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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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Sick but never sick

Dysfunkion

Senior Member
Messages
344
Exactly. People with certain immune deficiencies like IgG deficiency get sick all the time. ME/CFS is not like that. It is actually one argument that could be made against chronic infections being the cause, at least for those of us who never get ill.

I actually got sick with most likely COVID recently after being unable to catch any virus for eight years despite being next to people that were ill. After being ill for two days, my ME/CFS symptoms improved on the third day compared to baseline, so I was able to get more things done than on a normal day while still recovering.

I sometimes wonder if going through a particularly tough cold or flu could unreset this ME/CFS condition and return the immune system back to normal permanently.

I can't remember the last time I caught a normal virus, my symptoms all fall on that viral spectrum when I get into PEM and I can crash to lower baselines if I'm not careful. It could be that the immune system is just preoccupied with a chronic invader and as a result gets stuck in a self defeating mediator loop. If instead of improving more after a virus like covid things just revert back after a window post-covid on day 3 doesn't that imply something like a chronic infection is causing that to happen from an immune system based mechanism? I mean I can't think of what else would off the top of my head.
 

Blazer95

..and we built castles in the Sky.
Messages
359
Location
Germany
I am very convinced atm the failure to mount a decent immune response on pathogens, leading to "never being sick" is dervied from an inbalance in 1,25-OH-vitamin d and 25-vitamin D

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JES

Senior Member
Messages
1,366
I can't remember the last time I caught a normal virus, my symptoms all fall on that viral spectrum when I get into PEM and I can crash to lower baselines if I'm not careful. It could be that the immune system is just preoccupied with a chronic invader and as a result gets stuck in a self defeating mediator loop. If instead of improving more after a virus like covid things just revert back after a window post-covid on day 3 doesn't that imply something like a chronic infection is causing that to happen from an immune system based mechanism? I mean I can't think of what else would off the top of my head.
But why is there then a window after acute infection when I and some other people with ME/CFS feel better for a moment? It seems to indicate to me that there could be some immune dysfunction going on in ME/CFS and when the immune system gets busy with an acute infection and gets past the worst of it, there is a momentary window where it won't generate the usual ME/CFS symptoms. If it was a chronic infection I wonder if those temporary improvements would happen at all.
 

Dysfunkion

Senior Member
Messages
344
But why is there then a window after acute infection when I and some other people with ME/CFS feel better for a moment? It seems to indicate to me that there could be some immune dysfunction going on in ME/CFS and when the immune system gets busy with an acute infection and gets past the worst of it, there is a momentary window where it won't generate the usual ME/CFS symptoms. If it was a chronic infection I wonder if those temporary improvements would happen at all.

Yeah it could even just be as simple in that area as an immune loop that never stops regardless of what is going on. On chronic infection after thinking about that I don't have an answer since infections can behave in so many different ways and vary even by what the pathogen is. Then you have other toxins you're exposed to every day and there's a lot of people with MCS like me. Even after the exposure is no longer present I still have the severe dysregulation, there's just so many ways immune dysfunction can occur which is where this condition can get so messy in managing it.

I've noticed in my case that I could actually modify that loop but with no real sense of predictability with anything that acts as a heavy immune modulator. Like recently I used micro doses of vitamin D3 to try to modify my state of things with some success based on the patterns of what happens when I'm exposed to it. It acted like a wild card but on the first small dose there would be a higher chance I'd get more energy and it would result in perpetual changes in my body's ability to produce energy. I managed to get out of the deeper end of moderate like this and escaped PFS (post finasteride syndrome, was about a year out when this pulled me out of the rest of it). So at least from my perspective modifying the chain reaction can profoundly change the situation and it's definitely a huge part of some cases but doing that reliably is a whole different story. But from recent experiences too I also know it's so easy to crash back down and I think another key to figuring this out is getting to why the body can't recover and why there is so much more environmental sensitivity with us. Modifying the immune loop doesn't mean too much when you can crash from just waking up and doing something completely ordinary and fall right back in. When you fall back in the symptoms can even be somewhat different and the rules of what can help or hurt might change. There is also more loops that can occur, the interplay between the immune system and nervous system is massive.
 

Blazer95

..and we built castles in the Sky.
Messages
359
Location
Germany
But why is there then a window after acute infection when I and some other people with ME/CFS feel better for a moment? It seems to indicate to me that there could be some immune dysfunction going on in ME/CFS and when the immune system gets busy with an acute infection and gets past the worst of it, there is a momentary window where it won't generate the usual ME/CFS symptoms. If it was a chronic infection I wonder if those temporary improvements would happen at all.
i had a short lasting remission when i had a hefty covid infection 2 years ago. so there is that :)
 

Wishful

Senior Member
Messages
5,994
Location
Alberta
But why is there then a window after acute infection when I and some other people with ME/CFS feel better for a moment?
If you study feedback systems, this effect is quite reasonable. Multiple feedback loops with different delays produce a complex mathematical equation. The output of such a system can show delayed spikes, oscillations and other such effects.
 

Blazer95

..and we built castles in the Sky.
Messages
359
Location
Germany
I seemingly caught my first common cold today in like years and for some odd reason I am celebrating it abit.

"Yay my immune system is activily fighting an intrudor and does something about it".

its odd but for someone with the never getting sick symptom its an odd relief.
 

belize44

Senior Member
Messages
1,731
I seemingly caught my first common cold today in like years and for some odd reason I am celebrating it abit.

"Yay my immune system is activily fighting an intrudor and does something about it".

its odd but for someone with the never getting sick symptom its an odd relief.
I understand that! Among all the dumb things people say to me after explaining about this illness, the prize winning one was that I should be grateful that I was never sick. Oh, sure. Real grateful.
 

Blazer95

..and we built castles in the Sky.
Messages
359
Location
Germany
Spoiler: be careful what you Wish for: 120bpm resting. 135bpm Standing. Jesus Christ a Common cold is Like the second world war when you have an Immune system THIS dysrupted.
 
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