The Crisis of Sick Children with Long COVID and ME/CFS
We Need Your Help to Fund Research!
Millions of people worldwide live with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS), and now millions more live with Long COVID. Many of the #millionsmissing with ME/CFS and Long COVID include children. Once healthy and energetic adolescents, their lives have now been put on pause.
One thing is clear: increasing research funding is an urgent priority. At OMF, we are working around the clock and around the globe to solve ME/CFS, long COVID, and related multi-system chronic complex diseases (msCCD). But we need your help. Today, we share the story of two families touched by the devastating effects of Long COVID and ME/CFS — whose hope lies in Open Medicine Foundation supported research.
This fall, as school buses line the streets, it feels as though the pandemic is but a distant memory. Life has resumed full force, and many parents across America rejoice that their children will be back to in-person classrooms. However, for the thousands of families whose children have failed to recover from their initial COVID infection, the back-to-school season is anything but joyous.
Before the pandemic, Aedan Grimshaw was a healthy and active 12-year-old boy who enjoyed playing baseball and spending time with friends. Everything was looking up. “This was a big year for little league baseball,” explained his father.
The family was gearing up for a summer baseball travel tournament. However, despite wearing a mask, Aedan contracted COVID at indoor baseball practice. Overnight, Adeden and his family’s world was changed. It started with a sore throat, and a few days later, he “woke up feeling like the worst he’d ever felt,” recounts his father. “He suddenly had all these symptoms that just didn’t go away.” Fast forward to September, 2022, Aedan still struggles daily with symptoms such as chest tightness, debilitating fatigue, and excruciating leg pain.
Once an athletic and energetic pre-teen, Aedan is now unable to walk long distances, let alone attend school. “He can get around the house and things like that. But if we had to go to the grocery store, walking is out of the question,” explains his mother, Sarah Grimshaw. “This kid is living in pain 24/7.”
One of the most perplexing and frustrating symptoms for the Grimshaws has been post-exertion malaise, defined as worsening symptoms after exertion. For example, when Aedan experiences a brief relief in symptoms and an increase in energy, it will often be followed by a relapse. “He can’t depend on knowing that if he has a good day, he will maintain or continue recovering,” says Sarah. “The good days are a false sense of hope and security.”
Aedan is one of the approximated 10% of children who fail to recover from COVID-19, now falling into the diagnosis of “Long COVID.”
To date, there are no treatments and no cure for Long COVID.
The Grimshaws have seen countless doctors, hoping for answers, treatments, and a cure. Unfortunately, doctor visits have resulted in dead ends, lack of help, and sometimes, invalidation. (A pediatrician even suggested these symptoms may be due to anxiety, leaving the family feeling stuck and hopeless.)
The Grimshaw’s reality is known all too well by families affected by ME/CFS.
Emily Moothart is a parent to not one but two children who have fallen ill with ME/CFS.
Emily’s son Thomas got sick when he was ten years old. “It started with headaches and stomach aches, and we just didn’t know why,” explains Emily. “But we didn’t realize just how badly he was really feeling for a long time.” Once Emily realized the gravity of the situation, she immediately took Thomas to see doctors, only to find there was no clear understanding of what plagued her son. Instead, she found that doctors minimized Thomas’ symptoms, chalking them up to stress from school.
Then, Thomas took a turn for the worse. He began to deal with auditory sensitivity and terrible vertigo. “The balance issues were alarming,” recalls Emily. “He had previously been a martial artist, and suddenly he couldn’t even spin around without dizziness. I knew something was seriously wrong.”
Realizing the medical community had no answers or treatments to help her son, Emily took matters into her own hands. After copious amounts of research online, she realized her son might suffer from ME/CFS, a debilitating chronic disease with no treatments or cure. Finally, she found a doctor who confirmed the diagnosis.
Then, just as the Mootharts felt they were starting to get a handle on Thomas’ condition, the unthinkable happened. Her son Josiah, who was eleven years old, was suddenly hit with extreme fatigue.The bright and ambitious Josiah had just skipped a grade at school. He ran cross country, took part in theater, and was also a martial artist like his brother. Seemingly overnight, he started developing migraines. The next thing the Mootharts knew, Josiah could no longer read or think clearly. In the span of three months, Josiah went from being a super achiever to being bedridden. Josiah, too, had fallen ill with ME/CFS.
For families like the Mootharts and the Grimshaws, the back-to-school season is a devastating reminder of time passing. While millions of children return to classrooms, their children remain in bed, waiting indefinitely for improved health and for science and medicine to catch up with their chronic, complex conditions.
Hope Lies in Research
As they wait, hope lies in nonprofits such as Open Medicine Foundation, which are driving medical education and biomedical research forward at an unprecedented pace.
Open Medicine Foundation is leading research, giving hope to families with children who have been affected by Long COVID and ME/CFS.
In mid-2020, Open Medicine Foundation (OMF) launched a three-year international study following the potential conversion of Long COVID to ME/CFS.
Funded solely by private donors, this study is an unprecedented opportunity to find drug treatments and prevention strategies at an accelerated pace.
As leaders of the largest worldwide nonprofit effort to diagnose, treat, and prevent ME/CFS and related complex diseases, such as Long COVID, OMF knows one thing to be true: If we don’t do the research now, millions will be left behind.
- Learn more about What is Long COVID?
- Learn more about OMF’s Long COVID to ME/CFS study
- Learn more about OMF Scope and Collaborative Research Centers
Your donation today accelerates the discovery of diagnostics, treatments and a cure— helping millions of children with Long COVID and ME/CFS return to the healthy childhoods they deserve.
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