Improvement of ME/CFS during an infection

[poetinsf]

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.

Yeah, I made it clear I'm my 2021 essay about the experience that it is no more than an anecdote and I don't recommend it because there is a definite risk that it can make your MECFS worse, not better. For whatever reason though, I just light up, and my mood and ability improves despite inconveniences. Living in my car has even more powerful effect. It's really strange.

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

That goes for me too. My blurry eyes and brain misplaced "100%" in the sentence and interpreted differently than I would normally have, lol. I don't worry too much about it though. We all know we have cognitive problem time to time.

 

[poetinsf]

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.

Well, I make no such assumption. My theory is some neurotransmitters suppress dysfunctional hypersensitivity to peripheral immune signals, but that's just my working theory. And I single out dopamine because there have been several papers that say dopamine downregulates neuroimmune systems. It's no more than a speculation, just like everything else about the mechanism of ME/CFS.

What any of this has to do with "feeling better when you have a cold" I don't know.

Not "feeling better when you have cold", but "feeling better when you have sepsis". I made the connection based on the fact that acute inflammation raises dopamine.

 

[mariovitali]

I wanted to make sure everyone sees the following again

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.

 

[AliceLily]

@poetinsf I've experienced instances of feeling better like that too over the years and I have read of other members posting about it too from time to time. I remember in my sickest years thinking I was coming right in the evenings sometimes. I've also been away and surprised I didn't have severe PEM, though I've had nasty ones when away as well.

I'm one of those people who takes everything but the kitchen sink when packing. It's a pain to unpack when I get home. So I'm not keen on going away if it can be helped.

 

[poetinsf]

I'm one of those people who takes everything but the kitchen sink when packing.

I think I got you beaten on that front. Things in my car right now: 60 qt fridge, 6" memory foam mattress, sleeping bag, skis and poles., piano kb, guitar, 2 cameras, gopro, 6 lenses, reflectix window covers, instant pot, hot plate, bags of clothes, food, electronics...

Anyway, I only brought it up in the context of feeling better when sick. It's not something I'd recommend to anybody.

 

[Arfmeister]

In the same line as the original post : a Remarkable story on Reddit - an almost remission through sepsis
I’m actually trying to verify atm how legitimate the story is by contacting this person.

As it is In German, I asked ChatGPT to give a concise 2-paragraph summary in English, capturing the substance of the text without speculation or unnecessary detail:

⸻

The author describes having experienced ME/CFS twice: once at age 15 following an EBV infection and again at age 30 after COVID-19, with the second episode being far more severe. After years of debilitating symptoms, lack of medical recognition, and dismissal by doctors, they unexpectedly improved following a life-threatening case of leptospirosis that led to sepsis and an 11-day stay in intensive care. After this event, their symptoms rapidly lessened, symptom cycles reversed from mostly severe to mostly manageable, and within six months nearly all symptoms had resolved. They do not believe medications were responsible for the improvement, as they only received antibiotics and short-term steroids.

Based on personal experience, the author reflects on the long-term burden of post-viral illness, including family history of similar outcomes, and expresses deep frustration with the medical system’s handling of ME/CFS. They propose a personal theory that viral infections may alter or persist within cells, and that the extreme immune response during sepsis may have accelerated the removal of dysfunctional cells, leading to recovery. While acknowledging this is speculative, the author emphasizes gratitude for the improvement and offers empathy and cautious realism to others facing ME/CFS.

https://www.reddit.com/r/Austria/s/AtMWtaVTYa

 

[jnmaciuch]

Just to chase down a potential lead, if anyone has a recent infection in memory that coincided with a brief improvement, I'd appreciate getting a better sense of the timeline.

Specifically I'd be interested in knowing the approximate start and end of:
1) the improvement in ME/CFS symptoms
2) similar symptoms as you normally get during PEM (please specify!)
3) other infection-specific symptoms not usually experienced during PEM (please specify!)

Being vague on details to try to limit influence on anyone's recollection. Thanks in advance!

 

[Kitty]

This happens to me every time I get a viral infection. It also happened in response to both doses of the AZ Covid vaccine, though I haven't improved after any version of the mRNA ones.

1) The improvements start two days before any symptoms of the virus show up, occasionally three days. After that I'm starting to feel unwell with whatever bug I've got, so the improvements disappear and I feel worse than usual. The improvement takes the form of significantly increased activity capacity and mental clarity. I feel substantially better all round, including less muscle pain.

2) PEM doesn't usually come into the equation much.

3) Not 100% clear about this question, but once the symptoms begin they're usually bog standard for the infection. I don't get worse symptoms than healthy people with the same virus, though I sometimes take longer to recover. I don't think my ME/CFS symptoms get worse, though because I have a predominantly immune-and-pain type presentation, it's pretty hard to tell.

 

[jnmaciuch]

This happens to me every time I get a viral infection. It also happened in response to both doses of the AZ Covid vaccine, though I haven't improved after any version of the mRNA ones.

1) The improvements start two days before any symptoms of the virus show up, occasionally three days. After that I'm starting to feel unwell with whatever bug I've got, so the improvements disappear and I feel worse than usual. The improvement takes the form of significantly increased activity capacity and mental clarity. I feel substantially better all round, including less muscle pain.

2) PEM doesn't usually come into the equation much.

3) Not 100% clear about this question, but once the symptoms begin they're usually bog standard for the infection. I don't get worse symptoms than healthy people with the same virus, though I sometimes take longer to recover. I don't think my ME/CFS symptoms get worse, though because I have a predominantly immune-and-pain type presentation, it's pretty hard to tell.

Thanks for sharing! Sorry for the confusing wording, mostly just trying to account for the difference between symptoms that someone almost never experiences outside of viral infection and symptoms that overlap with what normally worsens/appears for them during PEM

 

[Kitty]

mostly just trying to account for the difference between symptoms that someone almost never experiences outside of viral infection and symptoms that overlap with what normally worsens/appears for them during PEM

That would be viral symptoms such as a streaming nose, a cough, a severe sore throat, sleeping for longer than usual, long lasting headaches, measurable fever, and needing to stay in bed.

PEM does cause many of them, but at a much lower level. My throat's often pretty swollen but it's not sore enough to want numbing lozenges; my nose is sniffly but I don't get through a box of tissues in a day; I keep swinging from being too hot to too cold, but my temperature's normal. Also, of course, I never feel substantially better for the two days before PEM steamrollers me!

 

[Kitty]

symptoms that someone almost never experiences outside of viral infection

Actually, a more accurate way to look at it might be the lack of symptoms that I never experience outside of viral infection.

Which would be pretty much all of them. I have up to 50% more function and energy, and often feel really good. If I'm bouncing around or coming out with sharp repartee I know I'm probably in for something unpleasant.

 

[jnmaciuch]

though because I have a predominantly immune-and-pain type presentation

Sorry, would you actually mind sharing what you mean specifically here? I think it could be an extremely important detail viewed in light of one other detail you shared

 

[AliceLily]

Specifically I'd be interested in knowing the approximate start and end of:
1) the improvement in ME/CFS symptoms

The whole first week of a cold, 1-7 days. Then the ME symptoms come back around the 8th day.

2) similar symptoms as you normally get during PEM (please specify!)

I think I am pretty much free of ME symptoms. I think clearly. I feel like I am back to normal with the healthy spring in my step that I once had before ME. I don't seem to get PEM.

3) other infection-specific symptoms not usually experienced during PEM (please specify!)

For me it feels like a cold or covid in the first week releases something that is stuck or holding on. My sinuses are affected badly with the ME and it feels like there is something not working properly there due the ME. Something significant that affects even more than the sinuses. Not only are the sinuses affected with the ME but there is a heavy something that makes thinking much harder.

I might be able to explain better, but for now I will to leave it at that. Also, I will try to see if I remember anything else to add.

 

[Kitty]

would you actually mind sharing what you mean specifically here?

Just that people's most dominant ME/CFS symptoms sometimes differ.

Folk here report struggling with recurrent migraines, or the inability to sit up for long, or heavy fatigue, or insomnia that makes their symptoms worse, or delayed stomach emptying—some have all of those. I had major problems with stomach emptying in the earlier years (it disappeared during a remission in the 1980s and hasn't recurred), but not the others.

Mine's dominated by feeling flu-ish and ill all the time (I get visibly swollen glands in PEM), also a stiff neck in PEM, a lot of muscle pain, and some of the symptoms you'd expect with peripheral neuropathy. There's also the usual OI and cognitive dysfunction; sensory sensitivity too, but it's hard to know how much is down to ME/CFS and how much to autism.

 

[Kitty]

with the healthy spring in my step that I once had

Very good way of describing it!

ETA: I'm a wheelchair user because I can't walk far enough to do most things, but the first dose of the AZ vaccine kept making me feel as if I wanted to go running. I was bubbling with pent-up energy, almost like I used to be when I'd been sitting behind a desk at school all day and was itching for the home-time bell to ring.

 

[AliceLily]

The whole first week of a cold, 1-7 days. Then the ME symptoms come back around the 8th day.

I think I am pretty much free of ME symptoms. I think clearly. I feel like I am back to normal with the healthy spring in my step that I once had before ME. I don't seem to get PEM.

For me it feels like a cold or covid in the first week releases something that is stuck or holding on. My sinuses are affected badly with the ME and it feels like there is something not working properly there due the ME. Something significant that affects even more than the sinuses. Not only are the sinuses affected with the ME but there is a heavy something that makes thinking much harder.

I might be able to explain better, but for now I will to leave it at that. Also, I will try to see if I remember anything else to add.

I should have add to my post that the first night of a cold can be one where I don't get much sleep due to the runny nose, sneezing, so I can feel tired the next day because of that. Otherwise my post above stands. I will observe more closely when I get a cold or Covid again.

 

[jnmaciuch]

Just that people's most dominant ME/CFS symptoms sometimes differ.

Folk here report struggling with recurrent migraines, or the inability to sit up for long, or heavy fatigue, or insomnia that makes their symptoms worse, or delayed stomach emptying—some have all of those. I had major problems with stomach emptying in the earlier years (it disappeared during a remission in the 1980s and hasn't recurred), but not the others.

Mine's dominated by feeling flu-ish and ill all the time (I get visibly swollen glands in PEM), also a stiff neck in PEM, a lot of muscle pain, and some of the symptoms you'd expect with peripheral neuropathy. There's also the usual OI and cognitive dysfunction; sensory sensitivity too, but it's hard to know how much is down to ME/CFS and how much to autism.

Thanks a lot, that’s really helpful. I think I finally figured out something really critical that ive been circling around for months without realizing it. I was focusing on one way to get to “flu-like” symptoms, when there is at least one different pathway that would end up being described similarly but is crucially different on a biological level. I think the specific response to vaccines with certain ingredients might be key to sorting that out