By David Tuller, DrPH
Last week I admonished the US Centers for Disease Control for including fuzzy language about exercise in its new package of “information for healthcare providers.” The way the Mayo Clinic deals with the illness it calls chronic fatigue syndrome is an excellent illustration of why it is so important for the CDC to stop fudging and get this right.
Mayo has long advocated graded exercise and cognitive behavior therapy, or what it calls on its website “cognitive training,” as key elements of its treatment plan. Here’s how Mayo’s website explains the mechanism of graded exercise: “Gradually increasing the intensity of your exercise over time may help reduce your hypersensitivity to exercise, just like allergy shots gradually reduce a person’s hypersensitivity to a particular allergen.” The hypothesis that patients are experiencing a form of hypersensitivity to exercise akin to an allergy is just that—a hypothesis. It is unclear why Mayo appears to be presenting it here as fact.
Of course, this hypothesis appears to have become a preferred explanation for the purported positive effects of GET and CBT. Now that the “deconditioning” theory championed in the PACE trial has essentially been discarded, members of the CBT/GET ideological brigades have adopted other justifications for continued adherence to their favored treatments.
Last summer, however, the CDC removed its recommendations for the two therapies from its website. That major step appears to have had no impact on the guidelines at Mayo. Lisa Alioto, a lawyer and Mayo patient as well as vice president of the Minnesota ME/CFS Alliance, recently organized a meeting to discuss the issue with a member of the clinical staff at Mayo involved with ME/CFS treatment. Here’s a summary of her account of the meeting, which also included a colleague of Alioto’s from the alliance:
The nursing manager for the department that we met with was compassionate and open to what we said and the resources we gave to her. We spent about an hour together. Our objective was to add myalgic encephalomyelitis to the name and remove GET & CBT from treatment recommendations. We told her about the March clinician summit in Utah and the unanimous vote to:
1) Recommend the use of myalgic encephalomyelitis, which uses a different ICD code (defaults to Post Viral Infection) than Chronic Fatigue Syndrome (lumped into ICD for Chronic Fatigue);
2) Stop recommending GET and CBT.
The Mayo party line: “GET and CBT are there to stay because everyone needs some kind of exercise (even if just walking around a table).” She was open to trying to change their website to Graded Activity Therapy (GAT), but we noted that people would read right through that as GET. I pushed to have it removed from printed materials they give out and what they teach to ME/CFS patients. Not happening…
• They claimed that people showed great improvement due to exercise in their one month program; when asked if they followed up with them to see how the patients were after they left, she said they did not do that.
• We were given a packet of research articles to back up their protocol.
• Every offer we made, and contact with a list of experts we brought, was hit with unmovable force and a list of reasons.
• We indicated we could drive thousands of patients (and thus money) to them through our resources; however, she said they have more than enough patients now. We offered to set up an Unrest screening; not interested. We offered to bring in experts; not how it’s done there. We also shared personal tragic stories of several patients after they received Mayo treatment and how many more there were like this. In short, we highlighted that the Mayo is not trusted in this area and its reputation is being greatly tarnished and is spreading to other areas.
• As we wrapped up, she shared that she felt we were great advocates for these changes but that the current Medical Director was not interested in making any changes.
• Amazingly, she admitted to never hearing of Unrest, Jen Brea, etc. We shared how it’s on Netflix; however, during my Thursday Mayo visit I dropped off a thank you note for her time, along with a complimentary copy of Unrest for her and the department. A little extra incentive to watch it. (Still shocked she had never even heard of it!)
During the meeting, Mayo provided a packet of abstracts or descriptions of more than a dozen articles, plus a summary of the 2007 NICE guidelines, to back up its recommendations. The main article cited by Mayo to support the use of graded exercise is the 2017 version of the Cochrane systematic review of exercise therapies for what Cochrane, like Mayo, calls chronic fatigue syndrome. This analysis is marred by multiple unacceptable flaws and its conclusions cannot be taken at face value; for one thing, besides the PACE trial, other studies included also suffer from being open-label trials using a broad case definition and relying on subjective outcomes.
The fact that Mayo has chosen to present this systematic review as prime evidence for the application of these misguided treatments demonstrates why Cochrane must get its act together and address this blotch on its reputation. Those who now grudgingly acknowledge that PACE is problematic still have Cochrane to fall back on. That needs to change.
Beyond that, the selection of studies overall in this packet is seriously problematic. The biggest surprise is the presence of the Lightning Process study, which flagrantly violated ethical and methodological principles. I didn’t realize that Mayo would view a woo-woo combination of neuro-linguistic programming and life-coaching to be a valid treatment approach. The packet also includes some biopsychosocial studies, along with studies about fatigue or chronic fatigue—neither of which, of course, is the same thing as chronic fatigue syndrome. The presence of these studies suggests that Mayo does not tend to recognize the difference between chronic fatigue and chronic fatigue syndrome and seems to be recommending the same treatments for both.
The Institute of Medicine and National Institutes of Health reports, both of which found ME/CFS to be a serious pathophysiological illness, are not highlighted in the Mayo packet. Neither are recent studies suggesting impairment of cellular energy metabolism. The main physiologically oriented material included is research positing the existence of “central sensitization” of fatigue pathways—an interesting but unproven hypothesis related to the also-unproven concept of exercise “hypersensitivity” similarly being promoted by Mayo.
Interestingly, PACE itself is not included, nor is the PACE reanalysis in BMC Psychology from Wilshire et al, which demolishes the reported findings. (Disclosure: I’m a co-author of that paper.) Yet for some reason Mayo has included the PACE authors’ response to Wilshire et al. This response repeats some of the self-serving and laughable non-responses the PACE authors have long offered to deflect legitimate questions about their study. It also seems odd to include a rebuttal but not the paper being rebutted.
And while citing the NICE guidelines, Mayo is ignoring the CDC’s change in recommendations. No one reading the Mayo website would have a clue that the country’s lead public health agency had specifically removed GET and CBT more than a year ago. Moreover, the NICE guidelines are of course in the process of being completely overhauled, in large part because of widespread concerns about GET and CBT. This salient fact is not mentioned in the packet of information from Mayo.
In highlighting the NICE recommendations without mentioning either the ongoing overhaul or the CDC’s own updated take on the treatments, Mayo seems to be actively withholding information that patients have a right to know–a disservice to those who trust its reputation for integrity and medical excellence. Mayo’s lack of transparency in this instance demonstrates why ME/CFS advocates are pushing NICE to suspend the current guidelines pending the introduction of the new ones, or at least to slap them with a warning label. Mayo should not be citing them without mentioning their current provisional status.
In short, Mayo is using a very biased selection of articles and ignoring other relevant information and research to support its deeply flawed and discredited approach to treatment. This apparently willful obtuseness is inexplicable, unacceptable and anti-scientific. It is also harmful to the interests and wellbeing of patients—not only those who attend the clinic but others whose treatment is influenced by the disinformation on Mayo’s website.
9 responses to “Mayo Still Champions GET”
Hope you’re well and thanks so much for your efforts. It is clear from what you were told that the nursing manager you spoke to is not the decision maker and had no power to change everything, only to protect the Medical Director from being bothered. So what I’m wondering is whether there is anyone yet at the NIH or prestigious researcher from a big name university medical center who would be willing to call and talk to the Medical Director. Someone who would no doubt get a call back due to their prestige. It is also possible that the Medical Director is not the one who makes these call but just the person who implements them so you might need to go higher in the organization. Also, with Mayo clinics around the country now, I wonder if they are autonomous at all so that this could be approached through a side door. I think we need to be willing to say that some exercise is encouraged up to the level of an individual patient’s current ability, that the patient has to listen to their own body. But the graded exercise or activity does not work because in ME/CFS patients, there is no way to build up stamina by building up slowly overtime because the problem is not deconditioning, it is the inability of the patient’s cells to produce energy. If this effort doesn’t work, it will be time to warn patients through all of our resources to avoid Mayo clinics. For their safety. You can let them know we’re doing that but frankly I don’t think they’ll care. We’re not the easiest of patients. Unless they are actively recruiting ME patients, my guess from my experience is that they would prefer not to have to see us. But if they are promoting care for ME, then we may need to go after them publicly. But first, let’s try to reach their decision makers. If they won’t talk to our people, then perhaps a petition to them presented publicly would be helpful with lots of patients asking for their help. On a personal level, I try to move when I can and do bed exercises as possible because the deconditioning issue is real. So they have a legitimate concern about not letting us become more deconditioned than necessary. Exercise good, as possible without payback. Graded exercise or activity, bad. Perhaps letting them and others know about Dr. Klimas’s exercise program would get them past their concerns about avoidance or no exercise at all. I know we’re bummed by the PACE recommendations but we do still need to address deconditioning as best as possible. And best to you!
I was a patient at mayo recently. Their program is recommended for a variety of conditions involving chronic pain and chronic fatigue, whether it’s the syndrome or otherwise. Central sensitization syndrome seems like a waste basket diagnosis. There was a book on the psychologist’s shelf titled ‘the myth of chronic pain’.
There was a video presentation and the thinking behind their cbt program seemed to be nearly identical to the brain retraining programs. It’s very convincing for those that are desperate, and the program having Mayos reputation behind it make it seem especially appealing. They claimed a 40% improvement rate.
The program was strongly recommended by several Mayo doctors.
I think we owe it to the universe to pass on the message about Mayo through social media. A friend of my family was urging me towards them at one point years ago, on grounds that they are wonderful for everything. Luckily I was not persuaded.
I went to Mayo Clinic in 1986 for help with the lingering stages of an illlness I had for 3 years, but had no idea of what I was dealing with. After spending a week at Mayo, I still had no idea. To this day, Mayo is still way behind the experts in dealing with CFS/ME. They do have great expertise in dealing with many illnesses, but certainly not with CFS/ME. Thank goodness that I became aware of Dr. Daniel Peterson to help me with my illness.
“We indicated we could drive thousands of patients (and thus money) to them through our resources; however, she said they have more than enough patients now.”
Thank you for challenging Mayo’s advice. As a former ME/CFS patient at Mayo advised to embrace GET/CBD and unsuccessful- I have stopped all donations to Mayo. While they may not want more patients maybe they will notice less donations.
Another reason the Mayo clinic’s position is a problem is that it is the listed source for the info box on Google’s search for “ME”.
Google’s PDF states –
“Treatment consists of self care
Treatments include graded exercise therapy and cognitive behavioural
therapy. Other medication or therapies may provide symptom
Antidepressant: Prevents or relieves depression and elevates mood.”
Been thinking about how to approach fixing this with Google… any ideas?
Link to Google’s response to search for “ME”
Link for Google’s PDF
Mayo has always been staunchly anti-science regarding contested illnesses like ME. 🙁 Hopefully, one day they will help patients…
Another problem with Mayo is that Google’s Knowledge Panel (that box on the right hand side of the page when your search results are displayed) relies on Mayo as its only named source of information.
Google “ME” and some of what you get in that box and in the attached PDF…
“Treatment consists of self care.
Treatments include graded exercise therapy and cognitive behavioural therapy. Other medication or therapies may provide symptom relief.
Antidepressant: Prevents or relieves depression and elevates mood.
General Practitioner (GP): Prevents, diagnoses and treats diseases.
Clinical Psychologist: Treats mental disorders primarily with talk therapy.
Psychiatrist: Treats mental disorders primarily with medications.”
There is a “Feedback” option. I haven’t pursued that yet.
Good way of telling, and pleasant post to take facts regarding my presentation subject matter, which i am going to present in college.