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

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 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 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.

My daughter was diagnosed with CFS in 2012 after a viral infection. She is alot better now, not perfect, but it took years to get better, and some people do not. There is no real medical treatment other than learning to manage your life and hopefully in time you will improve. Some doctors view it as psychological and that is nonsense. I suggest you and your husband read as much as you can. I will send the site you might find helpful separately. I think its ME/CFS.

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.

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.

Thank you for your time and response. Would you please tell me where your daughter was diagnosed, and how they determined it was due to a viral infection. My husband does most of the research, as hearing/reading how bad CFS can be, worst case scenarios, etc.. are detrimental to my recovery. Mayo Clinic advised this as well. Having a positive mindset is an important part of recovery. I really appreciate your time and the information you sent. Hearing more about your daughter's success story would be so helpful.

So my daughter, in 2012 got very sick returning from Belize, and lived in Florida at the time. I dont remember how she was diagnosed, but she was a patient of a well known researcher for awhile, Nancy Klimas. There are illnesses triggered by serious vial infections and I think this was one. They did alot of blood tests, but really it was her fatigue that probably nailed it. She was given various meds, one of which damaged her vagus nerve and led to gastroporesis. I remember in 2016 she was forced to spend time laying on floor, having no energy. Today she works from home, and is much better, altho she has ongoing muscle pain I believe. I think she once contacted Mayo and was rejected for an appointment. The most you can do I think is pace yourself. There is more research now fortunately, but no real medical treatment. It is not in your head as is frequently intimated. Do try to have a positive mindset and allow time to recover.