Dr David Tuller: Mayo Clinic Treatment Plan Cites “Deconditioning,” “Perfectionism,” and CBT

Countrygirl

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https://www.virology.ws/2021/12/19/...DLH5MdzUcJZ4UtwSoWcIT3pu2NJDROOq_9dN3ZukvOSDM

Trial By Error: Mayo Clinic Treatment Plan Cites “Deconditioning,” “Perfectionism,” and CBT
19 December 2021 by David Tuller 6 Comments

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.
**********
ASSESSMENT / PLAN
#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..............
 

xena

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I don't doubt that this is incredibly infuriating to read considering the dearth of real treatments for this condition.

i will say though as someone who has had this for the majority of my life (14 years now) and rounding the corner from "moderate' to "mild" and "able to work" after many years that now "Deconditioning,” “Perfectionism,” and CBT" are relevant to me and helpful to address but so were virus, fungus, parasites, diet, mold, methylation, nutrients, lyme, detox (extensively). I do think I partly came down with this illness due to being perfectionistic but also because my gut was screwed up and I was living in a moldy house with several predisposing genes. So I find the best approach is one that addresses both the "biological" as well as behavioral/mental aspects.

I've seen in mild cases and some moderate, some do recover from deeply addressing their stress response / trauma healing/ lifestyle choices. this might be part of why institutions keep hammering away at this- because it can help in some cases- although obviously it's not appropriate for everyone and quite harmful to push exercise on other and neglect their physical issues.
 
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wabi-sabi

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this might be part of why institutions keep hammering away at this
They keep hammering it because they have no real treatments and want to blame patients for continuing to be ill.

Stress reduction is great, but it's a treatment for, well... stress, not a treatment for illness, whether that's a mental illness or a physical one. I've done loads of stress reduction and have gone from mild to moderate and now almost housebound. If healthcare would just stop trying to pass this off as a treatment we'd all be farther along with research and real treatment.

It will be a good long while before I forgive the Mayo for all the harm they have done in this regard.
 

lenora

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I've been in a volunteer capacity for other organizations over the past 35 years. Never, not ever has the Mayo come through for any neurological condition, not just ME. If you have heart problems, go there....but don't go for anything that has any neurological basis. I do think it is trying to change its approach, but that may be a long time in coming and has a lot to do with the physicians involved.

There are other clinics that specialize in our illness....go to them. Even my own neuorologist says the Mayo is useless for neurological conditions. I brought it up with him as I found many people over the years whose insurance would pay for the Mayo....and yet they may as well have gone to a local physician. My own sister was one such patient and I found another clinic that was better suited to her needs.

Also bear in mind that clinics can and do change over the years. Often it depends upon a certain Dr., Professor or the like as to what an attitude is. Check this out before you make an appointment....yes, it's hard to get a good answer, but it certainly beats going just anywhere without a recommendation. Yours, Lenora.