Poll: Have you Experienced Temporary Remissions?

[Wishful]

I've experienced over half a dozen temporary remissions over the years. They've been abrupt switches back to apparently full health, followed by abrupt switches back to regular ME. They've also made me feel bouncy with energy (Tigger mode), although that may just have been in comparison to feeling lethargic from ME.

@Hip said: "Temporary remissions seem very rare; personally I've never experienced one, my ME/CFS is very stable." I have seem others mentioning temporary remissions before, so a poll seems in order.

The question is for full remission. Temporary relief from just one or a few symptoms might just be secondary or comorbid conditions. For me it was "Yes! I'm cured! I feel fully healthy again!"

If such abrupt switches to full remission have occurred in a reasonable number of people, that affects a number of theories about the cause of ME, so it is important

If you were able to identify what triggered remission, please add that, since others may want to try too. I triggered twice on prednisone, and the first few times I took supplemental iodine or T2. I can't remember whether cumin triggered full remission the first few times I tried that, but it may have. So sad that none of them continued to work after the first few times...

 

[ljimbo423]

If you were able to identify what triggered remission, please add that, since others may want to try too. I triggered twice on prednisone, and the first few times I took supplemental iodine or T2.

I've never had a full remission. I do get a huge increase in energy when I take many different kind of herbs and supplements. This surge in energy has taken most of my PEM days, from a 4 or a 5 (on a scale from 0 to 10) to a 1 or a 2.

I'm not sure why this happens but the increase in energy is huge and feels overstimulating, often. It can also interfere with my sleep, so I need to be careful about how much I increase my supplement doses.

So it's not a full remission but it often feels like my CFS is gone for a few hours. I'm thinking it has something to do with my immune system but just what that is, I don't know.

Maybe another possibility is a compromised blood brain barrier. Allowing these supplements into my brain, somehow effecting the microglia, symptoms and giving me a big increase in energy.

I'd like to hear more from others.

 

[CFS_for_19_years]

I had a full remission for 2 to 3 days right after an acupuncture treatment. If I had needed to report to work on any of those days (mostly standing) I could have worked a full 8-hour shift. Since I wasn't working at the time, I did the next best thing - I went swimming. While sick I had tried to keep up with a small amount of swimming which was for me, 600-800 yards per workout. During this remission, I think I swam 1600-1800 yards with no problem, no PEM, etc.

It was as if someone had flipped a switch, like ME/CFS had never happened.

Several months ago I pulled together a few threads that mentioned remission:

https://forums.phoenixrising.me/threads/partial-remission-for-a-day.52833/
https://forums.phoenixrising.me/threads/a-bad-good-day.49249/
The following thread included a poll:
https://forums.phoenixrising.me/threads/me-cfs-spontaneous-remmission.38326/

You don't need to be a member of the following forum in order to view these threads:
https://www.s4me.info/threads/suddenly-feel-completely-well.7170/
https://www.s4me.info/threads/suddenly-feel-completely-well.7170/#post-129153
https://www.s4me.info/threads/first...nd-all-symptoms-temporarily-disappeared.7532/

Edited to fix links.

 

[ljimbo423]

Several months ago I pulled together a few threads that mentioned remission:

All these links go to a page that says Kaiser Permanetnte and you need to sign in.

 

[CFS_for_19_years]

All these links go to a page that says Kaiser Permanetnte and you need to sign in.

I'm fixing those right now. I'll be right back!

 

[CFS_for_19_years]

In January 2019 Dr. Robert Phair, a physiologist working with Ron Davis, had the following request:
https://forums.phoenixrising.me/threads/the-ido-metabolic-trap-guy.62727/page-7#post-1027967

If you or anyone else reading this thread would care to write out a description of everything you can remember about an overnight remission, and the succeeding events as you fell again into sickness, I promise to read every one carefully. I've often said that half of what I know about ME/CFS, I learned from patients. You never know when a patient's story will make a critical connection.

That particular thread had 25 instances where members discussed the topic of remissions. If you wish to read those posts, here is a summary of the search for the word remission in that thread:
https://forums.phoenixrising.me/search/90123/?q=remission&t=post&c[thread]=62727&o=date

 

[Rebeccare]

After I had been sick for a little over a year, I experienced a remission. It wasn't the result of any new supplements or medications; it just happened, but gradually. For a few months beforehand I started getting uncomfortable amounts of energy in my legs, and I used to run up and down the stairs a couple of times to get it out (I was living in a 9-story dormitory at the time, so there were lots of stairs!). Then I'd crash. But eventually my energy evened out and I began to feel more normal again. The remission lasted a little over a year, during which I wasn't back to 100% but more like 80-ish%. Still, I was able to work full time during the summers at a very physical job and was a full time student during the school year without too much difficulty.

But then one day I simply woke up and I was tired again. There were no obvious triggers that led to the end of the remission--no illnesses that I can recall, and no medication changes. It's been almost 12 years since that day, and I haven't experienced another remission.

 

[ljimbo423]

I'm fixing those right now. I'll be right back!

Don't be so hard on yourself-

 

[Sushi]

I had a full remission that lasted a few years after an intense course of IV hydrogen peroxide and EDTA. I suspect that it was the hydrogen peroxide that made the difference, though it was very hard on the veins and I wouldn’t be able to do it again.

 

[JES]

Twice more or less full remission from pain, cognitive and blood flow issues (POTS). First time after some form of food poisoning (bacterial infection), second time following a classic cold. Partial improvement after sleep deprivation and in the first days of taking certain supplements, but nowhere close to be considered a remission.

I earlier thought my remissions were due to the "fever effect", which is described in children with autism whose behaviour tends to improve during a fever. There was a study about using sulforaphane to achieve the same result through triggering a cellular heat shock response. I did not get any positive response to sulforaphane. I also trialed cumin and it reduced some inflammatory symptoms slightly, but nothing more.

Ron Davis implied in a presentation last year that it's not the fever itself, rather the acute infection, which improves ME/CFS symptoms for some. This would explain why sulforaphane did nothing for me. I'm not very hopeful of finding any supplement or other interventions that would "simulate" the effect of having an acute infection.

 

[Wishful]

First time after some form of food poisoning (bacterial infection)

Food poisoning cured my type IV sensitivity, and greatly improved my quality of life. Maybe more PWME should experiment with it. First make sure you're not short of toilet paper...

Too bad it's actually somewhat risky.

 

[Wishful]

Thanks @CFS_for_19_years for posting those links. I'd forgotten some and not seen some others. It's really too bad that such unexpected transient phenomena are too difficult to study. Surely they indicate something important about ME.

 

[taniaaust1]

After I had been sick for a little over a year, I experienced a remission. It wasn't the result of any new supplements or medications; it just happened, but gradually. For a few months beforehand I started getting uncomfortable amounts of energy in my legs, and I used to run up and down the stairs a couple of times to get it out (I was living in a 9-story dormitory at the time, so there were lots of stairs!). Then I'd crash. But eventually my energy evened out and I began to feel more normal again. The remission lasted a little over a year, during which I wasn't back to 100% but more like 80-ish%. Still, I was able to work full time during the summers at a very physical job and was a full time student during the school year without too much difficulty.

But then one day I simply woke up and I was tired again. There were no obvious triggers that led to the end of the remission--no illnesses that I can recall, and no medication changes. It's been almost 12 years since that day, and I haven't experienced another remission.

80% recovery is an improvement and not a remission. It's like saying someone with cancer who has shrunk a cancer by 80% is in remission. I think a lot of the remission reports are actually people reporting improvements as remission so that makes it harder to know exactly how many people were like cured for a time and muddies the remission statistics for this.

 

[taniaaust1]

Food poisoning cured my type IV sensitivity, and greatly improved my quality of life. Maybe more PWME should experiment with it. First make sure you're not short of toilet paper...

Too bad it's actually somewhat risky.

maybe we have a build-up of something bad in our systems and food poisoning makes our bodies flush throu that other toxin faster. Maybe they should be testing the feceas of those of us who get food poisoning to see what we are flushing out.

 

[taniaaust1]

I had a few years remission after which I got ME again due to catching just a mild cold virus which was going around. This remission happened after very slow improvement due to Aggressive rest therapy and trying so hard to avoid crashes over about 3-5 years till I reached a remission.

I do though also know there is something in our bodies which is turning on and off affecting our health as I have clearly felt that too several times and like a switch we can suddenly be much better. (the change being like an almost instant thing really makes me wonder what body system shifting that has to do with.. have we just released something to counteract the issue in our bodies? or did something in our bodies making us unwell stop?). If could figure out what that was causing that shift, I do think they could maybe solve ME/CFS.

 

[Wishful]

Maybe they should be testing the feceas of those of us who get food poisoning to see what we are flushing out.

My guess is that it's a specific microbe, and the drastic flushing action gives the good bacteria and phages a chance to clear out the remaining population. I had several courses of antibiotics during my ME, and none of them affected my type IV sensitivity.

I suppose another possibility is that a species entered a colonial phase, forming a tough biofilm, which got removed by the food poisoning. I think that's much less likely as an explanation.

 

[Wishful]

If could figure out what that was causing that shift, I do think they could maybe solve ME/CFS.

The problem with these temporary remissions is that it's hard to trigger one at need in a lab. If we could find a reasonably reliable trigger, then yes, they could do a whole bunch of before and after testing to see what changed. The only trigger I know of that multiple people have reported is prednisone or other cortisol drugs. Even if it only works on 1/100 PWME, maybe that would be enough to be worth trying, for such a potentially useful result. Note that it only seems to work once or twice per person.