Trial By Error: More Mayo, Please…

By David Tuller, DrPH

Two years ago, the Mayo Clinic referred Lisa Alioto, a patient diagnosed with chronic fatigue syndrome, to a three-day rehabilitation program–a mini-version of a multi-week program designed for those with a grab-bag of chronic pain and related conditions. These conditions, as listed on the Mayo website, include fibromyalgia, chronic back pain, so-called “nonepileptic” seizures, migraines, abdominal pain, POTS, chronic fatigue and so on.

In other words, Alioto was not offered a rehabilitation program specific for those with the illness known as chronic fatigue syndrome. She was lumped in with other people suffering from a variety of complaints.

As part of the three-day program, Alioto received a pamphlet called “Chronic Fatigue: The Road to Wellness.” The pamphlet demonstrates serious deficiencies in Mayo’s approach to chronic fatigue syndrome, at least as of 2016. The influence of the biopsychosocial approach is evident throughout. Alioto, a lawyer, is now vice president of the Minnesota ME/CFS Alliance and has recently lobbied Mayo to shift its approach.

The pamphlet often seems to conflate the symptom of “chronic fatigue” with the illness entity called “chronic fatigue syndrome.” For example, the pamphlet lists the eight symptoms besides “fatigue” identified in the 1994 Fukuda definition—but it identifies them as the “main symptoms of chronic fatigue.” In any event, the pamphlet declares that treatment recommendations are generally the same for chronic fatigue and chronic fatigue syndrome. So distinguishing between the two was presumably not considered a priority at the Mayo Clinic. The pamphlet does not mention myalgic encephalomyelitis, or ME.

Nothing in the pamphlet indicates that anyone at Mayo was keeping up with research developments and was aware that the GET/CBT ideological brigades were already losing ground by 2016—a year after both the National Institutes of Health and the Institute of Medicine (now the National Academy of Medicine) issued major reports on the physiological underpinnings of ME/CFS. Maybe some of it makes sense for some people with some kinds of fatigue or pain. But the pamphlet’s adherence to an outdated chronic fatigue syndrome model grounded in flawed research is disheartening, as is the failure to reference any of the biomedical evidence suggesting physiological dysfunction.

The materials recently handed out by Mayo to support its current approach to treatment suggest that nothing has changed since. Does Mayo also ignore the latest studies for the many other illnesses it treats? Does Mayo consider it ethical to not inform patients that the clinic is recommending treatments abandoned more than a year ago by the US Centers for Disease Control and rejected by much of the international scientific community?

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Here’s a section of the pamphlet that is called “chronic fatigue basics” but seems to be at least partly about “chronic fatigue syndrome” and not just the symptom of “chronic fatigue.” If Mayo can’t be bothered to distinguish between the two, it’s not surprising that other health care providers don’t think it matters.

“The cause of chronic fatigue is unknown. In people prone to chronic fatigue, it may by [sic] triggered [by] an infection, such as a cold or viral illness, or occur after a period of heavy stress. In many cases, however, chronic fatigue occurs gradually, with no clear starting point or obvious cause.”

“Chronic fatigue symptoms vary in type and severity from person to person and may come and go frequently with no identifiable cause. Unlike viral symptoms, which usually subside in a few days or weeks, the signs and symptoms of chronic fatigue can last much longer, sometimes for years. Some people recover completely, while others feel progressively worse.”

“Chronic fatigue can be frustrating as well as exhausting. It can drain your energy and interfere with work, school and family responsibilities, emotional health and personal relationships. Fortunately, there are ways to manage fatigue and regain control of your life. Other sections of this material explain treatment options and offer ideas on how to cope with symptoms so that you can enjoy an active, productive life.”

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And this is from the section on “diagnostic guidelines”:

“No specific test or procedure can confirm chronic fatigue or chronic fatigue syndrome (CFS). Diagnosis is based on exclusion, which means that your health care provider first rules out other diseases or condition that may be causing your fatigue and other symptoms…”

“To be diagnosed with CFS, you must have:
*Unexplained fatigue that persists for at least six months; and
*At least four of the eight primary chronic fatigue symptoms

If you do not meet the criteria for CFS (for example, a portion of your fatigue is explained by another condition), you may have chronic fatigue rather than CFS. Treatment recommendations typically are the same for chronic fatigue and CFS.”

“Although it can be frustrating not to understand the cause of your symptoms, further tests and examinations may not be the answer. After a thorough medical evaluation has ruled out serious underlying causes for your condition, managing symptoms effectively may help you more than additional tests.”

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And then there’s a section on “symptom-focused behaviors.” These behaviors include: “wincing or grimacing,” “groaning or crying,” “frequently talking about symptoms,” “moving slowly,” “rubbing the affected area,” “using protective devices (such as a brace, cane or splint),” “lying down,” “withdrawing from others,” “limiting activity.”

That seems to cover it. And here’s what patients are told about all this:

“These behaviors are a natural response to symptoms, but with repetition, they can become learned behaviors. Sometimes people use these behaviors to escape from symptoms or to seek care and support from others. However, rather than decreasing symptoms, these behaviors become a constant reminder. They consume energy that could be directed toward more productive activity, such as taking steps to manage symptoms…”

And then comes this pearl of wisdom: “Identifying your typical symptom-focused behaviors may help you substitute more positive responses…For example, rather than lying down or withdrawing when you are fatigued, try taking a walk or phoning a friend.”

Thank you, Mayo. It might be helpful to know that ME/CFS patients lie down or withdraw as a way to preserve energy and prevent relapses. They are likely to take walks and phone friends if they can, and they don’t generally need to be encouraged to do so. Just saying.

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In a section on “staying physically active,” patients are told that “regular physical activity is one of the healthiest decisions you can make.” The pamphlet advises them that exercise will “help improve brain function and decrease stress, anxiety and depression, making symptoms easier to control.” As a general rule, who could argue with this? But it has little or nothing to do with the illness under consideration.

Here’s what the pamphlet says about “graded exercise”:

“You may be wondering how you can possibly exercise regularly when, on many days, you are so tired you can hardly get out of bed. The key is graded exercise—an exercise plan that starts gently and gradually becomes more challenging. Graded exercise lets your body slowly adjust to increased activity while improving your physical fitness. Research has shown that gradually increasing exercise can improve chronic fatigue symptoms. In one study, 70 percent of participants with chronic fatigue reported feeling better after completing a supervised program of graduated exercise.”

“Following a graded exercise program can help motivate you on difficult days when you feel like doing nothing. And it can keep you from overexerting yourself on good days when you may be tempted to do too much.”

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And more of the same. This sort of willful ignorance on the part of leading medical institutions like Mayo, while not uncommon when it comes to the illness currently called ME/CFS by federal agencies, is nonetheless dismaying.

Comments on this entry are closed.

  • Carolyn Richards 20 August 2018, 5:40 pm

    If we had an email we could inundate them with research papers.

  • Art Mirin 20 August 2018, 5:57 pm

    Is there a venue in the peer-reviewed literature where Mayo can be called out, and is anybody making efforts in that direction? That might carry enough weight to sway Mayo. Of course clear refutal of GET by CDC would help.

  • Rivka 21 August 2018, 7:41 am

    As always, thank you David Tuller.

    Mayo has this wrong and needs to fix it.

    They are not alone, of course. A few years back, I went to one of Boston’s most prestigious hospitals. I saw a leading clinician at their Infectious Disease clinic. I told him I was so depleted that I was not able to function much and that it had been like this for two decades. I was homebound much of the time and living a near bedridden life. I was desperate for help. I asked if he’d be willing to allow me to at least try antiretrovirals.

    He immediately rejected that idea, and then before dismissing me from our very short appointment that I had waited a long time for, and that had taken me 2 hrs to drive to, he said: “Do you know the best treatment for CFS? Graded exercise.” And with that, he sent me out the door.

    I left crying. At that time, I could barely get to the appointment, and barely get home, due to my inability to put out any energy.

    (Adding insult to injury, the doctor told me this while he had his back turned to me. Note to doctors: It is disrespectful to talk to your patients when your back is turned.)

    At the time, the CDC still had GET on its website. But it is now 2018, and Mayo needs to get its act together, and so do the many other hospitals and clinics around the USA and globe.

  • Seesir 23 August 2018, 8:04 am

    So….how do we ‘lobby’ Mayo to change their tune?? We know the problems with their ‘non’ diagnosis/’non’ treatment. How do we ‘force them’ to ‘get with the program’ and update all facets of our illness??

  • Jamie Ashe, PhD. 26 August 2018, 10:24 pm

    @DavidTuller / PaceMan – I am a patient at the Mayo. Diagnosed by Mayo with ME. PM me for story details.