A new study of long COVID-19 finds a disturbing cluster of symptoms well after infection: tremors, vibrations, debilitating pain and mental decline.
Screenwriter Heidi Ferrer died by suicide in the fall after a year-long battle with the symptoms. Her husband Nick Guthe spoke to Here & Now about her battle with the illness.
After watching his wife suffer, Guthe went on to partner with the Survivor Corps support network, where he and others gathered data from more than 700 patients coping with the same types of post-COVID symptoms.
Yale cardiologist Harlan Krumholz has been studying the long-term health impacts of COVID-19. He says he’d been hearing about devastating symptoms including bodies with an inability to function — yet when these patients approached the health care system, they felt their symptoms were being dismissed or discounted because no objective tests were available to reflect their unique conditions.
Through his interactions with patients, Krumholz concluded that together they could undertake the more systematic study needed to detail the syndromes people were experiencing.
“They wonder, ‘Are they the only ones? Is this something real even?’ because so many people are dismissing them,” he says.
The paper, which has not yet been peer-reviewed, is being submitted to the journal MedRXiv on Friday. Krumholz calls the new study “formative work” since it draws on experiences of patients from around the country who had never met yet describe similar experiences.
“They reported having had COVID and subsequently having a sense of [being] unable to control some of their muscles,” he says. “A lot of them [are] describing a vibration sense inside their body in different places.”
What’s notable, he continues, is that most of these individuals had exemplary health prior to COVID-19. This was not an amplification of previous conditions, but something new and debilitating.
Krumholz says he was taken aback by the depth of suffering he found in the study data and “the degree to which people are having their lives unravel from the new set of symptoms they have.”
The similarities between patient experiences point to a need to study underlying mechanisms, he says.
When it comes to the issue of patients not being believed by physicians — a common complaint of COVID-19 long haulers — Krumholz says he believes doctors face 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 entirely new that doesn’t fit a pattern, there’s a sense of inadequacy.”
Still, he believes the solution isn’t to dismiss but to listen: As he says, to “be an ally.” He adds that doctors “have to be honest that there’s just not knowledge here now,” while trying to find ways to help patients feel better in the moment and moving forward.
For patients who feel lost, he says “we need to try to help people know that they’re not alone, that they’re one among many who seem to be experiencing these kinds of symptoms.” He adds that he and others will continue to connect groups of patients so that they know they can get support, but also work with researchers to accelerate enrollment in studies and learn to identify immune signatures that will help them understand why patients’ immune systems are reacting as they are.
“We know this is hard,” he says, adding that progress is coming and that patients should not give up.
Among those who know and understand the struggle first-hand is patient Liza Fisher, who participated in the study. The 38-year-old from Texas had no preexisting conditions when she was hospitalized with COVID-19 in July of 2020.
During her rehab, she says she developed full body tremors and a disconnect between her brain and her feet.
“I wasn’t able to walk, my heels weren’t able to touch the ground,” she says. “The tremors were very heavy, Parkinsonian-like. And then the internal tremors or vibrations feel like an earthquake or a train track within your body.”
She says she still experiences external tremors despite treatment as well as internal tremors, which are now intermittent.
“I am disabled by it,” she says. For a while, she used a wheelchair and is now transitioning between mobility devices, explaining that she “had to re-learn how to walk.”
She reminds those unfamiliar with tremors that they aren’t limited to shaking hands — and patients may also experience incontinence and a variety of other effects.
“Internal organs can tremor too,” she says, leading to throat spasms and difficulty eating.
In terms of her care, Fisher says she’s experienced everything from being dismissed to being welcomed by a post-COVID clinic in Texas where dysautonomia was among her diagnoses. That led to an implant similar to the deep-brain stimulators used for Parkinson’s, though hers was implanted in her spine. Though it helps with her tremors, it does not 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 reactions; and EDS or Ehlers-Danlos syndrome, a connective tissue disorder.
She says that MCAS can result in an inability to eat and describes a period last summer when she went nearly two months without being able to take in solid food.
Her suffering, she says, was the catalyst for her decision to participate in the study as a way to collect data and bring awareness to the medical community.
“Because when I was in the hospital shaking uncontrollably and people were like ‘we have no idea what’s going on with you,’ I went online. And it’s just crazy to think that I went to Facebook for answers,” she says. “I don’t want to be going to Facebook for my medical advice.”
She says that now, she and others she’s met online are assuming the role of citizen-scientists by “taking our health care into our own hands and bringing this information to providers.”
“I call myself a science project in real time,” she says. “Research me so that somebody else doesn’t have to experience what I’m experiencing.”
This article was originally published on WBUR.org.