Extremely severe ME patient has big improvent during sepsis - but relapses

Arfmeister

Arfmeister

Established Member (Voting Rights)
Extremely severe ME patient has big improvent during sepsis - but relapses

From a Tweet from yesterday : I’ve seen some threads before on similar topics

I m interested in THEORIES and EXPLANATIONS of why patients improve after/during an infection??
  • It seems to happen quite regularly in the ME-community, although it seems incidental (vs with every infection)
  • I myself had similar but less drastic experiences at the end / after high fevers (less PEM, clear, headed, more stamina)
  • And how could the interferon signaling theory from @Jonathan Edwards fit in ?

Does this offer a piece of information to the ME puzzle?


Summary of the thread:

“During the acute phase with *high fever and very elevated white blood cells*, his usual ME/CFS symptoms drastically improved, despite being critically ill. Once the fever resolved and the infection was controlled, his ME/CFS symptoms gradually returned to baseline.
This pattern suggests his everyday ME/CFS symptoms may not be driven by excessive inflammation, but by the immune system being stuck in a dysfunctional or poorly coordinated state.
- During sepsis, the immune system is forced into a full response.
- Innate immune signaling, immune cell recruitment, and clear danger signaling dominate normal regulation.
- Notably, during sepsis his *leukopenia resolved and white blood cell counts increased*, suggesting immune capacity was present but usually not being properly engaged. “

Explanations ??
1. One possible explanation is **immune exhaustion or immune braking**. Severe infection may temporarily override inhibitory signals that normally keep the immune system in a low-function state.
2. Another possibility is **temporary suppression of viral activity**. Strong immune activation and interferon signaling during sepsis may reduce viral or viral-driven immune signals that contribute to symptoms.
3. There may also be a **brain immune component**. Severe infection can shift brain immune cells into a different state, potentially quieting chronic neuroimmune signaling.
4. Sepsis also forces a **full-body survival reset**. Autonomic, metabolic, and immune systems are tightly coordinated, which may temporarily correct underlying mismatches. infection may temporarily override inhibitory signals that normally keep the immune system in a low-function state.

5…. Interested in other theories / explanations…… ?

 
Last edited:
poetinsf said:
I wonder how they know his ME/CFS drastically improved while he was critically ill. Hard to imagine him doing dishes or moving furniture while being critically ill with sepsis.
Click to expand...

I have asked something similar in the thread. I presume he was not hospitalized but low grade sepsis, but it is a good question.

There is another response in a threat, which is quite descriptive.

Quote from other patient on the same X thread:
“Happened to me twice, I was already bed bound. Once with the stomac bug anf high fever. It lasted for a day or two, but I could suddenly walk, stand, sit, and felt much better despite fever over 38. And second time after a cold”
 
Personally I know that when I have an infection plus very severe my body sometimes to pump me up with adrenaline or something because ill be shaking and feel mentally way better and be able to be more active but as soon as the infection ends ill pay for it (get the PEM).

The first time it happened i thought my ME had genuinely improved.

Maybe this is the same effect but interepreted differently or maybe im blabbering about something completely different here.
 
Yann04 said:
plus very severe my body sometimes to pump me up with adrenaline or something because ill be shaking and feel mentally way better and be able to be more active but as soon as the infection ends ill pay for it (get the PEM).
Click to expand...
Yes, I can only speak of my own experiences, but it’s definitely not adrenaline.
Let’s see if you wake up when a fever has almost cleared, and you wake up, rested for once, I wouldn’t say it’s an adrenaline.

I’m really thinking of a temporary switch off / dampening / deviation of immune signaling to CNS (or some other ‘fringe theory’ )
 
Last edited:
Arfmeister said:
Yes, I can only speak of my own experiences, but it’s definitely not adrenaline.
Click to expand...

Me neither. I just get up and start doing things without thinking about it, but not in the driven, uncoordinated way I would with adrenaline.

I start working through small jobs that need doing but usually have to wait their turn: taking the rubbish out, getting a load of laundry on, properly taking out and washing the fridge shelf where I spilt something, noticing a rug needs hoovering, putting away shopping that's been sat in the hall since the supermarket delivered it a week ago.

It's very low key and ordinary. The only not-ordinary thing is that I don't have to stop after five minutes, in fact I can keep getting up and doing more of it for the whole day. Often two days.
 
I wondered if sometimes we are seeing the King Lear effect "But where the greater malady is fix'd, the lesser is scarce felt”.

Silly as it may sound, I do sometimes feel that life is easier when I have a more straight forward condition in addition to my ME. For example I occasionally get bouts of gout, but I know if I can avoid putting weight on the affected joint for two weeks it will go away. Having a pain that is temporary, demanding all my attention, somehow makes my ME less significant.

Alternatively, given we have what is for many a fluctuating condition, is just that people are pick up on inevitable random cooccurrences?

It does seem though that there are regularly reports of infections and vaccinations seemingly triggering improvement. But also the same things associated with easing symptoms are also in others associated with worsening symptoms. Is there any way we can quantify if this is a real phenomenon and what patterns are involved?
 
poetinsf said:
I wonder how they know his ME/CFS drastically improved while he was critically ill. Hard to imagine him doing dishes or moving furniture while being critically ill with sepsis.
Click to expand...
I feel like I need more information too

I mean it’s interesting given if they were very severe then I’m assuming issues light eating sitting toileting noise etc are obvious

But then the illness is PEM and also deterioration from the overdoing (normally cumulative over big periods of time but I don’t know either very severe particularly if they were having to do and be exposed to things much bigger than would normally be sensible)

And yes we have a nightmare because I can often seem to be talking but on a bad day I’m not there and thinking just learned to hold convo and literally have done that many times to that level when deeply fast asleep (and scared a number of people when they finally realised). When you are inside that difference they are completely different states of non-function but to an outsider who isn’t bothered they’d lie to themselves they don’t see the difference etc. Even if that state might be me having gone thru the wall and actually even iller than when I’m stuttering for words.

So I guess im saying I’m fascinated in more precision in what became possible for how long that hadn’t been before and when and if the payback was different or could be confirmed as either hitting or not hitting later given it must have been quite a situation to be noting things etc.

And I don’t know what treatment they might have had and when which includes both disturbance and adrenaline from it. And what other things happened in the body when it’s going thru sepsis.

It feels like they are right saying it’s an interesting scenario to note as a clue to understanding how the illness operates and just to note the full circle so if someone else goes thru it then people aren’t surprised eg if they are in hospital ‘seeming to handle x’ then crash back to normal and it’s not believed etc

But lots of questions as I try and imagine and think this through as a scenario.
 
Peter T said:
Alternatively, given we have what is for many a fluctuating condition, is just that people are pick up on inevitable random cooccurrences?
Click to expand...

No, not for me. Apart from the AZ vaccine, this pattern's only ever occurred when I'm starting with an illness.

I don't feel as if I'm going down with something, but nor do I necessarily feel better. There's just a quadrupling (or more) of activity capacity, which I often discover when I start doing things and find myself still on my feet an hour or two later.

That's really significant. You can't mistake being able to spend a day sorting out the house when normally you could manage an hour at your best, and even that has to be split into chunks and spread out over a whole day. Not only is the fatiguability drastically reduced, much of the OI eases too.

I often feel my energy collapsing again through the last evening, and next day I wake up with the symptoms of the illness. There always is one, but the level of improvement seems to be roughly the same whether it's a mild head cold or something really nasty.

Normal fluctuations are much more gradual, developing over weeks and months. If it's an increase in capacity it's not nearly as much as this, but it lasts longer. Viruses have never given me more than two days' improvement, but natural fluctuations are on extended cycles, lasting several months at least and often multiple years.

I don't know what's happening, but there's no doubt it is happening. The link stands out as clearly as that between activity and PEM.
 
Last edited:
Yes I also have noticed this. Tinnitus was for me a key predictor for the induction of my symptoms. When I was sick I had no tinnitus. The moment during my infection that I would get tinnitus , I knew this was a sign that the viral infection would go away. Every single time.

I believe that this happens because infections induce Heat Shock proteins
 
‪I have very severe/ extreme m.e & had a severe kidney infection as a result of kidney stones &was In hospital for about a week. The doctors were a bit off at start, but after the bloods came back said “oh you were quite poorly weren’t you” , so there were markers of bad infection, but for me then, no m.e symptom boost at all , function was probably worse.
 
bobbler said:
I feel like I need more information too
But lots of questions as I try and imagine and think this through as a scenario.
Click to expand...

This is the extra information I can give about extreme severe patient X :
  • Physical and cognitive PEM near 0
  • Blindfolded and no phone at all 24/7 bar 1/2 messages a day
  • (which makes it difficult to ask him many questions and assess his current situation….)
Unsure if it was a real remission, as they had sepsis, so they were extremely ill with sepsis, but his words were ‘almost all my usual symptoms were significantly better’
  • Lasted about a week, after sepsis went away
  • Currently he has returned to baseline
  • (maybe some new issues after sepsis, but unsure if they will be temporary)

PS: I am planning to collect more quantitive & qualitative data patient experiences on this phenomenon of ‘infection-induced temporary improvement/remission ME CFS symptoms’
 
Arfmeister said:
I m interested in THEORIES and EXPLANATIONS of why patients improve after/during an infection??
Click to expand...

I know Akiko Iwasaki has discussed this somewhere... on twitter I think. Discussed might be too strong a word. She mentioned her theory / thoughts on it, tentatively, and that it needs study. But if I got the gist right something like the immune system was distracted from it's usual operations by the new infection.

I've experienced it, and it happened with a very mild cold rather than a serious infection, which felt so... incongruous... such a mild illness seeming to reverse an utterly miserable more severe one, at least temporarily for a week or so.
 
I got the “fever effect” every time I got a viral infection that is bad enough to cause fever. It persists for 2-3 weeks after the infection has resolved. It’s a slight but noticeable improvement in symptoms. It usually starts during the incubation phase before I even know I’m sick. I will notice I’m feeling unusually well and then come down with flu/covid in a couple of days. The first time it happened I was very severe. I noticed I was able to look at my phone screen without discomfort and my mind felt more clear. I could sit up for longer. My RHR skyrockets whenever I get an infection but I’m absolutely sure it’s not just adrenaline because I feel the positive effects after I’ve normalized and I don’t get PEM as I would if I was wired and overdoing it.
 
Having spent several months learning about transcriptional programs of immune signaling, one straightforward possible answer is just that infection involves multiple cytokines and signaling pathways being triggered at the same time, many of which work to regulate eachother. [Edit: for example prostaglandins, related to fever and pain during infection, negatively regulate interferon signaling]

So if ME/CFS is caused by one or two of those normal infection-induced signaling pathways operating indefinitely without the normal stimulus, having an actual infection all of a sudden brings all those regulating factors back into play (at least for as long as the pathogen sticks around to induce those other pathways).

I never made much sense of the “one infection distracts from another” theory
 
This might be a similar to me/cfs remissions during pregnancy second trimester, where there is immune quesience to allow the fetus to develop without assault by the host immune system. Post sepsis, there is also an immune tolerance phase, increased suppressive cells and reduced pro-inflammatory cytokines like IFN-y and TNF-@.
 
You must log in or register to reply here.
Back
Top Bottom