Login
You're viewing the post.lurk.org public feed.
  • Jun 27, 2026, 10:03 PM

    So up at the top: none of this is medical advice, every body is different, please do not interpret this as a suggestion to go try anything without doing your own due diligence first, etc.

    Ok, now that I've cast the proper rituals to ward away lawyers:

    I have a fairly common ME/CFS story - brutal episode of viral illness as a young teenager; mild to moderate disability ever since; was well into my 30s before figuring out what was going on; have never yet found a doctor who could help in any meaningful way; too much medical trauma to look more anyways.

    For the past 6 months or so I've been on a low dose of Acetyl-L-carnitine (ALCAR) as well as citicoline. There is solid research on these both separately and as a combo, and the most intriguing stuff (for me personally) is the finding that it's notably extra-effective for people with severe childhood trauma (which I also have).

    I'm prepared to say it's changed my life. I'm doing things I couldn't have dreamed of last summer. I genuinely can't remember when I had my last flare/crash. Even in the midst of a very stressful year, I'm just... not collapsing anymore. And I'm not depressed ever.

    [edit to add: oh yeah, like 90% of my migraine symptoms have vanished, too, and there's research backing that outcome as well]

    I know it's not going to help everyone, and I was always lucky to not have super severe symptoms.

    But I know how much I've ached for positive stories over the years, and now that I myself have one, well. Just seemed fitting to throw it out there.

    Anyone else got hopeful results, from this or other interventions?

    It just makes me think that the whole thing might be solvable for all of us, even if the details take more time to sort out... this may not always be incurable :heart_cyber:

    #MECFS #ChronicFatigue #LongCOVID

    💬 5🔄 10⭐ 0

Replies

  • 💬 1🔄 0⭐ 0
  • Jun 28, 2026, 2:11 AM

    @maloki Oh for sure, it always feels like such a gamble and like even 90% of the totally legit brands just give off really sketchy vibes lol

    💬 0🔄 0⭐ 0
  • Jun 28, 2026, 5:32 AM

    @amelia

    LDN has been unexpectedly amazing, not quite so much for my MECFS, but my PTSD in the process of trying to treat the MECFS. I could not remember the last time I'd had a restful sleep where I felt like the stress static in my brain got smoothed out from sleep. LDN changed that. It feel like my brain manages to sort some things out. I'm still exhausted but my brain feels more rested overall.

    💬 0🔄 1⭐ 1
  • Jun 28, 2026, 5:13 PM

    @RobotDiver Rest is such an important component of all this! I'm glad you've gotten at least some positive results, that's awesome!

    💬 0🔄 0⭐ 0
  • Jun 28, 2026, 6:35 AM

    @amelia

    That's super exciting!

    If you have any of the research bookmarked and are willing to share, I'd love to have a starting point for my own investigation into these.

    💬 1🔄 0⭐ 0
  • Jun 28, 2026, 5:21 PM

    @SocialGaff Sadly I didn't keep long term track of any of the stuff I was originally reading. To be honest I didn't think it was worth it to keep detailed notes, because I didn't think it would work well enough to matter 😅

    My general process is often to start with meta analyses, since they give the best summary overviews and often do the heavy lifting of filtering out stuff like exaggerated claims and flawed studies.

    As icky as google is, Scholar is still a fairly decent starting point, unless you happen to be lucky enough to have access to something like a university research network.

    Here's an example of the kind of search I started with: https://scholar.google.com/scholar?hl=en&as_sdt=0%2C48&q=acetyl-l-carnitine+meta+analysis&btnG=

    Some things to know:

    ALCAR goes by many names and abbreviations (LAC is common). Check for synonyms.

    The full name (acetyl-l-carnitine) is quite important. That "acetyl" does a lot of heavy lifting. Plain l-carnitine has different effects, side effects, and safety considerations (although both are pretty safe in general) so use care to distinguish.

    I'd do the same for citicoline (which also goes by CDP-choline, and also there are many varities of choline in the research, so again being careful about specific forms is important).

    Best of luck!

    💬 0🔄 0⭐ 0
  • Jun 28, 2026, 8:24 AM

    @amelia love learnin about nutraceuticals.

    nicotinamide mononucleotide (nmn) has helped regulate our sleep a little better. cbd has helped with energy and fatigue. but in both cases we need something with longer-lasting effects.

    alcar sounds interesting, how did you learn about it?

    💬 0🔄 0⭐ 0
  • Jun 28, 2026, 5:24 PM

    @pastelexuvia Secondhand mention from someone doing their own research into mitochondrial support. I figured it probably wouldn't do much, but almost certainly wouldn't hurt to try, so I picked up a bottle... and now half a year later, here we are, lol

    💬 0🔄 0⭐ 0
  • Toedeltoedeledokie@mastodon.art
    Jun 28, 2026, 11:13 AM

    @amelia I only have some mild improvement with ALCAR, but every bit helps 🌼

    💬 0🔄 0⭐ 0
  • 💬 0🔄 0⭐ 0