Pain Presentation at Annual Carrell-Krusen Neuromuscular Symposium

MSU is excited to announce that our study “Pain profile and opioid medication use in myositis” will be presented at the upcoming 44th Annual Carrell-Krusen Neuromuscular Symposium next week!  This virtual symposium is a clinical education experience for members of multidisciplinary teams who care for patients with rare neuromuscular diseases and is hosted by UT Southwestern Medical Center.  Many of the top myositis specialists will be in attendance. We can’t think of a more perfect place to begin to tell the story of pain in myositis.

The study captures the experiences of close to 500 myositis community members who took their valuable time to participate in the 2019 survey.  The survey was conceived by Jerry Willams, Founder and President of Myositis Support and Understanding, and Emily Filmore, Board Member Emeritus, as a call to action to (1) put to rest for once and all the perception that “there is no pain with myositis,” and (2) understand the impact of the 2016 CDC Guidelines on opioid use and pain management. Our Research Team – Lynn Wilson, VP and Director of MSU’s Patient-Centered Research Initiative, Manuel Lubinus, Chief Science Officer, and our Medical Advisor, Dr. Salman Bhai, Assistant Professor in the Department of Neurology at UT Southwestern – pushed it across the finish line.

Our thanks to Dr. Bhai, who believed in us, and the commitment we have taken on to amplify the voices of people impacted by myositis across the rare disease space.  We would also like to thank Dr. Abhiram Bhashyam, MD, Ph.D., Hand and Upper Extremity Orthopedic Surgeon at Massachusetts General Hospital, for taking the lead in this study. Dr. Bhashyam’s expertise is wide-ranging, including understanding the use of opioids for treatment in muscle trauma.

This is the first robust study to highlight the prevalence of pain in myositis as well as predictors of pain and medication among different types of myositis. The door is open now to prospectively investigate pain in myositis, its impact on quality of life, and the most effective treatment options.

This is just the start of what will be an exciting 2022 for MSU, and our partnership with Drs Bhai and Bhashyam will be front and center. You will be hearing more from this collaboration shortly. Visit the research section of our website for more information about MSU Patient-Centered Research and the projects we are leading.

MSU is an all-volunteer 501(c)(3) nonprofit organization empowering the Myositis community through education, support, awareness, advocacy, access to research, and need-based assistance.



Myositis Support and Understanding Association (MSU) is a patient-centered, all-volunteer 501(c)(3) nonprofit organization Empowering the Myositis Community. Founded by Myositis patients, for Myositis patients, MSU provides education, support, advocacy, access to research and clinical trial matching, and need-based financial assistance.

View more information: Myositis Support


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