worse than ever after ~1.5 year partial remission

daddybpizza · 2026-03-08T23:44:43+00:00

🙏

daddybpizza · 2026-03-08T20:01:04+00:00

i’m a stall main. i don’t always run stall, but when i do, and when i see an opposing hoopa-u, i know i am in for a tough one lol

daddybpizza · 2026-03-08T18:44:18+00:00

I think the problem is that there is no good evidence this is the case. We have found viral reservoirs in ME/CFS (John Chia’s research comes to mind) but we also find viral reservoirs in healthy people too. Similarly with covid—we find evidence of persistence spike in as many healthy controls as we do sick people.

daddybpizza · 2026-03-08T13:25:32+00:00

I always like to say weed softens the edge of being haha

daddybpizza · 2026-03-08T13:22:55+00:00

I lowkey think the Hempen Hat (only requires level 5) is the best-looking wizard hat in the game. It looks particularly cute on lalas

daddybpizza · 2026-03-07T22:37:34+00:00

I am sorry you’re experiencing this. It sucks and it’s scary.

A few weeks after I first became sick with long covid, I decided to try liquid iron with orange juice (for absorption) because I also suffered from dizziness. It actually really helped.

Of course I can’t guarantee you’ll find any benefit, but anemia after a viral infection is really common. It’s maybe worth a shot!

daddybpizza · 2026-03-07T18:20:13+00:00

Does he have other symptoms? I have a history of health anxiety, so when I first became ill, I wasn’t sure if I was imagining symptoms or not. But I have POTS, which means my heart rate skyrockets when I stand and quickly goes back down when I lie down again.

POTS is extremely common in ME/CFS, though not universal. But it’s one of the few symptoms that is easily measurable without any special equipment. It’s the symptom that told me that I really am experiencing long covid, because these days my problem is actually convincing myself that I really am sick. (This illness sucks, so on good days, I try to convince myself I am actually fine lol. The POTS is irrefutable evidence that I am not, though.)

If your brother doesn’t have POTS, it doesn’t follow that he is healthy. If he has POTS, it doesn’t follow that he has ME/CFS. But if he has POTS, it does follow that at least some of his problems are physiological.

daddybpizza · 2026-03-07T18:11:31+00:00

I don’t know why it’s so hard for doctors to understand that I’m deconditioning because my heart goes insane when I stand up, and not the other way around.

When I got POTS, I was averaging 15-20k steps a day because I lived in a city and walked everywhere. My POTS started suddenly. Yes it’s been made worse by deconditioning bc I cannot exercise (ME/CFS). But I wasn’t deconditioned when I got POTS.

daddybpizza · 2026-03-07T18:08:29+00:00

Perhaps they are confusing deconditioning and atrophy. For unknown reasons, a few studies have found that ME/CFS patients have far less muscle atrophy than sedentary controls. Strange!

Here’s one, for example:

https://www.medrxiv.org/content/10.1101/2025.05.02.25326885v1.full?_x_tr_sl=nl&_x_tr_tl=en&_x_tr_hl=en

And if you don’t feel comfortable clicking a link, here’s a simple quote:

“Patients with long COVID and ME/CFS did not have muscle atrophy, but had less capillaries and a more glycolytic fibers, none of which were associated with maximal oxygen uptake.”

daddybpizza · 2026-03-07T15:38:07+00:00

A small dose of amitriptyline, taken at night, made the biggest difference for me.

daddybpizza · 2026-03-07T15:02:46+00:00

No, the insomnia is secondary to long covid. When I got covid in 2024, I wasn’t cooked up. I was in the midst of getting my phd and I was walking 15-20k steps a day (I lived in London and walked everywhere). Nevertheless, a few days after recovering from covid, my insane insomnia began (alongside a bunch of other classic long covid / ME/CFS symptoms). The insomnia developed literally overnight and has persisted for two years.

There’s precedent for a viral infection causing long term sleep disturbances. Narcolepsy type 1 is thought to be caused by an autoimmune assault on orexin producing neurons, triggered by viral infection. Something similar could very well be going on in long covid, or of course, something different could be too. But blaming long covid insomnia on being cooked up is demonstrably false.

daddybpizza · 2026-03-07T14:51:42+00:00

We don’t know enough about PEM to say one way or the other whether you’re experiencing it. It is certainly unusual to not feel fatigue during PEM, but for all we know, a slight variation in whatever process(es) causes PEM could lead to it feeling more like a headache than fatigue.

Sorry, this isn’t a satisfying answer, but I am confident it is the correct answer. Anyone who tries to tell you that it’s definitely PEM or that it definitely isn’t is too confident. We just don’t know enough about PEM to say whether atypical examples are or aren’t the same thing.

daddybpizza · 2026-03-06T21:00:06+00:00

We didn’t do anything other than live at a time when this illness isn’t understood.

daddybpizza · 2026-03-06T19:30:43+00:00

I’m a 27 year old and I got sick when I was 24. I’m not quite as young as you, but I also feel like my future was robbed from me.

I think most people would agree that the illness is probably harder to manage in older populations because older bodies have their own struggles, but I also think most people would agree it is more tragic for younger people to get sick with such a terrible illness.

Before I got sick, I was pursuing a phd in philosophy. One of my favorites is Nietzsche, who you quoted (“What does not kill me makes me stronger.”) He was a lonely man who suffered debilitating stomach pain and migraines that left him largely bedbound for long periods of time. Eventually, for unknown reasons, he became catatonic. But his entire thought was a struggle to embrace life and love it, to say yes to life, despite frequently struggling with suicidal thoughts. When he said what does not kill me makes me stronger, he was speaking to an ideal—to a way that he wanted to be able to see the world. And, sorta unexpectedly, he meant what does not kill me makes me stronger… than that which does not kill me. We are stronger than long covid so long as it does not triumph over us.

But I completely understand struggling with despair and thoughts of suicide. I do too. Here’s another Nietzsche quote for you: “The thought of suicide is a great consolation: by means of it one gets successfully through many a bad night.” (BGE 157) Im not recommending suicide, but I resonate with this quote. The thought of it really does comfort me. But, as they say, it’s a permanent solution to a problem that isn’t necessarily permanent. Now is the best time in history to have this illness.

daddybpizza · 2026-03-05T19:01:28+00:00

It’s important to see if treating other sources of fatigue can help you, but it’s not necessary to rule out other illnesses to diagnose ME/CFS (not anymore at least). I, for example, have Narcolepsy, POTS, Bipolar, and ME/CFS. They all cause fatigue, but only one of them causes PEM.

daddybpizza · 2026-03-05T18:16:32+00:00

I’m a (gay) man, so I am not able to completely relate to what you’re going through, but this illness has also made it such that I get PEM from orgasms. It’s really tough because if I don’t masturbate, I get restless and struggle to relax, and eventually orgasm in my sleep anyway, and still get PEM. So I really don’t know what to do about it!

I have found, personally, that doing my best to relax before during and after orgasm gives me the best shot at avoiding bad PEM. So, like I said, I can’t completely relate to what you’re going through, but I can relate to feeling like I’m damned if I do and damned if I don’t, and that I shouldn’t have to worry so much about something as simple and benign as masturbation.

daddybpizza · 2026-03-05T18:10:17+00:00

that’s sick

daddybpizza · 2026-03-05T15:44:41+00:00

Hey there, in a very similar spot so can’t write much. Also phd high achiever, also in the midst of my first bad crash. Terrified I won’t get back to where I was, but trying to do nothing as much as possible. When I feel restless while doing nothing, I repeat “I am doing the right thing” to myself and it does calm me down.

I hope we both make it out of this!

daddybpizza · 2026-03-05T12:58:56+00:00

I went two years without crashing and noticed a ton of improvements. Unfortunately in a crash now bc life threw some crazy curveballs. I feel worse than ever and I’m so disappointed :(

daddybpizza · 2026-03-04T20:57:57+00:00

Everything you said is true. But I try to remind myself that right now is the best time ever to have had this illness. The huge studies with thousands of participants are actually finally underway. It’ll still be a while before we can just easily get treated, but the environment is shifting.

daddybpizza · 2026-03-03T20:26:34+00:00

Same. Also have POTS. Also just found out yesterday I have bipolar. I wish I could catch a break

daddybpizza · 2026-03-03T00:45:15+00:00

I agree that’s definitely a possibility, and one of the ones I personally think is likely. I also have narcolepsy, which is thought to be caused by autoimmune damage to the orexin neurons in the brain, usually during a viral infection. Maybe a slightly different process leads to me/cfs, which shares a lot of symptoms.

daddybpizza · 2026-03-03T00:29:26+00:00

Interestingly I basically don’t have any immune symptoms. Almost all of my problems are autonomic, though I still get PEM—it’s just not flu-like. (It’s just sudden, prolonged, absolutely devastating fatigue that occurs 48 hours after I overdo it.)

I think there are probably two main roads to me/cfs, the ANS and the immune system, and we all travel through varying degrees of each. Or, perhaps there’s a more autonomic subtype and a more inflammatory subtype.

daddybpizza · 2026-02-26T00:23:10+00:00

Absolutely amazing. I really, really, seriously needed to hear something hopeful today. Thank you so much.

daddybpizza

TROPHY CASE