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Suffering debilitating symptoms, COVID-19 long-haulers plea for support

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Posted at 4:11 PM, Jul 23, 2021
and last updated 2021-07-23 16:14:09-04

LOS ANGELES — When Nick Guthe shared his story nearly two months ago, he didn’t expect it would be heard around the world.

His wife, Heidi Ferrer, died by suicide after suffering more than a year from long-haul COVID-19 symptoms. A writer, Ferrer documented her journey online.

“The most haunting thing she said to me was, I feel like a robot that’s malfunctioning. It's like all my systems are malfunctioning," said Guthe.

Long-haulers experience new or lingering symptoms after recovering from the virus. Recent studies reveal anywhere from 10-30% of COVID-19 patients develop long-haul symptoms lasting for months, even if they had mild cases.

"She kept voluminous daily notes in her phone about her symptoms and her condition," said Guthe. "She almost, kind of, wrote us a road map for looking at somebody's life over a year with long-haul COVID.”

Among Ferrer's symptoms: nerve pain, digestive issues, diarrhea, joint pain, weakness, and exhaustion.

"Taking a few steps, her heart would go from 80 to 130 beats in about 20 seconds," said Guthe. “She was bedridden. She couldn't eat normal food that she enjoyed. She couldn't walk more than a few steps, she couldn't sleep, she couldn't read a book. What's left?”

Guthe says the medical community dismissed his wife's symptoms for months.

“She wasn’t depressed. She was brought to do this by being physically broken down, piece by piece, by long-haul COVID for over a year. She was in excruciating physical pain every day," said Guthe.

After sharing her obituary online, Ferrer's story went viral. Hundreds of people living with long-haul symptoms have since reached out to Guthe to share their stories.

"It mirrored what I’ve experienced and what countless other people have," said Richard, a long-haul sufferer. “I have been admitted to the hospital, different hospitals, a total of probably more than three months. I’ve been to the emergency room probably 40 times."

Richard, who didn't want to share his last name, says he contracted the virus in March 2020 while living in New York.

"A lot of the COVID-related sequelae that you read about, I've lived through that. The neurological stuff is no joke. I've had all of that, and I still have some of it. The digestive stuff, the food intolerance, is very, very difficult to deal with. Headaches, all of that stuff, is very real."

While equipped with a good team of doctors now, he still has few answers.

“One day, you might be OK, and then, you might be unable to get out of bed for the next three or four days," said Richard. “It’s absolutely debilitating.”

“There are a lot of people out there like her, who are literally disabled," said Guthe. "They cannot work, cannot function, cannot take care of themselves. And they’re desperate, desperate for help. And they feel like nobody is paying attention."

Retired Northwestern professor and psychologist Dr. Mark Reinecke is treating COVID long-haul patients.

Now that the country has made progress addressing the physical components of the disease, he says more emphasis is needed on the mental health consequences.

“We could see, for lack of a better term, we could see the storm clouds building, and we've known this from the very beginning," said Dr. Reinecke.

Dr. Reinecke points out there's a lot of research underway, but it's scattered. He proposed several solutions in a recent op-ed:

  • Create a national COVID-19 response office to coordinate the development of evidence-based programs to address the social and emotional consequences of the pandemic
  • Open community-based centers to treat chronic COVID conditions
  • Train medical professionals in evidence-based care of psychological and social consequences of COVID-19
  • Provide each patient with chronic COVID-19, PTSD or multisystem inflammatory syndrome in children with a trained psychologist or mental health provider

He says now is the time to address the psychic pain COVID-19 is inflicting on millions of Americans.

"There is a path forward," said Dr. Reinecke. “One is the installation of hope, a sense of a positive future that is out there. The notion that it is, it may be different than the way your life has been in the past, but it can be positive."

"We don't leave people on the battlefield in this country, we don't leave our soldiers behind," said Guthe. "If this is a war on COVID, what are we doing for these people?”

If you or someone you know needs mental health help or is considering suicide, call the national suicide prevention hotline at 800-273-8255.