What Triggered Your Temporary Remissions?

Wishful

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Many of us have experienced temporary (lasting hours) remissions. I've always felt that this was an important observation about ME: it shows that ME can switch state quickly, which means it's a quickly changing biological effect, rather than a permanent degenerative one. It might be helpful for researchers to have a list of factors that triggered these temporary remissions. You may not have definitely identified some factors, but guesses are okay. Reports of ones with mystery triggers might be useful too, to get an idea of how common they are.

I triggered on:

Prednisone: worked for two trials, then it stopped working completely.

Cumin: worked as effectively as prednisone, but stopped working after a few days.

T2 (3-5 diiodothyronine): worked a couple of times, then never again. Iodine, which makes some T2, had the same effect.

I also had a couple of temporary remissions in the first few months of my ME, without knowing what caused them.

My remission seemed to be 100%, and generally lasted for a few hours (I think typically until going to sleep at night).

I had several remissions in the first few months, I think a couple over the next year or two, and the prednisone, cumin, and T2 remissions occurred somewhere between years 5 and 10. So, it's not just an early-stages ME effect.


Ahhh, temporary remissions. I sure miss them. :cry:
 

gregh286

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Couple things. I always get good remission in hot countries.
I figured out it takes away lactic from muscles quicker allowing muscle cells to breathe again better. A good sweat can work miracles. Hence I bath a lot and use suana x2 a day.

Supplement wise very hard to battle against anaerobic respiration. Yea....immune suppressants work and are short lived but you can experience bounce backs which are tougher.
I had an amazing remission a year ago with a dose of 20g of glutamine...then glutathione and b12 lozenges. Lasted a day and was absolutely bliss and hit a full relentless remission of a 10/10.

Couldn't recreate it but the 3 just seem to hit altogether synergistically. Was a special day that.

Saying that my baseline is a 7 to 8 for the last few years. So quite satisfactory. Doesn't stop me yearning for the 10 though.
 
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I've had three full and lengthy remissions (2 wks, 3 wks and then 1 wk) in the space of about a year. As best I can tell, these were completely random - my life is pretty darn same-y since I've had this, in terms of diet, supplement regimen, lack of social contact, days built around rest...

My best guess, as suggested by I think Judee in another thread, is that being still in the early stages of the illness, even though it's moderately severe, I may still in some sense be close to the tipping point and have sort of wobbled back and forth a few times.
 

wabi-sabi

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being still in the early stages of the illness, even though it's moderately severe, I may still in some sense be close to the tipping point and have sort of wobbled back and forth a few times.
Yes, this is similar to my experience. When I first became ill I would have a few sick days here and there, mixed in with feeling normal. As I got sicker I gradually had fewer normal days until now I have none.

I wouldn't call this pattern a series of fluctuating remissions. I would call it disease progression. A slow downward spiral is how it feels when I'm feeling extra cynical. The spiral started off slow, but it picks up speed as I go. In hindsight it's been a (mostly) steady downward pattern, but while I was in it, it felt like fluctuations.

It's like the difference between relapsing remitting MS and secondary progressive MS.
 
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Remission means complete resolution of symptoms? I don’t know if dysautonomic symptoms like blood pooling or impaired vasoconstriction can go away on its own. But you can feel 100% normal when there is no neurochemical imbalance in the brain, when you supplementing with something like NAC or Acetyl L Carnitine. But this imbalance is probably downstream effect that is coming from altered autonomic neurocircuits, central hyperadrenergic state (permanent or irreversible??? I hope not). I don’t know if there is something that can fix constant hyperadrenergic state. Has anyone tried Ginko Biloba? It affects blood circulation in the brain, probably it can help. There is new study on Ginko Biloba with good results (November 2021)
 

vision blue

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Many of us have experienced temporary (lasting hours) remissions. I've always felt that this was an important observation about ME: it shows that ME can switch state quickly,
.
. :cry:
I enjoy the deep reasoning but there may other explanations for how mini remission is possible So it might be what seems like a remission is really just a masking. So.a Temporary compensation- not reversal - that cannot be sustained. For example, adreniline can temporarily mask symptoms but i dont think it's reversing the trap.

Maybe woukd be useful to narrow it to alleviations that are not followed by big crashes? Things that mask - like adreniline - are often folowed by super bad crashing. So maybe a true (temporary ) recersal of ME woukd not have the withdrawal dip of just a mask

Anither qualification to thinknabout is what if something alleviates temporarily some symptoms but not others. Eg gabapentin cream wonderfully alleviates hurting all over and some overstimulation and gives a welcome sense of well being and relief. But still doesnt make me nornal- no more ability to do stuff than becfore

But with thodr in mind:

Peak estrogen. Used to be with pre ovulation estrogen peak (coinciding with the pre ovulatory temperature nadir) I woukd think hey maybe im finally getting better.
Later i realized body”s drive to reproduce trumped everything- was it a reversal or a mask? Im guessing latter but i dont have any proof

Another for me even now is for three days before i get my viral recurrence, i feel really good and get alot closer to normal a tivities. So during these 3 days, the virus is replicating. Herpes (and other) viruses duringvthat time are kniwn to suprese our immune systems. So i find this interesting. Does it suggesr i am usualky sick because my immune system is too active all of the time? Or is it just the replicating virus also somehow throws out some feel goiod stuff rather than just supressing imnune system (not the latter is consistent with prednisone helping you temporarily

The fact things lije pred help at first then stop (not consideribg adaptation) may be consistent with something i started thinking- that ykur body is doing the CFS thing to protect you. And if you get rid of tge protection, it will find a way around it

O e of the reasons i started concluding this is my illness changed dramatically starting in 2013-2014-2015 or ar least beginning of a process that later changed cfs. So now im having much accelerated aging because actualky the piece that makes ne feel like i beed to lie down all the time isnt there as much. Protection is gone and now my body is degrading

Will thinknof other triggers
 

Viala

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I think I know more or less how to get into a remission, after years of testing I have found supportive supplements, good and healthy diet that works for me, and also learned what to do and what not to do. I think it is a good sign that something is indeed working. In my case the problem is that my work makes me sick thanks to a device that emits strong emf, so much that it can bring me to a full blown misery in a matter of hours. I have found some ways to counteract it, but it's still not enough and these side effects are cumulative. No brain power to learn a new profession now. I think EHS may be a contributory factor for some of us, and it is easy to overlook when we are in an environment of constant exposure. It could explain why we do not get better and why we sometimes do get better in a different environment. Something that flips the switch, maybe.
 

vision blue

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@Viala So alleviation of an ME trigger provided the “reversal”. Maybe for me in that category is dairy. (Not lactose). I think ive had that since infancy and having to go off it a few years ago alleviated some pf my symptoms- not all tho

Can u please say more about the EMF? If you think is too off topic, please PM me. Interestrd in what specific device has do e it to you.
 

Wishful

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My best guess, as suggested by I think Judee in another thread, is that being still in the early stages of the illness, even though it's moderately severe, I may still in some sense be close to the tipping point and have sort of wobbled back and forth a few times.
That was my impression too. I see ME as a feedback loop that's misbehaving. At some point, it's fairly easy to switch state. If a factor continues to change, it's easier to stay locked in the abnormal state.

Your remissions are probably temporary normal working Mitochondria and Energy supply.
No, I've seen no evidence that my ME involves mitochondrial dysfunction. My symptoms are more in line with the symptoms caused by immune activation (general malaise, aches, plus the brainfog that I don't think is a normal flu symptom).

So it might be what seems like a remission is really just a masking.
It certainly didn't seem that way. It simply felt like whatever it was had passed, like a flu virus getting wiped out. All the symptoms were gone, and I felt energetic again. They were never followed by worse severity, just a return to the normal levels.
 

Jyoti

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I see ME as a feedback loop that's misbehaving. At some point, it's fairly easy to switch state. If a factor continues to change, it's easier to stay locked in the abnormal state.
I have had two 'remissions' in the last ten years. There are some supplements and other interventions that help when I am crashing or heading over the cliff and into the abyss. But none of them have actually created what I would call a complete cessation of all symptoms, and particularly not if we add in the criterion that the uptick in well-being is not followed by a crash.

The two remissions were three and one month respectively. Both of them followed on a fairly serious bone fracture. At first I thought I could attribute the amazing improvements on all levels to what we could call 'aggressive rest' as necessitated by not doing any weight bearing for three months. But the second time, I broke my elbow and had no restrictions to speak of on my activity level and again experienced what I guess could be called a remission. Really...no symptoms.

So...a shock to the system? Or of the locked in abnormal state? An outpouring of immune activity? Perhaps a redirection of that activity ( I feel like I am in the over-active immune subset)?
 

wabi-sabi

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Once and a while, I might feel almost normal for: periods of time like, oh 30 minutes, an hour. I don't consider that remission, its just a lifting of the Shroud.
Yes, when we are trying to investigate remissions I think we need to differentiate between the shroud lifting for a few minutes or hours (even I still experience that), and a remission, which I think of as longer lasting.

To start a remission definition:

timeframe: must last for at least a week

consequences: must not be followed by a crash, flare, or exacerbation, but just a return to illness baseline

scope: must remit all symptoms, not just some of them

experience: you can say, "I felt like my illness went away completely and I was normal". you don't have to think about pacing or crashing; you can just live as you want to
 

Judee

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I only remember one day in the last 40 years when I felt a noticeable degree (about 10%) of improvement. It was a day where I upped my potassium and it lasted about 16 hours. Even though I took extra potassium (in additional to my electrolyte) everyday for the next two years, I never felt that again. :(

Back when I used to be able to get fevers from flu, etc, I would feel slightly better when they broke but no remission and now no fevers.

That's not to say that ME of a few decades ago didn't feel better than it does now. It definitely did. I was able to do more. I still hit walls but now I feel like the wall never budges.
 

Viala

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@Viala So alleviation of an ME trigger provided the “reversal”. Maybe for me in that category is dairy. (Not lactose). I think ive had that since infancy and having to go off it a few years ago alleviated some pf my symptoms- not all tho
Yes and not only that one trigger, I need to stay on a healthy diet to feel better. So it wasn't a full remission per se where I could do all I want, but maybe if I stayed away from the triggers long enough, my body would have time to heal so that it wouldn't react badly to them anymore. I never got that far because sooner or later I have to work and it takes some time to get better afterwads. But it still was a remission, I could exercise, listen to the music for a long time, I could socialize, there was no PEM and I had energy to go out and couldn't wait to go out. There was no crash afterwards. But as usual, regular CFS came back when I did some work.

If you know that something might be contributing to your CFS, it is definitely worth a try. It took me a while to find which foods are good and which are not, but it makes a lot of difference.
 

Wishful

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I thought this was working for you?
Cumin initially produced a temporary remission. That stopped after a week or so. I continued to test it a few times a year after that, which eventually led to discovering that it was an effective PEM-blocker for me. It probably worked before that, but at times when I wasn't expecting PEM, so I didn't notice the absence. After ~2 years of taking cumin, I became PEM-free without needing cumin.
 

Wishful

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To start a remission definition:

timeframe: must last for at least a week
Well, that leaves me out. My temporary remissions fit the definition except for lasting only 'the rest of the day'. I still consider that temporary remission, and an abrupt switch of state from full ME to full no-ME and then back to full ME.

Once and a while, I might feel almost normal for: periods of time like, oh 30 minutes, an hour. I don't consider that remission, its just a lifting of the Shroud.
I agree that that probably isn't temporary remission, but more likely something that overrides the symptoms (adrenaline or whatever). My temporary remissions didn't feel 'almost' normal, they felt like the whole nasty nightmare was finally over and I felt fully healthy, plus I usually felt extra energetic probably from relief.