ETA: Dang! Way too long again.
Summary: I think remissions suggest that many of us have high potential for full remission with the right treatment.
For those who are uncomfortable with speculation... :Retro smile:
I'm speaking just from my family's experience; this may not apply to anyone else.
We have 3 PWCs in my extended family with somewhat different situations.
My uncle had slow onset probably initiated by a flu-like illness contracted during a visit to Tahoe during the outbreak. His ME/CFS was mild-moderate. He could work full-time but do nothing else. He is now in complete remission after 8 years on antivirals (and 2 years off them so far).
I had the classic sudden onset flu-like illness, recovered partially with several years of mild-moderate symptoms mixed about 60-40% with flares/relapses. With every relapse or illness (cold, flu) I got a little worse. By Jan of this year my condition was high severe/low moderate -- mostly housebound, couldn't do any housework without flaring, "napped" 3-5 hours most days just to function minimally. After about 6 mo of little improvement and some serious symptom worsening on Valcyte, I made a sudden turnaround and improving noticeably (by ME/CFS standards). I can see the possibility of remission over a number of years, but it's nowhere near a certainty.
My daughter (at 12yo) had the same sudden onset flu-like illness about a week after I did. She appeared to recover normally, but had occasional very, very mild flares. She would have a bad flare with a cold or flu, the magnitude of the flare corresponding to the severity of the viral illness. It appeared we could reduce the length and severity of the flares with 4-6 weeks of the full Pall protocol. Dr Lapp diagnosed her in Dec 2008 with ME/CFS in remission.
In early Feb 2009, at 16 yo, she got a chicken pox booster (live herpesvirus). She went into a bad flare from which she never fully recovered. Hasn't been back in remission for even a day since. She picked up H1N1 at college the following fall, followed it with pneumonia and was a complete mess by Dec 2009. From remission to moderate-severe in 1 year.
Valcyte (starting Jan or Feb 2010) gave her a substantial improvement fairly quickly (6-8 weeks) so that she was functional in college with a minimum courseload of easy classes and living at home. After 6 months of Valcyte and LOTS of rest she's doing fine in college living in the dorm taking a minimum courseload of engineering classes. She is still very careful and rests a lot, doesn't do any more physical exercise than she can help. I can see remission for her again within the next year barring a catastrophe.
So, I think remissions are possible for some patients.
I'm not convinced the illness isn't doing some
permanent damage. I think the young and the less ill seem more likely to achieve full remission.
For my family, the clues about remission seem to be related to viral infections. Or perhaps more specifically, to the immune reaction to viral infections. My guess is that each viral infection stresses the immune system so that it either upregulates thereby spreading the HMRV infection (if there is one) or conversely, stresses an already taxed immune system so that latent infections can reactivate and do their own damage.
I think periods of full remission are times when the immune system is managing to hold it's own, however briefly. This is good. Flares occur when the immune system can't handle the load and something -- HMRVs, EBV, Lyme, HHV-6 -- manages to reactivate.
Some of us live on the edge, where our immune systems are sometimes able to push everything back into latency (or something like). My daughter was one of those before Feb 2009. I think those people have the best chance of full remission.
Some of us have slipped over the edge and our immune systems never catch up. We live with chronic, possibly low-grade, infections that over time may do permanent damage. I suspect our immune systems may have even given up. We're likely the ones that get anything that goes around. I'm probably one of those. I pushed too hard early on and have spent too much time with something or other running amuck in my cardiac and nervous system tissue, I think. :sad:
My uncle never got really bad. I think his immune system had trouble completely supressing herpesvirus infections, but was almost
doing it so he may have only been suffering from the up-regulated immune system part. They may be the ones who don't get the colds and flus because their immune system is already running on high. I think they have a good chance at remission because their immune systems have kept the infections largely, although not entirely under control and so have not done much permanent damage.
There's my speculation, based only on my family, about what remission means with regard to treatability. I kinda hope I'm wrong, since I don't see high potential for full remission for me. However, if I'm even vaguely right, the fact that some people have full remissions suggest that many of us can achieve full remission with the right treatment