By David Tuller, DrPH
The renowned Mayo Clinic in Rochester, Minnesota, has a poor record when it comes to ME/CFS. It has a history of pushing the graded exercise therapy (GET) and cognitive behavior therapy (CBT) approach outlined in the now-discredited PACE trial. These interventions were based on the notion that the symptoms were perpetuated from a mish-mosh of deconditioning mixed with unhelpful beliefs of having an organic disease. I have previously written about Mayo here and here (and I think in other blogs I can’t find at the moment).
In recent years, there has been significant erosion in the dominance of the GET/CBT treatment paradigm. In August, Mayo Clinic Proceedings, a prominent journal sponsored by the medical center, published an in-depth clinical guide to management of ME/CFS, which specifically recommended against the GET/CBT approach and offered a range of suggestions for symptomatic relief. The journal does not represent Mayo Clinic policy, but the article should carry some scientific and moral weight with clinicians at the center.
So far, not much has changed, judging by the experience of Bobby Alexander, from Spring Grove, Minnesota. Alexander, 51, stopped working as a finance professor in 2017 due to his ME/CFS. In May, he attended a Mayo-affiliated health center in nearby Caledonia. Here’s what he wrote me about that visit:
“I went to the local mayo clinic in May 2021 and the Primary Care wasn’t familiar with ME/CFS, so he pulled up “Ask Mayo Expert” and read it, and it recommended CBT and GET. I gently pushed back on it. The following is my local mayo doctor’s note regarding our discussion:
‘He has extensive knowledge on chronic fatigue syndrome. In fact when I brought up Ask Mayo Expert Chronic Fatigue he said that the studies and the information I discussed with him were not accurate and they are based on some studies that have been invalidated…We discussed cognitive behavioral therapy and that is part of his knowledge base over mine on the fact that it has not been helpful; I do not really know anything about specific treatments for chronic fatigue on what works and what does not.‘”
Several months later, Alexander visited the main Mayo campus in Rochester. With his permission, I am posting his assessment and treatment plan below.
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#1 Chronic Fatigue Syndrome/Systemic Exertional Intolerance Disorder (SEID)
- · Mr. Alexander meets the 2015 Institute of Medicine criteria for chronic fatigue syndrome/systemic exertion intolerance disorder.
RECOMMENDATIONS:
- Overall, Mr. Alexander‘s presentation is consistent with chronic fatigue syndrome/systemic exertional intolerance disorder.
- I suspect this patient is profoundly deconditioned; would benefit significantly from paced exercise given his level of deconditioning. I have made him referral to physical therapy and occupational therapy for this reason.
- I think he would benefit substantially from participation in our fibromyalgia and chronic fatigue treatment program. I strongly recommend cognitive behavioral therapy, ideally to be practiced in conjunction with a pain therapist, to target his fatigue. I have also placed a referral for stress management.
- Ultimately, I suspect he will benefit from our pain rehabilitation program; however, I think that at this juncture he may be too deconditioned and too fatigued to be a good candidate. I would recommend he work with his local team to find CBT and physical therapy. After six months of this, he may be a reasonable candidate for PRC. This order can be placed by his PCP.
- I advised Mr. Alexander complete the Fibromyalgia and Chronic Fatigue Treatment Program, which is our 8 hour self-management program that focuses on cognitive behavioral approaches, stress management, sleep hygiene, balanced lifestyle, moderation, energy conservation and graded exercise. He agreed to proceed with the program.
- Integrative Medicine options
- Paced breathing
- Biofeedback
- Meditation
- Nature therapy
- Acupuncture
- Yoga/Tai Chi
- Supplements that may provide benefit in fibromyalgia patients include:
- Ginseng 1000 mg (1g) twice daily
- Vitamin C 1000 mg (1g) twice daily
- Probiotics/prebiotics may be helpful
- Dietary options
- The Mediterranean diet has been helpful in several pain conditions
- The Mediterranean diet has been helpful in several pain conditions
- Cognitive Behavioral Therapy (CBT)
- Can assist with a variety of symptom management and a more adaptive approach to disease process.
- Can help with mood disorders which can worsen fibromyalgia symptoms
- The following websites may provide information for psychotherapists practicing cognitive behavioral therapy
- Optimizing sleep.
- Recommended “No More Sleepless Nights Workbook,” by Peter Hauri.
- Sleep hygiene
- Bed is only for sleep or sex
- No electronics 1 hour before bedtime
- Bedroom should be cool, quiet, and dark
- Consider white noise
- Try to wake up and go to bed at the same time daily
- Avoid daytime naps
- Avoid caffeine later in the day
- Avoid daily use of Sleep Medicine
- Melatonin can be considered for daily use
- Do not focus on falling asleep
- If not asleep in 30 minutes, get up and go to a different room until you are sleepy again
- Insomnia unresponsive to the above may require referral to a sleep specialist.
- Cognitive behavioral therapy for insomnia
- Sleepio App. It instructs in sleep hygiene, relaxation techniques, cognitive and “stimulus control”
- Physical Therapy
- Occupational Therapy
- Should the above measures fail, some may benefit from an intensive rehabilitative approach which is provided in the three-week Pain Rehabilitation Program here.
WHAT IS CHRONIC FATIGUE:
The underlying issue is central sensitization which is a central nervous system response to heightened stress that amplifies sensation markedly. Cells in the central nervous system become more responsive to multiple stimuli and antinociceptive (anti-pain) pathways malfunction. The net result is an increase in pain and sensitivity to a variety of peripheral stimuli, including physical exertion.
Personality traits developed when younger determine how one copes with present life. As adults, such individuals often show tendencies for people-pleasing, perfectionism, and a strong sense of responsibility. Although this can make one an ideal worker, it comes at the cost of being physically exhausting and serves as a source of great frustration when symptoms prevent expected performance. Oftentimes, these individuals when faced with significant trauma including but not limited to major medical illness, surgery, death in the family, chronic work stress, and pregnancy serve as sensitizing events and catalyze the development of central sensitization syndrome.
We also reviewed the concepts of moving from a diagnostic and acute treatment strategy to rehabilitative approaches for his symptoms, including lifestyle modifications that are a core component of these rehabilitative strategies. Studies have demonstrated that slowly progressive incremental physical reconditioning and cognitive behavioral retraining are most effective at improving chronic fatigue.
At the end of our visit, I asked one of the RNs in the Fibromyalgia Treatment Program to discuss some of the elements of central sensitization with the patient as well as logistics of our treatment program.
Total visit time greater than 90 minutes, with over 50% spent counseling with the patient and coordination of care activities described above.
Comments
18 responses to “Mayo Clinic Treatment Plan Cites “Deconditioning,” “Perfectionism,” and CBT”
90 minutes? The poor patient must have been beyond exhaustion and utterly incapable of responding to this drivel.
I am heartily sick of the term “sleep hygiene” and the assumption that we are at fault for the sleep problems. I stopped going to doctors for anything related to ME/CFS years ago.
Since this doctor referred to SEID, why didn’t he follow the recommendations in that document? They do not recommend exercise nor CBT. What kind of research are they doing?
Typical Mayo isn’t it? I think David has before now used the correct terminology for this sort of thing… hasn’t he? Doesn’t ‘piece of crap’ fit? Sounds about right to me.
What a pile of dribble… From an ex advanced Personal Trainer, Sports Therapist and Triathlete. I worked like a 90 year old pace to try and get my fitness back after obtaining ME after bouts of viral meningitis. The results were from mild ME I went to severe after trying to gain some basic fitness. Yet again no one’s listening to the experts in us patients. Too many millions of us saying the same. When will our voice be heard?
This is obsurd , dismissive and not current in treatment plans at all.
Central sensitization is here misdiagnosed and used innappropriately to shape management advice for ME CFS, which typically has a primarily immunological nature involving triggers associated with infection and abnormal inflammatory responses to exertion.
This along with the rest of the advice, which appears not to be based in understanding of the realities of ME CFS, does not recommend the Mayo clinic in question for ME CFS patients, in my opinion.
Would suggest this also may inform longcovid patients who may also have an immunological condition and should take note and avoid.
I hope that Bobby Alexander knows that the patient community is behind him 100%. I appreciate Bobby sharing his experience. This assessment is not only enraging it is utterly ignorant of even a basic understanding of post exertional malaise.
There are no studies I’m aware of that support a central sensitization model for ME (or “CFS”), though I’m sure plenty of opinion papers full of hopeful theorizing. That Mayo Clinic of all places puts this out as factual is mind-boggling and speaks to some deeper issues regarding how they arrive at their treatment decisions.
I admit I couldn’t even finish reading this. I visited their CFS Clinic in 2020 and the trauma is still too fresh. This hits a little too close to home. I’m so, so sorry that patients are not getting the support they need. My condition absolutely worsened on bad advice before I knew better. And in addition to MECFS itself, I am now legitimately suffering panic attacks and disabling fear of doctors & asking for help. Vulnerable people are being harmed and someone needs to be held accountable.
This is disgusting. The people who developed this program at Mayo are just as disillusioned and harmful as the PACE authors. The first give-away was their mangled use of the term suggested by the IOM committee “systemic exertion intolerance DISEASE” into “systemic exertion intolerance DISORDER.” That tells you right there what they think of ME/CFS. One didn’t need to read much further to tell where this was going. It is far easier to teach old dogs new tricks than to teach these docs and associated health care personnel anything about the true nature of this disabling disease. They don’t know what to do about it, so they make stuff up, and that gets them off the hook of providing supportive care to these patients. They can simply shuffle them off to therapists and into programs based on their false theorizing. It doesn’t matter to them that they are thereby harming people. When will doctors face reality and demand the research needed to truly provide answers for these patients instead of prolonging and enhancing their suffering and this intolerable situation? I despair.
You have to love a profession that has to rewrite people’s actual medical history with made-up life stories based on not knowing them, listening to them, no facts, and no qualification to be making such judgements to convince themselves they are not the dumb ones.
It’s almost .. vindictive, when you read the fore story of the patient inadvertently showing up the lack of knowledge the doctor should have known. Is there any other circumstance someone would visit another professional correctly for an issue that they have (not about their personality) they should be able to medically treat, and instead for the individual to irrelevantly and randomly, with no qualification in this area decide to subjectively fling these personality slights at them instead of having read-up on the area they should be expert in?
On this basis the patient would probably have received more scientific and appropriate knowledge from the receptionist at their local dentist. Or ‘I don’t know’ from the janitor would have been more professional and ‘within bounds’. At least neither would be asking for payment as if they had received professional advice from an expert in the area. It’s like going to an expensive hairdresser to sort a bad dye-job and them instead telling you that you are a slapdash hedonist oversharer (also nonsense terms but no less than the tropes above are in terms of scientific psych) who needs to behave yourself more and expecting to charge you for a non-existent hairdo. Except it’s worse because he’s offered things that cause harm on top of that.
Have they no self-awareness of what they are actually doing? How are they so misled?
In place of (given all the actual facts from their area out there now) doing their job and looking up the medical science they should know and understand.
And in a sensible world the doctor would be embarrassed and realise they’ve just spouted nonsense and gone outside the bounds of their expertise, but I can only guess he has been ‘ordered’ not to look up the science on the subject?
Because even laziness would say reading the Mayo Consensus should have taken him less time than providing a fake personality assessment that he wasn’t qualified to do (and isn’t even really how personalities are described anyway – what happened to the ‘5 factors’ model?)
It could be the ******* virus at work (On The Origin of Assholes).
I’m crying reading this & all the comments. I feel so seen & understood! I’m currently waging a social media shame campaign against Mayo & have a viral tiktok – check it out my handle is EfCovid19. I want to talk about your experience/ this piece in a tiktok – is that ok?
Thanks for using your energy to share this!
“Mr. Alexander meets the 2015 Institute of Medicine criteria for chronic fatigue syndrome/systemic exertion intolerance disorder.”
This raises the question as to whether the 2015 IOM report is having any real world impact on patients getting adequate care. I am aware that in the last few years very little has changed for the majority of patients when they seek healthcare in mainstream settings.
I (and many others) were concerned, based on the process used to write the report, that the IOM was going to maintain status quo due to lack of specificity about the reality of myalgic encephalomyelitis. The criteria and treatments offered by the IOM report fall far short of what the experts offer in the ME International Consensus Criteria and the International Consensus Primer.
This real world experience is a good example of how the IOM has not made the impact many hoped.
A broad criteria created to cast a wide net, by definition, has to rely on common elements that are seen in a wide spectrum of patient groups. CFS-Fukuda did the same thing and the result was completely inappropriate treatments for those who fit the ME ICC. It looks like the IOM also misses the mark in helping people with ME.
For those not familiar with the difference in criteria between the ME/CFS-IOM & the ME-ICC see info here: https://www.me-international.org/understanding.html
This is a fixable problem. We have excellent information for medical practitioners written by ME experts in the ME International Consensus Primer. It’s heartbreaking to know we have an existing solution to move patients into better care while we wait for research to finally get the answers we need.
We will get where we need to go eventually. The truth will win out in the end. The question comes down to which tools are going to get patients what the need the fastest way possible. How many of us can wait any longer? #PwME4ICC
On the basis of this, surely every doctor would be unable to work because they’d be immobilized by CFS due to their own personality traits – https://www.bmj.com/content/347/bmj.f6644? This is absurd, but perhaps caused by doctors existing in their own bubble with deeply ingrained cliched prejudices regarding the people who inhabit mere-mortal earth beneath them. Now that long-covid has arrived, and it seems to be doctors who are being particularly hard hit by it, maybe, just maybe, they’ll start to see this for what it is – the most appalling example of healthcare discrimination. But then again, maybe not – perhaps they’d rather condemn their sick, disabled colleagues (for being too perfectionist and too hard-working?) than challenge their own long-held beliefs. Will they ever get over themselves and come to their senses? It looks to me like it’s hanging in the balance at the moment.
I haven’t heard such nonsense since female hysteria and phrenology!
It reads like a kid who rushed through a book report on a Sunday night or recipe written by someone who has never cooked.
I started to get mad reading it but realized it was not even worth it.
Andrea,
Yes, please go ahead. Than you for your great work in bringing more awareness to the issue.
This series of letters promulgated by Prof. Tuller has proven extremely enlightening. I don’t have ME/CFS (Gott sei dank) but I do have progressive deafness, another disorder which conventional doctors have no medicine for. I am often blamed for my deafness, and lost my life partner because she could not stand my deafness (among other afflictions of old age). Being a molecular neurovirologist, I tend to favor an infectious etiology for ME/CFS, involving the vagus nerve. A person with ME/CFS could try various anti-viral or anti-bacterial drugs instead of behavioral or graded exercise therapies, but none has been proven to work. Recently, a Dr. Glenn Rothfeld has been advertising on the Internet a method he calls the “Immunity Pump”; one of its many ingredients is Transfer Factor, a component of mothers’ breast milk which was used pre-1900 and then forgotten about with the rise of modern medicine. Another possibility, in the case of bacterial origin, is the Marshall Protocol, also available on the Internet. Treatment consists or alternating rounds of antibiotic and Benicar; the antibiotic suppresses most but not all of the bacteria, and the Benicar then releases the resistant bacteria for re-exposure to the antibiotic, etc. Prof. Trevor Marshall and I believe that his Protocol will cure certain mysterious disorders such as Tourette’s syndrome and OCD which are now classified as PANDAS. Will the Marshall Protocol cure bacterial ME/CFS? I don’t know; progress is slow because Officialdom has not yet come on board. For the moment, individuals suffering from ME/CFS will have to be their own guinea pigs.