The Mayo Clinic is where people with difficult to diagnose and treat diseases go. The Mayo Clinic’s Rochester Hospital was recently ranked the best in the world. For many ME/CFS and FM patients, though, the Mayo has been more a place to stay away from than to visit.
Two recent visits to Mayo Clinics by ME/CFS/POTS patients suggest that some things have changed and some remain the same. Find out more in:
There is much left unsaid about the Mayo Clinic. I cringe when I read these negative stories. I’m one to say that while it was an expensive ordeal that took a year to recover from, it was worth it. Had we not taken my husband / patient there, we would still be searching for a diagnosis. The Mayo has been the ONLY place that has offered a diagnosis and a plan to deal with it.
It has been 10 years since he first started getting so ill it impaired his work and his life. It has been 6 years since he has held a steady job or been able to keep up anything for more than a month. We’d seen so many doctors that it seemed almost pointless to go to the Mayo and pay out of pocket. But we had to do something.
On our arrival at the Scottsdale Mayo in 2014, the first doctor we saw said he was our Dr. House and he wouldn’t disappoint us. It was a 3-week ordeal of constant tests and evaluations. The doc came up with one thing, said it wasn’t the whole story, and he’d keep researching. And then — we saw the Director of Integrative Medicine – an Expert in this area. In our 3 hour appointment, we discussed in detail several areas and came away knowing what he had, what to do about it, and how to create an at home lifestyle around it.
If not for this one doctor, the trip would have been a futile effort to drain us financially for nothing. The good doctor warned — it would take a lot of patience, but if we followed his advice, there would be a turnaround and an ability to function at least better.
So far — our doctor’s advice has been the most well thought out, thorough, and honest of anyone. So far — this doctor has the best ideas that are also the most cost effective — including not chasing after each and ever pop remedy that someone touts.
While I am sad to learn that the majority of folks who follow the popular CFS / ME pages hate on the Mayo Clinic, I am going to stand by my doctor. Why?
2 years ago, my patient was nearly bed ridden and definitely housebound. He’d had a couple remissions, but he was always down with so many symptoms I don’t want to print them. The hard charging IT expert could barely answer a question some days…
Now — exactly 2 years later — he just left on his wheelchair to catch a bus to town. He has rarely been forced back to bed once he recovered from the Mayo ordeal. He can to some degree fend for himself even though he still needs his caregiver / advocate. He can’t be independent. He still can’t work and can’t make a commitment — but he can function well enough that he doesn’t need a babysitter.
The doctor was right. In this case, doing what he said plus learning to listen to his body and honor his energy level is exactly what worked.
I’d also like to say that not everyone deals with doctor’s disrespect. In our case, all docs agreed something was wrong but not one of them could figure it out locally. But the bottom line, folks, is that just because the doctor doesn’t know what it is or how to help, they aren’t always disrespecting you. They may just not know~! It’s easy to misread something — and it has always paid off to ask. I recall asking one doc if — since he didn’t know what else to try and was giving up — if he was saying it was psychological. His response: God NO! I just don’t know.
Ask them what they mean if you feel they are being disrespectful. They may not know. They may have awful bedside manners. But most are trying to do their best.
Please don’t misunderstand – at least where I’m concerned – I LOVE the Mayo Clinic! And it’s only because I think so highly of them that this outrageous stance on GET/CBT as being the best approach to CFS is so disappointing! Hence the title – A Mayo LOVE story 🙂