Not suggesting that you do have CCI of course; just trying to come up with some theories that might explain these sudden remissions in CCI terms.
(Moving this from "How has the CCI news affected you" thread, seems more applicable here.)
@Hip you seem very knowledgeable so I'd like to direct another question to you, or anyone else who can chime in. I have a similar question that keeps coming up in my mind. I have long-term ME that leaves me bed bound at times, housebound at times (mostly), and other times I feel better and can do more. The times when I feel better, I can't find any clear cause and effect as to why. I have wondered how CCI might fit into this scenario... the waxing and waning of symptoms, the changes in type and severity of symptoms. I describe myself as a leaky bucket- as soon as one set of symptoms improves, another worsens. And on rare occasions, the stars align and I have periods when I'm better (though still not functional, very careful about activity). I have just come off of 2 years of mostly housebound, and in the last month or so I'm more functional, with less PEM (I don't hold my breath, though...). I don't go into remission, as
@Moof does, just have periods with better function and less symptom severity.
I am very interested in pursuing CCI/ AAI b/c I have always suspected structural issues, but my question is, how would this changing of symptoms apply to CCI? I have wondered if perhaps at certain times your body is better compensating for the instability than others? And secondly, if I were to get MRI scans done in a "better period", would they show CCI/ AAI/ other issues? It is during these times that I would be more capable of having the tests done, but I also wonder if it would be the best time to test. I have wondered if Jeff's and Jen's MRI's would have reflected CCI/ AAI if they had not gotten to the severe state they were in by the time they had them done.
Thank you for any input!