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

[Rachel Riggs]

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.

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.

@Lorelei Please note that my visit was really recent - I was there and received my diagnosis in July 2015.

 

[Rachel Riggs]

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'

@Ms Nancy Blake - You Go! (fist bump)

 

[Cort]

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.

Were your results so unusual that he didn't understand them? Did you feel he was up on everything?

 

[Cort]

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.

Good point Lorelei...

They are excellent at excluding anything else that might be going on. I assume that if you get an ME/CFS or FM diagnosis from Mayo...you can probably be sure that you that and not something else.

 

[San Diego]

Were your results so unusual that he didn't understand them? Did you feel he was up on everything?

He was definitely not up to speed on anything more than the usual drugs. I don’t really fault him - he’s only one small piece of a system that adheres rigidly to evidence based medicine. Because of that, he likely isn’t really free to think outside the box and try new things.

I needed the Mayo to document my dysautonomia for several reasons. They did that, and I really didn’t expect much more ... unfortunately.

 

[Sue Stevenson]

@Rachel Riggs said "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)"


I love this. I want to write a novel about a worldwide group of ME sufferers who make plans from our beds about the next version of the world. We sort out many problems using creativity and plain common sense that the rest of the world can't access due to the relentlessness of busy life. The last quarter of the book the world kicks the greedy 1% out, a cure is found for ME, and we all pour ourselves into our new lives, and the world heralds us for our amazing fortitude and grace under immense suffering. We all get lauded for being awesome.

Wellness porn, I guess

 

[San Diego]

Could you give a little more detail? What's the name of the supplement? And what's in it? Thanks, so much.

Here it is on Amazon with some reviews.

Here is more information from the manufacturer.

I hope that is helpful.

@Rach. I'll add this since @San Diego is not well.

All you have to do is search in the main forim search bar above or google and you'll get a lot of your questions answered

http://www.cortjohnson.org/forums/threads/dr-diana-driscoll-and-vagus-nerve-pots-mcas.3556/#post-10022

Thanks, Who.

 

[Rachel Riggs]

@Sue Stevenson Wellness porn, indeed! I LOVE it - and can't wait to read it!

 

[IrisRV]

Wellness porn, I guess

Wellness porn! We don't read to experience our everyday lives. I'm all for fantasy and positive what-ifs in my literature.

 

[Issie]

Slight correction to Cort mention of my experience with Mayo. I went 3 different times. The first time was 3 weeks. Second and third time 2 weeks each. I saw over 18 different doctors and some multiple times.

My first visit ruled out a lot. And sadly my very last test is what DXd my HyperPOTS. I go to Mayo in AZ. It was before POTS was even a specialty in Mayo AZ.

The first neurologist didn't know a thing about POTS and tried to say I had somatazation. Unfortunately, she was the first doc I saw there. She tried to make it all in my mind. Sent me to a psycologist. The two of them were writing a paper trying to lump any with my symptoms into a psychological disorder. I wonder how many POTS people were wrongly DXd and left sadly disappointed with no help.

That same visit and my last test was an Electrocardologist and a tilt test with a very positive tilt table test for POTS. This was before we even knew subsets existed. (All types were tried on the same 3 meds. None of which worked for me.) After the very stressful and long 3 weeks, I decided to come back later for more test and follow up.

My next visit, Dr Brent Goodman, was now at Mayo and he was sent from MN to help with POTS. I had to fight to get reassigned to him and away from "that other" doctor. Thank goodness she released me. We had gone the rounds and neither of us wanted to see the other. So, Dr Goodman repeated the tilt test and did more test.

This was also before Mayo AZ was looking into Mast Cell Activation syndrome. I started presenting information to the immunologist there. Gave him a book of print outs with highlights.(Which he read , he had paperclips all through it.) Later my neurologist told me the immunologist had texted him and told him he had to get help in there to address this information and to do something about it. That's when Mayo AZ, sent down another doc from MN to address us POTS people with MCAS and help us. But I also showed with hypogamaglobulinemia, vitiligo and alopecia. This pointed to autoimmune dysfunction.

Around this time, many of us had FMS DX. I did, but felt there was more to it. I started asking about EDS (Ehlers Danlos) I got an older rheumatologist who checked me and I was positive. So not only was there FMS, but EDS. I'm not sure where one ends and the other starts as there is pain with both.

So after 3 visits and thousands of dollars, I felt I was sorted out. After the initial bad experience with the one doctor, as a whole it was a good experience and very beneficial. Not so much treatment but diagnosis.

However, there was more to my puzzle. Lyme and coinfections and Protomyzoa Rehumatica and mold. My doc for these is also in AZ - Dr Stephen Fry. Treatment for these things also addressed the autoimmune issues.

I'm much improved, though not completely well. But I see light at the end of the tunnel.

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.

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.

Just a quick tip on mast cell treatment that some don't know. If you use an H2 (Zantac), make sure you use an H1 (Allegra) with it. If you dont, the H2 converts to H1 and you have even more problems. GastroCrom may be enough of a stabilizer. You may not need ketotofin too. (I didnt). When nothing else helped my POTS, Mast cell treatment did. And beta blockers are one of the worst things to use if you have mast cell issues. They degranulate mast cells.

As for POTS and traditional meds used - I'm not in agreement with the meds used. I don't think the meds are following the science and what we long time POTS people are finding for ourselves. Listen to your body. Are the symptoms a compensation for a worse evil. If you block what the body is creating to compensate for what is happening - in the long run - you may actually get worse. I've tried "Everything", and the meds I settled on are not what the docs traditionally give. (Thankfully, I'm off everything but supplements right now. But, what I took was absolutely necessary when I needed them.)

Issie

 

[Issie]

See my post above. I added to it.

Issie

 

[lisapetrison]

Thanks for writing about this. It is a real problem.

 

[corinne]

Thank you Cort for including my experience in this blog.

Yes, in some ways I felt validated but when it came down to the nitty gritty I felt totally misunderstood. After two hours of consultation re my history and expressing the fact that I had been a Personal Trainer prior to illness and now I could no longer exercise w/o severely worsening my symptoms...well, how could that be ignored?... and yet it was! I never went back, also because when I asked them if they had sent a report to my doctor, Dr. Peterson, they replied, "we don't do that". WHAT?!!! It was reminiscent of a 'cult' to me. Even when they suggested a repeat MRI be done of my spinal cord they wanted me to drive the 100 miles to their facility to do it when all my previous ones were done locally. When I suggested that it would be easier for me to do it close to home, they seemed 'put off'.

All in all a disappointment that after 25 years, things hadn't changed a whole lot re the AZ facility, anyway.

 

[weyland]

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.

Out of curiosity did you see Dr. Jaradeh or someone else?