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.