Amazing news! #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!
After several preliminary discussions between our Director of Scientific and Medical Outreach, Jaime Seltzer, and Dr. Stephanie Grach and Dr. Ravindra Ganesh of Mayo Clinic, we decided to embark on an exciting project together: applying for SIDM’s annual seed grant to improve diagnostic quality and reduce harm from diagnostic error.
And we were successful! #MEAction and Mayo Clinic won the grant together!
Our Team:
#MEAction and Mayo Clinic will collaborate to produce the following:
- A CME course using patient advocate and medical expertise to educate clinicians on the signs, impact, and management of chronic complex diseases like ME/CFS and Long COVID. The video for the CME will be embedded within a pre- and post-test consisting of case- and confidence-based questions to assess both objective and subjective learner improvement.
- In partnership, we will create a dedicated webpage for the project. This will include:
- the video/CME, a collaborative, case-based intervention, written and produced by #MEAction and Mayo staff
- a diagnostic algorithm with management recommendations, including referral to the Mayo Clinic Chronic Fatigue Syndrome Clinic, on AskMayoExpert.
AskMayoExpert is the primary point-of-care clinical knowledge resource utilized and curated by clinicians across Mayo Clinic. Each page provides clinical overviews with information on diagnosis and treatment through clinical algorithms known as care process models; a designated topic expert; guidelines and resources, including patient education; and clinical trials. Accuracy of care at Mayo Clinic, including diagnosis and treatment recommendations, has been shown to improve with use of AskMayoExpert compared to other web-based resources. - resources for patients, including an informative handout to share with their medical provider.
- the video/CME, a collaborative, case-based intervention, written and produced by #MEAction and Mayo staff
The algorithm and information will be accessible to all Mayo Clinic providers and external subscribers, meaning that any medical provider anywhere will be able to access the content. While some AskMayoExpert pages are proprietary, we will ensure ours may be scaled and replicated at other institutions, providing a direct means of assessing and educating any provider. The information will stay accessible beyond the initial implementation, supporting long-term education and practices for years to come.
In addition to our work funded by the grant, we have also created new, up-to-date Mayo landing pages for ME/CFS. These pages are currently going through the approval process.
Accurate, timely diagnosis & treatment means everything for people with ME/CFS
Through this project, #MEAction and Mayo Clinic will improve the care and health outcomes of patients with often post-infectious disease by providing clinicians with new knowledge to reduce barriers to diagnosis and, simultaneously, a permanent tool to guide providers in management for all future encounters.
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2 thoughts on “#MEAction & Mayo win Grant for Diagnostic Improvement”
I went to Mayo in Minnesota back in 2014. I was desperate for a diagnosis! I had been ill for 3 years. I was there for over a week, doing my best to make all appointments daily. No diagnosis. I still owe thousands of dollars and came home without a diagnosis. I had to take a friend to make sure I got to appointments, paying for both airfares. My mecfs diagnosis was due to my own research and a fantastic family physician that listened. If only they would’ve looked at records, noting long bout of Epstein Barr at 12 with a long relapse. A post viral condition is obvious. It is criminal that physicians are not taught this when post viral has been killing millions for DECADES!
I really hope that Mayo works closely with the US ME/CFS Clinician’s Coalition. This group is comprised of the premier ME/CFS experts in the United States. Mayo Clinic really needs to update their own information and recommendations, make sure none of their clinicians recommend GET for ME/CFS or ME/CFS like Long COVID, change their Pain Rehabilitation Clinics (juvenile and adult), start utilizing the breadth of effective treatments for symptoms of ME/CFS, and make sure ALL of their own clinicians are educated about ME/CFS. All of this should be done before they create a training program for other clinicians. I truly hope for the good of patients, Mayo Clinic clinicians recognize their past wrongs and change them. I’m saying this as a current patient of Mayo Clinic. I went for five years before anyone at Mayo Clinic even suggested I had ME/CFS and at that point I had already deteriorated from activity because I didn’t know I needed to pace. When it was suggested as a diagnosis just two years ago, the PRC was also heavily recommended which is an inappropriate program for someone with ME/CFS because of their push for activity and exercise. I had to go outside of Mayo Clinic to get effective, non-harmful treatment for ME/CFS. Please, please for the protection of patients make sure that clinical practice is updated at Mayo Clinic internally before attempting to teach others.
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