June 2023 Newsletter

As we continue to learn more from our community about long COVID, we want to hear from registry participants about their continued experiences. The UBCoV Research Team wants to hear from those of you who have previously completed the registry and have improved, or recovered from, long COVID. 

We are seeking volunteers who are willing to have a short discussion with a member of our research team about their long COVID experience and their successes. This will require a scheduled fifteen minute phone call between yourself and the research team. Our goal is to share what we can learn from those who have recovered from long COVID with others in the community who are currently experiencing long COVID.

If you have recovered from long COVID and want to share your experience, please contact us at ubcov@buffalo.edu.

In recent weeks, RECOVER (Researching COVID to Enhance Recovery) shared its primary findings from its study, titled “Development of a Definition of Post-Acute Sequalae of SARS-CoV-2 Infection” which was published in the Journal of American Medical Association (JAMA). This study involved nearly 10,000 adults and examined 37 symptoms to determine which adults may have long COVID. To do this, people who were infected with COVID-19 were compared to people who were COVID-19-uninfected.

There are twelve symptoms that set apart people that were infected versus people that were uninfected, based on a scoring system developed by the study:

Post-exertional malaise, fatigue, brain fog, dizziness, gastrointestinal symptoms, heart palpitations, issues with sexual desire or capacity, change in smell or taste, thirst, chronic cough, chest pain, abnormal movements.

As more data is collected, results will be refined. It is important to note that the above symptoms are not necessarily the most common symptoms, and that some people who have long COVID may not exhibit the twelve symptoms. Symptom scores include severity of symptoms. This study is one of many RECOVER initiatives that are contributing to our growing knowledge of long COVID, its risk factors, and its potential causes.

A new study conducted by the National Institute of Neurological Disorders and Stroke (NINDS) examined the cognitive impact of COVID-19 on people with dementia. Researchers found that having COVID-19 rapidly accelerated the structural and functional brain deterioration in patients with various types of dementia, including Alzheimer’s disease, vascular dementia, Parkinson’s disease, and frontotemporal dementia. This study shows that COVID-19 causes severe neurological complications in these patients and that further research is needed to develop targeted treatments that aim to slow the progression of dementia in those who have had COVID-19.

Women who practice multiple aspects of a healthy lifestyle are about half as likely as peers who don’t to experience long COVID. A Harvard-led study analyzed data from more than 32,000 women to find that those who practiced five or six healthy lifestyle habits – weight control, not smoking, regular exercise, adequate sleep, high-quality diet, and moderate alcohol consumption – were 49% less likely to develop long COVID compared to women who practiced none.

Compared to earlier in the pandemic, new research suggests that about 1 in 10 people appear to suffer long COVID after an omicron infection. Many patients involved in the new research had their first coronavirus infection after the study began, allowing them to report real-time symptoms. Only about 10% experienced long-term symptoms after six months. Dr. Leona Horwitz of NYU Langone Health states that everyone is conducting studies of long COVID, yet “we don’t even know what that means.” Researchers are constantly growing their knowledge of long COVID and discovering more about the condition.

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