COVID long-term effects: Future uncertain for 'long-haulers' struggling with chronic illness

CHICAGO (WLS) -- The COVID crisis was only a few months old when the I-Team first reported on the mysterious so-called "long haulers" last July: patients who get sick with the virus and have yet to fully recover.

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Leading public health officials now recognize the phenomenon as real and extensive and they are working to understand what is a viral aftershock and how the most vulnerable will get long-term help.

No one knows for sure how many people will suffer from post COVID-19 symptoms, but one estimate is predicting millions of people across the globe - about 10% of those once infected with the virus- could face serious and persistent symptoms.

And, a newly-released research letter in JAMA Network Open finds that almost one-third of those with cases of mild COVID still battle symptoms months later.

SEE ALSO | Almost one-third of people with 'mild' COVID-19 still battle symptoms months later, study finds

Eight months after being infected with the virus, Tajma Hodzic has been diagnosed with COVID-induced psoriatic arthritis.

"My entire body and all the joints in my body were inflamed."

In a new study, researchers at Northwestern University were able to captured images of the long-lasting damage.

SEE ALSO | Medical imaging shows how COVID attacks the body

"What we have found is that in some patients with COVID-19, the virus triggers an autoimmune reaction. In other words, the virus tricks the body into attacking itself," said radiologist Dr. Swati Deshmukh.

"We don't know if this is something that is going to be for as long as I live, next year, two years, five years," said Hodzic.

What researchers do know is the virus has the ability to affect just about every organ system in the body. Long-haulers can experience issues with their brain, heart, kidneys or lungs putting them at risk for complications including heart attacks or strokes. They may also suffer cognitive and neurological impairments for months after the initial virus.

Symptoms are wide-ranging and can include difficulty breathing, fatigue, brain fog, loss of taste and smell, severe body aches and shortness of breath.

The need for treatment and answers is growing steadily.

"I wouldn't have necessarily believed it unless I was involved with a clinic and saw the breadth of people that are coming by referral," said Dr. Marc Sala, a Pulmonary Critical Care Specialist at the Northwestern Medicine Comprehensive COVID-19 Center.

The Northwestern center was one of first of its kind in the United States. Specialists work as team to diagnose and then treat what they can of the difficult side effects.

It's where 52-year-old Micheal Turnbow is now receiving care. He says he was a healthy and active paratransit driver for a private ambulance company before catching COVID on March 31, 2020.

The very same day Turnbow went into the hospital last March, his youngest brother died from COVID. Turnbow himself spent months in the hospital and on a ventilator.

"I was told I was unconscious for 42 days," said Turnbow.

His recovery is now a marathon as he works to overcome shortness of breath, brain fog and intermittent body pain. He's making progress - but is still not 100% and is currently unable to return to the job he loves.

"I get very little sleep, you know, like the breathing part of it. You know, when I lay down," he explained.

Turnbow is thankful to be alive and grateful for the help he is now getting. He said he's making progress and wants others suffering to know that there is hope.

"It's a process, you know, it's a process that I just have to go through. I just take it one day at a time, you know, just take it one day at a time," he said.

"We are always in need of more clinical trials to figure out what exactly we are going to be able to do to help people, said Sala.

NorthShore Swedish Hospital on the city's North Side is testing a cardiopulmonary program to help patients experiencing chronic symptoms such as shortness of breath.

Early results among hospital employees with lingering symptoms showing supervised exercise for 12 weeks can improve breathing.

ICU nurse Huda Amorah has been suffering since May with joint pain, fatigue and a mix of cardiac and pulmonary symptoms. She said there was long-lasting inflammation in her body and just trying to climb a short flight of stairs was daunting.

"There was a fear of becoming short of breath again. It's getting better and that's where I see the hope," she said.

Dr. Bruce McNulty, Chief Medical Officer at Swedish, said the demand for pilot programs, such as the one at his hospital, is proof there is growing demand.

"The data is quite convincing so far that it really does help," said McNulty.

In west suburban Maywood, Loyola Medicine just opened a clinic for COVID-19 patients living with long-term neurological and cognitive symptoms. Neurologist Jose Biller is leading the clinic.

"This is a serious health problem and I think science will prevail in refining our understanding and how to better manage these patients," Biller said.

Biller said the Loyola team of doctors will build an evidence-based approach to treating those suffering from post-COVID issues.

"We want to be very transparent here, there is a lot to learn. But, the only way will be with active listening to these patients. In other words, we cannot be rushing. We have to be committed to timely access to active listening. And, certainly develop proper methodology," said Biller.

Dr. Marina Del Rios is the Director of Social Emergency Medicine at UI Health in Chicago. Part of her job involves investigating societal patterns of health inequities. She also focuses on developing solutions to health disparities for vulnerable populations.

She applauds the growing commitment to researching and treating those suffering with uncertain futures, even if all that can be offered is supportive care.

"The first step in fixing a problem is measuring it and right now we don't even know the extent of how big of a problem this is," she said.

Del Rios is working with community service organizations and healthcare providers who are asking state and county officials to consider a surveillance system to help measure how many people are now suffering with post-COVID symptoms.

She says there is growing concern about insurance coverage for this syndrome and whether cutting edge care will be available for all who need it.

"It can't just be specialized centers to take care of these patients we need to make sure we are going to where, where the communities have been hardest hit to ensure that we are taking care of those folks."

The Centers for Disease Control and Prevention is expected to issue new guidelines for the diagnosis and management of people with post-COVID syndrome in the coming weeks.