Letter to the Senate HELP Committee (Moonshot)

“We are contacting you regarding Chairman Sanders’ draft legislative proposal to address the Long Covid crisis. On behalf of a community of almost 15,000 active members, we write in support of Chairman Sanders’ proposal of allocating $1 billion annually to the NIH for Long COVID research over the next decade, and we urge you to dedicate an equitable portion of this funding to pediatric Long Covid research. “

Press Release: Long Covid Families Applauds new proposed legislation for $10 billion Moonshot to fund Long COVID research

 Long Covid Families enthusiastically applauds Senator Bernie Sanders for the draft legislative proposal for a Long COVID Moonshot—$10 billion in research funding over the next 10 years. With an estimated 24 million Americans affected by Long Covid, including 5.8 million children, funding to better understand Long Covid is urgently needed. 

Press Release:

Long Covid Families responds to the new guidance released by the CDC on March 1, 2024 recommending that people with COVID-19 no longer need to isolate for five days after symptoms end. “These new guidelines will put our children at increased risk of Covid infection, and make it even harder for parents to keep children with Covid home from school.”

Press Release: Long Covid Families Joins Calls for COVID-19 Accountability Task Force

The burden of the pandemic on children has been unprecedented in terms of illness, teacher shortages, medication shortages, and disability due to COVID-19. And a quarter of a million children are enduring the ongoing trauma of being orphaned by the pandemic. Our nation’s children have been burdened – but also forgotten –  when it comes to the impact of the pandemic. We owe it to them to fully interrogate the U.S. Government’s pandemic policies and response and account for losses and failures that the country’s children will be grappling with for their lifetime.

Press Release: Treat Long COVID Act

We will not have accurate data on how many children are impacted by Long COVID for years – possibly decades – due to lags in pediatric research and obstacles to pediatric diagnoses. But we know that children are increasingly joining the Long COVID community and it is impacting their access to education, access to healthcare, and impeding their families’ employment due to the burden on caregivers. 

The Nations Health

Featuring LCF Board Member Liza Fisher

Diagnosed in July 2020 with COVID-19, Fisher spent three months bouncing between the hospital and rehabilitation facilities in an effort to recover. Except she never really recovered.

“Everyone said, ‘You’re young and healthy, you should get over it in two weeks, and I just didn’t,” said Fisher, who continues to struggle with brain fog, tremors and vibrating sensations inside her body.

Along with tens of millions of Americans, Fisher suffers from “long COVID,” a poorly defined and baffling spectrum of health issues that can linger or develop four or more weeks after initial infection with COVID-19. .

SF Chronicle: The 10-year-old’s symptoms passed — but then worse ones set in. Her case shows how little we know about long COVID in kids

“Dr. Geraldina Lionetti, a pediatric rheumatologist at UCSF Benioff Children’s Hospitals, said she wasn’t comfortable saying whether long COVID in children was real because there may be other potential causes for their symptoms — including physical and psychological aftereffects of the pandemic itself.

“It’s very difficult to distinguish between symptoms of long COVID and being on lockdown,” Lionetti said.

Megan Carmilani, who founded a support group called Long COVID Families, used to find such skepticism infuriating but has made peace with it. “To me, all the doctor is saying is, ‘I don’t have the knowledge or skills to help,’” she said.

The Washington Post: How Long Covid Is Accelerating A Revolution in Medical Research

Featuring LCF Board member Liza Fisher

“Fisher’s experience — and that of others like her — is advancing a revolution in research not just for covid but also many other conditions, experts say. Patients, who have typically been only subjects in the research process, are becoming partners in it.”

Collaboration with The People’s CDC: A Call for More Responsibility in Pediatric Long Covid Research and Communication

Authors: LCF Board Members Gretchen Kelly, Megan Carmilani and Megan Fitzgerald, PhD of Patient Led Research

“Public communication and analysis of studies needs to be through the lens and with an understanding of post-infectious syndromes. In other words, studies need to be done in consultation with those who have long COVID or other post-infectious syndromes. To do so without input from the community and those who study and treat syndromes is to forgo a baseline understanding of what to look for and how to accurately assess the illness.“

Local: The Spectrum News

Long Covid Families member Diane Sheehan tells her Long Covid Story to spectrum news.

Long Covid Awareness

Long Haulers are tired. Because children are also suffering. Because people won’t mask for our safety. Because WE NEED RESOURCES.

Local: WZZM

Long Covid Families members discuss with local news the effects that Long Covid has had on their family.

Katie Couric Podcast

Long Covid Families Board Member, Liza Fisher discusses her difficult Long Covid journey with Katie Couric on her podcast, NEXT QUESTION.

Local: WCNC

Long Covid Families Founder, Megan Carmilani, talks to local news about her journey with Post-Viral Illness, the effects of Long Covid, and The CARE for Long Covid Act.

Salon: Tremors and “internal vibrations”: Long Covid patients are reporting Parkinson’s-like symptoms

Featuring LCF Board Member Liza Fisher

“I developed severe debilitating tremors and the internal vibrations that people speak of, and my tremors were very heavy Parkinsonian-like, they were my entire body,” Fisher told Salon. “I had lost my ability to walk.”

Over the last 17 months, Fisher has been looking for answers. Recently, doctors implanted a neuromodulation device in her spine, which has reduced the tremors.

Up to 10 percent of those who contract COVID-19 have long-term symptoms long after the virus has cleared their body, according to University of Alabama researchers. 

Watch: History of Post-Viral Illness

A compilation of sound and images for nonprofit, educational purposes.

NPR:WBUR Here and Now

Long Covid Families Board Member, Liza Fisher shared her Long Covid journey with Salon.