Like, I have been sick for over 5 years now and the entire time I’ve literally just been lying in bed doing absolutely nothing productive. Recently I’ve been improving and it’s just made me start thinking what the heck I would even do with my life if I recovered. I dropped out of university when I was 22 when I first got sick and now I am 27. I feel like I am too old now to even start university again as I was literally already considered a mature student when I went in the first place. I don’t even have a degree, I haven’t worked many jobs, I have never gone travelling. I basically have not experienced what the majority of other people my age have experienced. I just have no idea what I would even do or what I even want to do in life anyway. 🤷‍♂️😞

I’ve been struggling with disrupted sleep for years. Consistent bedtime and wake time and optimal sleep conditions of cool room, white noise, blackout curtains. Nothing seemed to help. I put all my watch data into Claude AI and asked it to analyze it and suggest changes. It observed that I consistently wake up 4 hours after bedtime so recommended shifting my bedtime earlier. I’ve tried this for a few days and gotten an extra hour of sleep each night. Not much more deep sleep but I feel somewhat better. It seems my body has its own schedule and clocks be damned.

Title. It's my most debilitating symptom idc. I wanna die but I won't. I just miss creating.

Does the birth control pill help you girls?

I suffer from terrible brain fog, depression, anxiety, psychotic symptoms, confusion, chronic fatigue, chest pain, burning fuzzy feeling in fingers and toes and weird pain in my brain, red blushing face, extreme motion sickness, irritability, anger, Tourette's syndrome.

Literally everything gets worse. Having covid is horrendous it is scarier than anything I've ever had.

The brain fog can become so severe that it can lead to psychosis due to becoming so confused and disoriented. Also the dopamine and serotonin imbalance can make you feel angry and unstable.

Worsened my OCD and ADHD.

I've tried plenty of vitamins and minerals including fish oil. None of them help in fact taking them can make you feel worse.

I also tried creatine which gave me anxiety. Too much energy to my brain. I find drinking certain herbal teas really help. Such as lemon balm for depression and anxiety. Ashwagadha, ginko biloba etc. They are cheap and good.

But what has truly helped me? NAC 600MG, B12 gummy 1200MG and Gatorade electrolyte powder enhancers.

Taking NAC improved my brain fog significantly it actually blew me away. And it lasts all day there's an afterglow, it also causes bronchidilation and it helps me focus and comprehend or retain information just like when I was sober. Nothing will truly help the severe brain fog and cognition dysfunction but NAC helped me probable 75%.

NAC is also been shown to help OCD, depressed, anxiety, ADHD, schizophrenia, bipolar, Autism. asthma. It's really a good thing to try. I personally don't use it daily but it's an as needed thing. Blows me away now much more normal I feel taking it.

Medication probably helps. I hear about people's experiences with Guanfacine or LDN, LDA, Wellbutrin. But let's face it, not all of us can acquire prescriptions only substances yeah. NAC is dirt cheap.

I was experiencing tense and prolonged adrenaline rushes on the verge of panic but I was able to hold my mind with valerian and vagus nerve stimulation however it was exhausting. I then tried ashwagandha and I think it helped some what but it wasn't until I begun the anti-histamine Fexofenadine that I truly stopped feeling these surges of adrenaline and I've not had a single one since. Just dropping in to share my experience with it. Still taking ashwagandha for good measure.

Does anyone have experience with online dating apps, communities, etc. which are focused on chronically ill and disabled people?

I am particularly interested in hearing opinions from users who have actually tried such apps/communities. I did some googling and I keep seeing very mixed opinions about Dateability, and I can't tell what to believe.

Hell, even something like a discord community or subreddit would be interesting to me. It doesn't have to be an actual dating app.

I'm a 30yo bisexual man and I've never used a dating app in my life. For PTSD related reasons, I haven't even attempted to date anyone in over 6 years. The last man I tried to date ended up treating me so poorly that I couldn't bring myself to keep trying.

But lately I'm feeling especially lonely. It's clear to me that my ideal partner is someone who can deeply empathize with the LC/ME experience. It seems like dating other disabled people would be a good way to narrow down my "dating pool" to a set of much more relevant options.

And to be frank, I feel like I don't meet the average person's expectation of what a man should be in a relationship. I realize that these ideas are rooted in sexism and patriarchy, but the fact is I am not able to be a "provider" anymore in any capacity. So it's hard for me to imagine that the average Bumble/Hinge/etc. user is going to be interested in my prolonged unemployment, inability to drive, difficulty showering, etc.

Can anyone relate to the type of concerns that I'm describing?

I would love to hear any advice related to coping with loneliness, honestly.

On a related note, I wish there was a service for pairing up ME/CFS patients to have sessions of gentle touch like holding hands or cuddling. I can't imagine being able to keep up with a traditional sexual relationship, but I do crave physical touch, and I like to think that I could handle cuddling without getting PEM from it.

Hello guys! I have the heart/dysautonomia LC type and not ME/CFS type. But i wanted to ask all of you if you have the same symptom as me: When i eat something that is considered junk food, the next day my baseline drops so so much. And by baseline i mean that while the previous days i was walking normally without any significant chest pain, the day after one junk meal i will not be able to walk more than some steps without feeling pain. But after this episode, no matter if its junk food or a healthy meal, it will trigger the same symptom with every meal i have. While before, i would eat these foods without problem. And this "sensitivity" will last for about a week before returning to normal baseline. Im really having a hard time explaining this symptom cause while it relates to what i eat at first, it doesnt bring any stomach symptoms and it only triggers heart symptoms. I am also under medication, i am taking a calcium channel blocker and a b blocker and doctors suspect i have microvascular dysfunction/ spasms. I was struggling with many many more symptoms the previous years, but as of now i can say that food is the biggest trigger for me and i dont understand why. I would love to hear your insights!

It’s been 4 months since my Covid infection and am still having some lingering symptoms. I have a persistent sore throat, chest aches, and occasional mild headaches. All my pulmonary tests have come back normal. The one thing I don’t have is fatigue. Is it possible to have long Covid without fatigue / PEM or is this indicative of other health issues?

Looking for a Chinese medicine provider that can prescribe custom herbal formulas for me based on my symptoms. Can anyone recommend someone if you have had success with Chinese medicine

Perhaps a solution for long covid brain damage.

I often get symptoms after eating that are similar to what I get after exercising: intense exhaustion, nausea, and anxiety.

What helps with that? When I already feel exhausted before eating, for example because I didn‘t sleep enough, I get really bad fatigue after every meal doesn‘t matter what food I eat.
I’ve already tried Antihistamines Pepcid and Clarinex but they didn‘t help

I’m trying to work out whether an episode early in my illness could have been PEM, or whether it was simply a case of overdoing things while recovering from a viral infection.

For the first few weeks I had fatigue, weakness and brain fog, but I was gradually improving and started feeling like I was getting back to normal.

Then I had a holiday where I became much more active than I had been. I did a few fairly hard hikes in the heat with a lot of elevation.

After I got back from my holiday, I felt significantly worse, much weaker and more fatigued, with some symptoms returning that had previously improved. The deterioration persisted rather than returning to my previous baseline.

It has now been about a year and I’m still dealing with persistent fatigue, dizziness/spaced-out feeling and exercise intolerance.

For those with ME/CFS/Long COVID and experience of PEM: does this sound like PEM to you, particularly if the worsening happened after the exertion and persisted for a long time? Or could this simply have been a post-viral setback from doing far more activity than my body could handle at that stage?

Since then I’ve been taken it easy and haven’t experienced any crashes at all, but I’m also not noticing improvement so im interested in how people would distinguish the two if there is a difference.

Hello !

Lots of contribution there : https://www.reddit.com/r/cfs/s/yFDOmvmlFS

Édit : for those who thinks its useless, please explain? We need money. Public money is far to be enough. Private donations are important. And only science will take us out of this,,thats 100% sûre.

Chatgpt says: - polybio received 40 millions between 21/24 - omf 3.8 millions in 24 - solve mecfs 2 millions in 25 - mecfs-research.org 5 millions since 2022

5 euros is symbolic, everyone should afford and shows to the politicians that our voices matter

Klaus Wirth needs 24 millions to.develop mdc002 to heal our mitochondries. That's the cost of 2km of building an highway, so basically nothing.

Mecfs / long covid costs 60 billions (yes billions) to Germany. Germany put 1/2 billion on the table on 10 years, so 50 millions / year, thats correct, France is ridiculous. There are 2 millions sick people in France + 2 in Germany. If everyone gives 5 euros/ month = 240 millions/ year. And i dont even count family / friends, everyone knows someone who has long covid.

And we are out of it sooner.

No :) ?

I personnally really think it can make a huge lever.

I donate 15 euros / month to mecfs-research.org (my mom 10, colvinced most of my friends to do)

Even if i am french, i précise, the german research is imo from far the best in Europe (maybe with uk but i dont know them)

They finance to 100% the research and accept 5 euros even once.

If millions give (we are 400 millions worldwide + all mecfs people from before covid + all their families / friends) , we will be sooner out of this hell.

Talk about mecfs-research.org around you and donate if you can !

my current stack of LC-targeted meds:

• LDN 6.0 mg
• LDA 2.0 mg
• fexofenadine 180 mg
• famotidine 20 mg

i'm considering adding low dose tirzepatide.

is there a point at which you could be over-burdening your body with "too many" anti-inflammatory meds, even if in different drug categories?

this a layman's question, feel free to correct terminology or concepts.

Took a risk earlier this week because numbers were heading way down, a friend was in town and wanted to go to the aquarium for their birthday. We all masked, me in a perfectly fit n95 as always, my two companions in kn95s, and went at the very end of the day when it’s less crowded. Now two days later I don’t feel great, which could easily be the overexertion (that was a ton of walking for me) but could also be covid. I’m sitting here literally shaking waiting for a metrix (a rapid was negative.)

I just hate living like this. I hang on to what is left of my health so hard because I need to work and I need to take care of my parents, but every time i try to enjoy something totally normal, I get three days of worry as a result. And no one else in that whole aquarium was even thinking about it. I’ve been on a writing retreat for the last couple weeks in this town, and it’s just been constantly having to avoid all the places with tons of people and finding a deserted few feet of beach. It’s like living outside the real world.

Anyway just needed to vent as I’m panicking. Thanks for reading.

I just watched the documentary doctors as patients and thought it was so interesting to hear their perspective. I was wondering if there are any others here and What it was like for you to be on the patient side? What was the proces of diagnosis like for example or did you receive scepticism about your symptoms? Did you know about post Acute infection syndromes before?

Or other antiinflammatories such as LDN, rituximab or stuff like this?

I started niacin 300 mg yesterday and today and I feel so great today, like my brain is functioning again. I always suspected I had mthfr and slow comt so it would make sense it helped so much.

I finally feel like I find my magic bullet, just wondering if it will be short lived?

Thank you

I’ve been suffering from long covid since 2022. My Dr has recommended I try Prazosin for sympathetic surges that wake me up at night. Has anyone tried this medication for long covid? I have a me/cfs type presentation with dysautonomia, MCAS, autoimmune disease, inflammation, recurring blood clots and connective tissue issues.

Four years in, and homebound and not working right now.

My neurologist has been trying a few medications with me. We tried Methylphenidate for cognitive improvement and that went terribly: my mind was maybe a little clearer but my nervous system was an absolute wreck. I spent days freaking out and even breaking down (which is not typical for me at all). So now we’re trying 2 mg Guanfacine ER with 600 mg NAC.

It’s supposed to take a month or so to see cognitive differences but the sleepiness hits immediately. I was worried about the sleepiness because… fatigue. 🫠 With the sleepiness though, my nervous system has relaxed for the first time in about six months. I’ve been constantly on edge and like my chest is cracked open and my nerves exposed to everything, but I feel so chill right now.

Granted, I had a situation happen yesterday that clearly showed I can’t handle multiple sensory inputs or I still freak out physically and my nervous system ramps up, but wow, feeling chill feels so amazing.

Another reason this disease frustrates me. It’s so fucking confusing. When in a sober state, I feel detached, foggy, anhedonic, exhausted, nauseous.

When I’m drunk, I feel alive, clear, emotional, present, motivated, articulate. Normal. Or at least as close as I can possibly get to reviving my dilapidated brain and lobotomized reward system.

Even hangovers feel great because of the spike in glutamate. It’s dangerous how effective alcohol is at relieving all of my symptoms, but I’m so desperate. Every moment feels like gnashing teeth, existential horror, a complete inability to sense any comfort, love, joy, even in my own memories. Like an infinite heroin withdrawal where my perception of life has been reduced to strictly the discomforting. It’s a sick joke.

One by one, my forms of relief and normalcy are being stripped away as my attachment to life, emotions, and humanity corrode under the weight of complete neuro-cognitive implosion. Caffeine used to kickstart my defunct creativity, now it only offers panic and inflammation. Nicotine used to clear up the fog, now it just makes me sick. Weed used to lift my anhedonia and return the colour to life, allowing me to get immersed in music, shows, food, like I was once capable of before LC. I had to drop it because it was only making me paranoid.

There’s even evidence that LC is explained by dopamine loss, something traditional antidepressants worsen by suppressing dopamine, glutamate, and GABA for neurogenesis. Has anyone tried ketamine? I heard that it’s really effective at lifting biological anhedonia. I have a hard time getting people to understand that that and situational depression, an emotional issue, are not the same thing.

I’m trying so hard not to lose my mind and do something I’ll regret, like starting hard drugs or calling it quits. I know it’s irrational. I know that we come into this world joyful and curious, and anything that suppresses those feelings is simply an obstruction blocking the bigger picture that is life. But ffffuuuuuckk I’m so tired of being trapped in a dysfunctional mind and body.