July + August 2023 Newsletter
Published July 1, 2023
The UBCoV research team was able to speak with volunteers who have participated in the long COVID registry. We asked volunteers about their experience with long COVID and what has helped them improve.
Here is the story of a 42-year-old female in the Western New York community:
When were you diagnosed with COVID-19, and what was your experience with the initial infection?
“I was 36 weeks pregnant when I contracted COVID in 2021. At 37 weeks, I became so ill I couldn't get off the floor. I was hospitalized for two weeks and placed on oxygen.”
Describe your experience with long COVID.
“I was on oxygen for eight months after returning home from the hospital. Once I was home, I still couldn't smell, had congestion and a dry cough.”
What do you think helped your long COVID improve?
“I kept up on my fluid intake and did my breathing exercises. I had to shift my mindset during recovery. Eventually, my body 'snapped back' to reality.”
Is there anything that you want to share with others who are currently experiencing long COVID?
“Be willing to adapt. Your body may not be the same, but it does get better.”
Thursday, August 31, 2023
4:00 to 5:30 p.m.
Kenmore Mercy Hospital
Emergency Department Conference Room
2950 Elmwood Ave, Kenmore, NY 14217
Catholic Health is hosting free monthly support group meetings to help COVID survivors, loved ones and caregivers navigate their new normal, address concerns, access resources and connect with others to share their similar journeys. This month’s support group will be a conversation with Deborah Miller, OT, who has had success with treating long COVID patients.
To learn more or register for the in-person session, call (716) 447-6211. A call-in virtual option is also available.
The National Institutes of Health announced that it has opened enrollment for phase 2 clinical trials that will evaluate at least four potential treatments for long COVID. These four trials were informed by findings from other RECOVER research over the past two years and focus on several symptoms described by people experiencing long COVID.
RECOVER-VITAL will focus on a treatment targeting SARS-CoV-2 persistence, which could occur if the virus stays in the body and causes the immune system to not function properly or damage the organs.
RECOVER-NEURO will examine accessible interventions for cognitive dysfunction related to long COVID, including brain fog, memory problems and difficulty with attention, thinking clearly and problem solving.
RECOVER-SLEEP will test interventions for changes in sleep patterns or ability to sleep after having COVID-19.
RECOVER-AUTONOMIC will examine interventions to help treat symptoms associated with problems in the autonomic nervous system, which controls a range of bodily functions including heart rate, breathing and digestive system activity.
A fifth trial, focusing on exercise intolerance and fatigue, is under development.
Long COVID is just beginning to be recognized as a public health problem, making it difficult to find providers with expertise. Due to the nature of long COVID and how it varies from person to person, along with the definition of long COVID constantly changing, many barriers exist for long COVID patients seeking care. There is no test that can be used to diagnose long COVID. Like other chronic illnesses that occur after infections, understanding and explaining long COVID can be a challenge, but one patient recommends that primary care providers is a good first step to seeking long COVID care.
If you had COVID-19 and would like to participate, enter the registry and begin filling out the questionnaire.
If you have already participated, feel free to share with others who may be interested.
Contact us: (716) 382 - 1808 / ubcov@buffalo.edu