The Mayo Clinic has a special place in the hearts and minds of people not just in the U.S. but around the world. The Mayo Clinics (there are three of them) make up the largest nonprofit medical group practice in the world. They employ more than 3,800 physicians and scientists and specializes in treating difficult cases.
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[/fright]The Mayo Clinic at Rochester was ranked as the #1 overall hospital in the United States by U.S. News & World Report in 2014-2015. Mayo Clinic doctors are paid a fixed salary not dependent on patient volume or on income from fee-for-service payments. They are there to serve you. If you have a tough medical problem the Mayo Clinic is known to be the place to go.
Many chronic fatigue syndrome (ME/CFS) patients, however, have had a different experience. Frustrated by their inability in their local areas to get answers many have headed up to the Mayo Clinic only to return financially depleted and even embittered by their experiences. They’ve told stories of a clinic which had almost no interest or understanding of ME/CFS or FM.
Two Recent Trips
In this blog we take a look at the stories of two ME/CFS patients with POTS who visited a Mayo Clinic recently. Their stories suggest the Mayo Clinic is changing in some important ways but is still behind the times as well.
Dysautonomia plays an important role in their stories. A relatively new introduction to the medical community, it’s perhaps no surprise that given the Mayo Clinic’s history of focusing on (at least some) difficult disorders, that it would develop one of the top autonomic nervous system clinics in the country. The leader of the autonomic disorders project at the Mayo Clinic, Dr. Phillip Low invented the quantitative sudomotor axon reflex test (QSART), the autonomic reflex screen, and the autonomic symptom profile (ASP).
First we take a look at Rachel’s experience. Rachel well knew the perils of misdiagnosis and uninformed doctors. She’d been misdiagnosed with multiple sclerosis for almost ten years before she stumbled on postural orthostatic tachycardia syndrome (POTS) during an internet search. Her hunt lead her to being diagnosed with POTS and ME/CFS and then, following her doctor’s recommendation, she took a trip to the best of the best – the Mayo Clinic.
I love the people at Mayo. I had endured years of abuse from the medical community, and the kindness and validation I received there restored my faith in humans. It was fuel for the soul, and I desperately needed that.
My long journey to a diagnosis began in 2003. It's not a novel story. In fact, it's probably strikingly similar to yours if you have CFS...
It's a story fraught with the usual suspects: disbelieving docs who were often cruel in their dismissal of my symptoms (one male doc even asked me to recount my sexual experiences in high school - obviously looking to build some sort of behavior pathology to pin my fatigue on); discompassionate friends - most of whom have fled the scene; and family, ugh - there's some deep pain there.
And of course there's my career in the specialty food business, which I fantasize about resuming to (I have multiple fully-vetted business plans written from bed) but have recently come to realize I am fast becoming professionally obsolete. Because time marches on - even as my life is standing still...
And does this sound familiar: day after day (for thousands of days now), my promise to myself that tomorrow will be better if I "Just. Try. Harder." If only wellness were predicated on sheer will...
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[/fleft]So, in July of 2015 with a strong suspicion of POTS and what was looking more and more like a misdiagnosis of MS, my husband Joe and I headed to the Mayo Clinic in Rochester, MN. to meet with their Autonomic Neurology team, considering theirs to be the definitive word on what was happening to me.
My experience at Mayo was an amazing one! Although getting to Europe, quite frankly, is an easier and less expensive undertaking. There just aren't many flights going into the tiny Rochester Minnesota "International" airport. However, after landing on a strip situated amongst the cornfields and lush green farmland, we felt an instant sense of comfort. Coming from San Diego where everything is primarily brown, we were deeply enamored with green.
The Midwestern brand of friendly was immediate as we were greeted by a fellow passenger who announced right away that Mayo Clinic had saved her husband's life, and whatever brought us to Mayo, we were in the right place! We noticed a lot of that everywhere we went - that acknowledgment without intrusion sort of vibe. People come to Rochester from all over the world for pretty much one thing, and that's to visit Mayo.
During our cab ride into "town", we noted we had never seen an expanse of land so flat (so flat in fact, that one could sit out on their front porch watching their dog run away -- for three days!). But most striking, was how the cluster of tall buildings as we approached were juxtaposed against the miles and miles of farmland.
This renowned institution attracts dedicated docs from all over the globe. And each and every employee we encountered exemplified friendliness. Blood work, tests, and numerous appointments were carefully choreographed behind the scene and visible via their phone app. As more appointments were added and others shifted, we would be notified via the app as well as in person.
Each appointment was on schedule and we were allotted an abundance of time with each doc - I'm telling you, Mayo is one well-oiled machine. From a business owner's perspective, I marveled at that. And it sure makes a case for all the other institutions who can't (or don't care to) achieve such levels of excellence. It CAN be done.
I was there for two weeks in total. During that time, most of the testing was autonomic system focused with many of those tests being exclusive to Mayo. I had yet another MRI of my brain and they were able to conclude that I do not have MS as was previously diagnosed (more details on that can be found here).
Towards the end of my visit, I was given the diagnosis of hyperadrenergic POTS and CFS. I had an opportunity to meet with their CFS doc who explained that a previous bout with mononucleosis may have played a role in the development of CFS. He also talked about my sympathetic nervous system being over-activated and how the role of my parasympathetic nervous system was to regulate this action, but it was not doing its job.
He talked about the limbic system and how to make it less active. But the only recommended treatment was for me to attend their month-long (17-20 business days) outpatient program. I declined at that time as we concluded together that I had already incorporated all of the key aspects of the program (graded exercise, yoga, bio-feedback, etc.) into my daily routine. A prescription for beta blockers was considered to counter all the extra norepinephrine generated by hyperadrenergic POTS but was rejected because it would have increased my fatigue levels.
[fright]
[/fright]I returned home, grateful for the experience and a diagnosis which had eluded me for 12 years. I had a renewed sense of dedication to all my lifestyle recommendations such as daily yoga, paced breathing, etc. but my symptoms increased anyway.
I contacted Mayo with the intent to return for their treatment program, despite the devastating impact the 26k+ cost would have on our finances. However, I came to the disappointing realization that Mayo subscribes to the somewhat antiquated treatment approach being championed in the recent PACE trial results. As much as I hold Mayo in high regard, this feels like a betrayal and I believe it to be a colossal chink in their armor.
Corinne’s Story
Corinne Blandino approached the Mayo Clinic last year with two serious problems; a lesion on her spine that defied categorization and a case of severe ME/CFS and POTS. Corinne was one of many people with ME/CFS who having exhausted their local resources, had traveled to the Mayo Clinic decades before only to return financially depleted and dejected.
This time she met with a staff who’s views on ME/CFS had changed. Her young doctor told her something similar to what Rachel was told; that some 25 years ago a viral infection resulted in an autoimmune attack on her autonomic nervous system.
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[/fleft]In other ways, though, it was more of the same. Almost twenty-five years later Corinne still does not fit into any of Mayo’s boxes. Mayo’s response to that was to try to shove her into one of them and ignore what else was going on. Since one of Mayo’s strong suits is the autonomic nervous system/POTS box it, it tried to shove her into its standard POTS box. Unfortunately, Corinne with her complex ME/CFS issues doesn’t fit into that box.
When it came to ME/CFS/POTS the neurologist was cognizant of the medications used to treat POTS but said that the main treatment would be exercise.
That astonished Corinne…Besides her severe ME/CFS she noted that
In order to make her recommendation the Doctor had to ignore the idea the exercise might make someone with ME/CFS, and in this case severe ME/CFS, worse. She also had to ignore the fact that Corinne had a spinal lesion that made even walking difficult. She did what most doctors have done with ME/CFS patients; they discarded the parts they didn’t understand and moved forward with what they knew. What this doctor knows is exercise….
Mayo also appeared to Corinne to be something of a closed system. They weren’t interested, for instance, in contacting Corinne's ME/CFS specialist: because they were the best of the best everything would take place within Mayo. That, of course, is not a recipe for learning new ideas.
Conclusion
These two recent reports indicate that some doctors at the Mayo Clinic now recognize that ME/CFS is a real disease which is often triggered by a virus and that the autonomic nervous and immune systems are implicated. That’s progress. Issie reported that she had a good experience at Mayo but that it took a lot of work - and three doctors - before she got some answers. Corinne's experience was not so good but Rachel's experience was pretty good: she was treated with respect and got some answers - until she got to the treatment part.
[fright]
[/fright]Mayo has some good doctors but their standard treatment approach, to ME/CFS (exercise, meditation, yoga) is both rudimentary, and as Rachel found out, extremely expensive. It’s focused on using exercise, yoga and stress reduction to remove the effects of deconditioning and reduce sympathetic nervous system activity.
In fact, their online treatment section on chronic fatigue syndrome could have been written 25 years ago. (One would suspect that it was except that Mayo completely ignored ME/CFS for many years.) It's so rudimentary that one wonders how much time Mayo took putting it together.
Mayo is almost chilling confident in its prescription for graded exercise: "Your strength and endurance will improve". Despite the fact that Mayo must have encountered many ME/CFS patients such as Rachel and Corinne with orthostatic intolerance OI is not mentioned in their primitive testing section.
The Mayo Clinic remains a conundrum. It is highly respected around the world for its diagnostic skills and it's ability to treat difficult diseases, but has an exceedingly primitive understanding of how to treat ME/CFS. Even a focus on the autonomic nervous system - which overlaps with ME/CFS - has not helped Mayo flesh out its approach.
[fright]
Many chronic fatigue syndrome (ME/CFS) patients, however, have had a different experience. Frustrated by their inability in their local areas to get answers many have headed up to the Mayo Clinic only to return financially depleted and even embittered by their experiences. They’ve told stories of a clinic which had almost no interest or understanding of ME/CFS or FM.
Two Recent Trips
In this blog we take a look at the stories of two ME/CFS patients with POTS who visited a Mayo Clinic recently. Their stories suggest the Mayo Clinic is changing in some important ways but is still behind the times as well.
Dysautonomia plays an important role in their stories. A relatively new introduction to the medical community, it’s perhaps no surprise that given the Mayo Clinic’s history of focusing on (at least some) difficult disorders, that it would develop one of the top autonomic nervous system clinics in the country. The leader of the autonomic disorders project at the Mayo Clinic, Dr. Phillip Low invented the quantitative sudomotor axon reflex test (QSART), the autonomic reflex screen, and the autonomic symptom profile (ASP).
First we take a look at Rachel’s experience. Rachel well knew the perils of misdiagnosis and uninformed doctors. She’d been misdiagnosed with multiple sclerosis for almost ten years before she stumbled on postural orthostatic tachycardia syndrome (POTS) during an internet search. Her hunt lead her to being diagnosed with POTS and ME/CFS and then, following her doctor’s recommendation, she took a trip to the best of the best – the Mayo Clinic.
- Check out Rachel's surprisingly good response to a multiple sclerosis drug Copaxone - A Chronic Fatigue Syndrome/POTS Patient Responds to a Multiple Sclerosis Drug - What Does It Mean?
I love the people at Mayo. I had endured years of abuse from the medical community, and the kindness and validation I received there restored my faith in humans. It was fuel for the soul, and I desperately needed that.
My long journey to a diagnosis began in 2003. It's not a novel story. In fact, it's probably strikingly similar to yours if you have CFS...
It's a story fraught with the usual suspects: disbelieving docs who were often cruel in their dismissal of my symptoms (one male doc even asked me to recount my sexual experiences in high school - obviously looking to build some sort of behavior pathology to pin my fatigue on); discompassionate friends - most of whom have fled the scene; and family, ugh - there's some deep pain there.
And of course there's my career in the specialty food business, which I fantasize about resuming to (I have multiple fully-vetted business plans written from bed) but have recently come to realize I am fast becoming professionally obsolete. Because time marches on - even as my life is standing still...
And does this sound familiar: day after day (for thousands of days now), my promise to myself that tomorrow will be better if I "Just. Try. Harder." If only wellness were predicated on sheer will...
[fleft]
My experience at Mayo was an amazing one! Although getting to Europe, quite frankly, is an easier and less expensive undertaking. There just aren't many flights going into the tiny Rochester Minnesota "International" airport. However, after landing on a strip situated amongst the cornfields and lush green farmland, we felt an instant sense of comfort. Coming from San Diego where everything is primarily brown, we were deeply enamored with green.
The Midwestern brand of friendly was immediate as we were greeted by a fellow passenger who announced right away that Mayo Clinic had saved her husband's life, and whatever brought us to Mayo, we were in the right place! We noticed a lot of that everywhere we went - that acknowledgment without intrusion sort of vibe. People come to Rochester from all over the world for pretty much one thing, and that's to visit Mayo.
During our cab ride into "town", we noted we had never seen an expanse of land so flat (so flat in fact, that one could sit out on their front porch watching their dog run away -- for three days!). But most striking, was how the cluster of tall buildings as we approached were juxtaposed against the miles and miles of farmland.
This renowned institution attracts dedicated docs from all over the globe. And each and every employee we encountered exemplified friendliness. Blood work, tests, and numerous appointments were carefully choreographed behind the scene and visible via their phone app. As more appointments were added and others shifted, we would be notified via the app as well as in person.
Each appointment was on schedule and we were allotted an abundance of time with each doc - I'm telling you, Mayo is one well-oiled machine. From a business owner's perspective, I marveled at that. And it sure makes a case for all the other institutions who can't (or don't care to) achieve such levels of excellence. It CAN be done.
I was there for two weeks in total. During that time, most of the testing was autonomic system focused with many of those tests being exclusive to Mayo. I had yet another MRI of my brain and they were able to conclude that I do not have MS as was previously diagnosed (more details on that can be found here).
Towards the end of my visit, I was given the diagnosis of hyperadrenergic POTS and CFS. I had an opportunity to meet with their CFS doc who explained that a previous bout with mononucleosis may have played a role in the development of CFS. He also talked about my sympathetic nervous system being over-activated and how the role of my parasympathetic nervous system was to regulate this action, but it was not doing its job.
He talked about the limbic system and how to make it less active. But the only recommended treatment was for me to attend their month-long (17-20 business days) outpatient program. I declined at that time as we concluded together that I had already incorporated all of the key aspects of the program (graded exercise, yoga, bio-feedback, etc.) into my daily routine. A prescription for beta blockers was considered to counter all the extra norepinephrine generated by hyperadrenergic POTS but was rejected because it would have increased my fatigue levels.
[fright]
I contacted Mayo with the intent to return for their treatment program, despite the devastating impact the 26k+ cost would have on our finances. However, I came to the disappointing realization that Mayo subscribes to the somewhat antiquated treatment approach being championed in the recent PACE trial results. As much as I hold Mayo in high regard, this feels like a betrayal and I believe it to be a colossal chink in their armor.
Corinne’s Story
Corinne Blandino approached the Mayo Clinic last year with two serious problems; a lesion on her spine that defied categorization and a case of severe ME/CFS and POTS. Corinne was one of many people with ME/CFS who having exhausted their local resources, had traveled to the Mayo Clinic decades before only to return financially depleted and dejected.
This time she met with a staff who’s views on ME/CFS had changed. Her young doctor told her something similar to what Rachel was told; that some 25 years ago a viral infection resulted in an autoimmune attack on her autonomic nervous system.
[fleft]
When it came to ME/CFS/POTS the neurologist was cognizant of the medications used to treat POTS but said that the main treatment would be exercise.
That astonished Corinne…Besides her severe ME/CFS she noted that
In order to make her recommendation the Doctor had to ignore the idea the exercise might make someone with ME/CFS, and in this case severe ME/CFS, worse. She also had to ignore the fact that Corinne had a spinal lesion that made even walking difficult. She did what most doctors have done with ME/CFS patients; they discarded the parts they didn’t understand and moved forward with what they knew. What this doctor knows is exercise….
Mayo also appeared to Corinne to be something of a closed system. They weren’t interested, for instance, in contacting Corinne's ME/CFS specialist: because they were the best of the best everything would take place within Mayo. That, of course, is not a recipe for learning new ideas.
Conclusion
These two recent reports indicate that some doctors at the Mayo Clinic now recognize that ME/CFS is a real disease which is often triggered by a virus and that the autonomic nervous and immune systems are implicated. That’s progress. Issie reported that she had a good experience at Mayo but that it took a lot of work - and three doctors - before she got some answers. Corinne's experience was not so good but Rachel's experience was pretty good: she was treated with respect and got some answers - until she got to the treatment part.
[fright]
In fact, their online treatment section on chronic fatigue syndrome could have been written 25 years ago. (One would suspect that it was except that Mayo completely ignored ME/CFS for many years.) It's so rudimentary that one wonders how much time Mayo took putting it together.
Mayo is almost chilling confident in its prescription for graded exercise: "Your strength and endurance will improve". Despite the fact that Mayo must have encountered many ME/CFS patients such as Rachel and Corinne with orthostatic intolerance OI is not mentioned in their primitive testing section.
The Mayo Clinic remains a conundrum. It is highly respected around the world for its diagnostic skills and it's ability to treat difficult diseases, but has an exceedingly primitive understanding of how to treat ME/CFS. Even a focus on the autonomic nervous system - which overlaps with ME/CFS - has not helped Mayo flesh out its approach.
- Check out Rachel's surprisingly good response to Copaxone - a multiple sclerosis drug - A Chronic Fatigue Syndrome/POTS Patient Responds to a Multiple Sclerosis Drug - What Does It Mean?
- Read about Corinne's trip to the Mayo Clinic (Coming Full Circle: the Mayo Clinic Twenty Three Years Later) - and more of Corinne’s blogs here.
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I’ve also cut my beta block usage in half. FYI I only take 2 capsules per day of Parasym Plus. 
