Hey all, I'm new to this board. Glad to find it. I've had ME for 11 years and have almost constant flu-like symptoms. I have a question about the immune system. So, like many, my bloodwork is normal. Normal WBC, CRP and ESR are close to zero, everything else normal. I don't believe I have any persistent virus that my body is trying to fight off. Yet, I have constant flu-like symptoms. Oddly, I have not had a "real" cold or flu ever since I developed ME. I am home more than I was pre-ME, but I still go into indoor public places often, and someone I live with works at an elementary school and is always bringing home bugs. But I don't catch anything, at least I don't think I do. Do you think that the flu-like symptoms PWME experience are actually mounting an anti-viral response (against nothing), which might explain why some PWME report getting fewer or no real colds/flus? Maybe constant anti-viral activity nips viruses in the bud before they can manifest? Or do you think the flu-like symptoms are merely due a misfiring hypothalamus and there isn't actually any anti-viral response? I'd love to hear your thoughts, especially from those with a science/medical background.
This is exactly what I think is part of it. I cough, look “sick” but tell people it’s just a “fake” illness and they can’t catch it, I’m not infected. Although I did pick up a virus this week and am currently very infected and feeling sorry for myself!
It probably has to do with social distancing imposed by MECFS. You definitely stay home much more than you used to if you have MECFS. I used to get cold several times a year, but I rarely got one since MECFS. And I had flu only twice in 15 years, once when I was traveling and the other when my then-wife brought it home. Oh, and COVID from a motel stay while I was traveling in 2022. Social distancing works, believe or not. As for the immune activity, Colombia U study saw it hyperactive for the first 3 years and then hypoactive as if it got burnt out.
@Aspen this matches my experience. No classic cold symptoms such as cough, sore throat and runny nose. Although the ME flares up and I get a strange sensation in the face as if a cold is trying to break out. Numerous bugs brought into the home including Covid by family, we have 4 grandchildren and my husband sees them all regularly. I don’t see it as a consequence of social distancing. I have just assumed my immune system is constantly overacting. No abnormal standard bloods. Although elevated plasma viscosity. Infectious onset ME 12.5 years. My mum also a pwME has always had the full cough and cold experience. She is milder though.
It's a very interesting question. Is there constant alert signalling in peripheral tissues like muscle or is it purely central in hypothalamus. One thing that may be worth noting is that some cytokines and cell surface receptors get 'painted' on to tissue matrix. TGF beta, which is the cytokine perhaps most repeatedly found to be different in ME, is routinely painted on to elastic fibre fibrillin where there is a TGF beta binding protein integral to the fibre. These pained on cytokines may act a bit like those flashing road signs that flash red when you do 32 miles on hour and green for 27 miles an hour. So tissues can be 'alert' without actually needing to have any specific lymphocytes present.
Hi, sorry to hear of your situation. Unable to say for sure if it is the same as mine, but I hope there is no harm in discussing comparisons. Your observations of no infections are interesting but this is why I am concerned about subtypes as I very definitely have recurring viruses. Some produce characteristic symptoms as well as fluey feeling, some just produce the fluey feeling in a cycle of immune response resulting in inflammation as well as ongoing ME malaise with PEM. Not all viruses I get become recurrent but those which do seem to compete to trigger my immune response which suppresses the other recurrent viruses as well, so the period of the immune cycle has shortened over 37 years, from 32 days to about 6 now as the dominant virus has changed over time. (My first recurring virus has been rediagnosed by PCR multiple times btw, so verified viral recurrence.) This would appear superficially to be a different condition from the one you describe and it has acronyms such as MECFIDS (ID stands for immune dysfunction) or ACAI (atypical chronic active infection). However some of these viruses do not produce detectable symptoms other than the inflammatory response and its period. I suspect one of mine may have been an enterovirus like Echovirus which cut the period down to about 17 days (with almost no characteristic symptoms except for obvious bouts of intercostal muscle cramps) and I suspect the latest might be covid, with a 6 day inflammatory cycle (with non specific symptoms of migraine, phlegm and phantosmia). If the cycle were any shorter and the virus did not produce symptoms then it would be much as you describe and effectively continuous. So your condition could be like mine, with a virus which does not produce detectable symptoms, or you might have a different condition, including an immune response memory effect, or even both. However I think a memory effect would tend to fade in the absence of further stimulation, so where the condition persists it seems likely there is something generating it imho, though I can understand people wondering if it could be a self reinforcing phenomenon like sepsis or anaphylaxis. My opinion is my own inflammatory response involves chronic activation of the innate immune system as it seems to hamper but not prevent new infections which bears comparison with your own observation of not noticing new infections. If it was adaptive then it would have little effect on new infections and being antigen specific would not suppress the other viruses competing to recur, as it seems to do. So my opinion is my adaptive immune system is not effectively clearing and suppressing some viruses and allows them to recur resulting in ongoing innate immune system activation which also seems to allow or encourage a brief adaptive response periodically. I wonder if defensive innate immune responses were even more strongly active, this might result in a situation like the one you describe. But I dont have the answer to that and can only speculate.
I think many ME symptoms are the result of the neurological responses normally triggered by immune activation. My ME has given me plenty of "absolutely feels like a flu" symptoms, but with the wrong sort of time frame for an actual viral infection, and also from type IV food sensitivity (t-cell mediated). The question is whether those chronic symptoms are due to chronic immune activation or from chronic "staying on" of the neurological response even without immune activation. The lack of clinical evidence of elevated cytokines (or other signals) seems to suggest the latter answer. the brain is complex and poorly-understood enough that I can easily imagine some feedback loop that keeps us locked into the "flu-like response" state. I rarely got viral infection before ME, and the few I did get usually passed quickly, so I don't think ME made much difference in my response to viruses. I know that some PWME claim to have more infections than before ME, and some have fewer, but I can't recall seeing a poll about whether the frequency and duration and severity of viral infections changed due to ME.
Yes, this is what I was trying to convey, but you worded it so much better. I'm thinking similarly. The lack of elevated inflammatory cytokines and other markers of immune activation seems to point to the latter. My gut tells me that the hypothalamus is getting activated somehow, perhaps due to signals from another part of the brain (amygdala maybe?), and has become stuck in some conditioned loop. I don't know if that's possible. The fact that I never get infections is throwing me off though. But maybe it really is just a matter of staying home more.
Very interesting, thanks for chiming in. So potentially, these alert signals from peripheral tissues could be triggering hypothalamic responses, without there being any immune activation? Either way, do you think there is any chronic immune activation in ME, or more so just symptoms that typically go along with immune activation (without there actually being any)?
I would prefer not to use terms like 'chronic immune activation'. The immune system is very complex and one cell's activation may be another cell's inhibition. I do suspect that abnormal signals are being sent in peripheral tissues - maybe especially gut and lymph nodes where lots of immune cells live, but I am open to all sorts of possibilities, including ones we have not thought of yet.
I was always the type to work hard but get some sort of “bug” if I went on holiday. Finish an intensive project then come down with a sore throat. Now, it happens after I go to the supermarket AND the post office. Maybe it’s always been the result of exhausting my system.
“I've had ME for 11 years and have almost constant flu-like symptoms. I have a question about the immune system. So, like many, my bloodwork is normal. Normal WBC, CRP and ESR are close to zero, everything else normal. I don't believe I have any persistent virus that my body is trying to fight off. Yet, I have constant flu-like symptoms. Oddly, I have not had a "real" cold or flu ever since I developed ME”. An interesting thread. That is basically how I feel with the flu like symptom’s worsening post exertionally and with a weird gap in between the two. I have been diagnosed with classic me cfs for over a decade. When people ask how it feels to have cfs basically I describe having covid without the severe sore throat as the symptoms. The whole thing is ridiculously confusing but it feels to me as if it is a signalling issue with either the brain or immune system.
That's one possible factor. Another is that healthy people experience lots of stressful or exhausting events, which could make them more susceptible to infection; PWME probably have much fewer such events. Hmmm, PWME experience chronic stress due to their lives being crippled, but maybe that has a different stress response?
I agree. I have friends whose lives were more stressful than mine in some areas—bringing up children, or navigating difficult relationships—but they didn't have to survive a 40-year working life with ME. We're all very different.
