Brain fog is one of the worst symptoms of Tumbarello's long Covid, making it difficult for her to even put words together sometimes. — Photos: TNS
At first, Debbie Tumbarello’s wedding was the height of romance – a Valentine’s Day whirlwind straight out of the 1993 romcom Sleepless in Seattle, she said.
Tumbarello, who lives in Inverness, Illinois, United States, married her husband in Las Vegas on Feb 14 (2023).
She left Vegas with memories of a Beatles tribute show and a rooftop ceremony.
However, she also left with Covid-19 – and hasn’t come back to full health since.
“The symptoms of the cold went away, but as the weeks progressed, I just started sleeping,” she said.
“On the weekends, I’d be sleeping 14 to 16 hours a day ... My husband was freaking out. He’s like, this is just not you.”
After hearing about her brain fog, extreme fatigue and joint pain, an infectious disease specialist at NorthShore University Health System in Illinois diagnosed her with long Covid.
Now, Tumbarello has prequalified for a US study aiming to learn more about long Covid, and design treatment and prevention programmes.
Sponsored by the US National Institutes of Health (NIH), the study will test up to 11 combinations of treatments for long Covid.
Organisers are not looking for a cure for Covid.
They aim to learn why long Covid happens, both to stop future cases and to help those already experiencing debilitating symptoms.
“NIH is committed to a highly coordinated and scientifically rigorous approach to find treatments that will provide relief for the millions of people living with long Covid,” said acting NIH director Dr Lawrence Tabak.
Tackling multiple aspects
NorthShore-Edward-Elmhurst Health has become one of the study’s four primary sites, and NorthShore doctors are actively recruiting participants.
US NIH researchers picked primary sites based on proximity to communities heavily affected by long Covid.
Access to relevant medical equipment, the expertise of nearby doctors and strong track records of diversity in local clinical trials also played a role.
The first phase of the study, which included 24,000 patients, involved observing people with long Covid to see when and why symptoms develop.
Phase two, now starting at NorthShore, includes three clinical trials targeting cognitive dysfunction, sleep issues and viral particles.
Up to 40,000 people could participate in the study overall; some for up to four years.
The entire initiative will receive US$1.15 billion (RM5.38 billion) in US Congressional funding over four years, US$811 million (RM3,797 million) of which has already been allocated.
Some patients will receive either extended doses of Paxlovid or a placebo in the Recover-Vital clinical trial, meant to eliminate the lingering presence of SARS-CoV-2 viral matter in the body.
Paxlovid is already used to treat some short-term Covid-19 cases, but this trial will test whether the drug could also keep the virus from causing long-term damage to organs and the immune system.
The Recover-Neuro section of the trials will address brain fog, memory problems and other neurological symptoms of long Covid.
Some participants will use online programmes meant to boost cognitive and executive functioning.
Others will undergo transcranial stimulation, where small electric currents are sent through the brain to improve blood flow.
The third section of the trials, Recover-Sleep, will compare two different medications that could be used to stop excessive daytime sleepiness.
Other proven interventions for problems falling or staying asleep will be tested in groups.
A fourth section, Recover-Autonomic, will take place at other sites.
The trial will test different combinations of medications to help symptoms related to the autonomic nervous system, controlling automatic processes in the body.
A disabling condition
Cates is so debilitated from long Covid that she says she can't do one-hundredth of what she used to be able to accomplish in a day.
The study’s first patient, Jobi Cates, started in the Recover-Vital clinical trial last week (early September 2023).
The 52-year-old contracted Covid-19 for the first time in March (2023).
What felt like a bad cold developed into a “heavy feeling” that reminded her of pneumonia.
Within a month, her heart was racing constantly, an early sign of long Covid.
Cates took an extended leave from her job as executive director at a criminal justice non-profit organisation.
However, “radical rest” was only so effective against what was eventually diagnosed as long Covid.
She was also diagnosed with postural tachycardia syndrome (PoTS), an autonomic nervous system disease causing heart, hormone and blood flow issues.
In the early months of long Covid, Cates didn’t leave her apartment.
She couldn’t drive, prepare meals, sit upright at her computer or talk on the phone for more than 20 minutes.
While heart medication has helped, her walks are limited to a block or two and her social contact is severely restricted.
“My life as I knew it before is over,” she said.
“Hopefully, I get some of it back someday.”
Long Covid can be difficult to identify, as symptoms vary widely, said the Edward-Elmhurst sites' primary investigator Dr Nirav Shahat.
Many patients are “essentially disabled” by the time they are diagnosed, and remedies are sparse.
Dr Shah, an infectious disease specialist at NorthShore, hopes the Recover trials at Edward-Elmhurst will bring some long-awaited relief for Chicagoland patients.
“Our system is really excited,” he said, “especially the clinicians who have been taking care of long Covid patients.”
More recent strains of Covid-19 seem to lead to long Covid less frequently, he said.
Both Cates and Tumbarello were fully vaccinated before contracting Covid-19 this year (2023).
Desperate for treatment
The researchers are actively recruiting patients and this “made a huge difference”, Cates said.
“Trying to get into (a long Covid clinic or study) is a task that I don’t necessarily have the energy for at this point,” she said.
“I don’t have the energy to do even 1/100th of what I used to do in a day.”
The team initially reached out to 2,000 potential long Covid patients in the Chicago area, Dr Shah said.
Between 50 and 75 people responded.
“I think a lot of people are really desperate for treatment options in a space where there hasn’t been many,” he said.
Prequalifying for the study mostly involved speaking with the study team about her symptoms, Tumbarello said.
For her, brain fog has been a particular issue.
“Some days, I just have trouble putting the words together,” she said.
“If you haven’t had Covid, there’s no way to describe it.”
Tumbarello has been on medical leave from her job as an executive assistant since June (2023).
Her brain fog makes it difficult to get out of bed in the morning, she said, much less manage multimillion-dollar contracts.
Cates too experiences debilitating brain fog.
Her worst days, she said, remind her of when one of her parents was in the early stages of Alzheimer’s disease.
“When I do get fatigued, and sometimes even when I’m not, my brain gets very foggy and cloudy, so I can’t always think or talk the way I used to,” she said.
However, she adds: “As much as I’ve lost from this, I’m still hopeful.
“All around Chicago, there are good people who, once they find out about long Covid, do whatever they can to try to help.” – By Ilana Arougheti/Chicago Tribune/Tribune News Service
