I'm sorry. It's hard to get the "denial" letter. You may want to call and ask them how soon they're willing to consider another appointment request. I did that and they were able to tell me, at least so I'd know what to expect.

In my personal experience, after I had a denial, I was told I needed to wait a certain number of months (can't remember because I went a different route).

Others may have had different experiences, but I have a fibromyalgia diagnosis and central sensitization syndrome. I've been seen at both Mayo Rochester and Jacksonville. I am a patient at the Shirley Ryan AbilityLab in Chicago ("the #1 rehabilitation hospital in the nation" as they like to say--yes, ranked higher even than Mayo, at least in terms of rehab).

I found that Mayo's approach to chronic pain and chronic fatigue was too aggressive. I consulted with one physiatrist and two PTs, as well as the internist who handled my evaluation, and they didn't seem to be very knowledgeable about PEM because they all were advising aggressive and very structured pacing, which is...not recommended for PEM. Pacing is recommended and a first-line treatment, but with "symptom-guided" progressions. They didn't really seem to get that and implied I'm not getting better because I wasn't trying hard enough? It was odd.

I felt really uncomfortable with the apparent lack of recognition and understanding of PEM and the fact that different people experience central sensitization differently (at least with the providers I spoke with), so I can't really recommend them for that reason--too much risk of getting hurt. Maybe there are other providers there who would approach it in a different way.

Setting that aside, they very much emphasize their Pain Rehabilitation Center (PRC) 3-week program and "self-management." I know that it works for some (many here have raved about it), and obviously self-care and self-management is important, but their approach is just too aggressive and not transparent enough for me. Jacksonville has brief, 2-day educational treatment programs for fibromyalgia, POTS, chronic abdominal pain, Long COVID, and they probably have one for chronic fatigue too. I didn't find it all that helpful. The internist who diagnosed me with fibromyalgia--that was pretty much his recommended treatment plan, to send me to the 2-day program.

I live in Chicago, but my PCP treats a lot of patients with chronic conditions, including chronic fatigue, and when we were trying to figure out treatment, she told me she has multiple patients who have gone to Stanford and had such a positive experience they remained patients, despite the distance. Of course, that's a challenge, but figured I'd mention it for what it's worth.

I'm so sorry you received a denial letter. I'm not sure my care at Rochester would be different from Jacksonville, wish I could gain more insight before making that decision. I am also considering Stanford, you may want to consider that an option as well. If my budget were endless, I could go to multiple places.