heapsreal
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Would the work published by Hornig et al earlier this year be relevant here?
“It appears that ME/CFS patients are flush with cytokines until around the three-year mark, at which point the immune system shows evidence of exhaustion and cytokine levels drop.” - Hornig
Most studies don’t distinguish between short and long-term patients. If testing for pathogen activation is based on immune response, it’s presumably going to be a very different story for the two subgroups. Wouldn’t this make attempts to generalise about immune activity and the pathogenic activity it indicates very problematic?
Perhaps this explains why long-term me/cfs sufferers with only moderate test signatures for viral activation may find antivirals helpful? If their immune systems are in a state of burn-out, the antiviral may be doing what the autoimmune system can’t. Subsequent testing might show little change in cytokine activation, even if the patient is feeling a lot better. ???
Sidenote: as well as routine PEM episodes, I sometimes get longer, slow motion crashes. I’ve just been through one lasting about three weeks. These invariably involve swollen glands. Viral?
ps. pls don’t shout at me if the above is nonsense! I’ve been following this quite demanding thread because it’s very instructive. My remarks are more an attempt to get to grips with this than assertions.
Make sense to me. I find my symptoms are different now after 13yrs compared to the first few years.
the last 12 months my insomnia isnt as bad although not perfect but im finding im becoming a more drowsy tired than a tired but wired, maybe a cytokine change.
i think your right about immune exhaustion . If i stop antivirals i get viral symptoms etc sooner after stopping than i once did and last time i took a break from avs was when i got shingles and still ongoing issues for last 5 months. So no av breaks for awhile .
Another thing I noticed with myself and others is increased sinusitis probably post the 3year mark. But thats just an observation .
thanks for bringing up the less than greater than 3 year study. Most of us can relate to it.