This volunteer survey is the result of #MEAction being awarded a Ford Foundation Grant in 2021 to diversify and build capacity within our volunteer program. Since then, we have worked to have ambitious goals around creating high-quality volunteer training modules and a fully operational, accessible, and interactive volunteer recruitment, training, and deployment system. We are excited about the grant and the opportunity it provides to grow our social movement. As Long COVID and other diseases stimulate more awareness about ME/CFS, there is an increased need for volunteers from all backgrounds to join #MEAction.

Over the past few months, we have been strategizing and reaching out to specific community members about how to make our volunteer program more effective and diverse. We also conducted insightful listening sessions where Black, Indigenous, and people of color living with ME/CFS and Long COVID were invited to share their perspectives on volunteerism. Our next step was for #MEAction consultants, Terri L. Wilder and Chimére L. Smith, to create this survey to continue capturing significant data from a wider array of current and prospective #MEAction volunteers. Once the survey closes, #MEAction will review the data and use it to inform future strategies for volunteer engagement and recruitment. We hope you will take part.

We appreciate your time and efforts–your participation matters. We look forward to building a volunteer program that ensures a lasting change and a stronger sense of community.

*We understand that some people may not be able to complete the survey in one sitting. If you need to come back later, you will need to hit submit on your partially filled out survey. Once you hit submit, you will receive a confirmation email. In this email, there will be a section titled “edit response” that will allow you access to your survey, so you can finish it when you are ready.

Here is what you are looking for in your confirmation email to complete or edit your survey responses: