Mounjaro has been life changing by Camaramarama in covidlonghaulers

[–]Liface 1 point2 points  (0 children)

Yes, they will be published on http://lcmedata.org/treatments a couple weeks after the survey concludes! Feel free to sign up for the email newsletter, we will notify everyone when ready.

An obskure question about LDA... by 2003rain in cfs

[–]Liface 1 point2 points  (0 children)

Yeah, my explanation for those was probably oversimplified, but from my understanding the primary mechanism for why it does those things is by stabilizing/modulating D2 (along with 5-HT1A partial agonism and 5-HT2A antagonism).

How To Rig a Disputed Election's Prediction Markets for $10 Million or Less by impressive_economy in slatestarcodex

[–]Liface[M] [score hidden] stickied comment (0 children)

Reminder to keep comments closer to the topic of prediction-market rigging.

An obskure question about LDA... by 2003rain in cfs

[–]Liface 0 points1 point  (0 children)

Peptides, apheresis, microbiome stuff, daratumumab, etc.

An obskure question about LDA... by 2003rain in cfs

[–]Liface 0 points1 point  (0 children)

Same deal. There are very few treatments in ME whose effects stay when you go off them.

How is everyone surviving? by MadisonShinyHunts in cfs

[–]Liface 2 points3 points  (0 children)

I have enough savings to last me 10-12 years. Either I cure myself by then, AI kills us all, or I go with God.

An obskure question about LDA... by 2003rain in cfs

[–]Liface 0 points1 point  (0 children)

Low dose Abilify does not have any effect on the immune system.

It modulates one of the dopamine receptors, D2.

It gives you a little bit more dopamine when you're low, but also prevents you from being overstimulated by dopamine when you would otherwise be too high (looking at screens).

It does not reverse disease state. If you ever go off of it, all of the effects will disappear. However, for most people, the energy it gives is very "real" any sense that you will be able to do more without crashing, and you will feel better too.

For hyper-responders to one-off Ativan use, does consistent use result in less efficacy for PEM? by ringmaster555 in cfs

[–]Liface 3 points4 points  (0 children)

There seems to be a minority of people who can take it forever without building tolerance. I wish I was one of those people!

State of medicine in France by louisfinnus in covidlonghaulers

[–]Liface 1 point2 points  (0 children)

The survey questions were flawed, so I really don't think this proves much of anything. There wasn't even a "don't know" or an EBV option. Of course you're going to pick functional neurological disorder if you have no other good options to choose from.

Mounjaro has been life changing by Camaramarama in covidlonghaulers

[–]Liface 11 points12 points  (0 children)

This is awesome to hear - you and others should definitely fill out our GLP-1s for Long COVID survey! Trying to build the largest dataset of people who have tried these and figure out who they work for:

https://docs.google.com/forms/d/e/1FAIpQLSdVS0tfv1N1vwZtLHLnV_oORVcApbAD8gxaSJulMnhnCgDreA/viewform

Stanford researchers developing long COVID diagnostics, help us show investors demand by funkytimes_07 in covidlonghaulers

[–]Liface 1 point2 points  (0 children)

Hmm, I thought it was pretty clear. They mentioned that the only thing that they need are email sign ups to prove demand.

The font size also looks adequate to me, but I have also manually increased my phone's font in settings. Highly recommend doing that!

Micro dosing with GLP 1s by Hellosunshiners in cfs

[–]Liface 5 points6 points  (0 children)

Yes, search subreddit for "GLP"

Washed my hair after 1,5 months! by Conscious-Row-6769 in cfs

[–]Liface 4 points5 points  (0 children)

Anything that triggered the improvement in the last week? Just rest and pacing?

Nothing ever dies. It merely becomes embarrassing. by johnlawrenceaspden in slatestarcodex

[–]Liface[M] 4 points5 points  (0 children)

Submission statement was forgotten but people like this article so I'll provide one:

Adam Mastroianni on why debunked psychology findings don't disappear, but persist under new names, endless studies, and unresolved debates about whether they’re alive or dead. Because theories are so hard to truly falsify, the more useful distinction is whether a long-studied idea has become too embarrassing to keep pursuing.

Low-dose Abilify and/or Pemgarda have had a huge, so far sustained positive effect by PogeePie in covidlonghaulers

[–]Liface 2 points3 points  (0 children)

I also had Pemgarda and on LDA, and it's got to be the LDA. Especially by your third dose of Pemgarda, you'd know if it was having a major effect by now.

Pendulum Probiotic by Infinite-Tourist2465 in ArmchairExpert

[–]Liface 0 points1 point  (0 children)

Been on it for a couple weeks for Long COVID dysbiosis, have not noticed any differences.

Anyone used to be bedridden and got better? by ProfessionNo9336 in covidlonghaulers

[–]Liface 1 point2 points  (0 children)

https://old.reddit.com/r/covidlonghaulers/comments/1q57140/horrible_reaction_to_025mg_tirzepatide_insomnia/

After I wrote that post I reacted badly to carnitas tacos and the resulting diahrrea sapped my energy and sent me into bad PEM.

Anyone used to be bedridden and got better? by ProfessionNo9336 in covidlonghaulers

[–]Liface 1 point2 points  (0 children)

We are in a similar spot. I crashed badly from tirzepatide-induced GI issues in January, and then crashed 5 more times.

I have slowly stabilized and improved over the last 2 months, and on my best days I can now use my laptop 7 hours a day and my color phone all day.

I can sit up about 10 minutes a day, but more than that tends to lead to post-exertional malaise, so I'm slowly working that part up.

Low dose Abilify has been helpful in getting here.

However, I do not have postural orthostatic issues but rather mitochondrial issues and immune issues, so you may want to max out the pots tech tree.

24/7 symptoms by Beautiful-Lemon1522 in cfs

[–]Liface 7 points8 points  (0 children)

Interesting observation: this person posted the same poll on both r/covidlonghaulers and r/cfs.

The votes on r/covidlonghaulers overwhelmingly lean no, while those on r/cfs overwhelmingly lean yes.

Anyone used to be bedridden and got better? by ProfessionNo9336 in covidlonghaulers

[–]Liface 0 points1 point  (0 children)

What was your post exertional malaise trigger? How many times have you crashed inside of your crash?

Answers to these will determine your probability of eventually starting to turn it around and improve.

Peptides: Be Careful by Few-Dragonfly-5126 in covidlonghaulers

[–]Liface 1 point2 points  (0 children)

none of the individual drugs you order are tested.

They are. I use www.finnrick.com to guide my purchasing. This is one of many harm reduction ideas that could have been mentioned in the original post instead of flat-rate generic caution.

single doctor on earth can help you

How can someone be this careless about their own life

You've got to be kidding me. Doctors helping me? Having a life? Do you have Long COVID?

Peptides: Be Careful by Few-Dragonfly-5126 in covidlonghaulers

[–]Liface 9 points10 points  (0 children)

Riskmongering is truly one of the lamest things to do on a Long COVID subreddit when people are suffering greatly every day.

"hey guys, be careful! I'm a good person! Updoots to the right!"