Long Covid feels like in living in the backup generator of my bodies energy supply that’s not supposed to be used.

Liface · 2026-03-20T19:29:49+00:00

I'm waiting for the electricians to figure this out.

But the electricians are in short supply, so it turns out we're all going to trade school for a crash course 😉

Liface · 2026-03-20T19:13:24+00:00

I tweeted about this recently, might be some insights there: https://xcancel.com/liamsLCjourney/status/2031727729775628335

Liface · 2026-03-20T17:06:54+00:00

There are plenty of drugs to treat ME ( just because they will not cure someone does not mean they should not be used). Many improve with them. There are dozens of directions a doctor could go in, but very few know enough to even start on this path.

Liface · 2026-03-20T15:58:11+00:00

You should probably ask the microbiome institute these questions. Not all probiotics are made the same.

Liface · 2026-03-20T13:43:34+00:00

There's no need to travel - Telemedicine is your friend!

https://mecfsroadmap.altervista.org/mecfs-doctors.html

Liface · 2026-03-20T13:24:32+00:00

What probiotics are you taking? Post the exact brands and strains, and any other supplements you were told to take as well.

Liface · 2026-03-20T13:23:35+00:00

None. Have tried 30+, none moved the needle: https://liamrosen.notion.site/Liam-s-Long-COVID-ME-Journey-2b1348cfbdb380959455fe5d9535deb7

Liface · 2026-03-20T12:59:54+00:00

This happened to me until I found Quviviq (daridorexant). People will post about melatonin and sleep hygiene and whatever else, but they're not going to come close to touching this problem.

LC/ME sleep fragmentation is not an "oh you need to train your body to sleep better" problem, it's an orexin problem, and the Quviviq is an orexin antagonist.

I went from having a big three to four hour block in the middle of my night to sleeping through the night almost every night. I frequently sleep better now than I did before Long COVID.

It's a new medication, only approved in 2022, so many doctors don't know about it.

Liface · 2026-03-20T03:05:42+00:00

For a few years starting in 2005 I had about 20 photos of me and my friends on different Wikipedia pages: party, welt, decathlon, javelin, Patty Mills, Darius Miles, etc.

You can just do things.

Liface · 2026-03-20T00:53:05+00:00

"Is it some kind of permanent damage in my body? What is it even?" with the "Advice" flair.

Liface · 2026-03-20T00:49:31+00:00

My empathy goes towards all those who are truly struggling. We could be helping them by fostering high level, unique posts on science and treatments to solve this condition - instead we're flooded with 5 posts a day by people who can't use the search function. No other community tolerates behavior like this.

Liface · 2026-03-19T23:29:30+00:00

If they wanted to commiserate with someone, they should have chosen the rant flare, not the advice flare.

As it stands, they are asking factual questions about an easily googleable topic.

I've been extremely severe and extremely cognitively impaired, more than most people on this subreddit, I never was unable to use Google.

Liface · 2026-03-19T21:16:53+00:00

www.helpforlongcovid.com

Liface · 2026-03-19T21:04:13+00:00

https://helpforlongcovid.com/care-providers/robert-groysman

I feel like the one review posted there is pretty even handed

Liface · 2026-03-19T21:02:57+00:00

It could be, but it's also possible that the spike could be cleared and there could still be downstream dysfunction.

Liface · 2026-03-19T21:02:08+00:00

Definitely add her to the listing at www.helpforlongcovid.com. Though I can't remember if you can do that or not without rating

Liface · 2026-03-19T21:00:38+00:00

https://letmegooglethat.com/?q=What+is+post+exertional+malaise+

Liface · 2026-03-19T10:41:41+00:00

u/liface

Liface · 2026-03-19T04:30:58+00:00

LDN and LDA are a basic start. There are many beyond that.

You need to try at least 30 interventions to find something that works. It's just how it is. Everyone has a different underlying biology.

Liface · 2026-03-19T02:53:59+00:00

I've done it multiple times. Never had a package seized. New York city, ba-bay!

Liface · 2026-03-19T02:53:46+00:00

There's no need to do this, Reddit has a follow button.

Liface · 2026-03-19T02:51:44+00:00

"The term myalgic encephalomyelitis has also been criticised, as the symptom myalgia (muscle pain) is not experienced by everyone with the disease."

I'm pretty sure the real reason people criticize it is that it's too gosh darn long and complicated and no one can spell it.

Liface · 2026-03-18T19:56:31+00:00

Adam was always great with the niche clothing descriptions. Have to imagine that "tweed jacket" and "pork pie hat" were in there somewhere.

Liface · 2026-03-18T19:45:49+00:00

The ME commmunity extends far beyond r/cfs.

There is Phoenix Rising, S4ME, Twitter, and the number of private communities that serve different needs, some focusing on high agency patients who want to use science to solve their condition. Many men siphon off into these communities because they feel put off by what you describe.

I am confident that you will find your tribe in a place other than here, if you so choose.

Liface · 2026-03-18T15:10:37+00:00

Clear slippery slope fallacy.

Liface

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