@theressa None of this has been my experience with the Mayo LC program.
1) I'm a woman so can't speak to this first issue, but I didn't see any evidence that only women were being treated.
2) I did not meet with a psychologist. I met with an M.D. who specializes in treating LC, ME/CFS, fibromyalgia, and POTS, in their Integrative Medicine and Health specialty group. This doctor has advanced training from the Bateman Horne Center of Excellence for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia. She spent over an hour with me and my husband, making notes and asking questions.
3) She recommended I see several specialists at Mayo and made referrals, particularly to a neurologist (I was already seeing a cardiologist there) and a gastroenterologist. The neurologist has ordered testing, including autonomic testing, sweat testing, a brain MRI, and neuropsych testing. She has also helped me with orthostatic/autonomic symptoms, provided a correct diagnosis of PPPD, referred me to their PT dept for treatment of the orthostatic and PPPD symptoms, and recommended ways to treat the cerebral small vessel disease and sweat issues. And she is scheduling follow-up visits with me.
4) I was told in advance about the tests I would be given.
5 and 6) Mayo's Integrative Medicine and Health group gives you a flyer in advance telling you that their job is to help you and your doctor(s) figure out what is wrong and how to help. They point out ahead of time that they will provide help with diagnosis and treatment options, but your local doctor has to handle the actual treatment and follow-up. The doctor wrote me a 12-page report in tiny print, addressing all the different issues I was dealing with (including some cardiac and gastric issues that were specific to me), and recommending many different treatment options for my doctors to consider and try.
They also provide 6 virtual visits with a LC wellness coach whose focus is helping you learn to live with chronic illness and improve your quality of life, and 3 virtual visits with a LC-specific nurse to handle follow-up, answer any questions or concerns you may have, and recommend continuing courses of action.
I have been super-happy with what I've gained from being part of Mayo's LC program. I've gotten the referrals I needed, and my doctors locally have taken the reports from the LC doctor and the Mayo doctors she referred me to, and have been able to use those recommendations to treat me. I highly recommend pursuing Mayo's LC clinic.
I've also worked with the LC clinic at my local university hospital, and I feel like Mayo was much more helpful. The one benefit I've had from the local clinic is that they have a physical therapist who specializes in treating LC patients, and she has been really helpful. But other than that, Mayo's LC clinic was much more helpful, despite being 12 hours away, and despite taking several months to get into.
Sounds like you had a different experience, which is great. Maybe my experience was terrible cause I am Black and it is proven that Black Americans are treated differently and worse than White Americans when receiving healthcare.
The Mayo neurologist I saw didn’t order any tests and complained that the medications that the lc clinic put me on were incorrect and causing my problems. He lectured me on the medications.
The gastroenterologist told me to take Metamucil 3 times a day and to have a colonoscopy. The Mayo colonoscopy gave me
Sepsis and I almost died. I was in the ER and local hospital within 12 hrs of the Mayo colonoscopy. My experience with Rochester Mayo was terrible. The insurance company had to assign a nurse to make sure that I got better care after I had sepsis. I couldn’t find a doctor, (mine had moved) so I paid $3,000 out of my pocket for concierge medical care.
Also, the research paper that Mayo doctors wrote about long covid is chauvinistic and blames women with long covid for having long covid.
The virtual appt with the psychologist was also troubling. They told me to use google to find a therapist. There was no follow up from Mayo.
PT also lectured me that I needed to get together with family. My family is 2,000 miles and I have to pay for flight, food, hotel, rental car, etc. to see them. I would love to see them more often, but it isn’t realistic. She didn’t even ask me if I had family nearby.
When did you participate in the Mayo LC program? What city did you participate in?
I am sincerely glad that you found the program to be helpful.
Warmest regards -