Long-haul COVID: How grassroots online movement Survivor Corps helps those facing lingering symptoms
For millions of people, long-haul COVID-19 is the brutal aftermath of a COVID infection.
The symptoms can drag on for months, with new, painful symptoms developing. Helped by the grassroots online movement Survivor Corps, those battling long COVID have joined together to help ease the suffering.
Filmmaker Nick Guthe, whose wife, Heidi Ferrer, died by suicide after months of debilitating COVID symptoms, is an advisor to Survivor Corps.
"Somebody described her as sunshine in a dress," Guthe said in an interview.
He said the sunshine emanated from Ferrer -- a Hollywood screenwriter, blogger and doting-mother-turned-advocate.
"Our son had infantile scoliosis and she spent years in online support groups helping new parents navigate that," Guthe said.
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As much light and hope as she offered others, she fell into a darkness she couldn't recover from. Three months ago, the 50-year-old Ferrer took her own life, after a 13-month-battle with long-haul COVID.
"I think she felt she was only going to get worse," Guthe said.
Her symptoms were so severe, said Guthe, her life changed dramatically. Debilitating pain in her feet put an end to her daily 90 minute walks. Gastrointestinal issues, extreme exhaustion and brain fog followed. But Guthe said it was the sudden neurological tremors that kept her from sleeping that were the worst. Ferrer wanted them documented; she is seen experiencing the tremors in a home video.
"She basically had no quality at the end of her life," Guthe said.
Guthe says he's sharing his wife's story in order to spread the word about Survivor Corps, whose mission is to help the rising number of people affected by long COVID.
"When I heard the news about Heidi's death, a part of me broke," said Survivor Corps founder Diana Berrent. "I mean, she was one of our members."
Berrent estimates some 40 million Americans are affected by the lingering and varied symptoms of long COVID.
Survivor Corps has a Facebook page with 170,000 members sharing personal stories, and a website with comprehensive information and resources on long COVID.
"I think that Survivor Corps is, I would say, the leading online organization for people with long COVID -- in terms of the latest breaking news about what treatments are safe, which should be avoided, where to find doctors in your area who have some experience with long COVID," Guthe said.
If you or someone you know needs help, please call the National Suicide Prevention Lifeline at (800) 273-8255 or text "hello" to 741741.
