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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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During my remission I used to get what seemed to be viral infections like colds but without the runny nose or cough, preceded by the new symptom of inflammatory back pain. I'd be back in bed for a couple of days with the old ME symptoms but they would resolve over about ten days, then I'd have a period of being apparently completely well, then a "cold" would start up again. In my last year of "remission" I had 20 of these episodes with maybe a day of feeling normal between. An immunologist told me I clearly had a viral infection that was reactivating over and over (he told me to exercise on my one normal day between infections so that I'd have a reserve of fitness!). He said the lack of runny nose indicated that these episodes weren't new infections.
So, I suppose that a person infected with XMRV could, early in the infection, fight off a co-infection and not have any obvious symptoms (be in remission) for a period
Hi Tania - interesting that you got hit after your remission in a different way. My major symptoms (severe physical fatigue after trivial effort, poor concentration, PEM) have been the same pre- and post-remission but some have changed (I no longer have a permanent sore throat but I do have inflammatory pain which is clearly linked to my ME).
During my remission I used to get what seemed to be viral infections like colds but without the runny nose or cough, preceded by the new symptom of inflammatory back pain. I'd be back in bed for a couple of days with the old ME symptoms but they would resolve over about ten days, then I'd have a period of being apparently completely well, then a "cold" would start up again. In my last year of "remission" I had 20 of these episodes with maybe a day of feeling normal between. An immunologist told me I clearly had a viral infection that was reactivating over and over (he told me to exercise on my one normal day between infections so that I'd have a reserve of fitness!). He said the lack of runny nose indicated that these episodes weren't new infections.
XMRV is supposed to be very slowly replicating and hence not to change its spots much so I wonder if it could rehit. Also, being a retrovirus, I am confused about how it could go into remission at all - once it's in your DNA, surely your immune system has no defence?
I don't know about this stuff though, hence my asking the question - I'm hoping those knowledgeable people on the board might have some ideas!
The discussion seems to have moved onto epidemiology (no problem, it's v interesting and I've been wondering about that stuff too) but does anyone have more thoughts on my original question? :Retro smile:
Interesting sentence: (I no longer have a permanent sore throat but I do have inflammatory pain which is clearly linked to my ME).
I have had mine for 7 years, as long as I have been ill! I do not see the sore throat thing mentioned much!