April 2023 Newsletter

A photo showing a woman waking at 3:41 a.m.

Published April 1, 2023

Sleep Troubles Common for Folks With Long COVID


According to new research from the Cleveland Clinic in Ohio, about 41% of individuals with long COVID report moderate to severe sleep issues. Based on data from 962 long COVID patients, risk factors for lingering sleep disturbances were found to include race, hospitalization for COVID-19, and greater severity of anxiety and fatigue.

“Sleep difficulties and fatigue are widely reported by people with long COVID, but little is known about the severity and factors associated with these symptoms,” said lead author Cinthya Pena Orbea, MD, assistant professor of medicine at Cleveland Clinic’s Sleep Disorders Center.

Other findings include:

  • 67% reported moderate to severe fatigue
  • 22% reported severe fatigue
  • 58% reported normal to mild sleep disturbances

Q: What does the UBCoV Long COVID Registry show?

The most up-to-date data from UBCoV shows similar results to Cleveland Clinic's new research. Based on 663 long COVID patients, our data shows:

  • 52% reported sleep disturbance 
  • 27% reported sleep disturbance for 6 months or more following COVID-19 infection

Managing Your Care

For many long COVID patients, the care needed to manage their chronic illness has left them in medical debt. It’s unclear how many patients are being denied coverage, but recent findings estimate that individual medical costs of long COVID come to roughly $9,000 a year.

Part of the problem, according to experts, is the ambiguity of long COVID and its symptoms. This leaves insurance companies denying claims for care because they don’t deem it as a “medical necessity.” 

Patients can improve their chances of insurance approving their claims by having a plan before entering the doctor’s office, using the following steps:

  1. Ask how much the care will cost.
  2. Ask the doctor to explain clearly on insurance paperwork exactly why the care was needed.
  3. Understand your insurance’s appeal process, which allows patients to challenge the provider’s verdict.
A calculator rests near a stethoscope.

Experimental Treatment Opportunity

A research study led by Thomas J. Guttuso Jr., MD, at UBMD Neurology in Williamsville, NY is now open for enrollment. You may be eligible for this opportunity if you meet the following criteria:

  • 18 to 80 years old
  • Tested positive for COVID-19
  • Experiencing fatigue and/or brain fog for more than four weeks post COVID-19 infection
  • Has not used tobacco or marijuana products for more than six months
  • Not pregnant or planning to get pregnant over the next five weeks
  • Live within a two-hour drive to Buffalo

If you are interested, call Guttuso at (716) 829-5454 for more information.

Long COVID in the News


New findings suggest that the presence of multiple nutritional deficiencies (MND) can lead to severe COVID-19 infections, especially for those with zinc and selenium deficiencies. It’s estimated that 5.7% of Americans lack two or more essential nutrients with stress being a leading cause of many deficiencies. People at higher risk of infection due to multiple nutritional deficiencies and high stress levels are also more likely to have long-term COVID. It’s important to note that these findings show that deficiencies in other essential nutrients, aside from zinc and selenium, can also lead to higher risks for individuals.

Time Magazine

Sue Sisley, MD, who researches psilocybin, a psychedelic, at Scottsdale Research Institute in Phoenix became interested in using psychedelics as long COVID remedies after patients told her they were trying them on their own and seeing improvements. She believes that psilocybin may help long COVID patients by stimulating new neuronal connections and tissue growth in the brain and reducing inflammation in the body. She is seeking research funding to support her hypotheses. The existing research — not in humans — shows that psychedelic drugs have anti-inflammatory effects in rodents. Despite positive reports about long COVID and psychedelics, they have not yet proven effective; however, this article in Time discusses the potential of these substances as a treatment for long COVID, and other conditions. 

Register Today

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.

Additional Questions?

Contact us: (716) 382 - 1808 / ubcov@buffalo.edu