#MEAction & Mayo ME/CFS Algorithm is Live!

We're paving the way to a new experience at Mayo Clinic!

Last fall, #MEAction and Mayo Clinic applied for a grant together from the Society to Improve Diagnosis in Medicine to transform the diagnostic and treatment process at Mayo Clinic Rochester for people with ME/CFS!

Our Director of Scientific and Medical Outreach, Jaime Seltzer, and Dr. Stephanie Grach and Dr. Ravindra Ganesh of Mayo Clinic have been working hard ever since and have our first major announcement!

As part of our grant-funded work, we built a diagnostic and treatment algorithm for people with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), for Mayo’s AskMayoExpert. And it is now live!

Dir. Jaime Seltzer

Dr. Stephanie Grach & Dr. Ravindra Ganesh

AskMayoExpert is “a compendium of Mayo Clinic-vetted medical knowledge" designed to provide clinicians answers to questions outside of their areas of expertise.  A diagnostic and treatment algorithm like AskMayoExpert is an interactive, clickable flow chart that allows providers to follow each step to diagnosing and treating patients.   

“The diagnostic and treatment algorithm is unique in several respects,” says Seltzer.  “For example, it is the first diagnostic and treatment algorithm available that addresses severe-presenting disease.”

All providers within the Mayo system and any clinicians who subscribe to AskMayoExpert will be able to use this diagnostic and treatment algorithm to improve care for their patients with ME/CFS.  This is more important than ever, given that ~50% of people with the Long COVID label meet the diagnostic criteria for ME/CFS.

Our team draws attention to the variability in disease presentation: "some people with ME/CFS may appear healthy if they are experiencing mild symptoms..." and others "require total care". 25% of patients are housebound or bedbound. Since this is one of the first things clinicians see, we explicitly differentiate between ME/CFS and "chronic fatigue" as a symptom.

“We’ve already heard a great deal of excitement from our providers who have been looking for guidance on this condition for quite some time,” Dr. Stephanie Grach says.  “Our primary care providers, specialists, and other staff are the ones we depend on to recognize ME/CFS as early as possible.  Our goal is to give them the tools they need to feel comfortable diagnosing and addressing ME/CFS and other infection-associated chronic illnesses.”

Katie Zahasky, who coordinated the creation of AskMayoExpert, said, “It was an honor and privilege to help develop this educational tool with this wonderful group of people who care so deeply about the patients living with this challenging disease."

Our team made sure to cover post-exertional malaise, pacing and state that graded exercise is not recommended in patients with ME/CFS. Clinicians can also click to expand and learn more about the associated symptoms depicted here, including orthostatic intolerance and dizziness, cognitive dysfunction, sleep disturbances, pain, sensory sensitivites, new allergies and intolerances, and more. We also added special considerations for nutrition in individuals with severe ME (not depicted). For new medications, we emphasized to "start low and go slow".

Listen as Dr. Grach and Dir. Seltzer describe the project!

This is the first completed project of many in our grant-funded partnership. We are looking forward to our continued progress with Mayo clinicians and #MEAction working side-by-side to improve quality of care for people with ME/CFS.