#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

Photo of Dr. Stephanie Grach & Dr. Ravindra Ganesh

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.
This is a screenshot of the overview page of the AskMayoExpert algorithm.  It states that ME/CFS is a multisystem, complex chronic illness characterized by post-exertional malaise and fatigue.  It points out that disease onset may be gradual or sudden, and that the course can be unpredictable.  It also points out the variability in severity and clarifies that "chronic fatigue" is a symptom of many diseases rather than the nature of 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.”
This is an image starting with the heading 'Symptom Management'. It states that, while there are no approved drugs for ME/CFS, therapies have been shown to be helpful in managing symptoms.  The expanded heading is Postexertional malaise (PEM), which includes/shows links to the #MEAction Pacing Guide and the basics of PEM, explicitly adjuring against graded exercise therapy.  The closed headings are those symptoms mentioned in the caption.

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!

Or listen to #MEAction and Mayo staff list as many things they like about the new diagnostic and treatment algorithm as they can in two minutes: go!

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.

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23 thoughts on “#MEAction & Mayo ME/CFS Algorithm is Live!”

    1. Hey, Sharon– right you are. All clinicians within the Mayo system have access to AskMayoExpert automatically, but a huge number of clinicians who are not at Mayo subscribe. If you tell your doctor the information is part of AskMayoExpert, many will be able to access it through their institutional subscription.

      In addition, as the article says, this is far from the last or only output of our collaboration. Stay tuned!

    1. Any clinician can subscribe to AskMayoExpert, I believe, regardless of country. The main page for all their algorithms is https://askmayoexpert.mayoclinic.org/.

      A note: they temporarily made all their COVID pages free even if the user doesn’t have an account; so that’s what you’d see if you clicked on that without a login.

    1. Hey, Beth– if you click on their main page, and then click “login” at the upper right-hand corner it should take the clinician to a place where (I think) they can register. But I think it’s even clearer to ask them to register for AskMayoExpert or if they already are. It’s pretty common for a clinician or clinical institution to have an account.

      You’ll see the COVID-19 pages are up because they made those free to everyone, temporarily: https://askmayoexpert.mayoclinic.org/.

      1. There doesn’t appear to be anywhere to sign up. I did several different types of searches but was not able to find a way to create an account. There is a lot of resistance to the whole idea of ME/CFS being a “real” illness and GPs and other docs are always pressed for time — IMHO, things need to be as frictionless as possible.

      2. John Haughton

        Couldn’t find a place to sign up.
        Since the development was grant funded and covid info on the site is free to click into and many with long covid develop me/cfs *** Jamie, can you request a link for the Me/CFS algo on the covid page as something like “long covid/me-cfs”

        Thx

        John Haughton MD

        1. Ben HsuBorger

          John,

          Signup for AskMayoExpert is typically available institutionally to any clinical entity who subscribes, which is why you don’t see an individual signup.

          We definitely have pushed for the ME/CFS page to be included in the free COVID-19 portion of the website but are unsure it will happen/can make no promises.

          1. This is unfortunate. ME/CFS patients are frequently and repeatedly told they have a psychological problem rather than a medical condition. It would empower us tremendously and reduce an incredible amount of unnecessary shaming and suffering if we were able to provide a link to Ask to our physicians. It also might increase Mayo’s business.

            POTS patients went through something similar on a large scale until recently (though I’m sure there are still many doctors who misdiagnose and shame us). Dysautonomia International provided a wealth of information to which patients could direct their doctors on their website and doctors responded.

            Many ME/CFS patients (some of whom also have POTS) are very ill and have difficulty advocating for themselves due to weakness, extreme fatigue, brain fog, etc. Anything that could be done by the medical world, and especially highly regarded institutions like Mayo, to simplify their access to competent diagnosis and treatment would be greatly valued. I hope there is some way a link to Ask can be created for patients to share with their physicians.

  1. I love this work of yours and the facebook video that brought me here. I can’t imagine how much work it took to get this up and running. I’m sure it is the most researched algorithm out there. It would be wonderful if it was accessible to Drs not signed up to AskMayo.

    Could there be an argument based on the overlap between Post-Covid and ME/CFS that the ME/CFS algorithm should also be a free page? The Post-Covid advice actually directs to the ME/CFS page for people who get worse after exercise.

    NCNED on the Gold Coast have done a fair bit of research looking at TRP receptors in both conditions and have found strong parallels.

    Just saying!! Love your work!

    1. Ben HsuBorger

      Thanks Ketra!

      We definitely have pushed for the ME/CFS page to be included in the free COVID-19 portion of the website but are unsure it will happen/can make no promises.

      1. This is unfortunate. ME/CFS patients are frequently and repeatedly told they have a psychological problem rather than a medical condition. It would empower us tremendously and reduce an incredible amount of unnecessary shaming and suffering if we were able to provide a link to Ask to our physicians. It also might increase Mayo’s business.

        POTS patients went through something similar on a large scale until recently (though I’m sure there are still many doctors who misdiagnose and shame us). Dysautonomia International provided a wealth of information to which patients could direct their doctors on their website and doctors responded.

        Many ME/CFS patients (some of whom also have POTS) are very ill and have difficulty advocating for themselves due to weakness, extreme fatigue, brain fog, etc. Anything that could be done by the medical world, and especially highly regarded institutions like Mayo, to simplify their access to competent diagnosis and treatment would be greatly valued. I hope there is some way a link to Ask can be created for patients to share with their physicians.

        1. This is a duplicate. The CAPTCHA said it has expired the first time I tried to post but it shows up above.

  2. Lost and forgotten

    This information isn’t anything new. Dr Lucinda Bateman and Dr. Davis has had it out for years. I worry that the research community is just stringing along the grant money, as well as asking for donations. When do all of us sufferers get to see fruits of all this money in a way that actually helps us? Dr’s who don’t have time for us or take this seriously won’t look up info for squat. I know, I’ve had to educate my doctors who are totally ignorant, willingly so, because if I can find tons of valid research why can’t they? My doctor doesn’t even know what Low Dose Naltrexone is. She swore she’d research it three Televisits in a row but hasn’t. I’m too sick to go to a doctor, and can’t even get her to do her job and submit the referrals for a mobility power chair and bathroom modifications, not anyone to help clean my room. My Medicaid insurance says I qualify for it if only she would send the referrals. Over a year I have been nearly falling daily and living in a mess because I can’t stand up and move long enough to do it or bend and even trying to move an office chair exhausts me in a few minutes.
    My daughter has Long Covid over a year and it is so much like what I have, and I said from the beginning that it seemed to be, and maybe since medical people and wealthy people are getting Long Covid, maybe they will now take us serious, too. But nothing is happening! There should be teams going to peoples houses if they can’t get out, and centers in every town if they can. But only a few exists and they are too full and too far away to help the majority of people. I feel like the answers are there, maybe if geneticists and infectious disease doctors would work together something would break free. Primary Care Doctors are useless and spin out and exhaust us for no reason with no help and cause us to quit altogether. It has been three years since I have gone because I can’t keep getting abused by them. I had a clinician finally come in a week ago who promised I’d hear from “case management” in 24 hrs to get me help. But nothing. Not a peep out of Ambetter Health in Florida. They are the absolute most unresponsive excuse for an insurance company I have ever had! Nothing works and no one cares.

    1. Ben HsuBorger

      Your 10000% right that the US clinical care situation for people with ME is a nightmare. This is one of many things we’re doing to try to change that, even as we recognize it’s not going to be able to change the way each individual is treated overnight. As you point out there are so many ways the healthcare system isn’t working for the millions missing and there are many fronts we need to keep fighting on so that all people with ME will have support and access to compassionate and effective care!

  3. Teresa Álvarez

    Wonderful news! is there any possibility that we can have this tool traslate in spanish?

    1. Ben HsuBorger

      Lo siento! No, at least not that I’m aware of… AskMayoExpert is currently only available in English. We’d have had long convos with translators otherwise!

  4. Need to tighten this up. As a PWME, I can’t focus very long.
    Please fix this.

  5. It would make sense to have this treatment algorithm made available to those of us suffering from ME.
    As several of the commentators have observed, many doctors are ignorant about ME or skeptical that it exists, and mine at least is too busy treating her patients to do any research on her own.
    In my case, I find myself explaining symptoms I experience without let but which are invisible, and the treatments and medications she offers are for the most part not helpful and in some cases have been harmful.
    It would be helpful to have this information readily available so I could provide my doctor with a quick link to a particular ME topic. This disease is real and it’s terrible to live with both because of its physical and cognition effects but, too, because it’s a disease which isolates those of us who have it.

Comments are closed.

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