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.
#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.
- 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
- Nature therapy
- 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.
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