Health Rising started charting “ME/CFS moments” when they started popping up with some regularity. ME/CFS moments refer to events that seem to indicate that things are changing for the better for this complex and often neglected disease (as well as its allies). The ME/CFS moments we’ve charted thus far include:
- Metrodora – the emergence of Metrodora – a new medical and research center focused entirely on neuroimmune axis disorders such as chronic fatigue syndrome (ME/CFS), fibromyalgia, dysautonomia, postural orthostatic tachycardia syndrome (POTS), and migraine.
- STAT Earpiece – designed specifically for diseases like ME/CFS, POTS, and other forms of orthostatic intolerance, this earpiece assesses blood flows to the head.
- Ron Davis’s Big Grant – Ron Davis’s decades-long run of huge grant wins abruptly ended when he tried to get them for ME/CFS. After many years of trying, he finally snagged a big one, bringing up the question of whether ME/CFS is received better where it really counts – at grant review committee level?
- An ME/CFS Clinic and Researcher Get Really Busy – Last year, Bateman Horne Center and Dr. Benjamin Natelson were swamped with work – a good sign!
- Major Fibromyalgia Study Underway – Fibromyalgia is another disease that gets really poor funding. It was really good news then to see perhaps the biggest major finding in FM over the past five years – that antibodies in the blood may be causing it – got a major funding opportunity.
The Mayo Clinic’s ME/CFS Moment
Who would have thought? Anyone who thinks a leopard can’t change its spots or that major progress can’t occur really quickly in ME/CFS, chew on this: the single most maligned healthcare provider in the ME/CFS world has had a come-to-Jesus moment.
The Mayo Clinic breakthrough may be the biggest ME/CFS moment thus far. Mayo has had a special place in the ME/CFS community’s circle of hell for one reason – it promised so much and delivered so little. The Mayo Clinic’s reputation – that it’s the place to go in the U.S. for complex, hard-to-understand diseases – left many people with ME/CFS undertaking long, exhausting, and expensive journeys to get help – only to be given the cold shoulder.
Mayo has a big footprint. It employs over 7,300 physicians and scientists and 66,000 administrative staff, is home to the top-15 ranked Mayo Clinic Alix School of Medicine, and produces many of the highest-regarded residency education programs in the United States.
Mayo’s transformation from an irresponsible to responsible ME/CFS provider appears to have begun about 3 years ago when it dropped CBT/GET from its website. Things really got moving in May of last year when Mayo Clinic’s campus in Rochester, Minnesota met with #MEAction to discuss treatment, research, and improved community engagement for people with ME. Next, #MEAction teamed up with Mayo to win a grant from the Society to Improve Diagnosis in Medicine to transform the diagnostic and treatment process at Mayo Clinic Rochester for people with ME/CFS.
In April of this year, #MEAction and Mayo created a diagnostic and treatment algorithm that doctors at the Mayo Clinic campuses will use to quickly get them up to speed on ME/CFS.
Just last week, #MEAction’s Director of Scientific and Medical Outreach, Jaime Seltzer, collaborated with Mayo Clinic doctors to publish a concise guide, “Diagnosis and Management of Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome“, and continuing medical education course, to help doctors better understand and manage ME/CFS. #MEAction reported that interest has been strong. The paper was in the top 1% most shared of all Mayo Clinic publications and was the most-shared paper amongst its contemporaries at Mayo Clinic Proceedings.
Check out Jaime and Dr. Grach talking about the effort.
This is a big moment. Doctors across the world look to the Mayo Clinic for answers. Mayo might not have the answer for people with ME/CFS, but it should finally be able to at least manage them appropriately.
Mayo didn’t pull any punches regarding ME/CFS. Its hard-hitting intro:
“Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic disease often preceded by infection” that “is common and debilitating” which produces a “lower quality of life on average than multiple sclerosis, chronic kidney failure, or congestive heart failure”
will surely open eyes and ears. Its post-exertional malaise (PEM) information nails both the breadth and depth of the most significant problem in ME/CFS. It’s hard to imagine anyone with an ounce of empathy not looking at it and cringing.
Internists who learn that “90% of people with ME/CFS are not been diagnosed” will surely begin to wonder who they missed. It was good to see hypermobility, POTS, and mast cell activation syndrome (MCAS) listed as comorbid disorders (but surprising not to see fibromyalgia, irritable bowel syndrome, or migraine included in the “commonly diagnosed” comorbid disorders section). (Fibromyalgia medications are included in the treatment section).
When we look back at see how ME/CFS came to be recognized as a real and serious disorder that every medical professional should know about, Mayo’s come-to-Jesus effort with ME/CFS might end up being a turning point. Congrats to Jaime Seltzer and MEAction for getting this done.
Have you been to Mayo recently? If so, tell us how it went.
Like Hearing About ME/CFS Moments? Please Support Health Rising and Keep Them Coming
HEALTH RISING IS NOT A 501 (c) 3 NON-PROFIT