Dear Patient Attendee – 

Thank you for attending the most recent Ask the Mito Doc webcast.  Many asked if COVID-19 vaccine is safe for my specific mitochondrial disease (Leighs, MELAS, CPEO, MERRF, and so on).  The Mitochondrial Medicine Society (MMS) statement below addresses such questions – please note the bolded sentences.  Without knowing your particular case, the MMS or the UMDF Ask the Mito Doc panelists cannot give you a direct recommendation.  However, the responses below are intended for ALL mitochondrial disease patients regardless of type.

Are the COVID-19 vaccines recommended for mitochondrial disease patients? 

Clinical trials have not been conducted in patients with rare diseases. Clinical trials in children aged 12 years and older have started, but we will not have results until summer. Although knowledge concerning all the potential vaccine effects in mitochondrial disease is currently unknown, the safety profile of the vaccine so far suggests that the benefit of preventing COVID-19 infection outweighs the risk of vaccine reaction. We do expect patients with mitochondrial disease to have a similar response to the vaccine as the general population. 

Are there any specific precautions that I need to take if I or my child have a mitochondrial disease? 

You should always discuss your health care with your doctor or nurse specialist. Patients who have immune deficiencies or other serious complications from their mitochondrial disease could be at risk of their mitochondrial disease worsening if the side effects produce fever, loss of appetite, inability to hydrate, diarrhea, or vomiting. The safety profile of the vaccines so far suggests that the benefit of preventing COVID-19 infection outweighs the risk of vaccine reactions. The knowledge of prior reactions and experiences with other vaccines, such as the flu vaccine, can be a helpful guide for making a plan if such side effects occur. 

COVID-19 vaccines have not yet been approved for children. The youngest age tested in clinical trials has been 16 years old.  However, Moderna has already started clinical trials in children aged 12 to 17 years old. 

If you or your child are immunosuppressed, immunocompromised or have received an organ transplant, please discuss the suitability of the vaccine with your health care team. 

We also realize that many mitochondrial disease patients do not have a mitochondrial specialist or their doctor would like more direction from a mitochondrial specialist.  During the pandemic, many of the doctors within the Mitochondrial Care Network (MCN) have been providing telehealth.  Visit https://www.mitonetwork.org/centers to see a list of centers and reach out to their schedulers.

To view the MMS statement in its entirety, please visit https://www.umdf.org/coronavirus/mitochondrial-medicine-society-response-to-covid19-vaccine/.

Thank you again for joining us for the most recent webcast.