spontaneous improvement/remission explained?

[Rufous McKinney]

Caffeine intake has a pretty speedy effect.

I can wake up in PEM and immediately know I can't tolerate any coffee. Its sort of a direct indictor.

I went over to 50/50 decaf....I might have two cups on a normal day. It's a tiny enjoyable thing, while I snore away, coma-like, at the kitchen table. I'll perk up a bit after a couple of hours.

A little bit of caffeine seems less impactful than taking a small dose of the Modafinil my doctor was sure I'd love. I won't get PEM from a cup of coffee.

What I notice is how drying caffeine is. The mix is far less so.

 

[cfs since 1998]

You can't have a remission of minutes or hours. That's not how it works. For example, if you suffer from chronic migraines, a day on which you do not have a migraine is not a "remission." Or if you have IBD, going a day or two without symptoms is not a "remission." Stop calling it that.

 

[Dysfunkion]

I have had spontaneous improvements from the most random things and they never stick, it feels like something is stuck in a feedback loop. My body clearly can function at a higher level but its not using everything it can or maybe its some energy metabolite over spending thing where occasionally a reaction to something can through a super specific mechanism provide a backdoor. Since eating anything at all makes it worse its nothing I can consume naturally to replenish. The general trend is that it appears to be immune trigger related in what tends to happen to trigger inconsistent and non-repeatable windows.

 

[Wishful]

You can't have a remission of minutes or hours.

I said I'd switch state over the space of minutes or hours. The non-ME state lasted the rest of the day, and was gone the next day. That qualifies as "a period of time when an illness is less severe or is not affecting someone". As far as I could tell, my ME had switched off completely. Other people have reported maintaining the non-ME state much longer.

 

[JES]

You can't have a remission of minutes or hours. That's not how it works. For example, if you suffer from chronic migraines, a day on which you do not have a migraine is not a "remission." Or if you have IBD, going a day or two without symptoms is not a "remission." Stop calling it that.

Well, relapsing-remitting MS is the official term for multiple sclerosis that has periods of worsening and improvement. With ME/CFS there is also no permanent obvious damage at least, so while in relapsing-remitting multiple sclerosis you would still carry on some degree of permanent demyelination, in ME/CFS there is no such thing.

I have had and still have days when I barely feel sick. That would be indistinguishable from being well in my perspective. If I could find a way to extend these "temporary remissions", for me it would be just like being cured.

 

[Wayne]

If I could find a way to extend these "temporary remissions", for me it would be just like being cured.

Temporary remissions are my focus, and feel I'm able to achieve them on a pretty consistent basis. It feels like there's something in my "system" that is constantly pulling my health downward, giving me ME/CFS symptoms, often severe. This is especially true in the mornings when I start out my days.

But as I begin to do my various daily routines of HBOT, energy balancing, coffee enemas with various therapeutic agents added, PEMF, intermittent fasting, lymphatic massage, dry brush massage, self massage--especially around the neck and head, and much more, I am gradually able to start pulling myself out of my "funk", and start to feel better and better as the day progresses. After several hours, I often don't feel sick at all. Good energy, good humor, great appreciation, are some of my daily goals I often achieve.

It's pretty much a daily thing for me (though not always guaranteed). I don't know if I would call what I do temporary remissions, or something else entirely. It actually doesn't really matter to me. I just know that the rather unusual and unorthodox things I regularly do makes me far more functional than if I didn't do them. For each of us to find our own individual approaches that might help achieve at least partial remissions might be our best hope for most of us.

 

[pamojja]

I don't know if I would call what I do temporary remissions, or something else entirely.

Spontaneous Remissions are usually remissions in cancer patients mentioned in the literature, where the patients actually and opposite to spontaneous, often applied lots of diet- and lifestyle changes very persistently and for long periods of time. Since no randomized evidence with lifestyles, therefore 'spontaneous'. Remissions with cancer usually should last 5 years.

I simply shortcut this lack of clear and logical definition, by clearly indicating: remission of 'symptoms' only.

In my case, from PEM's, no more lasting longer than the same day. Basically as in youth working up to 10-12 hours on construction sides (of course, with much fewer hours now; 3-4 only). Totally exhausted and in pain. But cleared the next days. This remission of a particular debilitating symptom, lasting now for 6 years.

Or in the case of remission of symptoms of COPD was a very persistent chronic bronchitis for the whole year of 2012, diagnosed only afterward as COPD stage 1, with symptoms already gone: 12 years remission from symptoms of COPD.

In the case of my first diagnosis of a chronic disease of PAD 16 years ago, the remission proper from its walking disability lasted exactly 5 years. Due to corona measures then, I couldn't engage in some life-style changes anymore (like 6-7 weeks of extensive sun-bathing in the tropic, swimming etc. during the deepest winter), therefore some, but better bearable leg-pains returned since. With worsening as ever slight, I would speak of remission in the past only. With worsening of main symptoms again, which at least obvious to me, reversed remission.

So I think with not so much definition clarity in the term 'remission', one certainly could also use that term for temporary remission of symptoms, with temporary improvements. Shorthand, calling it remission of the whole ME/CFS disease, seems a little shortsighted to me.

Lung or heard expertise wouldn't be able to cancel my diagnosis, they still see the clear signs of it with their sophisticated apparatus - unless I told them, I'm free of its obvious symptoms. Walking disability or shortness of breath. With ME/CFS no obvious apparatus to detect, the situation is of course the more tire.

 

[bad1080]

no offense, i think discussion about semantics is besides the point. i used "remission" to illustrate a point not to write a dissertation.

 

[pamojja]

True, it's beside the point you wanted to make. But due to the mixing of ambivalent terms already in the initial post, a discussion is naturally steered toward clarification of terms. Ambivalences in terms might not be so to the OP, but every other. I didn't want to add a dissertation, but to end this steering away.

 

[cfs since 1998]

I said I'd switch state over the space of minutes or hours. The non-ME state lasted the rest of the day, and was gone the next day. That qualifies as "a period of time when an illness is less severe or is not affecting someone". As far as I could tell, my ME had switched off completely. Other people have reported maintaining the non-ME state much longer.

Again, not having symptoms for one day doesn't mean you had a remission. It means you didn't have symptoms for one day. Look at the migraine/IBD analogy. One day can hardly be considered a remission.

 

[pamojja]

@Wishful already clarified in this exact quote, what he fuzzily, but really meant with badly defined 'remission'. He meant temporary improvements. Nothing further to argue.

 

[Wishful]

but really meant with badly defined 'remission'

Hey, that definition was copied directly from an online dictionary.