Dr. Melissa Stockwell's #RECOVERTLC presentation highlighted the urgency for pediatric clinical trials. The stage is set for advancing Long COVID research in children. Check out her slides for more insights! #LongCovidKids #LongCovid #NIH #LongCovid #RECOVERTLC #PediatricLongCovid #LongCovidKids #NIH #LongCovidFamilies

📢 Families are reaching out with questions and concerns about the recent @NASEM report on Long-Term Effects from C19, implications for Social Security. Confused about their child's disability status; worried about assumption most kids recover based on weak evidence. We scheduled an appointment with the committee to have the community’s Q’s answered, only to have the NASEM media relations rep cancel, stating the report would not be changed, and oddly, they then directed us to provide feedback on the report that would not be altered.

🧵Let’s talk about this quote from the article.

“‘Long COVID in children, which we didn’t really expect to be a thing,’ said Roberts. The data suggest that most young people who have long COVID eventually recover”

#LongCovid 1. It’s important to reiterate that the infection associated patient community expected long COVID to be a thing because pediatric post viral illness is not new.

#ListenToPatients

🧵”A new comprehensive report highlights the signs and symptoms, and what parents can do to safeguard their kids

#LongCovidKids #LongCovid “Suchitra Rao, MD, a pediatric infectious disease expert at Children’s Hospital Colorado, and co-author of the review explains that occasionally, a person’s immune response to fighting off a virus can be harmful.”

We have been ringing this bell for three years: Long Covid looks different in kids than in adults. We have a large community of caregivers and patients. We have been holding bi-weekly meet ups with caregivers for three years. Kids. Are. Not. Adults. 🧵 Symptoms of LC present differently in kids - especially younger kids. Children have to rely on their parents' observations and translation of symptoms. Then the parents have to convince a doctor to see the symptoms. Layers upon layers of obstacles to getting a diagnosis for kids.

🧵What the doctor will never know—is that the mother of a medically complex, vulnerable child, ALREADY disabled by Covid, sat in the waiting room that morning surrounded by maskless faces in a full trauma response…

1/

#LongCovidKids #LongCovid #MaskUp …as she prayed her child would not be further harmed by an infection acquired at that doctor’s office.

2/

Multiple Hit Theory of Infection with @exceedhergrasp1 of @MEActNet speaking at the Long Covid Families Back to School Conference. Alt text: Following video, simple graphics that read "Repeated exposure to Covid is leading to ME/CFS and Long Covid at the first, second and third infection. There is often a period of apparent recovery from a Covid infection for several months." (cont'd next tweet)

Why the “immunity debt” theory doesn’t hold up:

Kids have not been masking the way the "immunity debt" crowd would like you to believe. Schools in southern/red states largely lifted mask mandates in April/May of 2021. That’s 18 months of “let it rip.” bit.ly/3Fr1w9L Let’s note that even before mask mandates were lifted, masking compliance was spotty in these states. Pep rallies in crowded school gyms were still happening, people were pouring out of restaurants and bars in the south.

"It hides in the body and continues to wreak havoc in the various organ system by driving inflammation and disrupting the immune response."
cleveland.com/news/2022/10/i… Maybe, just maybe, it's the hit to the immune system from a covid infection that is responsible for the explosion of respiratory illnesses? How much of a hit is two, three infections? How many kids have had one, two or three infections?

In June the Census Bureau added questions about Long COVID to the Household Pulse survey.

- est. 16 million Americans (ages 18-65) have Long COVID.

- up to 4 million are out of work due to L.C.

(1) This lines up with a Lancet Study that found 22% of those with Long COVID were unable to work. And an additional 45% had to reduce hours.

This is consistent with data from other countries.

When pundits and officials say we need more data on Long COVID? We have the data. (2)

COVID Reinfection True of False 🧵 I just had COVID, I won’t get it again.

FALSE
Risk of reinfection with the Omicron variant is 5.4 times greater than that of the Delta variant.

Imperial College of London,
December 2021
imperial.ac.uk/news/232698/om…

🧵#LongCovidFam is operated by the disabled for the disabled. #LongCovid is a disability. We are exhausted by the constant DEHUMANIZATION & #ABLEISM of the media and the Biden Admin. Our government is refusing to protect us. So now we turn to our communities. #UrgencyofEquity 1/ To the nondisabled—SEE US. We are your community. We share workplaces, schools, grocery stores, places of worship, and Saturday soccer games. There are millions of us with hopes, dreams, hobbies, pet peeves, and great loves. 2/