhergrasp1.bsky.social · 29/04/2026Incredibly 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! 🧵🧪 59132
Long Covid Families @longcovidfam.bsky.social · 29/04/2026So 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... 19935
Long Covid Families @longcovidfam.bsky.social · 27/04/2026POTS 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 195
Long Covid Families @longcovidfam.bsky.social · 25/04/2026Kaylee 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. #LongCOVIDbostonglobe.comLong COVID potentially affects nearly 6 million children in the US. This South Shore teen is one of them. - The Boston GlobeIn children, long COVID symptoms vary by age, possibly because of how the immune system develops. 0148
Reposted by Long Covid FamiliesTimothy Caulfield @caulfieldtim.bsky.social · 21/04/2026COVID-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 57131
Long Covid Families @longcovidfam.bsky.social · 17/04/2026New 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. #LongCOVIDunmc.eduStudy finds long COVID leaves a distinct immune signature in the bloodMedical 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… 097
Reposted by Long Covid Families#MEAction Network @meactnet.bsky.social · 11/04/2026Are 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 5126
Long Covid Families @longcovidfam.bsky.social · 10/04/2026New 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 #LongCOVIDcidrap.umn.eduEye symptoms may signal higher-severity long COVIDDoucefleur / iStock 054
Long Covid Families @longcovidfam.bsky.social · 10/04/2026High 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. #COVIDnature.comCOVID-19 and cardiovascular outcomes in patients with pre-existing hypertension - Journal of Human HypertensionJournal of Human Hypertension - COVID-19 and cardiovascular outcomes in patients with pre-existing hypertension 0148
Reposted by Long Covid FamiliesSolve M.E. @solveme.bsky.social · 09/04/2026Tell 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 01711
Reposted by Long Covid FamiliesLong Covid Families @longcovidfam.bsky.social · 09/04/2026UPDATE: 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 0157
Long Covid Families @longcovidfam.bsky.social · 09/04/2026UPDATE: 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 0157
Reposted by Long Covid FamiliesC.H. Romatowski @chromatowski.bsky.social · 08/04/2026RECOVER-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... 183
Reposted by Long Covid FamiliesLong Covid Families @longcovidfam.bsky.social · 08/04/2026You 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.comDo You Have Unexplained Symptoms? They Might Be Post-ViralWhen symptoms defy an obvious explanation, they could be the result of a past virus. 02011
Long Covid Families @longcovidfam.bsky.social · 08/04/2026You 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.comDo You Have Unexplained Symptoms? They Might Be Post-ViralWhen symptoms defy an obvious explanation, they could be the result of a past virus. 02011
Long Covid Families @longcovidfam.bsky.social · 06/04/2026In 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. #LongCOVIDjns-journal.comAssociation of symptoms of neuropsychological long COVID with imaging and plasma biomarkersSome patients recovered from COVID-19 may experience cognitive and psychological symptoms, such as “brain fog” or neuropsychological long COVID, and its mechanism is unclear. 073
Reposted by Long Covid FamiliesC.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.comSARS-CoV-2 infection heightens the risk of developing HPV-related carcinoma in situ and cancer - Discover OncologyObjective 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... 11411