Bill Oddy's life in Youngstown, New York before 2023 was straightforward: the husband and father of two worked at Canon Design as a CAD technician. He was a volunteer firefighter and previously served on his local town board.
However, his life changed when a COVID infection in 2023 led to persistent symptoms. A study published last week in JAMA Open suggests that one in six people who get COVID develop a post-infection condition known as Long COVID. Oddy ended up being the one in six.
Oddy was ultimately able to access diagnosis and interdisciplinary care through University at Buffalo's Long COVID Recovery Center.
However, once that center lost funding after treating 300 patients over 18 months, UB providers faced a dilemma: they had learned more about diagnosing and treating Long COVID, but physicians outside the center hadn't.
This week on the Disabilities Beat, we explore a new initiative from UB: the WNY Long COVID Resource Center. So far, UB experts have developed an interdisciplinary, free online training course for providers in Western New York and beyond.
The course covers not only diagnosis and treatment of Long COVID as a disability, but treating Long COVID within social work, physical therapy, epidemiology, occupational therapy, and mental health. Integrated throughout the program are patient voices, including Oddy's, recognizing their experiences as well as the role of patient self-advocacy.
TRANSCRIPT
This is a rush transcript created by a contractor and may be updated over time to be more accurate.
Emyle Watkins:
Hi, I'm Emyle Watkins and this is the Disabilities Beat.
Bill Oddy's life in Youngstown, New York before 2023 was straightforward: the husband and father of two worked at Canon Design as a CAD technician. He was a volunteer firefighter and previously served on his local town board.
Bill Oddy:
Hobbies, didn't really have any. I worked and that's about it. I mowed the lawn.
Emyle Watkins:
But life changed with what he jokingly calls a "Christmas present" in December of 2023.
Bill Oddy:
When we were helping put together meals for homeless people in Niagara Falls and we were just in a gym and it's the only place we were together with a bunch of other people.
Emyle Watkins:
Oddy says this was the time he let his guard down and amidst taking several precautions. His initial infection was mild and he was up-to-date on his COVID shots. After he recovered from the initial infection, he started to realize his life wasn't the same.
Bill Oddy:
Just creeped up on me afterwards, the exhaustion and the brain fog. Later on, I got tremors and I got headaches.
Emyle Watkins:
A study published last week in JAMA Open suggests that one in six people who get COVID develop a post-infection condition known as long COVID. Oddy ended up being the one in six.
Dr. Jenny Abeles:
There are over 200 symptoms that could define long COVID.
Emyle Watkins:
Dr. Jenny Abeles, an internist and pediatrician, is an associate professor at the University at Buffalo Jacobs School of Medicine.
Dr. Jenny Abeles:
A lot of clinicians don't even know how to diagnose it.
Emyle Watkins:
Sadly, that ended up being Oddy's experience. His regular doctor was out sick when he came in with persistent symptoms, which would ultimately lead to an early retirement. He saw a nurse practitioner who didn't recognize his symptoms for what they could be.
Bill Oddy:
[She] was just, "Treat it like a cold." So that's when I started looking as to what else can I do?
Emyle Watkins:
That led Oddy to UB's Long COVID Recovery Center where he was able to get diagnosed and connected to interdisciplinary care.
Dr. Sanjay Sethi:
The problem is lack of a single easy diagnostic test.
Emyle Watkins:
Dr. Sanjay Sethi is the chief of the Division of Pulmonary, Critical Care and Sleep Medicine at UBMD and a professor and senior associate dean at UB's medical school.
Dr. Sanjay Sethi:
So that's why we have to use, and that's why patients, many a time, it's a subjective diagnosis. It's based on what patients tell us.
Emyle Watkins:
But Dr. Abeles and Dr. Sethi, who both worked with the recovery center, faced a new challenge when the center lost funding after 18 months. They had learned more about diagnosing and treating long COVID, but physicians outside the center hadn't.
Dr. Jenny Abeles:
So we thought, well, what would be better than to provide the education to providers in our community so they could feel comfortable diagnosing their patients with Long COVID?
Emyle Watkins:
This led to the creation of the new WNY Long COVID Resource Center, which includes an interdisciplinary, free online training course for providers. It covers not only diagnosis and treatment of long COVID as a disability, but treating Long COVID within social work, physical therapy, epidemiology, occupational therapy, and mental health. Oddy was interviewed for the series, sharing his experience with long COVID.
Dr. Jenny Abeles:
We needed providers watching these videos to understand the impact of what they say and what they do and how that feels to a person coming to them looking for help.
Emyle Watkins:
Oddy believes the series will help more people access support sooner.
Bill Oddy:
I would like to think that if that had been done sooner, maybe I wouldn't be where I am.
Emyle Watkins:
Oddy hopes other people who have or believe they have Long COVID will open up to their doctors and advocate for themselves.
Bill Oddy:
Don't hold back on your symptoms, and I think that holds true with people around you and people you work with. It's not something to be ashamed of. It's not something you've done.
Emyle Watkins:
Dr. Sethi and Dr. Abeles say they hope this series changes providers' approaches to treating what is a very complicated spectrum of experiences.
Dr. Jenny Abeles:
Be open-minded and say, "Okay, we know the body works like this. This is the impact you're having from your long COVID. What would be the natural progression of what I could try to do to assist you in improving that?"
Emyle Watkins:
As for life nowadays, Oddy is looking forward to his wife retiring soon. He's still working with his doctors at UBMD to improve his symptoms.
Bill Oddy:
Who knows what tomorrow will bring, so you got to stay flexible in right now. It's just hoping to get the lawn cut. It's too high [laughs].
Emyle Watkins:
For more on this story, visit our website at btpm.org. I'm Emyle Watkins. Thanks for listening.
