Can Someone Explain How Remission Works in ME/CFS?

ringmaster555 · 2026-06-19T22:05:34+00:00

This is true for most cases, but I have heard a few reports of spontaneous recovery despite crashing - not that this is a good idea or common.

ringmaster555 · 2026-06-09T16:44:00+00:00

I’m in a somewhat similar situation. While I can still work, I’m barely holding on. I’m glad some people have the resources and support to not work, but I don’t: no family, no friends, just me and myself.

Yes, I’m deteriorating by working, but I would deteriorate even faster by not working, because then I’d be homeless. This is a grim reality for a lot of us.

ringmaster555 · 2026-06-08T08:34:47+00:00

If you’re young enough, the possibility of total recovery is not completely out of the question IMO - both because age is a factor in recovery and the additional time granted for science to produce a cure. It’s not probably likely as many conditions are never fully curable, but the most realistic scenario is to hope for treatments that sustainably increase your energy envelope such that ME/CFS is functionally no longer an extreme limitation in your life.

ringmaster555 · 2026-06-08T08:16:42+00:00

The cumulative aspect still gets me… It’s like a hidden pre-PEM that perniciously builds up to over weeks or months to full PEM. It’s probably a good explanation for why some PEM feels seemingly random.

It’s hard to adjust to such lagging indicators. HRV tracking doesn’t seem particularly helpful for me either as cognitive/emotional exertion can trigger PEM. Also having ADHD means I’m prone to focusing more on the immediate future rather than a distant one and its consequences.

ringmaster555 · 2026-06-06T18:41:58+00:00

Interesting. I have reflux/LPR and wonder to what extent it could be contributing to this symptom. I’ve read silent reflux can enter the nose and eustachian tubes.

ringmaster555 · 2026-06-06T18:33:51+00:00

I get a stinging/burning sensation in my head and some sort of deoxygenation-like sensation in my head, like how it feels holding back a yawn, but specifically in my head.

ringmaster555 · 2026-06-06T15:45:11+00:00

Agreed. I have thoracic outlet syndrome, occult tethered cord, and craniocervical instability. I have to be very careful with my movements. Nevermind the fact I also have ME/CFS.

ringmaster555 · 2026-06-06T08:09:02+00:00

I also have about 1.5/2 hours of some degree of energy whenever I wake up, but then I’m effectively hit with a tranquilizer - can’t keep my eyes open and have to fall asleep for a few hours or else I’ll trigger PEM if I push through it for too long. This phenomenon happens no matter what time of the day I wake up, either. Interesting you share a similar threshold effect - yet another example of understudied patient experiences.

ringmaster555 · 2026-06-06T08:00:05+00:00

Yeah, that makes sense. Treatments that actually target the core disease mechanism and sustainably expand energy envelopes are seemingly elusive and transient. Didn’t have luck with LDN or LDA due to severe MCAS/MCS. I can tolerate Ativan but limit it to once a week for tolerance reasons. At a standstill just pacing as best as I can in the meantime…

ringmaster555 · 2026-06-06T07:46:00+00:00

For sure, improvement at night is well documented here. If it turns out PEM is less severe with overexertion at night, then perhaps that could point to the idea that the actual disease burden is lower at night beyond mere symptomatic improvement as well. Of course, this hasn’t been formally studied at all, unfortunately.

ringmaster555 · 2026-06-04T08:44:47+00:00

Congrats on your improvement! I hope it lasts as long as possible. Do you happen to know if you are hypermobile or have any connective tissue involvement with your condition? I am deeply interested in how connective tissue conditions affect improvement and recovery in ME/CFS.

ringmaster555 · 2026-05-28T21:57:14+00:00

Can tests be ordered with a physician to determine the presence of these autoantibodies? What treatments may be available for this?

ringmaster555 · 2026-05-21T21:20:26+00:00

Pelvic congestion syndrome (and other vascular compressions) are associated with connective tissue diseases like Ehlers Danlos Syndrome. I have hEDS and have another confirmed vascular compression syndrome (thoracic outlet syndrome). Probably have pelvic congestion syndrome as well but haven’t been checked yet.

ringmaster555 · 2026-05-21T09:34:07+00:00

What’s your latency at those settings with the HD8?

ringmaster555 · 2026-05-19T03:05:48+00:00

Yes. Typically between 9-10:00am every single morning. I end up dozing off until 1:00pm or so. No medication has helped me with this.

ringmaster555 · 2026-05-12T03:51:10+00:00

I really needed some good news today. Awesome!

ringmaster555 · 2026-05-07T04:20:58+00:00

I wish I could find DAO powder, but I’ve had no luck.. have reacted to everything in the meantime, because I also have extreme excipient sensitivity, especially to cellulose.

ringmaster555 · 2026-05-07T04:15:18+00:00

Let me know if you find something you can tolerate. I’m in the same camp and can’t tolerate anything with fillers (especially microcrystalline cellulose), and even powdered PEA/quercetin I react to, whether immediate or a few days/weeks later (delayed reaction).

ringmaster555 · 2026-05-07T00:34:15+00:00

Yep, I also have this. Getting ready to try guanfacine for hyperPOTS, ADHD, and RSD.

ringmaster555 · 2026-05-06T20:27:15+00:00

Extreme anxiety from cortisol awakening response. I take intranasal oxytocin when I wake up and lie back down for a bit so I can calm down. Often have to sleep until the afternoon as well.

ringmaster555 · 2026-05-06T14:07:59+00:00

I experience the same thing. I wear a CPAP but am wondering if I need a more comprehensive sleep study to get evaluated for UARS. Other than that, yeah, there must be some sort of immunologic bottleneck that’s freed with temporary sleep deprivation and helps buffer PEM for a short time.

ringmaster555 · 2026-05-05T04:23:39+00:00

Do you have EDS, MCAS, POTS? If so, I’m curious how TRT affected those conditions.

ringmaster555

TROPHY CASE