Has anyone gone to Mayo Clinic to see a CFS specialist?

I'm sorry. It's hard to get the "denial" letter. You may want to call and ask them how soon they're willing to consider another appointment request. I did that and they were able to tell me, at least so I'd know what to expect.

In my personal experience, after I had a denial, I was told I needed to wait a certain number of months (can't remember because I went a different route).

Others may have had different experiences, but I have a fibromyalgia diagnosis and central sensitization syndrome. I've been seen at both Mayo Rochester and Jacksonville. I am a patient at the Shirley Ryan AbilityLab in Chicago ("the #1 rehabilitation hospital in the nation" as they like to say--yes, ranked higher even than Mayo, at least in terms of rehab).

I found that Mayo's approach to chronic pain and chronic fatigue was too aggressive. I consulted with one physiatrist and two PTs, as well as the internist who handled my evaluation, and they didn't seem to be very knowledgeable about PEM because they all were advising aggressive and very structured pacing, which is...not recommended for PEM. Pacing is recommended and a first-line treatment, but with "symptom-guided" progressions. They didn't really seem to get that and implied I'm not getting better because I wasn't trying hard enough? It was odd.

I felt really uncomfortable with the apparent lack of recognition and understanding of PEM and the fact that different people experience central sensitization differently (at least with the providers I spoke with), so I can't really recommend them for that reason--too much risk of getting hurt. Maybe there are other providers there who would approach it in a different way.

Setting that aside, they very much emphasize their Pain Rehabilitation Center (PRC) 3-week program and "self-management." I know that it works for some (many here have raved about it), and obviously self-care and self-management is important, but their approach is just too aggressive and not transparent enough for me. Jacksonville has brief, 2-day educational treatment programs for fibromyalgia, POTS, chronic abdominal pain, Long COVID, and they probably have one for chronic fatigue too. I didn't find it all that helpful. The internist who diagnosed me with fibromyalgia--that was pretty much his recommended treatment plan, to send me to the 2-day program.

I live in Chicago, but my PCP treats a lot of patients with chronic conditions, including chronic fatigue, and when we were trying to figure out treatment, she told me she has multiple patients who have gone to Stanford and had such a positive experience they remained patients, despite the distance. Of course, that's a challenge, but figured I'd mention it for what it's worth.

Thank you for your reply on my condition. I understand what you are talking about pushing yourself with PEM. I can't do much without a weeks long setback. How long ago was it you had dealt with Mayo on your issues?
My local Rheumatologist in Central IL is starting with a diagnosis of Post Viral Syndrome but I believe it's beyond that now. He recommended 2 Aleve in morning and 2 Aleve at night for 6 months to curb the symptoms but I have cut that in half and it's barely keeping it at bay. I have an office job and get through the day but that's it. I'm lucky right now compared to others I know but mine could get worse I realize. After para Influenza and Shingles last month it's gotten worse.
I went to my Hematologist yesterday to review my blood work and I have had clotting markers along with high ANA antibody numbers and Lupus Markers for 4 months. They don't think it's related and further Lupus test are negative... But she does believe I have CFS/ME. Also, yesterday Mayo Rochester got a hold of me from my Cardiologist and they agreed to refer me to their Rheumatology Dept. in December. I hope to move that up if possible but at least I'm going to find out what they can offer.
Thanks for your info on Shirley Ryan Ability Lab in Chicago and tip on Stanford. I have done some looking at them and Stanford does have a high reputation for my condition with youtube videos and I may consider them in the future.

I attended the 2 day clinic at Mayo Jacksonville for CFS, may I please message you with questions about your experience at Rochester?

I'm so sorry you received a denial letter. I'm not sure my care at Rochester would be different from Jacksonville, wish I could gain more insight before making that decision. I am also considering Stanford, you may want to consider that an option as well. If my budget were endless, I could go to multiple places.

Sure, no problem. I’ll keep an eye out for a DM. I actually didn’t attend the PRC program at Rochester though. There are some active members who have, but happy to share anything that might help!

I’m not sure the care at Rochester would differ much either, if they’d even see you… I’m not sure they would. I was only seen at two different campuses because I was seen for a different condition the second time at Jacksonville so I had a different entry point. I was also able to self-refer and schedule directly with the department I needed, which seems to be unusual.

The health psychologist now at Jacksonville who oversees all their 2-day treatment programs told me she designed the 2-day POTS treatment program. She may have designed the others in the same model? I’m not sure. But she told me she was at the Rochester campus originally and established these programs in Jacksonville when she realized there was a need. She told me this when I had my evaluation with her in order to get clearance to do the POTS program. She even gave me a copy of the Mayo Clinic Fibromyalgia book—which she wrote (Dr. Barbara Bruce).

This is kind of roundabout, but I had referrals for multiple 2-day programs, but she said I only needed to choose one because “there’s so much overlap among all the programs.” So I felt like I could extrapolate from that, that the CFS 2-day program was not too different from the POTS program I attended—only without the lecture on POTS.

This is just my opinion from being a patient at Shirley Ryan and having a PCP at another academic medical center who treats a lot of chronic pain and ME/CFS, but it seems to me that Mayo has a very particular and somewhat rigid philosophy when it comes to chronic pain and fatigue. It is evidence-based but it’s such a heavy emphasis on self-management and “lifestyle changes.” Or at least, that was my experience. This wasn’t a good fit for me because I’m more of a, “This is a multifactorial problem, so I need multifactorial solutions!” They also really minimize medications. I don’t want to be on medication but I’ll consider options if they’re reasonable. For example, my neurologists have brought up off-label uses of medication they’ve found to improve fatigue in MS and TBI that seemed worth for me to consider. I could go on and on about how conflicted I feel about Mayo’s mass-marketed chronic pain/fatigue approach >_< . I’ve really struggled to reconcile with my experience.

I totally know what you mean though—I wish they would be more transparent (!!!) about these programs and clinics so it would empower us to be able to make more informed decisions. How do they expect people to put blind faith into these programs just based on the Mayo brand? I actually gave them very specific feedback about this, in regards to the 2-day treatment programs because there is zero publicly accessible information (unless there’s something new) about them. Even after I was an established patient and had referrals and was expected to choose which one(s) I wanted to do, they had no handouts, no sample agenda, nor even a blurb to describe what’s covered. There was no one I could even talk to about it except for very generic and vague information.

I ended up jumping into the 2-day POTS program (that’s the one I chose out of all the referrals) blindly because I was desperate, like a lot of people are by the time they make it there, and then felt frustrated because expectations weren’t clear or managed well. I learned things, but it wasn’t what I expected or hoped for.

I was first seen at Mayo Rochester in 2017? Can't quite remember... And later, I was seen at Mayo Jacksonville in 2023 with an evaluation through the EDS Clinic.

At Rochester, I was referred to Rheumatology because I had unexplained, persistent tendon pain that was suspicious for an inflammatory arthritis, no biomarkers but a family history of autoimmune conditions, and a small fiber neuropathy diagnosis. Rheumatology coordinated my workup, and collectively unfortunately misdiagnosed me, or missed my diagnoses, depending on how we want to look at it.

They concluded there was "low suspicion" of an inflammatory (autoimmune) arthritis and concluded I had musculoskeletal pain with what was then called "chronic pain syndrome." It's now more widely known now as central sensitization syndrome I think. I already knew that because my Shirley Ryan PTs had identified the central sensitization, and I improved but still had pain that didn't respond as expected to treatment.

If you're not familiar with central sensitization (I wasn't at first), it's when pain changes how your brain and central nervous system process pain signals. If pain is an alarm system, the alarm system becomes extra sensitive and keeps going off disproportionate to the stimuli (I think of it as the car alarm that's too sensitive). It's exacerbated by stress, whether it's psychological stress or stress from the environment.

The Mayo team was really insistent there was no other explanation for my symptoms, and the treatment they push for it, for all types of chronic pain really is their Pain Rehabilitation Clinic (PRC). It's centered on the idea that the pain we feel is influenced by how our brains perceive threats--and that is totally true, and I don't disagree. But I just could never get comfortable with the lack of transparency, rigid structure, and rigid approach to PT I'd experienced at Mayo.

My instinct was that the story my brain was telling about pain was only part of it; I thought there was something else going on, and there was, and my other conditions aren't something that just get better without the proper medication, pacing, and physical therapy. So the Mayo team's insistence on CBT, yoga, guided meditation, diet, exercise, etc. as the way out of my chronic pain actually made my conditions worse because it (a) delayed treatment and (b) made me feel bad about myself because I had been doing all those things for years before it was trendy, and I still wasn't getting better.

At Rochester and at Jacksonville, I tried to communicate to the physiatrist and PTs I met with that my local care team at Shirley Ryan was already well-versed in central sensitization and chronic fatigue, and we had identified a framework for pacing that worked for me, but I got a lot of push-back, which never sat well with me. It felt like their way or the highway.

It turned out their conclusion was wrong because in the years afterward, I got diagnosed with seronegative spondyloarthropathy (an inflammatory arthritis that affects the insertion points of the tendons and has no biomarkers), POTS, and hypermobility spectrum disorder (HSD, though some think I may have hEDS).

That's how I landed at the EDS Clinic on the Jacksonville campus, and that's a whole other ball of wax and a very long story. The EDS Clinic always sets up a PT evaluation for their patients. POTS, chronic fatigue, and fibromyalgia among other things commonly co-occur with EDS. Their standard practice seems to be to refer anyone with those or any similiar conditions that are applicable to what they call "2-day treatment programs." There's a program for all the above and for other conditions as well. That's how I got [re]introduced to Mayo's approach to chronic pain and fatigue and even in a post-COVID landscape, I was shocked that PEM wasn't mentioned at all. I didn't attend the ME/CFS program so maybe it was mentioned there, but PEM isn't uncommon in POTS, and that's the program I did attend.

I'm not saying this approach or the PRC doesn't work; it's obviously evidence-based and works for a lot of people who can access it. There are a ton of success stories on this site.

It just wasn't a good fit for me, and the advice I was being given from multiple providers across disciplines about chronic pain and fatigue was consistent...and consistently inflexible and too aggressive for how I experience chronic pain and fatigue. I feel that can be dangerous; I've been hurt before.

Sorry, such a long reply >_< . Still, I think it could be worth seeing Rheumatology. I think you're right to consider what they can offer. Autoimmune, post-viral, and central pain syndromes are hard to diagnose. At the end of the day, they got it wrong and my local rheumatologist at Northwestern got it right, with less information than Mayo had. It could easily have been reversed, but I wish my Mayo team had listened better to me. Still, I think even knowing what I know now, I'd still have gone through with my evaluations. I just wish the past version of me was better informed and more confident about what works for me.

I hope whichever way you go, you're able to find the path that will work for you.

Thank you!