As a long time Mayo patient, I felt the need to comment. I was diagnosed with ME/CFS, and later fibromyalgia, at Mayo, and have had exceptional and compassionate care at the clinic in Rochester. My experience probably differs from the stories in your post for two key reasons.
First, I have had the good fortune to have annual comprehensive physicals at Mayo for a number of years. As a result, I had a personal physician I was able to contact when I first became ill, who was already familiar with my medical history and with me as a person. This physician diagnosed me with ME/CFS, and I am confident that were it not for his attention, I would never have received a diagnosis from physicians here at home and that I would be far more ill than I am now. I am forever grateful. Second, I am a more recent patient – this summer will be the two-year anniversary of my onset. I am sure that increased awareness and knowledge of ME/CFS compared to that of earlier years was also to my benefit.
I was referred to Mayo’s Chronic Pain and Fatigue Management program for a three-day program. There I was diagnosed with fibromyalgia. My physician here was also very helpful – and honest. He told me that they really don’t know what is going on with ME/CFS.
Both of my doctors were very clear that the only currently accepted medical “remedy” for ME/CFS is graded exercise and cognitive behavior therapy. However, I was never given the impression that this would cure me, or necessarily that these would even have a positive impact. It was simply a statement that this is the current medical knowledge. And let’s face it – if anyone is looking for evidence based treatment for ME/CFS, the PACE trial was the only thing out there. It’s good that the PACE trial is being debunked, but I find it hard to fault clinicians for following the recommendations.
What I most appreciate about my treatment at Mayo is that every other health condition and symptom has been aggressively evaluated and ruled out. Other than ME/CFS and fibromyalgia, I am the picture of perfect health. I would rather have the honest and conservative medical answer that there is no cure, and very little that is of help, than be subjected to medication after medication. I think my health is better as a result of this conservative approach.
I was recently seen at the Auronomic Disorders Clinic at Stanford. I had the tilt table and other Autonomic testing. I was started on Florinef and told to increase salt to 4 grams daily along with 3-4 liters of water. I was told that my POTS was likely from deconditioning as I have "no nerve damage". Low blood volume or blood pooling were not even a consideration as far as he knew. He also did not seem to know about mast cell activation. But I got the diagnosis and treatment I was looking for. The Neurologist there said that he normally prescribes exercise for POTS! but that his colleagues in the CFS clinic have told him that this can harm CFS patients. Therefore, he said I should use my own judgment and do what feels safe to me.
I already notice an improvement in my ability to tolerate upright activity and recover from tiny bits strength training, after taking the Florinef for one month. I feel grateful that I have access to treatment where CFS is known, taught and researched.
@Lorelei Please note that my visit was really recent - I was there and received my diagnosis in July 2015.