An Mayo Clinic ME/CFS Love Story and the Chink in Their Armor

Cort

Founder of Health Rising and Phoenix Rising
Staff member
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.
A Mayo Clinic Love Story: The Chink in Their Armor by Rachel

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.

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[/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.

She told me that she would not have sent me home without a diagnosis back then, if she had known what they know today. She believes that 23 years ago, I contracted a viral infection that resulted in (science doesn’t know yet exactly how) an AI attack on my autonomic nervous system which resulted in POTS.
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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.
“Yes, there are new drugs (pause) but the main component of the protocol would be exercise!”
That astonished Corinne…Besides her severe ME/CFS she noted that
“My legs do not feel nor do they work properly! (At this time, because of the lesion, I was getting constriction and cramping in my feet and calves when I walked more than a few feet…besides the persistent numbness and hypersensitivity throughout my back arms and legs.) How can I exercise?

Mayo did not get it…..My exercise intolerance is not based on deconditioning. How could it be when it began the day I got ill, and I was as fit as they come?"
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.

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[/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.

Medications

Because chronic fatigue syndrome affects people in many different ways, your treatment will be tailored to your specific set of symptoms. Symptom relief may include certain medications:
  • Antidepressants. Many people who have chronic fatigue syndrome are also depressed. Treating your depression can make it easier for you to cope with the problems associated with chronic fatigue syndrome. Low doses of some antidepressants also can help improve sleep and relieve pain.
  • Sleeping pills. If home measures, such as avoiding caffeine, don't help you get better rest at night, your doctor might suggest trying prescription sleep aids.
Therapy

The most effective treatment for chronic fatigue syndrome appears to be a two-pronged approach that combines psychological counseling with a gentle exercise program.

  • Graded exercise. A physical therapist can help determine what types of exercise are best for you. Inactive people often begin with range-of-motion and stretching exercises for just a few minutes a day.

    If you're exhausted the next day, you're doing too much. Your strength and endurance will improve as you gradually increase the intensity of your exercise over time.

  • Psychological counseling. Talking with a counselor can help you figure out options to work around some of the limitations that chronic fatigue syndrome imposes on you. Feeling more in control of your life can improve your outlook dramatically.

Complications

Possible complications of chronic fatigue syndrome include:
  • Depression
  • Social isolation
  • Lifestyle restrictions
  • Increased work absences
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.
 
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Rachel Riggs

Well-Known Member
Cort, thank you so much for letting me tell my Mayo story! I cringe to know that as my friends learn about me having CFS - those who care enough to Google it - will invariably end up on the Mayo Clinic site which recommends exercise (GET) and cognitive behavior therapy (CBT). And to that, all I can say is: thanks for making me look like I'm not really sick, and instead, like I have psychological problems...
 
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This was a very interesting article. Last year, Anne Reagan, wife of evangelist Dr. David Reagan (of Lamb and Lion Ministries) had all her medical records sent to the Mayo for evaluation. At the time, they weren't sure what she had, she was extremely ill, although I had repeatedly shared with Dr. Reagan via e-mail that the symptoms he described to me were exactly the same as many of the severe/extremely affected ME/CFS patients, myself included.

They, like many couples wanted to believe it was anything BUT ME/CFS and certainly something that could be definitively identified and 'cured'. The Mayo, after reviewing her records, called Dr. Reagan and told him that they were fairly certain Anne had ME/CFS and they had little to nothing to offer. They counseled him not to bother bringing her there, which at the time was shocking to them.

In the end David and Anne went to see Dr. Lapp at the Hunter-Hopkins Center. After 1000's of dollars and numerous tests over several days, he came to the same conclusion...that she had ME/CFS.

He sent her home with a list of supplements and suggestions......sadly, the exact same documents and articles I'd given Dr. Reagan in the first place. But, they very much needed a medical 'professional' to validate what was happening to Anne and to that end it was helpful.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
This was a very interesting article. Last year, Anne Reagan, wife of evangelist Dr. David Reagan (of Lamb and Lion Ministries) had all her medical records sent to the Mayo for evaluation. At the time, they weren't sure what she had, she was extremely ill, although I had repeatedly shared with Dr. Reagan via e-mail that the symptoms he described to me were exactly the same as many of the severe/extremely affected ME/CFS patients, myself included.

They, like many couples wanted to believe it was anything BUT ME/CFS and certainly something that could be definitively identified and 'cured'. The Mayo, after reviewing her records, called Dr. Reagan and told him that they were fairly certain Anne had ME/CFS and they had little to nothing to offer. They counseled him not to bother bringing her there, which at the time was shocking to them.

In the end David and Anne went to see Dr. Lapp at the Hunter-Hopkins Center. After 1000's of dollars and numerous tests over several days, he came to the same conclusion...that she had ME/CFS.

He sent her home with a list of supplements and suggestions......sadly, the exact same documents and articles I'd given Dr. Reagan in the first place. But, they very much needed a medical 'professional' to validate what was happening to Anne and to that end it was helpful.
Well - at least Mayo was honest about their approach - that they had little to offer - that's a good first step I guess.

When I think about Mayo and their soooo conservative approach to ME/CFS I wonder what effect the CDC's multi-site study, when its published, will have on their practices. It should describe the large variety of practices used and hopefully will assess their effectiveness.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Cort, thank you so much for letting me tell my Mayo story! I cringe to know that as my friends learn about me having CFS - those who care enough to Google it - will invariably end up on the Mayo Clinic site which recommends exercise (GET) and cognitive behavior therapy (CBT). And to that, all I can say is: thanks for making me look like I'm not really sick, and instead, like I have psychological problems...
Yes it doesn't really reflect your experience with your doctor - who seemed to say this is real - there is a viral connection - the SNS is pumped up......even if he had no good options for treatment.

The Mayo is a big place...
 

Rachel Riggs

Well-Known Member
Yes it doesn't really reflect your experience with your doctor - who seemed to say this is real - there is a viral connection - the SNS is pumped up......even if he had no good options for treatment.

The Mayo is a big place...
@Cort He did specify that it should only take me about 2 years to be all better - with GET! I am not hearing any stories, no matter the treatment, of anyone who is all better - as in CURED...
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
@Cort He did specify that it should only take me about 2 years to be all better - with GET! I am not hearing any stories, no matter the treatment, of anyone who is all better - as in CURED...
That's amazing..
 

San Diego

Well-Known Member
These stories are eerily familiar.

Ten years ago, before I had a clue what was wrong with me and because of my symptoms of nausea, dizziness, severe headaches, etc, the Mayo put me down the vertigo track. Included in the vertigo testing battery are tests that require one to stand still for upwards of 20 minutes. Needless to say, I couldn’t complete those. Even thought I had reported an inability to stand in one place for more than a few minutes, I was labeled “uncooperative” and “anxious” and sent home with antidepressants.

Of course, later I learned that my symptoms were screaming “Dysautonomia!!!”. Unfortunately, no one was listening.

I recently had to return to the Mayo to re-document my disability. This time I arrived with firm diagnoses of POTS and a very low pulse pressure when upright (diagnosed elsewhere). That, combined with Mayo’s dysautonomia “specialist” meant my initial experience was much better. I asked for, and received, the proper autoimmune blood tests (which came back negative) and was treated with dignity. The final outcome, however, was more of the same garbage.

After several days of testing, the dysauto specialist literally sat and stared at me. I keep asking questions for which he had no answers. Out of frustration, he finally suggested I could try a different beta blocker and start exercising.

I’ve tried just about everything, including Midodrin, Florinef, salt loading, saline IV’s, Mestinon, and beta blockers. The only thing that has started to make a real difference is a parasympathetic supplement. For me, damping down my sympathetic system simply didn’t work. I needed to get my parasympathetic to engage more effectively.

Next up - mast cell activation treatment. Needless to say, neither that nor the parasympathetic supplement were prescribed by the Mayo.
 

HMBCheryl

Member
I was recently seen at the Auronomic Disorders Clinic at Stanford. I had the tilt table and other Autonomic testing. I was started on Florinef and told to increase salt to 4 grams daily along with 3-4 liters of water. I was told that my POTS was likely from deconditioning as I have "no nerve damage". Low blood volume or blood pooling were not even a consideration as far as he knew. He also did not seem to know about mast cell activation. But I got the diagnosis and treatment I was looking for. The Neurologist there said that he normally prescribes exercise for POTS! but that his colleagues in the CFS clinic have told him that this can harm CFS patients. Therefore, he said I should use my own judgment and do what feels safe to me.
I already notice an improvement in my ability to tolerate upright activity and recover from tiny bits strength training, after taking the Florinef for one month. I feel grateful that I have access to treatment where CFS is known, taught and researched.
 

KweenPita

Active Member
I don't have CFS, but have Fibromyalgia and the first thing out of almost every new doctor I visit is "Why aren't you seeing a Rheumatologist?" Then I have to explain to them that Rheumatologists stopped seeing people with Fibromyalgia almost 20 years ago and it was handed off to Pain Specialist, however, now they consider it a nerve/brain disease. But I came to you for migraines sooooo.... Then they want to get me undiagnosed because surely I can't have Fibromyalgia. But then I have to crush their dreams because I have been undiagnosed 3 times and legally diagnosed through Disability in 2007. 99% I believe they have it wrong, too. But until they come up with a new improved animal, I am basically tired of Doctors who are archaic in knowledge, question my psychological makeup from the extent of Hypochondriac to Manchausens (sp) or they are the almighty God Doctor to finally do the same tests and get new and different results, now questioning their insanity. I am afraid we will never get respect, consistent treatment or relief to our suffering, until these gods of medicine can prove us by concrete scientific evidence and fact. They must be able to stain a Petri dish and see a causation. They only have faith in their god science. Not imperial evidence of our myriad of symptoms which they consider subjective when their god is fact. What is so absolutely ridiculous is even over the last 20 years their god has been proven not be omnipotent, and yet they will place their faith in nothing else, except a few visionaries. And thank my God for them.
 

Who Me?

Well-Known Member
Mayo may be good for some stuff but I don't know one person who had any luck with strictly cfs diagnosis or treatment.

I think there is a thread here about that.

@HMBCheryl pleaae add
Paragraphs. On my phone it's one huge chunk of text that I can't read. Thanks. It @Cort
 

Katherine Autry

Active Member
These stories are eerily familiar.

Ten years ago, before I had a clue what was wrong with me and because of my symptoms of nausea, dizziness, severe headaches, etc, the Mayo put me down the vertigo track. Included in the vertigo testing battery are tests that require one to stand still for upwards of 20 minutes. Needless to say, I couldn’t complete those. Even thought I had reported an inability to stand in one place for more than a few minutes, I was labeled “uncooperative” and “anxious” and sent home with antidepressants.

Of course, later I learned that my symptoms were screaming “Dysautonomia!!!”. Unfortunately, no one was listening.

I recently had to return to the Mayo to re-document my disability. This time I arrived with firm diagnoses of POTS and a very low pulse pressure when upright (diagnosed elsewhere). That, combined with Mayo’s dysautonomia “specialist” meant my initial experience was much better. I asked for, and received, the proper autoimmune blood tests (which came back negative) and was treated with dignity. The final outcome, however, was more of the same garbage.

After several days of testing, the dysauto specialist literally sat and stared at me. I keep asking questions for which he had no answers. Out of frustration, he finally suggested I could try a different beta blocker and start exercising.

I’ve tried just about everything, including Midodrin, Florinef, salt loading, saline IV’s, Mestinon, and beta blockers. The only thing that has started to make a real difference is a parasympathetic supplement. For me, damping down my sympathetic system simply didn’t work. I needed to get my parasympathetic to engage more effectively.

Next up - mast cell activation treatment. Needless to say, neither that nor the parasympathetic supplement were prescribed by the Mayo.

Hi, would you mind sharing what parasympathetic supplement you are taking, and what treatment you will seek for mast cell activation (and how you were diagnosed?) Thank you.
 

Lorelei

New Member
As a long time Mayo patient, I felt the need to comment. I was diagnosed with ME/CFS, and later fibromyalgia, at Mayo, and have had exceptional and compassionate care at the clinic in Rochester. My experience probably differs from the stories in your post for two key reasons.

First, I have had the good fortune to have annual comprehensive physicals at Mayo for a number of years. As a result, I had a personal physician I was able to contact when I first became ill, who was already familiar with my medical history and with me as a person. This physician diagnosed me with ME/CFS, and I am confident that were it not for his attention, I would never have received a diagnosis from physicians here at home and that I would be far more ill than I am now. I am forever grateful. Second, I am a more recent patient – this summer will be the two-year anniversary of my onset. I am sure that increased awareness and knowledge of ME/CFS compared to that of earlier years was also to my benefit.

I was referred to Mayo’s Chronic Pain and Fatigue Management program for a three-day program. There I was diagnosed with fibromyalgia. My physician here was also very helpful – and honest. He told me that they really don’t know what is going on with ME/CFS.

Both of my doctors were very clear that the only currently accepted medical “remedy” for ME/CFS is graded exercise and cognitive behavior therapy. However, I was never given the impression that this would cure me, or necessarily that these would even have a positive impact. It was simply a statement that this is the current medical knowledge. And let’s face it – if anyone is looking for evidence based treatment for ME/CFS, the PACE trial was the only thing out there. It’s good that the PACE trial is being debunked, but I find it hard to fault clinicians for following the recommendations.

What I most appreciate about my treatment at Mayo is that every other health condition and symptom has been aggressively evaluated and ruled out. Other than ME/CFS and fibromyalgia, I am the picture of perfect health. I would rather have the honest and conservative medical answer that there is no cure, and very little that is of help, than be subjected to medication after medication. I think my health is better as a result of this conservative approach.
 

KweenPita

Active Member
As a long time Mayo patient, I felt the need to comment. I was diagnosed with ME/CFS, and later fibromyalgia, at Mayo, and have had exceptional and compassionate care at the clinic in Rochester. My experience probably differs from the stories in your post for two key reasons.

First, I have had the good fortune to have annual comprehensive physicals at Mayo for a number of years. As a result, I had a personal physician I was able to contact when I first became ill, who was already familiar with my medical history and with me as a person. This physician diagnosed me with ME/CFS, and I am confident that were it not for his attention, I would never have received a diagnosis from physicians here at home and that I would be far more ill than I am now. I am forever grateful. Second, I am a more recent patient – this summer will be the two-year anniversary of my onset. I am sure that increased awareness and knowledge of ME/CFS compared to that of earlier years was also to my benefit.

I was referred to Mayo’s Chronic Pain and Fatigue Management program for a three-day program. There I was diagnosed with fibromyalgia. My physician here was also very helpful – and honest. He told me that they really don’t know what is going on with ME/CFS.

Both of my doctors were very clear that the only currently accepted medical “remedy” for ME/CFS is graded exercise and cognitive behavior therapy. However, I was never given the impression that this would cure me, or necessarily that these would even have a positive impact. It was simply a statement that this is the current medical knowledge. And let’s face it – if anyone is looking for evidence based treatment for ME/CFS, the PACE trial was the only thing out there. It’s good that the PACE trial is being debunked, but I find it hard to fault clinicians for following the recommendations.

What I most appreciate about my treatment at Mayo is that every other health condition and symptom has been aggressively evaluated and ruled out. Other than ME/CFS and fibromyalgia, I am the picture of perfect health. I would rather have the honest and conservative medical answer that there is no cure, and very little that is of help, than be subjected to medication after medication. I think my health is better as a result of this conservative approach.
Totally agree, have been on the receiving of way too much. Till I said I am worse off than before. Just want help with what they are Triple Dog Dare Sure Of. So glad Mayo was good for you. Believe it or not, here in Atlanta, Ga. Where Emory Clinic is we are much wanting. And like I have said a 28 person study doesn't impress me. A new medication that will help some of my pain but lists two minutes of speed announcements of telling me of all the contraindications, when I am sensitive to changing even body wash, thanks but no thanks.
 

San Diego

Well-Known Member
Hi, would you mind sharing what parasympathetic supplement you are taking, and what treatment you will seek for mast cell activation (and how you were diagnosed?) Thank you.
INIM prescribed my mast cell treatment. It is notoriously difficult to catch on a urinalysis, so my treatment was begun based on history (anaphylaxis and growing number of allergies) and symptoms. I’ve stared ranitidine, and will soon add gastrocrom and ketotifen.

I am taking Parasym Plus. If you try it, start LOW and SLOW. I jumped in too fast (full dose) at first, and it put me in bed with a big increase in symptoms. I restarted low and slow, and was able to begin tapering Mestinon, which is a harsh drug with many side effects for me. I’ve been tapering off the Mestinon, and this is my last week. I’m not sure I’ll be able to completely stop Mestinon, but I’m no longer having any of the negative side effects :) I’ve also cut my beta block usage in half. FYI I only take 2 capsules per day of Parasym Plus.
First, I have had the good fortune to have annual comprehensive physicals at Mayo for a number of years. As a result, I had a personal physician I was able to contact when I first became ill, who was already familiar with my medical history and with me as a person.
I had the same. Over ten years of physicals with Mayo primary care - during which time I had zero health or emotional problems. None. Heck, they even wrote things like “delightful” and “robust” in my charts back then. I think the main difference may be which Mayo Clinic one visits. They are not all alike.
 

Ms Nancy Blake

New Member
I don't suppose Mayo would take any notice of this, but it might be worth passing it on...the IOM report is February 2015, so I think it qualifies as recent information which replaces earlier studies:

Up-to-date Information for health care professionals dealing with patients who have ME/CFS.


Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET)

These commonly recommended treatments are based on the psychosocial model of this illness, which states that patients are simply suffering from the false belief that they have a serious physical disease in which exercise will make them worse. CBT is used to change these beliefs, and GET is used to induce the patient to increase physical activity, which is given as the goal of treatment.

The trial which is used in support of the safety and effectiveness of these treatments is the PACE Trial, first reported in 2011:

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/abstract

The design and reported outcomes of this trial are under heavy international criticism at the moment, for example:

http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/

More importantly, the report of the US Institute of Health, BEYOND MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME, Redefining an Illness,

http://www.ncbi.nlm.nih.gov/pubmed/25695122

is unequivocal that this is not a 'psychogenic' disorder.

This is from page 5:

'The primary message of this report is that ME/CFS is a serious, chronic, complex, and systemic disease that frequently and dramatically limits the activities of affected patients. In its most severe form, this disease can consume the lives of those whom it afflicts. It is “real.” It is not appropriate to dismiss these patients by saying, “I am chronically fatigued, too.”'

At the end of page 2 and the beginning of page 3, the report refers to 'the misconception that it is a psychogenic illness or even a figment of the patient's imagination'. A few lines further down in the same paragraph, it refers to 'delays in diagnosis or to misdiagnosis of a psychological problem.'

At the end of that paragraph the last sentence refers to doctors 'who often subject them to treatment strategies that exacerbate their symptoms.'. (This is undoubtedly a reference to CBT and GET.)

The beginning of the next paragraph refers to 'significant impairment and disability'

These quotations make clear that the committee confirm that this is a seriously disabling disease, not a psychiatric disorder.

Furthermore:

The last sentence before Recommendation 4:

'"Systemic exertion intolerance” captures the fact that exertion of any sort—physical, cognitive, emotional—can adversely affect these patients in many organ systems and in many aspects of their lives. The committee intends for this name to convey the complexity and severity of this disorder.'

'Recommendation 4: The committee recommends that this disorder be renamed “systemic exertion intolerance disease” (SEID). SEID should replace myalgic encephalomyelitis/chronic fatigue syndrome for patients who meet the criteria set forth in this report.'

These are on Page 11 of the Summary. and are set out on pp 227-8.

Note that 'exertion of any sort....may adversely affect these patients in many organ systems.'. This is a clear statement that the imposition of any form of exertion can do extensive, multisystem damage.

The Report thus affirms that theoretical basis of CBT is false, and that GET is a treatment which can cause systemic damage. This supports the information provided by the majority of patients, that following a program of increasing exertion when mildly or moderately ill has resulted, sometimes after a brief period of apparent improvement, in a severe and long- lasting worsening of their illness, permanent total disability and intractable pain.

This would suggest that the original treatment recommendations,, for complete rest from the inception, followed by a lifestyle adapted to the conservation of exertion would be more likely to result in improvement.

Nancy Blake

Author, 'Ramsay's Disease', 'A Beginner's Guide to ME/CFS'
 

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