Improvement of ME/CFS during an infection

Yann04 said:
Reading this, I realise I don’t have what people are describing.
My symptoms feel worse during an infection, not better, my function sometimes improves but its quite attributable to being deep in the wired state.
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I mostly don't either. It only happened once with a mild cold several years ago that I can think of. Other localised infections e.g. this recurring skin infection I get, are associated with worsening for me more usually. (Though in this last case, I think the infection is a symptom of my immune system "going down" first rather than the infection causing of worsening, if that makes sense. I also get things like mouth ulcers at the same time & it all feels secondary to immune issue).
 
Yann04 said:
Reading this, I realise I don’t have what people are describing.
My symptoms feel worse during an infection, not better, my function sometimes improves but its quite attributable to being deep in the wired state.
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Every infection I have just felt worse, for the years up to the pandemic, with Covid itself also causing a monumentally bad crash to considerably worse still. I don't feel better on infections at all.
 
I have long wondered why the medical profession hasn't looked into this phenomenon more, as it would surely give insight into the nature of ME.

I had the very first version of Covid, before the jabs were brought out.
I was very ill with a high fever, but somehow I simultaneously felt fantastic. All my ME pain and brain fog just disappeared. I managed to read several books.
The effect lasted 3 weeks after the Covid symptoms disappeared. During that time I had extreme tiredness and wanted to sleep a lot, but it was significantly different from the fatigue of ME and far less unpleasant than ME. I foolishly thought that perhaps my ME was gone permanently. It wasn't.

Unfortunately only a person who has suffered from ME seems to be able to distinguish the difference between the"tiredness" experienced during a viral infection, and the crippling fatigue of ME. To doctors it just all seems to be lumped together as "fatigue". No doctor has been in the slightest bit interested when I have tried to explain it.
 
Spartacus said:
I have long wondered why the medical profession hasn't looked into this phenomenon more, as it would surely give insight into the nature of ME.
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We lack entirely the infrastructure to research transient phenomena associated with the disease. There is a reason CPETs are being used to induce crashes because zero infra exists to monitor patients and investigate events such as remissions or infections or anything else. Patients talk about these things but research and medicine has shown no interest. It would be a good idea to investigate it but we know medicine isn't going to and research has also shown almost no interest in investigating severe patients other than a few studies where home self sample collection was possible.
 
On a metabolic/mitochondrial level this might be happening:

Cells shift from stuck in hypometabolic state that is ME to the hypermetabolic state w sepsis. Hypermetabolic state causes cells to actually ramp up metabolism which feels better. In sepsis there are stages which occur very similar to ME

So from a Hypometabolic Phase:
- Mitochondrial Failure: Mitochondria become dysfunctional, leading to ATP production failure and energy crisis leading to a Impaired Immune Response, because of metabolically impaired exhausted immune cells

Virus / Bacteria ⇒ shift Hypermetabolic Phase: fight infection
- Energy Surge: Cells ramp up metabolism, breaking down fats, carbs, and proteins for rapid energy.
- Glycolysis Dominates: Immune cells switch to rapid aerobic glycolysis (Warburg effect) for quick energy, producing lactate.
 
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I've only noticed colds and Covid having the affect of what feels like the ME being switched off temporarily. From what I could gather from my Covid infection a year ago it was about the 8-10 day after infection when I noticed the ME brain heavying back in again. I spent two days feeling shocked and reminded once again at what I have had to live with the last 30 years.

It is interesting that it was a nasty cold that caused my onset ME and I am now thinking something must happen around that 8-10th day, something goes wrong, ME switches on. I also think that there is a lot more to it than that in that there was already disturbances and getting ME could be a roll on from that. So there could be a number of steps beforehand.
 
Arfmeister said:
On a metabolic/mitochondrial level this might be happening:

Cells shift from stuck in hypometabolic state that is ME to the hypermetabolic state w sepsis. Hypermetabolic state causes cells to actually ramp up metabolism which feels better. In sepsis there are stages which occur very similar to ME

So from a Hypometabolic Phase:
- Mitochondrial Failure: Mitochondria become dysfunctional, leading to ATP production failure and energy crisis leading to a Impaired Immune Response, because of metabolically impaired exhausted immune cells

Virus / Bacteria ⇒ shift Hypermetabolic Phase: fight infection
- Energy Surge: Cells ramp up metabolism, breaking down fats, carbs, and proteins for rapid energy.
- Glycolysis Dominates: Immune cells switch to rapid aerobic glycolysis (Warburg effect) for quick energy, producing lactate.
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Thanks interesting. Acute sarcoid is hypermetabolic and chronic is hypometabolic though it is a complex illness and forms and definitions vary.
I get high on immune arousal -infection, sarcoid bout, heparin shots which in the view of some docs remove fibrin accumulated around an antigen and allow the immune system to work on the antigen. My serotonin system seems to intooverdrive, but not to the point of serotonin syndrome,maybe just working bette and "keeping house", resulting however in things like increase twitching, formication and jerking of limbs and digits etc. Just my observations opinion on possible mechanisms.
 
Relevant Reddit thread just popped up with further anecdotes concerning how common an experience this is:



I have never experienced it myself (again, I wonder if this is related to being gradual onset? I worry it is so...), but have been hearing others talk about this for years.
 
I've been sick past a few days with what appears to be a common cold. Then I got my flu/covid vaccine yesterday, thanks to my Medicare card that finally came through. Now I'm stuck in a motel room sick, which gave me time to think about this topic of feeling better when sick. Can't say if the sickness/vaccine made me feel better since I'm already high on my drug of "road therapy". But it occurred to me that if I can feel better being stuck in a motel room away from home, maybe it is possible for others to feel better in other circumstances, like being sick.

I did some googling, and it appears that acute inflammation temporarily raises dopamine. And acute sepsis is fundamentally a widespread, overwhelming inflammation. So, the commonality between me and those who feel better when sick could be dopamine. Maybe you should check in to a hotel in a strange town and see if that also makes you feel better if acute sickness makes you feel better.
 
AliceLily said:
I am now thinking something must happen around that 8-10th day, something goes wrong, ME switches on.
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It could that the covid inflammation subsides after 8-10 days. I had similar experience with my first covid while on the road in 2021. I was miserable for a week or so, and yet I was functioning fine. Then, on the second week, I felt depleted and spaced out as if my ME/CFS was coming back with full force.
 
poetinsf said:
It could that the covid inflammation subsides after 8-10 days. I had similar experience with my first covid while on the road in 2021. I was miserable for a week or so, and yet I was functioning fine. Then, on the second week, I felt depleted and spaced out as if my ME/CFS was coming back with full force.
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I remember we had Covid at the same time last year and pretty much along the same timeline as well. Thanks for joining me on that thread (and everyone else too) because it really helped me not feel so alone and concerned.

Yes, I was in shock for about a week when I actually could feel the brain fog setting back in over two days around that 8-10 day, it was so heavy coming back in it disquieted me because it reminded me of my early ME/CFS when I didn't know I had ME and I was very disquieted about change mentally but had no idea what was going on and along with the physical symptoms I was experiencing back then. I've tried to block out the emotions over the years because it is just too hard to keep going over the shock, grief, worry all the time and it affects the ME/CFS when emotions are high.

You and others will be better at working out what is happening than me. Hoping we get to understand it before I get too old.

I forgot to mention I was due for the Covid vaccine in December but the Pharmacist said there was a new vaccine strain coming in late January, so I am waiting until then. I am well protected in the meantime with masks.

I hope you get over your recent cold Poetinsf. I have been free of colds and Covid since last year.
 
poetinsf said:
I've been sick past a few days with what appears to be a common cold. Then I got my flu/covid vaccine yesterday, thanks to my Medicare card that finally came through. Now I'm stuck in a motel room sick, which gave me time to think about this topic of feeling better when sick. Can't say if the sickness/vaccine made me feel better since I'm already high on my drug of "road therapy". But it occurred to me that if I can feel better being stuck in a motel room away from home, maybe it is possible for others to feel better in other circumstances, like being sick.

I did some googling, and it appears that acute inflammation temporarily raises dopamine. And acute sepsis is fundamentally a widespread, overwhelming inflammation. So, the commonality between me and those who feel better when sick could be dopamine. Maybe you should check in to a hotel in a strange town and see if that also makes you feel better if acute sickness makes you feel better.
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I can 100% confirm that whilst this is great if works for you it is absolutely not something that works for all other pwme as I spent many years whilst I had moderate pwme doing a job that involved a lot of travel and hotels and made me significantly iller every year

And it’s a horror being ill stuck in a hotel room knowing you have to scrape home to get any start to any sense of rest whether ‘ just’ overdone me/cfs ill or something else on top
 
bobbler said:
I can 100% confirm that whilst this is great if works for you it is absolutely not something that works for all other pwme as I spent many years whilst I had moderate pwme doing a job that involved a lot of travel and hotels and made me significantly iller every year
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If u meant it doesn't work for everybody, or even most people, then I agree. Something not working for you does not mean it doesn't for everybody, no more than something that works for you does not mean it works for everybody.

Don't get me wrong, I'm not proselytizing. I'm simply offering a possibility that something that can be reproduced at will might help IF being sick, which you can't or don't want to reproduce, helps. If you say 100% not working, you are denying that possibility, however small that maybe, of other people.

btw. there probably is some difference between traveling for work and traveling for pleasure.

edit: added last sentence.
 
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poetinsf said:
If u meant it doesn't work for everybody, or even most people, then I agree. Something not working for you does not mean it doesn't for everybody, no more than something that works for you does not mean it works for everybody.

Don't get me wrong, I'm not proselytizing. I'm simply offering a possibility that something that can be reproduced at will might help IF being sick, which you can't or don't want to reproduce, helps. If you say 100% not working, you are denying that possibility, however small that maybe, of other people.

btw. there probably is some difference between traveling for work and traveling for pleasure.

edit: added last sentence.
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ha! You are very right - I thought I'd worded it specifically to make the point of 'same thing doesn't work or not work for all' but now I read it through I actually completely failed :rofl:

Although for me I also did the travelling for pleasure and got similarly battered and had to have weeks where I was hardly awake stuck in grotty accommodation just asleep until I was back able to function and carry on trip. Although less bad because I could do that, and there is some sense of being able to cancel things when the body doesn't play ball vs when it's work and it's a hellish situation etc.

It would be blooming great if it did work for me though or just was more possible because even if you can't do much the idea of having a change of scene every so often even if just looking out of the window when years disappear due to illness ... I can really relate to.

As a side note, dang this is the sort of nuance good cognitive psychologists should be looking at getting hard with exhaustion and bad days that suddenly grammar and word order becomes top-tier difficulty as the automatic part of that fails in a way some other automatic things don't
 
To me it sounds like travelling is either some sort of adrenaline rush or something psychological. Some sort of Pavlovian conditioning probably. You're mild enough to travel so there's no reason why you should feel bad when sedentary regardless of location. I know you're going to disagree because this is your personal experience, but I can't take it seriously when you assume there's a physiological reason that you're feeling better.

I made the mistake of travelling once when I was mild-moderate which put me firmly into moderate territory. Most people who go above their threshold will have a similar experience. You're simply not going above you're threshold, but there's no reason spending time away from home would have an impact on your ME/CFS.

What any of this has to do with "feeling better when you have a cold" I don't know. You're immune system is doing something differently compared to when you don't have one so the connection between travelling and cold symptoms is even more absurd.
 
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