r/LongCovidWarriors

Welcome! This is a space to take a load off and mingle with your fellow warriors. Say hello. and if the mood and energy strikes vou, let us know a bit about yourself and/ or what's going on.

If you are generally prone to lurk, this is a safe space to just post a quick hello. Feel free to ask a question here that you might not feel safe making a solo thread about.

The intention is to make this a daily thread where we can all touch base and lay down some of our burdens for a while. If vou log on and don't see the Break Room open go ahead and grab the keys and open it yourself. 😄

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Welcome! This is a space to take a load off and mingle with your fellow warriors. Say hello. and if the mood and energy strikes vou, let us know a bit about yourself and/ or what's going on.

If you are generally prone to lurk, this is a safe space to just post a quick hello. Feel free to ask a question here that you might not feel safe making a solo thread about.

The intention is to make this a daily thread where we can all touch base and lay down some of our burdens for a while. If vou log on and don't see the Break Room open go ahead and grab the keys and open it yourself. 😄

Hey everyone

I have been invited to speak at the australian long covid conference this year to talk about my experience. Im going to focus my speech on severe long covid and severe mecfs because I feel many researchers do not understand enough about it. Im focusing on how disabling long covid can be, how research is still continuing to psychologicalise our condition which is harming us and the need for better quality research so australian doctors and policy (eg; access to ndis) can change.

Love to hear peoples thoughts. I dont wanna feel like im leaving my scope of talking about lived experience but I have an opportunity to advocate to researchers and I want to use it.

Hi, Warriors🤍

It’s time for a new community challenge and this one’s designed to boost connection, give hope, and share real things that helped real people this week. No pressure to write long comments. No pressure to be “doing great.” Just one thing that made your week a tiny bit more manageable.

💬 Question:

What’s ONE thing that helped you this week?

It can be anything:

✨ A supplement.

✨ A symptom hack.

✨ A mindset shift.

✨ A small win.

✨ A food that didn’t cause a flare.

✨ A kind moment.

✨ Something that made you smile.

✨ Or even “I rested and survived the week”

If it helped you, it counts.

💡 Why This Challenge Matters

Sharing these moments helps:

⭐ New people find ideas.

⭐ Everyone feel less alone.

⭐ The community grow stronger.

⭐ You celebrate progress you might’ve overlooked.

You can reply with just one sentence or even one word. Whatever you’ve got today is enough.

❤️ Let’s lift each other up

Drop your “one thing” below. Come back later and support someone else. Even simple comments like “same,” “I needed this,” or an upvote can make someone’s day.

We’re in this together. I can’t wait to read what helped you this week 🌿💚

Welcome! This is a space to take a load off and mingle with your fellow warriors. Say hello. and if the mood and energy strikes vou, let us know a bit about yourself and/ or what's going on.

If you are generally prone to lurk, this is a safe space to just post a quick hello. Feel free to ask a question here that you might not feel safe making a solo thread about.

The intention is to make this a daily thread where we can all touch base and lay down some of our burdens for a while. If vou log on and don't see the Break Room open go ahead and grab the keys and open it yourself. 😄

Welcome! This is a space to take a load off and mingle with your fellow warriors. Say hello. and if the mood and energy strikes vou, let us know a bit about yourself and/ or what's going on.

If you are generally prone to lurk, this is a safe space to just post a quick hello. Feel free to ask a question here that you might not feel safe making a solo thread about.

The intention is to make this a daily thread where we can all touch base and lay down some of our burdens for a while. If vou log on and don't see the Break Room open go ahead and grab the keys and open it yourself. 😄

Hi everyone,

I am writing on behalf of my partner who has ME/CFS. We are considering looking into a very low dose of Fluvoxamine to see if it could help with his symptoms. Like many with this condition, my partner is extremely drug sensitive, which is why we want to look into starting significantly below the standard therapeutic dose. He has CYP2D6*10 reduced metabolism, so the medication will accumulate in his body more than normal.

I know Fluvoxamine is sometimes discussed in relation to neuroinflammation, but we are very cautious and concerned about triggering a severe crash or worsening their post-exertional malaise. We would love to hear if anyone here with ME/CFS, or your partners, have tried Fluvoxamine at very low levels. We are especially interested in knowing how the body reacted initially, if it caused any central nervous system activation like insomnia or jitteriness, and whether it ended up helping with any specific symptoms or causing a setback.

Thank you so much for your help and insights.

I’ve been suffering from severe insomnia. You can see I posted about this a few times.
This could be anecdotal but worth a try.
I did a few bits and pieces yesterday (I have ADHD,so pacing is hard) and went to the corner shop (1 block) on the way back I felt I was coming down with a crash. I read somewhere that sodium bicarbonate could help to stop the PEM crash so I went for it of course. I rested after that but the most insanely effect for me was that I slept like a baby for the first time in MONTHS without the need of meds.
I did take the progesterone orally in the odd chance it would help me. It never does just makes me weaker.
I also read that this is something that SHOULD NOT BE DONE EVERY DAY but as a once in a while, once a month or something I think could be a good helper for us non sleepers.

Hi, Warriors🤍

It’s time for a new community challenge and this one’s designed to boost connection, give hope, and share real things that helped real people this week. No pressure to write long comments. No pressure to be “doing great.” Just one thing that made your week a tiny bit more manageable.

💬 Question:

What’s ONE thing that helped you this week?

It can be anything:

✨ A supplement.

✨ A symptom hack.

✨ A mindset shift.

✨ A small win.

✨ A food that didn’t cause a flare.

✨ A kind moment.

✨ Something that made you smile.

✨ Or even “I rested and survived the week”

If it helped you, it counts.

💡 Why This Challenge Matters

Sharing these moments helps:

⭐ New people find ideas.

⭐ Everyone feel less alone.

⭐ The community grow stronger.

⭐ You celebrate progress you might’ve overlooked.

You can reply with just one sentence or even one word. Whatever you’ve got today is enough.

❤️ Let’s lift each other up

Drop your “one thing” below. Come back later and support someone else. Even simple comments like “same,” “I needed this,” or an upvote can make someone’s day.

We’re in this together. I can’t wait to read what helped you this week 🌿💚

Hi LC Warriors. I have had LC, ME/CFS, POTS, etc for just over 4 years. Over this period I have had many ups and downs and PEM crashes of varying severity. My latest crash has been pretty bad and with a significant worsening of one specific symptom. Now when I walk more than say 25 yards or 10 yards on a moderate incline, my legs burn terribly and are completely gassed. I get a similar result when using my arms to wash my hair as an example. It seems like my muscles are not getting adequate oxygen even with just very minimal exertion. What is “new” is how ridiculously fast my muscles burn and how severely they burn. Also, if I try to keep walking thru the burn, I crash even harder the next day. Has anyone else experienced this? Besides rest, is there anything that I can do to help recover?

By the way, I really love this community due to complete lack of judgement, gaslighting, etc and lack of scams trying to sell me bogus remedies. Stay strong.

Welcome! This is a space to take a load off and mingle with your fellow warriors. Say hello. and if the mood and energy strikes vou, let us know a bit about yourself and/ or what's going on.

If you are generally prone to lurk, this is a safe space to just post a quick hello. Feel free to ask a question here that you might not feel safe making a solo thread about.

The intention is to make this a daily thread where we can all touch base and lay down some of our burdens for a while. If vou log on and don't see the Break Room open go ahead and grab the keys and open it yourself. 😄

Welcome! This is a space to take a load off and mingle with your fellow warriors. Say hello. and if the mood and energy strikes vou, let us know a bit about yourself and/ or what's going on.

If you are generally prone to lurk, this is a safe space to just post a quick hello. Feel free to ask a question here that you might not feel safe making a solo thread about.

The intention is to make this a daily thread where we can all touch base and lay down some of our burdens for a while. If vou log on and don't see the Break Room open go ahead and grab the keys and open it yourself. 😄

FYI: presented by RTHM Health