A new study of long-term COVID-19 finds a troubling cluster of symptoms long after infection: tremors, tremors, debilitating pain and mental decline.
Screenwriter Heidi Ferrer died by suicide in the fall after struggling with symptoms for a year. Her husband Nick Guthe spoke to here now about her battle with the disease.
After seeing his wife suffer, Guthe teamed up with the Survivor Corps support network, where he and others collected data from more than 700 patients dealing with the same types of post-COVID symptoms.
Yale cardiologist Harlan Krumholz has studied the long-term health effects of COVID-19. He says he had heard of devastating symptoms, including bodies with an inability to function — but when these patients approached the health care system, they felt their symptoms were rejected or discounted because there were no objective tests available to assess their unique circumstances. reflect.
Through his interactions with patients, Krumholz concluded that together they could conduct the more systematic study needed to describe in detail the syndromes people experienced.
“They wonder, ‘Are they the only ones? Is this even a real thing?’ because so many people are firing them,” he says.
The paper, which has not yet been peer-reviewed, will be submitted Friday to the journal MedRXiv. Krumholz calls the new study “formative work” because it is based on experiences of patients from around the country who had never met each other and yet describe similar experiences.
“They reported having had COVID and then a feeling of… [being] unable to control some of their muscles,” he says. “A lot of them” [are] describing a vibrational sense in their body in different places.”
What is remarkable, he continues, is that most of these individuals had exemplary health before COVID-19. This was not an amplification of previous conditions, but something new and debilitating.
Krumholz says he was surprised by the depth of suffering he found in the study data and “the extent to which people are unraveling their lives through the new set of symptoms they have.”
The similarities between patients’ experiences indicate the need to study underlying mechanisms, he says.
When it comes to the issue of patients being disbelieved by doctors — a common complaint from COVID-19 stretchers — Krumholz says he believes doctors are facing a predicament.
“When we see patients, we try to match them with what we know in the medical literature, we try to match them with what we’ve seen before,” he says. “When people come in with something completely new that doesn’t fit into a pattern, there’s a sense of inadequacy.”
Yet he believes the solution is not to reject, but to listen: as he says, to “be an ally.” He adds that doctors “have to be honest that there’s just no knowledge right now,” as they try to find ways to help patients feel better right now and move forward.
For patients who feel lost, he says, “we should try to help people know that they are not alone, that they are one of many who seem to be experiencing these kinds of symptoms.” He adds that he and others will continue to connect groups of patients so they know they can get support, as well as work with researchers to accelerate participation in studies and learn to identify immune signatures that will help them understand why the immune system of patients respond as they are.
“We know this is difficult,” he says, adding that progress is coming and patients should not give up.
Among those who know and understand the battle firsthand is patient Liza Fisher, who participated in the study. The 38-year-old from Texas had no pre-existing conditions when she was hospitalized with COVID-19 in July 2020.
During her rehabilitation, she says she received full-body vibrations and a disconnection between her brain and her feet.
“I couldn’t walk, my heels couldn’t touch the ground,” she says. “The tremors were very strong, Parkinson’s-like. And then the internal vibrations or vibrations feel like an earthquake or a train track in your body.”
She says that despite treatment, she still experiences external tremors, as well as internal tremors, which are now intermittent.
“I’m handicapped by it,” she says. She has used a wheelchair for a while and now switches between mobility aids, explaining that she had to “learn to walk again”.
She reminds those unfamiliar with tremors that they aren’t limited to shaking hands — and patients can experience incontinence and a variety of other effects, too.
“Internal organs can also vibrate,” she says, leading to throat spasms and difficulty eating.
As for her concern, Fisher says she’s been through everything from discharge to being admitted to a post-COVID clinic in Texas, where dysautonomia was one of her diagnoses. That led to an implant similar to the deep brain stimulators used for Parkinson’s, although hers was implanted in her spine. While it helps with her tremors, it doesn’t completely prevent them.
Fisher says she’s also been diagnosed with what she calls the “trifecta”: POTS, or postural orthostatic tachycardia syndrome, which affects blood flow; MCAS or mast cell activation syndrome, which causes extreme immune responses; and EDS or Ehlers-Danlos syndrome, a connective tissue disorder.
She says MCAS can lead to inability to eat and describes a period last summer when she could go without solid food for nearly two months.
Her suffering, she says, was the catalyst for her decision to participate in the study as a way to collect data and raise awareness among the medical community.
“Because when I was shaking uncontrollably in the hospital and people were saying ‘we have no idea what’s going on with you,’ I went online. And it’s just crazy to think I went to Facebook for answers,” she says. “I don’t want to go to Facebook for my medical advice.”
She says she and others she’s met online are now taking on the role of citizen scientists by “taking our health care into their own hands and bringing this information to providers.”
“I call myself a real-time science project,” she says. “Examine me so that someone else doesn’t have to experience what I’m experiencing.”
Karyn Miller-Medzon produced and edited this interview for broadcast with Todd Mundt. Miller-Medzon adapted it for the web.