Brain FADE syndrome: the final common pathway of chronic inflammation in neurological disease, 2024, Khalid A. Hanafy

Oh for goodness sake! I am so stupid! when i read what you said about it initially here...

i read it as meaning the remission lasted only minutes. I'm thicker than Homer Simpson! My brain has really not been working well on here recently i keep reading things wrong, so sorry to have taken the thread off on a totally unnecessary tangent

I caused one on another thread recently too. KMN lol

 

Since entering perimenopause, I've been having this very thing. A week after one of only two periods in 2022, that icky flu-like feeling began to lift around 9pm on a Friday night in April. It's not unusual for me to experience fluctuations in malaise, but in this case I was repotting plants out on my balcony by Sunday morning, something I hadn't been able to do in years. It indeed felt like someone had flipped a switch. Given that I had been mostly bedbound for ten years, it was all the more remarkable (and totally belies the idea that we're sick because we insist on staying in bed!).

As the weeks went by, I was puttering around my apartment more, sewing and doing minor DIY projects through the summer, even taking the odd venture outside. By autumn, the malaise levels began to increase again--though this time more gradually. If you looked at my step counts, they seemed pretty stable. But my activity level and Time Out of Bed metric (TOB) was pretty pathetic. So I could still move the same, just felt really shitty while doing so. Since then I can have wild swings with abrupt onset of malaise only for it to lift an hour or even moments later. Needless to say, it's made any sort of systemic pacing very difficult.

In 2015 I had a severe crash after being treated with amoxicillin/clavulanate resulting in moderate levels of diarrhea. Once we got the diarrhea under control, I remember being surprised at just how quickly the reduction in that overwhelming malaise was--within 12-24 hours. To be sure, I still wasn't back to my Usual Shitty Baseline step count-wise even a year later. But I could tolerate opening the blinds and human interaction again within a day.

And, of course, my PEM is delayed (usually about 36hours) but when it hits, it's abrupt and hard.

I remember finding the recent discussion about energy and PEM in this thread slightly frustrating. While my subjective experience of PEM is pretty similar to what everybody else was describing--that sense of a depleted battery, etc., my experience with such an abrupt improvement made me agree with @Jonathan Edwards that "energy depletion" or mitochondria/ATP levels or something mechanical couldn't be the problem here. A signalling switch or switches (given all the complex feedback loops) sounds far more plausible.

 

I've also had various experiences of abrupt major improvement which make me rule out various hypotheses involving muscle pathology etc.

On the rare occasion when I get a cold, my energy levels improve noticeably in the first day or two, then crash back to Usual Shitty Baseline combined with respiratory symptoms.

I've also occasionally stumbled on supplements that were temporarily able to overcome whatever pathological feedback loop is going on and dramatically improve my level of functioning for days or even weeks/months, before returning to baseline. Sometimes the return to baseline was abrupt, other times gradual. I recall in particular a couple of instances in the past when I went from bedridden (for several years leaving the bed only to go to the toilet) to being able to walk the dog within 20 minutes of taking something with only mild symptoms of fatigue. These experiences are how I know this illness isn't caused by deconditioning but it's also how I'm able to disregard many biomedical research papers that come out.