April 29, 2024
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‘I just miss being myself’: New long COVID clinical trials bring hope to sufferers

Debbie Tumbarello of Inverness says her cat Yoyo has been instrumental in her ongoing battle with long COVID by helping reduce anxiety and stress, but she is hopeful a new clinical trial she is participating in through NorthShore--Edward-Elmhurst Health will provide some relief from the symptoms she's dealt with for more than six months.

Debbie Tumbarello of Inverness says her cat Yoyo has been instrumental in her ongoing battle with long COVID by helping reduce anxiety and stress, but she is hopeful a new clinical trial she is participating in through NorthShore--Edward-Elmhurst Health will provide some relief from the symptoms she's dealt with for more than six months. (Brian Hill)

Of all the memories Debbie Tumbarello has from her February wedding in Las Vegas, contracting COVID-19 is probably among the most enduring.

“My symptoms were very mild and I honestly never thought it was COVID,” said the 55-year-old Inverness resident, who was vaccinated and boosted. “About a week into it I finally broke down and went to the doctor.”

Her doctor told her to rest and ride it out since her symptoms were so benign.

But she is still riding it out: Tumbarello is among the unlucky one in 13 people with COVID infections that researchers say develop into long COVID, a disorder that generally results in ongoing fatigue, brain fog, chronic pain and shortness of breath.

However, Tumbarello is now enrolled in the National Institutes of Health’s new long COVID clinical trials being run through NorthShore--Edward-Elmhurst Health. The goal is to understand, treat and prevent long COVID.

The trials begin next week, and the medical group is seeking other patients to participate. Anyone suffering from long COVID and interested in participating should contact the NorthShore--Edward-Elmhurst Health at IDResearch@northshore.org or call (224) 364-7971.

Debbie Tumbarello of Inverness has had symptoms of long COVID since she was infected following her Las Vegas wedding in February, and she is hopeful a new clinical trial she's participating in through NorthShore--Edward-Elmhurst Health will relieve the fatigue and brain fog she's had since then.

Debbie Tumbarello of Inverness has had symptoms of long COVID since she was infected following her Las Vegas wedding in February, and she is hopeful a new clinical trial she's participating in through NorthShore--Edward-Elmhurst Health will relieve the fatigue and brain fog she's had since then. (Brian Hill)

“We were chosen as one of four priority sites because we had many patients through our long COVID clinics already in place,” said Dr. Nirav Shah, the primary investigator for the trials and NorthShore’s director of infectious disease research. “We were considered a high recruiter.”

In addition to the priority sites, another 70-plus sites nationwide will be participating in the trials.

When the trials were first offered up to the NorthShore--Edward-Elmhurst patients, Shah said they received 50 to 75 responses in less than 24 hours.

“It’s unheard of,” he said. “We’ve never seen this type of activity for a trial, but it’s partially because of the frustration our patients with long COVID have been enduring.”

For Tumbarello, whose cold symptoms cleared while her fatigue remains, it’s a glimmer of hope.

“I’ve tried some medications for the brain fog and done some physical therapy, but really nothing’s worked so far,” Tumbarello lamented. “Sometimes when I try to say something I have to sit there and really think about what I want to say, and make those things come out of my mouth.”

She hopes the trial can turn things around.

“My greatest hope is this trial gets me something that alleviates these symptoms and lets me be myself,” she said. “But ultimately I just hope researchers will be able to find different ways to treat people with long COVID.”

NIH is spending more than $1 billion on long COVID research through a program called RECOVER -- Researching COVID to Enhance Recovery.

There are multiple trials run through the RECOVER initiative focusing on different aspects of long COVID.

One of the trials will focus on treatments, with the first round of patients trying longer regimens of Paxlovid, an antiviral drug given to COVID patients in the early stages of an infection to be taken over five days. The trial will use a longer course to see what effect, if any, the drug has on lingering symptoms. This trial begins next week for NorthShore--Edward-Elmhurst patients.

Another trial involves neurological interventions to help treat brain fog, memory loss and difficulty with problem solving and maintaining focus. Researchers are using a web-based program to study cognition and track any improvements. That’s expected to start in a month or so.

A sleep trial is also available to patients suffering from hypersomnia or excessive daytime sleepiness. The trial will test various interventions for patients who report trouble falling asleep and staying asleep. Sleep trials will begin once the neurological trials have begun.

A fourth trial focuses on symptoms that affect the nervous system, such as shortness of breath, increased heart rates and digestive system problems.

The trials are expected to run for a year or two, Shah said.

The RECOVER initiative has not been without detractors though.

Lauren Stiles, a neurology professor and member of the Long COVID Alliance executive committee, said NIH officials ignored concerns about improper placebos and treatments in the trials.

“I’m very glad to see these clinical trials finally moving forward after so much delay,” Stiles said. “But I have serious concerns about the way some of the trials are designed, not taking into account what we know about long COVID so far, and I’m worried the trials won’t accurately capture changes in symptoms.”

NIH officials said they are aware of the concerns and noted that some protocols may change before trials go live.

“We know that when patients are suffering, we can never move fast enough,” said Dr. Lawrence A. Tabak, acting NIH director. “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.”

For Tumbarello, any change would be welcome.

“The worst thing for me has been giving up on so many things I love because I’m just worn out so much of the time,” she said. “I really miss my interactions with my friends. I can’t golf in my Tuesday night league. I just miss being myself.”

https://www.dailyherald.com/news/20230818/i-just-miss-being-myself-new-long-covid-clinical-trials-bring-hope-to-sufferers

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