spontaneous improvement/remission explained?

[bad1080]

has any theory about the origin of me-cfs ever had an explanation for a spontaneous improvement/remission?

i sometimes (rarely) have a day where i basically feel normal for a couple of hours. i then think "it must have been this or that" or "oh it is all in your head" but it never is reproducible (helminthic therapy (HT) aside, i had those days pre-HT) so i call them "spontaneous" now as it seems to be the best description.

if i am this severely ill the rest of the time how can this be, what process could possibly be the explanation for this, especially within just a couple of hours (usually literally overnight)?

 

[southwestforests]

An excellent question for which I've not got even an inadequate answer.

Those moments are enjoyable when/if they happen.

Those moments of non-malfunction have causes just as unknown as those several model trains which were malfunctioning, I took apart, examined, observed no fault or defect, reassembled without doing anything, and now they work perfectly.
My body has a known defect which disallows that.
My body allows that.
My body still has the known defect which disallows what it just allowed.

 

[bad1080]

and now they work perfectly

haha! maybe that's all i need, a good reassembly! xD

 

[southwestforests]

haha! maybe that's all i need, a good reassembly!

"Hey Scotty, beam me up but run me through the pattern buffer a few extra times."

 

[Wishful]

Try thinking of a suitable analogy. For a car engine, most of the engine can be in perfect running order, but one little sensor or connector malfunctioning can make the engine run very poorly if at all. In a computer, all it takes is one transistor or connection (and there are billions) to crash a program or bog it down in some endless computation.

Our bodies are extremely complex, with lots (I'm not even sure of the order of magnitude) of subsystems and interactions between them. One malfunction in the appropriate place can create the core ME dysfunction, which in turn alters multiple downstream subsystems, causing an individual constellation of symptoms. Furthermore, those malfunctioning subsystems can feed back to sustain the abnormal state.

In that model, you can imagine one of those subsystems involved being altered by some factor (cuminaldehyde, T2, diarrhea) throwing the overall system into a different state (temporarily). The non-ME state might be temporary because some of those subsystems have homeostatic controls, which somehow have been altered to maintain the abnormal state. I've experienced the temporary full remissions multiple times, yet none lasted longer than 24 hrs.

I also experience abrupt shifts in baseline symptoms. I can go for months doing my daily 45 minute walk, without wanting to push further. Then I abruptly feel enthusiastic about going further, and go for multi-hr hikes. Then some weeks or months later, I abruptly switch back to the previous state. My most recent switch to the long-hike state occurred after food poisoning. I just finished a 3+ hr hike. Sore legs and ankle, but not lethargic or brainfogged. Beautiful winter landscape, soon to be altered by rain.

 

[bad1080]

One malfunction in the appropriate place can create the core ME dysfunction, which in turn alters multiple downstream subsystems

that's kind of the question, how could me-cfs be remedied within just a couple of hours? because i could understand feeling somewhat better but completely normal from one day to the next seems kind of implausible.

are there explanations/theories that allow for this? a lot of explanations sound like they would take a long time before the downstream effects have caught up (but then again that's just me making assumptions as i lack the deep understanding of the physiology).

the mention of homeostasis made me think of one of those fountains where water fills up one container at the top that then tips over filling another and so on cascading down. so maybe we somehow got one full container at the start and that's what keeps us going through a good day. but the next insufficiency/imbalance is already "brewing" as the container at the start isn't getting filled again at the same/necessary rate to keep it going.

 

[Wayne]

that's kind of the question, how could me-cfs be remedied within just a couple of hours? because i could understand feeling somewhat better but completely normal from one day to the next seems kind of implausible.

Hey @bad1080 -- You might find THIS POST from over ten years ago quite interesting. The post itself is interesting, but so is the discussion on that entire thread. The post mentions an extraordinary experience by "Starcycle". Turns out one of the posters on that thread is "@jeffrez", who informed me that his original username was Starcycle, and that he had written the account I was so intrigued by.

 

[southwestforests]

You might find THIS POST from over ten years ago quite interesting.

Hmm, that was in 2012, now, here in 2025 with the use of digital TV that kind of TV static is gone.
Or at least I have the understanding that it is gone, I don't watch TV and early 2008 was the last time I lived in a home which had one.

 

[bad1080]

Hmm, that was in 2012, now, here in 2025 with the use of digital TV that kind of TV static is gone.
Or at least I have the understanding that it is gone, I don't watch TV and early 2008 was the last time I lived in a home which had one.

there are tv static videos on youtube, there is a short 10second one you could download and loop to save bandwidth

 

[southwestforests]

one you could download and loop to save bandwidth

I'm not sure it will do for me what it does for most other people.
Hard to define if it s because me naturally, because me being autistic, because me being autistic is me naturally, but things like whereas the sound of beach surf is relaxing to to most people it make me nervous in a hurry. Radio static snow is similar.
On PC and laptop there are several different script blockers, GIF blockers, et cetera, to knock down how many visual things are happening on web pages at a time because too much visual activity at a time is overstimulating. And TV static is everyting on the screen area moving constantly all the time.

 

[Wishful]

how could me-cfs be remedied within just a couple of hours?

For the engine analogy, just jiggling a connector would immediately get the engine running properly ... until the loose connection built up another oxide layer, reducing current flow.

For ME, our cells are constantly doing functions, so response can be fast. T2, for example, might have provided remission via RNA transcription, producing a bunch of proteins that were necessary for normal non-ME function. So, that could work within minutes or at least hours. Why would continued T2 supplementation not continue to help? Homeostasis again: some function is altered in a way that makes the ME state the new "proper" setting, so it does something to counteract the change caused by T2.

Now, why would prednisone also provide the same temporary remission? Probably via a different mechanism, such as reducing some immune response. Cuminaldehyde might have worked via yet another mechanism, such as blocking some receptor or transfer pore. The possible mechanisms are simply too numerous to figure out which ones might affect ME.

 

[wabi-sabi]

If the remission lasts only a few hours, I would say it's just an extreme variation of good days and bad days. Of the remission lasts for months or years, that's when I think we need a new explanation.

 

[kushami]

Not an explanation, but orthostatic intolerance syndromes (POTS, OH and so on) are also known for odd periods of remission, and the old “feeling better at a certain time of day” chestnut (often in the evening). So maybe it’s the autonomic nervous system working every now and then, like the car analogy.

 

[wabi-sabi]

old “feeling better at a certain time of day” chestnut (often in the evening)

I've experienced this frequently. I wonder if it has to do with circadian rhythms. My other thought is that after not hydrating or taking medicine all night long, it just takes some hours for those to catch up and that it happens in the afternoon. The energy spurts I get in the evening feel more like the tired and wired energy and happen more often if I have paced badly during the day. The last pattern I can think of is the recovery from orthostatic insult takes a couple of days (3-5). Depending on how many insults you layer on top of each other and in what time frame you will have periods of good and bad overlapping like waves coming in at the seashore.

 

[Wishful]

If the remission lasts only a few hours, I would say it's just an extreme variation of good days and bad days.

An important difference is the rate of change of severity. With T2, I'd switch from full ME to full non-ME (and bouncing with energy) over the space of minutes. Do "good days" switch state that abruptly?

 

[wabi-sabi]

Do "good days" switch state that abruptly?

Caffeine intake has a pretty speedy effect. There's nothing else I take that has a fast effect.
But it depends how well I have been pacing. Good pacing means that caffeine takes effect strongly and quickly and days of bad pacing means in has less effect. I think everything comes back to pacing.

 

[Wishful]

Caffeine intake has a pretty speedy effect.

Does it affect your ME symptoms directly, or just provide a boost to alertness/energy that overcomes ME's fatigue-like symptoms? Is the effect dose-depended and fades at the same rate the effects do for non-ME coffee drinkers?

I never felt that coffee, back when I drank it, had noticeable effects, aside from making me feel jittery if I had to much or too strong coffee. I drank coffee even as a small child (lots of sugar&milk then), so maybe that killed its ability to "energize" me.

 

[bad1080]

Does it affect your ME symptoms directly, or just provide a boost to alertness/energy that overcomes ME's fatigue-like symptoms? Is the effect dose-depended and fades at the same rate the effects do for non-ME coffee drinkers?

I never felt that coffee, back when I drank it, had noticeable effects, aside from making me feel jittery if I had to much or too strong coffee. I drank coffee even as a small child (lots of sugar&milk then), so maybe that killed its ability to "energize" me.

like with everything caffeine quickly builds a tolerance (well your body does). when you have it every day, even just one cup, you don't notice how much of an oomph it really has. once i abstained from my daily earl grey and then had a cup again after a couple of weeks the boost it gave me was overwhelming and unpleasant.

 

[wabi-sabi]

Does it affect your ME symptoms directly, or just provide a boost to alertness/energy that overcomes ME's fatigue-like symptoms?

Both, depending on how much I take. That's the hard part. One up of tea and I'm better. Give in to my tea longing nd have multiple cups many days in a row and I am crashed.

 

[wabi-sabi]

I never felt that coffee, back when I drank it, had noticeable effects,

I didn't feel so much before I got sick. Sure, it's keeps you awake on the night shift, but that's all. Now that I'm sick it has a much more powerful effect. That might be because I'm more sensitive or it might be because caffeine is a mast cell stabilizer. If you don't have MCAS, then caffeine might not be helpful for you.