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anyone try Mayo or Cleveland clinic?

Jessie~

Senior Member
Messages
401
Location
Michigan USA
I went to the Cleveland Clinic about 6 years ago. It was 7 months after I received my "CFIDS" diagnosis, but as is common, I had been living with it unknowingly for many many years prior to that. I did not go specifically to investigate CFS. I saw around 7+ different specialists about multiple chronic illnesses and health issues that I have, including CFS, to try to finally get a handle on what was going on with my body. I was very hopeful and excited to go there.

The specialists ordered a lot of testing, confirmed some of my other diagnosis', offered treatment options, etc. But every one of them completely ignored my CFS diagnosis. I don't recall that anybody brought it up at all. In fact, some of the treatment options they suggested for my other health problems were bad for my CFS. Unfortunately, as a result, I went home and also ignored my CFS diagnosis for years... I really didn't know much about ME/CFS, so I did not realize then that it was a bigger problem for me than most of my other health issues.

It wasn't until I joined this forum here at PR a couple of years ago that I started to learn and understand what I was actually living with, and how to cope, adapt, advocate for myself, etc. I am very disappointed that even after having a diagnosis, all of the specialists ignored it and would not address it. That caused me more years of harm on top of the years I had already been suffering but was undiagnosed.

Since that was years ago, I wonder if the Cleveland Clinic specialists would treat me the same today, or if they have made improvements. I also wonder if I had asked the specialists specifically about it and better advocated for myself regarding CFS, if I would have been treated differently or received better results from my time there.

Hopefully someone else here will have had a more recent and/or more positive experience.
 
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junkcrap50

Senior Member
Messages
1,325
Mayo clinic will not help you. They are still very traditional, conventional wisdom medicine. They are the best if you have textbook, established diseases, even rare ones. But ME/CFS, no.

souce: know two people who have gone there for CFS and lyme, respectively. relatives are on staff there. parent worked there.
 

Rlman

Senior Member
Messages
389
Location
Toronto, Canada
Mayo clinic will not help you. They are still very traditional, conventional wisdom medicine. They are the best if you have textbook, established diseases, even rare ones. But ME/CFS, no.

souce: know two people who have gone there for CFS and lyme, respectively. relatives are on staff there. parent worked there.

thanks so much for sharing @junkcrap50. i not sure if i have real cfs, wondering if have some rare illness. i wonder if they would be good at ruling out everything other than cfs?
 

Jessie~

Senior Member
Messages
401
Location
Michigan USA
Thanks for sharing your experience @-Jessie- . Sorry to hear it was not helpful for you.

To be fair, it was a mixed result. They did help with a couple of other health issues and also let me down with a couple other health issues. But I did get some benefits.

Example: One of the tests ordered helped me to finally know that after over 10 years of suffering painful symptoms, I needed to have my Gallbladder removed. No other previous doctors up to that point would order that test, so I went for years asking for help and not getting any, just because ONE test was never done to find an answer... More years of needless suffering, Arghh! :mad::bang-head::cry:

As I said in my previous post, they really let me down when it came to CFS. And that caused me more ongoing harm. But, I am glad my Gallbadder is gone and not hurting me anymore.

Maybe, if you think you may have something else besides CFS, your experience there would be different.
 
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Lalia

Senior Member
Messages
127
Location
Australia
Hey @junkcrap50 - I noticed Mark Hyman heads up the functional medical clinic at Cleveland Clinic. He claims to have cured his own medical issues with Lyme and/or CFS. Sounds a bit too good to be true to me, and he's looks like one of those "famous" functional doctors that are more brand than medicine. But curious to find out what your CC contacts think of him...?
 

junkcrap50

Senior Member
Messages
1,325
Hey @junkcrap50 - I noticed Mark Hyman heads up the functional medical clinic at Cleveland Clinic. He claims to have cured his own medical issues with Lyme and/or CFS. Sounds a bit too good to be true to me, and he's looks like one of those "famous" functional doctors that are more brand than medicine. But curious to find out what your CC contacts think of him...?

Sorry, but I was speaking only about Mayo clinic. I don't know anything about Cleveland Clinic. I've never heard of Dr. Hyman.
 

Dakota15

Senior Member
Messages
296
Location
Midwest, USA
@Rlman I live in the Twin Cities and visited the Mayo Clinic in MN in November of 2017.

If you'd like any specifics please feel free to PM me. Most of the anecdotal narratives listed above aren't far off IMO.

I would share that I've been emailing with the Research Department at the Mayo Clinic recently, and whether it's lip service or not, seem to be very open minded about looking at CFS/ME in a different light than the old school method it's been using. I know that isn't the greatest answer but theres definitely been some acknowledgement of wanting to know more - I was suprised to be transparent how they acknowledged the seriousness of it and even referenced Jen Brea's TED talk. I wouldn't be suprised if they became a player in research in the short future, but that's my two cents.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Another patient here visited the Cleveland Ckinic Functional Medicine Clinic and was disappointed. They seen to be severely understaffed for the demand they have.

If you can get in in a reasonable amount of time, be assured of 2nd and 3rd visits, etc. eith the same doctor, they do know their stuff and should be able to help to some degree. (I've seen my functional medicine doctor every 3 weeks throughout my illness, and we always have plenty to do and to talk about - its not a one shot deal...)

It would be wise to ask questions about what you can expect as a patient there.