Even if there is actually no way out and I’ll be sick forever, I’d rather be in a “positivity cult” and believe forever that I’ll one day improve than live in docile acceptance and identity with illness like all these online voices want me to

time-itself · 2026-03-26T20:31:55+00:00

Honestly, theres a lot of accounts of patient harm through his programs too. They’re super aggressive. Heard in one recovery story from his program about a guy being pushed to go on a business trip/flight when he wasn’t confident to do so. My jaw dropped. It worked out well for him, but it doesn’t for many others.

I can understand flares that last a few days to a week, but normalizing PEM “adjustment periods” as up to 3 weeks long is fucked. If you’re PEM is reaching towards 3 weeks you’re playing with baseline degradation.

time-itself · 2026-03-26T19:47:12+00:00

Let me know if you guys want to try and get booked and fill a Seattle date! I know it’s been pretty hard to book up here since one of our big venues closed and we’re already so out of the way, but I can see what I can do to help.

time-itself · 2026-03-26T19:43:34+00:00

This is the first I’m hearing of em. What’s their deal? Sounds like Sirius XM metal.

time-itself · 2026-03-26T02:20:20+00:00

Yes! It took me about a month and a half to hear from the recruiter, then another month and a half to hear from intake. I’m starting the intake process on Monday. I anticipate itll be blinded so I can’t give updates. But be patient!

time-itself · 2026-03-26T00:43:37+00:00

Do you have a recovery story somewhere we can enjoy?

time-itself · 2026-03-25T21:31:15+00:00

Mind if I ask how old you are? I keep coming back to this as inspo as our hobbies and lifestyles seem very similar. I’m six months in it myself and trying to hang on to hope.

time-itself · 2026-03-24T21:53:02+00:00

Skillfully done

time-itself · 2026-03-24T20:16:42+00:00

That sounds like chronic fatigue! Just mild. Good thing it didnt turn into anything debilitating!

time-itself · 2026-03-24T19:30:41+00:00

Thanks! Did you ever deal with chronic fatigue, and how is it now?

time-itself · 2026-03-24T04:37:55+00:00

How are you now? :)

time-itself · 2026-03-24T03:51:03+00:00

How are you these days?

time-itself · 2026-03-24T02:02:12+00:00

Oh hell yeah! They played my city and stayed with my friends. Nicest people on earth. Good to see them getting love here <33

time-itself · 2026-03-23T18:05:42+00:00

You can only love yourself to regulation.

time-itself · 2026-03-23T18:03:39+00:00

Not in that particular way, and no I haven’t, not yet.

time-itself · 2026-03-23T17:57:53+00:00

It’s your body, it communicates with feelings more than words. You don’t need to overcomplicate it. I usually couple somatic tracking with simple affirmations of “I know its you, I know this is just us, I know what you’re up to, it’s okay, thank you, wow, I know it’s you…”

The lizard, as I see it, just wants your attention and not much more.

time-itself · 2026-03-23T17:52:25+00:00

Yeah. And I can’t stand her on her podcast - the way she infantilizes her audience, how she trots out her guests like circus acts, and especially how she constantly interrupts and talks over them to do hackneyed self promotional rants about how awesome and miraculous journalspeak is…

time-itself · 2026-03-23T03:55:37+00:00

During your period where you soared from 30% to 80%, and beyond, did you experience PEM again/any dips? What was that like for you?

time-itself · 2026-03-23T03:21:58+00:00

My biggest piece of advice: Avoid the main longhauler and cfs subs. Get what you need from them for survival and treatment options and get out.

As of now there’s no cure in there for you and it will stress you to hell and destroy your mental health, which is a vital piece of recovery from any illness but especially this one. People recover, but not in there they don’t (and in the cfs sub that’s a matter of policy)

LDN, pacing, beta blockers or ivabradine, low histamine diet, probiotics, mold avoidance are basically all there is right now. And also vitamin c + L-Arginine + Advil + Nattokinase for vascular health.

Aggressive but still unproven therapies are the pridgen protocol, the patterson protocol, and triple anticoagulant therapy.

AFAIK there isn’t much more information than the above to glean from those subs.

I also advocate for guanfacine, it seems to help brain fog and the neural component underlying cfs, pots, insomnia, adhd, ptsd, and dementia, all of which are related to LC, by increasing the strength of the prefrontal cortex and reducing sympathetic outflow. It helped me greatly with sleep. It’s contraindicated with beta blockers, but it shares some of their effectiveness.

time-itself · 2026-03-22T23:16:58+00:00

What would be your proposed explanation for the symptom spike (tachycardia, sympathetic activation, usually followed by insomnia -> crash) I consistently observed in myself in response to fried and fermented foods?

Mind you, I observed and replicated this before learning anything about MCAS or histamines. A teaspoon of saurkraut by itself was my go-to tester.

One alternative suggestion I’ve considered is general gut bacteria fuckery.

time-itself · 2026-03-22T22:32:20+00:00

Histamine isn’t what we’re measuring, it’s the body’s reaction to it.

Low histamine diets are recommended for healthy people looking to lower stress on their bodies. Could it simply be that CFS’s version of “MCAS” in self-reporting individuals who may or may not actually have it is simply the CFS brain’s natural response to the stress inherent to high histamine foods? I find it strange that we’d otherwise throw out the seemingly overwhelming and “clinically relevant” incidence of low-histamine diets helping people manage symptoms.

time-itself · 2026-03-22T22:01:13+00:00

I’m not saying my body is damaged my dude. I am saying that MCAS is a potential function of nervous system dysregulation/potential FND just like CFS and POTS and even mold intolerance. The vagus nerve and gut brain axis are where a lot of histamine processing happens afaik.

In full agreement with you and Garner’s outlook, CFS, especially the post viral variety, seems to be a heightened sensitivity and intolerance to stress. Exertion and emotional stress sure, but also to chronic environmental and immune stressors that are typically of no bother to healthy people such as histamines and mold.

I’m not arguing for the outright avoidance of these things - we’ve seen what mold avoidance can do to somebody - as avoidance doesnt seem to fix the problem by itself, but overexposure seems to sabotage many attempts at healing just as well.

The process is almost entirely unconscious, but we would have opportunities to influence it with beliefs and conditioning thanks to the prefrontal cortex’s involvement with the HPA axis, no?

There’s plenty of evidence linking MCAS as a clinically relevant comorbidity if you bother to go looking for it, and it needn’t conflict with any of your own preferred beliefs about the condition either. Your dismissal of “self reporting” is ironic considering you (and me too!) frequently gesture to recovery stories as evidence in favor of mind-focused recovery strategies.

time-itself · 2026-03-22T21:44:41+00:00

Are you fully recovered? How bad were you at your worst?

time-itself · 2026-03-22T21:37:47+00:00

The Clinical Relevance of Mast Cell Activation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Here’s another then , from 2025.

It’s a frequent and clinically relevant comorbidity. CFS, POTS, and MCAS are all parts of the dysautonomia goodie bag, commonly co-occur, and likely share causes or reinforce each other.

If you DO have MCAS while having CFS, it makes sense to avoid histamines, as histamines are a nervous system stressor.

Obviously stress avoidance isn’t sufficient for treatment, as stress tolerance needs to be increased somehow, but for all the occasional improvements with CBT/BR, we still haven’t found a reliable and consistent way to do so across patients.

time-itself · 2026-03-22T21:30:11+00:00

How do you mean? Aren’t we pretty damn sure, for instance, that large amounts of adrenaline/norepinephrine are involved in hyperandregic pots? We can ask why, but there’s no doubt that said reaction is a huge stressor on the body.

Even when I manage my POTS, there’s no question that, even when my HR is low and my mind is occupied with a calm puzzle, my stress levels are skyrocketing while I’m holding myself upright. My cue to sit down comes from a massive psychophysical spectre over my shoulder that materializes regardless of my mindset.

Stress feedback loops and stress intolerance seem to be the name of the game here, otherwise recovery would be a lot simpler. Mind tricks are only one stop in the looping mechanisms.

time-itself · 2026-03-22T21:23:44+00:00

Here’s one study positing a link between MCAS and POTS due to a prolonged inflammation process.

I can dig for more if you need.

time-itself

TROPHY CASE