04/21/2026
We’re excited to share a new study about the ME/CFS diagnostic and treatment algorithm that ’s Scientific Director and Mayo Clinic researcher-clinicians created, as part of the Society to Improve Diagnosis in Medicine (SIDM) grant.
Find all the details here: https://www.meaction.net/post/meaction-mayo-algorithm-s-effect-on-me-cfs-care
We performed a study to determine if the introduction of the algorithm was associated with improved clinical care for people with ME/CFS.
We found that, after the algorithm went live, referrals to Mayo’s ME/CFS Specialty Clinic increased—and outside referrals were more likely to match the specialty clinic’s expert diagnosis of ME/CFS. In other words: more people were getting to the right place at Mayo, and were they getting there with a more accurate working diagnosis!
These positive results could go on to influence other medical systems. The creation and introduction of point-of-care tools, provided they are created with the input of people with lived experience, is a very inexpensive way to improve diagnosis and reduce the cost inherent in a cycle of referrals and unnecessary testing while cutting down on inappropriate advice that may lead to harm.
ME/CFS care has been shaped for far too long by under-recognition, stigma, and outdated assumptions. Building tools that clinicians actually use—tools that reflect what patients experience—requires lived experience leadership at the table from day one. When people with lived experience of ME/CFS have a strong and central role in clinical research, our perspectives change what gets built and what gets prioritized.
’s Scientific Director is co-first author for this paper along with Dr. Stephanie Grach, an Assistant Professor of Medicine at Mayo Clinic Rochester and longtime collaborator— congrats to them, and to the whole team!
