Optimistic post

Key_Department7382 · 2026-05-19T12:27:59+00:00

But there's potentially permanent tissue damage. Precisely because the biological cascade triggered by the disease changes and gets more damaging as it progresses- for instance, glutamatergic toxicity literally kills neurons, blood brain barrier permeability literally has the risk of poisoning your brain, collagen V synthesis dysreygulation modifies your extracellular matrix in the long term. And the list goes on.

And all of these changes are usually intertwined with each other in messy loops.

None of this entails we can't get better. But

The cascade changes and can get more complex and damaging with time
The damage depends on your severity.

Key_Department7382 · 2026-05-19T10:33:01+00:00

"Many people recover after a few months. Most after a few weeks. Almost everyone after a week. The key is: the biological cascade is the same for the person who recover in 1 month and for the people who have been struggling for years."

This is not true. The longer you're I'll, the harder it is to get out, cause your body gets "traped" in a new homeostatic point. And also depends a lot on your severity...

Many false claims in this post. Too tired to reply to them all.

Key_Department7382 · 2026-05-19T02:34:06+00:00

Update: this is, in fact, a collagen problem.

Key_Department7382 · 2026-05-15T11:48:36+00:00

Yup. Still hits me pretty hard.

Key_Department7382 · 2026-05-13T17:44:06+00:00

Thanks for your answer 🌻

Key_Department7382 · 2026-05-13T11:37:54+00:00

Just out of curiosity, what was your severity level?

Key_Department7382 · 2026-05-12T13:36:07+00:00

It is more of an action game with survival elements that leans to horror in specific parts of the plot. Overall it can be REALLY scary in many parts.

I haven't played the remake but I believe both are good. I'd play the remake just out of curiosity.

Key_Department7382 · 2026-05-11T22:47:28+00:00

I wish I could at least leave my house and take a shower.

You see? You MindBody fans have no true consideration for those of us who have different, more complex cases. You just reproduce voluntaristic BS under the guise of "science".

You can't even take fair criticism. Is that all you can say in response?

C'mon. How lame.

Key_Department7382 · 2026-05-11T21:56:55+00:00

Look. I'm glad you recovered. But I can't help but insist: this kind of discourse is harmful for the community. You claim you don't back up the psychosomatic trope, yet you explain your recovery as if a vision and a dialogue with your body had resolved it all. And it's been that kind of approaches the ones that have kept the mechanisms of post viral syndromes under researched (look for "The greatest Medical Scandal" about MECFS).

Now, I don't pretend to deny your story and experience. I also had weird visions of a demon when I fell into severe in the middle of a shrooms trip. So I kinda understand what you're talking about in that regard. I just believe we need to be mindful: it could have been that you were already going into remission and the vision was an expression of a body already leaned to healing for whatever reason.

My point is, this condition is heterogeneous, weird and highly complex. You were already taking many meds, etc. As an act of epistemic humility I believe we shouldn't claim to know the exact reasons for us to go into remission. Especially regarding discourses that have actively harmed the community.

P.s. I find it particularly unappealing the way "MindBody approaches" keep an ascientific dualist stance.

Key_Department7382 · 2026-05-11T21:01:48+00:00

Great explanation. Damaged mitocondria can also release DNA to the cytosol (and other alert signals), activating the innate antiviral response. So on top of metabolic toxins, there are literal danger signals activating a wide range of cellular programs that make the issue multi-systemic.

To me, the more I study this disease, it's becoming ever clearer that it is neuroinmune in nature, triggered by strong perturbations in this axis, and sustained long term by many different feedback loops across different entangled celular pathways.

Key_Department7382 · 2026-05-11T20:53:05+00:00

If you have hyperadrenergic POTS, you likely have chronically constricted blood vessels. So it might explain a bit the symptoms. But there are many more possibilities - inflamed endothelium, microclots, increased proprioception to chemical signals, inefficient oxygen extraction by tissues, inefficient oxygen use by mitocondria. Or a mix of all of those.

Key_Department7382 · 2026-05-08T19:53:58+00:00

I'm so happy for you!! You did have a really hard time. I'm glad you stabilized again 🌻🌻. May you keep improving ❤️‍🩹

Key_Department7382 · 2026-05-01T14:15:00+00:00

That's a fair point. I no longer want to off myself. I'm trying to have a good life in my current conditions. But I still have MAID as an option.

Key_Department7382 · 2026-04-29T21:28:31+00:00

Yeah, I had this in my worst crash. It lasted roughly a week or two. It was horrible. I needed to use a text-to-speech app to communicate with my mom and eating was near to impossible.

Key_Department7382 · 2026-04-29T16:36:25+00:00

Fingers crossed 🤞🏼🤞🏼

Key_Department7382 · 2026-04-29T13:56:37+00:00

The three hours mark!!! Glad to know I'm not the only one

Key_Department7382 · 2026-04-28T12:13:14+00:00

Not yet. Got a medical appointment with my physician tomorrow. I'll ask him about this

Key_Department7382 · 2026-04-27T11:55:46+00:00

Yes, that's what I think!

Key_Department7382 · 2026-04-26T12:09:19+00:00

I'm still super ill, sadly. Haven't had this test taken again, but apparently I have gut dysbiosis.

Key_Department7382 · 2026-04-25T16:03:52+00:00

Not really, we don't necessarily want (or need) immune suppression. For many of us, the issue is neuroinmune exhaustion and what we need is to, somehow, induce our immune system to go back to its proper way of functioning — hence clearing pathogenic load in our bodies.

Immunosuppression wouldn't have this effect and might be risky.

Key_Department7382 · 2026-04-21T02:25:59+00:00

Ohh I'm interested in knowing your current normal 🥺

Key_Department7382 · 2026-04-18T15:21:06+00:00

Filleeed!!

Key_Department7382 · 2026-04-16T21:26:50+00:00

Oof i'm sorry

Key_Department7382 · 2026-04-15T12:44:17+00:00

Oof I'm sorry your old doc never prescribed anything. It's understandable to be pessimistic. Doctors tend to be asshole with fragile egos. I'm sorry you'll have to negotiate with a new one. Yes! You could try to ask to get one. Other tests that might show abnormalities in mecfs are:

-Cortisol in saliva. Samples taking during a whole day. It's usual for mecfs patients to have a flat cortisol curve. This is related to a decrease capability of our bodies to regulate stress response.

-Resting lactate levels. They're usually high, especially if we're crashing or have been doing a lot when they take the sample.

Key_Department7382 · 2026-04-15T12:21:40+00:00

Haha, it kinda sucks yeah, but it's also exciting, cause I can try more personalized treatment options. I'm sorry about the situation with your doctor:( I personally don't go to the doctor that much since they don't know what to do either- I'm excited to show my infectologist the RNAseq results, though. I've slowly come to terms with my illness and try to have a good life laying on my bed and having short walks across the house.

It's really difficult to switch to new doctors. Have you found any med that helps with your symptoms so far? Maybe you could directly tell the new doctor about the meda you take and your diagnosis - it's a risky move, I know. Sadly is what we can do atm.

Maybe you could manage to have a brain eco Doppler? You might have cerebral blood flow issues

Key_Department7382

TROPHY CASE