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

I went to Mayo's Jacksonville location for CFS. Has anyone been to their Rochester location to see their CFS specialist?

Hi, @iamwell, I'm tagging @welchllb @suzanne2 and @uldiver who I believe have been to Mayo Clinic for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I'm not sure which location.

Will you be moving your care to Rochester?

Hi, I’m not sure. I wanted to compare and see if there is a difference in the care/program, etc.. for CFS in Rochester compared to Jacksonville.

Thank you 😊

I have been to Rochester but they didn't delve into my CFIDS/FM that much. I went mainly for gastrointestinal issues. I have wanted to come back for that but haven't been able to. The people I spoke with seemed to understand my symptoms and the issues I am living with.

Some general websites for M.E. / Chronic Fatigue:
https://me-pedia.org/wiki/Welcome_to_MEpedia
https://www.meaction.net/
https://solvecfs.org/

Thank you, I'm hoping to find out a little more about the CFS treatment approach at the Rochester clinic versus the Jacksonville one which is where I went.

Thank you I have been seen for CFS, just having a hard time finding more information about the Rochester clinic and it's been frustrating 🙁

I assume you've seen this information:
- Fibromyalgia and Chronic Fatigue Clinic in Minnesota, Mayo Clinic https://www.mayoclinic.org/departments-centers/fibromyalgia-and-chronic-fatigue-clinic-minnesota/overview/ovc-20485870

I have, thank you so much for your time and help. I am just really frustrated, and was hoping to find more specific answers about the CFS specialist/treatment at the Rochester clinic, but have had no luck. I was diagnosed with CFS at the Jacksonville clinic, and went through what I think is similar (or exact) to the Rochester clinic's "self management sessions." My husband contacted the Rochester clinic because they have a CFS specialist (Jacksonville doesn’t), and we both feel I may benefit from seeing one. The Rochester clinic did accept me as a patient. My husband expressed to the Rochester scheduler that we did not want to incur all of the expenses that traveling to their location would require (including medical) if it would be no different than what we learned at the Jacksonville clinic. I feel that is a valid concern. The scheduler in Rochester said I would not have been accepted for an appointment if they didn’t feel they had something beneficial to offer me, but that is all they will tell us. When we were at the Jacksonville location, I asked them about seeing a CFS specialist (not necessarily at Mayo), and I was told that I might get more information, but the treatment would be the same. So here we are wondering if we should spend more money (which is already tight since have not been able to work) based on conflicting information/basically a gamble. My husband pleaded for just one tele-medicine appointment with the CFS specialist in Rochester to find out more information; just enough information to see if we should make the trip. Jacksonville clinic did this for us, the Rochester location will not. We aren’t asking for a comprehensive visit, just enough to help us determine what we should do. When you are a person struggling to feel well again, this doesn’t feel just, and is frankly heartbreaking. If you know anyone else I can contact that would be a blessing. Thank you.

I am a long covid sufferer and have CFS now and PEM. I can’t answer your question about Rochester but I am going to travel to Jacksonville for covid issues. May I ask who did you see there that diagnosed CFS? None my docs in home state are familiar with it. If I can get diagnosis in Jacksonville I will travel to see a specialist in Rochester.