Given the rapidly changing landscape at the federal level, we recognize that the road ahead may bring some changes for patient advocacy. Even in this evolving environment, we’re excited to share some positive news: #MEAction and the Mayo Clinic have been awarded the Sigma 2024 American Nurses Credentialing Center Evidence-Based Practice Implementation Grant awarded by The Sigma Theta Tau International Honor Society of Nursing (STTI). We are also collaborating with Dr. Nisha Mathews, from University of Houston Clear Lake, Texas. This grant will support our efforts to transform nursing-led education and create resources that truly meet the needs of ME/CFS patients at Mayo Clinic Rochester and beyond.
We presented our project on October 29, 2024 at the ANCC National Magnet® and Pathway to Excellence® Conference’s Research Symposium.
Read on to learn more!
1. The Narrative Pacing Survey
This year, we debuted the Narrative Pacing Study, a survey that posed questions about activity management with focus on symptom-contingent pacing. Just under 200 participants completed the first section, which contained the most essential questions about demographics, activity management strategies in general, and pacing in particular. However, we designed the study so that people with ME and Long COVID could share more of their stories through in-depth questions about their experiences; we received these additional responses from ~500 people, for a total of ~700 responses!
2. Processing the Narrative Data
We received a seed grant, the General Internal Medicine Research Award (2024) from Mayo Clinic Rochester to support qualitative analysis for this data and have assembled a wonderful team of data analysts for this effort! This is how we connected with Dr. Nisha Mathews, Ph.D., RN, Assistant Professor of Nursing at University of Houston Clear Lake.
3. Translational Work
The next step in this work has the potential to create real change for patients at Mayo Clinic and beyond. We will use the data from the narrative analysis to inform the creation of patient education materials to be delivered by Mayo Clinic nursing staff in Mayo Clinic’s Fibromyalgia & Chronic Fatigue Clinic.
Our study team in this effort includes two familiar faces: Jaime Seltzer, Scientific Director of #MEAction and Dr. Stephanie Grach. Essential new members of the team are Jessica Ask, MSN, RN, the nurse manager of the Fibromyalgia, Chronic Fatigue, and Post-COVID Care Clinics at Mayo Clinic; and Dr. Nisha Mathews, PhD, RN, Assistant Professor at the University of Houston Clear Lake, and the Research Chair of the National Association of Indian Nurses of America. We will also be engaging key stakeholders throughout the project, including people with ME, caregivers, and the Mayo Clinic nursing staff.
We are very excited to announce that we were awarded Sigma’s 2024 American Nurses Credentialing Center Evidence-Based Practice Implementation Grant for this work!
Objectives of the study:
- Develop Patient-Centered Educational Materials: Create innovative, evidence-based pacing education materials informed by the lived experiences of ME/CFS patients, using data collected from the Narrative Pacing Survey.
- Implement and Evaluate the Education Program: Integrate the new pacing education materials into the existing Mayo Clinic Rochester ME/CFS patient education program and conduct pre- and post-intervention surveys to assess changes in patient satisfaction and quality of life.
- Enhance Nursing-Led Patient Care: Work with nursing staff on effective delivery of the new pacing education program, fostering a holistic and empathetic approach to ME/CFS management.
We’re so glad to have received continuing support for our medical education work at #MEAction and beyond!
#MEAction’s mission to ensure people with ME have access to effective medical treatments will never waiver! We will continue to fight for you every day!
