I was diagnosed with CFS in late 2025. I have had symptoms since early 2024, going from doctor to doctor hoping any of them could explain what is happening and why, but only one was familiar with CFS and I ended up with this diagnosis.

Finally after all these years, I am finally recovering. At one point my fatigue was so overpowering, even walking all the way to the back of a supermarket left me exhausted.

Ultimately I discovered my CFS symptoms were due to hydrogen sulfide bacterial overgrowth in my gut. One of its symptoms is fatigue. I also had joint pain, insomnia, digestive issues. These are also attributed to CFS, but can also be caused by bacterial overgrowth. The issue is, many doctors are completely clueless and ignorant about dysbiosis and bacterial overgrowths in the gut and the debilitating symptoms they can cause. Many simply label it as "IBS". It's very easy to develop dysbiosis or overgrowth. A course of antibiotics, poor motility, diet can also cause or contribute to it.

Even with the CFS diagnosis, I was never satisfied that this is it. There must be a cause for this CFS. I knew my symptoms started with digestive issues, so the root cause must be there and after having a GI map, it showed overgrowth of hydrogen sulfide bacteria and I could finally start to address it directly.

If you have a CFS diagnosis consider ruling out any overgrowth or SIBO as the potential cause of your symptoms.

Stem cell transplants are different than infusions. they are used to treat a wide variety of conditions and I think there’s a chance it would help mecfs. unlike car-t cell therapy you don’t need a specific biomarker. I understand that it’s risky but it’s a risk myself and im sure many others would take: I just wish there was a way i could be someone’s guinea pig. I think a lot of the current trials are lack luster. Also please correct me if any of this is wrong.

I have mild CFS and I tend to shower everyday or every other day with the max being 3 days without a shower as living in humid sunny Singapore is impossible and I have severe chronic eczema too which means I need to stay clean. I wonder how do people with CFS who don’t shower for more than 3 days or more not get any bacterial skin infections on their scalp and body. I’m quite taken aback that there are people who have not showered for months or even years. How do you do that? Just wondering as I have super sensitive skin and I am worried if I worsen to become moderate or even severe, I might have to not shower for a longer period of time.

TLDR: Mono in 2020, always said my tiredness was from Depression, maybe its not. What do I do??
TW: Mental Health? Rant? I didn't mean to rant but it kinda turned into one :(

COVID sucked ass for everyone. Somehow amongst all the chaos and quarantines, I contracted mono. It was a god awful experience I don't wish upon anyone. Funny enough no one in my family believed me until I couldn't even hold a cup of water I was so fatigued. Ensue the blood draws and hey! Doctor says good and bad news? You HAD mono! Your body fought it off, all on its own! Great.

The next year or two can only be described as this weird hellish lucid dream. I was slipping in and out of conciousness ALL the time. I'd sleep and sleep and it was never enough. I coudln't even attend school anymore. Eventually my mental health severely declined. A doctor told me I was suffering from chronic fatigue & depression and it would be better in 6 months. It's now 2026.
I am on anti-depressants and tired every damn minute of every single day. I haven't felt normal in years. I used to be so smart and energetic. Now my favorite pastime is napping. Genuinely, most days I count down the minutes till I can be back in my bed. I nap at any possible moment, anywhere. I am ALWAYS tired. It can take me anywhere from 1-3 hours to get myself out of bed. Everything is a chore. I have to PUT IN EFFORT to do normal things. I just don't know what to do anymore. Family expects so much from me, they can't understand why I don't wake up early, or rather CANT. They don't understand how physcially and mentally exhausting it is to interact with people or just pretend to be a normal productive person. I don't know what to do. I want answers? Help? Who knows. I sleep so much that my sleep schedule is fucked and I'm awake all hours of the night or sleeping all day or I can't fall asleep when I want to?? I don't know. I'm essentially the lazy, tired failure of my family. I tell them I am trying my absolute best but they dont see that. Sometimes I cry because of how frustrating it is. I AM trying my best. I'm just tired, and it wont go away.

Heck I dropped out of college because I couldn't get out of my damn bed and get to class. I'm doing online courses but god wtf why am I SO TIRED. Its not even just "tired" its in my bones, my bones turn to jelly, suddenly my mind is gray and fuzzy and I can't keep my eyes open, I can't stand up, I can't because I just want to sleep, maybe if I sleep this feeling will go away... but it NEVER does.

I have things I want to do, I want to feel alive, I hate how frustrating this is, having plans and things I want to do but I just CANT!? Because my body wont freakin move, because the tired sets in and hmm a nap would be nice. But it never ends. I know who I am and this isn't me. I haven't been myself in a long long time. I feel trapped in a stupid sluggish body.

Where do I go from here? :(

Would be happy to pay. I can't tell if I'm breaking the rules by asking this. Sorry mods in advance.

Pretty underweight (always been) 20M. For the past 4 months, I have been experiencing a constant feeling of unreality. It feels as though I am drunk/high or half-asleep, as if I am on autopilot and everything around me feels somewhat unreal. I have searched online, and my symptoms seem to resemble derealization.

In addition to this, I experience fatigue even when I sleep well. The fatigue does not seem to depend on whether I do physical activities during the day or not. However, over the past few weeks, I have started sleeping poorly and waking up early in the morning.

I also experience headaches, pressure in my head, and neck pain. I have tried muscle relaxants and massage therapy for the neck pain, but neither has helped. Also at the start of this i sometimes felt like fainting when walking but it has gone away. I also have noticed one singular eye floater on my right eye.

What could be causing these symptoms? They do not occur in distinct episodes, and the headache is not particularly severe. It feels more like a tension-type headache.

I have tried Triptyl, but it did not help. My thyroid function is normal, as are my vitamin B12, B9 and vitamin D levels. My ferritin level is 37. And it has been changing from 49 to 24. I also havw crohns disease which is in remission.

My neurologist prescribed escitalopram as a trial, which I took for two and a half months, but it did not help. She also did head mri and there was nothing wrong.

I have no history of trauma, no panic symptoms, and generally do not experience much stress, apart from the stress caused by these symptoms themselves.

My symptoms started in the final days of my new job in car repairshop where i was moving car tires and lifting them. Im not sure if this can be linked to that because i didnt have any symptoms expect the final days. I have not been working at all during this 4 month period.

What could be the underlying cause of these symptoms?

Dude I was so cool

Does anyone here practice forgiveness?
There are people who have traumatized me through gaslighting or by failing to understand my illness. Their behaviour made my condition worse, and I went from being mildly to moderately ill to being completely bedbound.
I can’t do EMDR, and counselling hasn’t helped me let go of my anger.
For various reasons, it’s no longer possible for me to have a conversation with these people, either.
I feel like the only way I can move forward with my life is through truly letting go and finding a way to forgive them. But it’s incredibly difficult, especially when you spend so much time alone with your thoughts.
Has anyone been through something similar? Have you found a way to forgive people who hurt you deeply, even when you can’t get closure or make them understand the damage they’ve caused?
I would really appreciate hearing about your experiences.

This is my first post on this subreddit and I hope it is allowed to ask this question (if my post is not okay, I will delete it).

TLDR: I am questioning because I think I have CFS, I am talking about my symptoms, including bloodwork.

My symptoms and progression:

Childhood till 13/14 years old:
In my childhood till the age of 13/14 I was sleeping 8-9 hours a night and after waking up and had to go to school I was a bit tired ofcourse, but 15 minutes after getting up and eating I was completely awake. I was wide awake and had energy the whole day until it was evening. I was doing sports like riding bike or skateboarding and I had also energy after school to do homework or other activities. I also had less anxiety compared to know and enough energy, dopamine etc. If I couldn’t sleep a night because I was somewhere else (class trip) I was still awake the next day and everything was fine.

After 13/14 years old:
Since this age something happened. I started sleeping longer, more like 9-10 hours a night to be completely awake and I was more tired. My anxiety also started. I still graduated school very good.

Now as an adult:
Now I also have to sleep 9-10 hours but now matter how much I sleep, I am never 100% wide awake. My normal me is tired and sometimes I am awake for 1-2 hours a day, but being tired is my normal. I have to force myself to do things and I discovered CFS and pacing recently and I realized I was doing pacing all the time. I am only fully awake if I have anxiety and my heart is racing (for example when I have an exam at university) and otherwise I am rarely fully awake. It also doesn’t matter what I eat or drink during the day. I am never at 100% and have to force myself through the fatigue. I also have to force myself sometimes to even do things I like. Furthermore I feel in the past I had energy for free the whole day if I slept my 8-9 hours but now I noticed everything besides laying in bed and being lazy costs energy. Even sitting on the desk while studying costs more energy, because I am not laying in bed. I also have more anxiety and my heart is racing more, because of the university maybe but also in general. The anxiety and higher heart rate is the thing that keeps me awake and concentrated during exams.

Isn’t that CFS?

My bloodwork form childhood till recently: You can see my bloodwork over the last 14 years but I don’t know if it’s relevant because CFS doesn’t come from the blood values and there is no healing :(
I know I had Anemia my whole life (over 14 years), but i still had all the energy and motivation and being awake till 13/14. So I am wondering if I have CFS why I got it because it started even before COVID and I don’t know if COVID hat anything to do with it too or made it more present.

my ferritin is in the 60s and i'm noticing my hair is thinning which may be related. does anyone supplement iron and find benefits from doing so? my dr says it's normal and nothing to worry about, but I was thinking short term supplementation might be helpful. thoughts?

She said that pushing myself into PEM won’t actually make my CFS condition worse, it will just make the symptoms worse temporarily.

I have always been told on here that activity pushes you into a more severe case of CFS but a professional suggests not.

My partner told me he read an article about a sports celebrity who had covid and glandular fever quite close together which caused her to become bedbound. She was also pushing through the fatigue so I wonder if that’s where the confusion comes.

I have had CFS for over a year now but I was only diagnosed with it several months ago and since then I’ve attempted to pace to avoid PEM but if I’ve needed to do something I have pushed myself and it has wound me up feeling awful. But I don’t think I’ve got especially worse. I will be shielding this winter though (hard with a partner and his teenage son in a small flat but I’ll try).

I am not sure if I’m in rolling PEM right now (and have been for a long time) either. Because I had 2 weeks a month ago I felt great and have since been feeling absolutely not great, but up and down.

I don’t know why there’s such a difference of opinion on what accelerates the condition. What do you guys think? Because at this point I don’t know who to believe.

No puedo más.

Nada me curó en toda mi vida.

El dolor es insoportable.

La distancia con los demás se siente abismal.

Quiero dejar de sentir, de llorar y de sufrir pérdidas.

Es suficiente.

No merezco ir al infierno por haber querido escapar de él tanto tiempo. No es justo.

Merezco descansar y olvidar todo.

Merezco mi turno de paz.

PD;

Esto es un grito de ayuda y hermanación con todos los que estamos así. Deseo que encontréis el camino de la sanación y la paz. Admiro a los que se fueron y a los que se quedaron. Para mí, no hay salud.

Mi amenaza vital es vivir, no morir. Pero el miedo y el instinto de supervivencia me arrastran al miedo, junto con el dolor que pueda provocar a mi familia.

No puedo seguir con esto.

Ayuda!!!

No puedo más

like a lot of us I’ve spent significant time looking for advice. One of the things that I often come across is the idea that it’s normal to have pain and fatigue at baseline so, I’ve just assumed that when I have symptoms that I can bear that it’s just my baseline pain, and assuming I only need to rest when symptoms become unbearable. I hear a lot of people saying that no activity is bad so even though I’m limited to my bed, I often try and stay active to try and avoid that as the reason that I don’t get better,

in other words, I’m deathly afraid of doing too little.

Here’s a little more context I spent about a month doing almost nothing and my body responded quite favorably. In fact I had two days where I was completely symptom-free and I mean entirely symptom-free. I played some video games And my pain returned, but I just assumed that it was my baseline pain coming back.

I’ve spent about a year under the impression That if symptoms are bearable, then it’s not an issue to continue whatever activities you’re doing And that is how to increase your capacity. the reason that I Used that mindset is because I hear people talking about how they are in pain but improving and that it’s necessary for improvement.

I’m asking out of genuine confusion. I know this might sound rather silly, but am I not Sure what I’m supposed to be doing.

like for example, on those days that I felt Genuinely symptom-free what if that’s supposed to be how I feel and what if I was supposed to stop playing video games as soon as Symptoms started?

I hope this makes sense. Please be gentle with your advice. I’m young and I’m very confused and I’m trying my best.

I’ve always wanted to try the pixie cut, so I did. Didn’t really like it on me so I’ve been growing it out for a year exactly but ever since I caught covid 2 months ago I basically can’t use my arms due to extreme weakness. Showers have been far and few between, let alone washing my hair. I have curly hair so it requires a lot of maintenance anyway. But for my own sanity I think I’ll have to buzz it again. I’m sad about it because I don’t feel feminine with short hair. Decided to post here instead of the long haulers sub because I know you all would understand.

sigh

I know what life is. I played baseball (silver medal in European U-21 Championship), made good money with programming, traveled a lot from early age, dated good looking girls.

Now I get tired from walking 100m to the nearest small store, and need to rest for the whole day to make another trip like that.

It can’t be called “life”, can it? Though biologically I am still alive, I mean, I’m writing this message now, so my eyes, brain and hands are working, at least.

What is it then? Some strange form of existence. I can’t take a grasp of it, like, why do I need it, what is the reason to continue it? I’m not talking suicide, don’t have those thoughts (at least yet). But it’s hard to understand why I’m doing this. Why do anything at all.

Found this on the long covid sub.

Couldn't read if myself as I'm very severe, but thought I'd share it here.

Link: https://www.healthrising.org/blog/2026/09/19/ivo-21-mitochondrial-drug-chronic-fatigue/

Edit: TLDR in the first comment, THX!

This is such a non issue in the grand scheme of ME related issues,

but I’m so sad that I can’t watch You Can See Everything or Primetime or any of the other good movies coming out lately.

I’ll see them when they come out for streaming but I hate that I have to wait an extra month or longer.

I want to be part of things and talk about movies with my friends and see them when they are relevant!! Not later when all the hype has died down. I really wish there was a special way for housebound disabled people to get special access to new movies.

it's been 10 months since i've had this illness. there has been no improvement from the multiple specialists i've been visiting and i don't know what to do. i hope to bring the topic of LDN soon to my neurologist or my psychiatrist as a last resort since he's the only one who listens.

Hey all, I just started spravato therapy and I'm a bit concerned.

The first session went well. I felt good during the session and it actually helped me sleep the first night.

The second session sucked. I was stuck in a negative loop the whole time, and I'm wondering if it was because the last session triggered PEM since it increases heart rate.

I know that my negative thinking is worse when I'm in PEM, hence why I'm thinking about it this way.

In addition, today is the day after my 2nd dose. I didn't sleep well, my heart is beating hard all day, I have some postnasal drip, my head is warm, and just generally feel off. I don't have a fever though.

The thing is, spravato has thrown off my ability to be in sync with my body. Before this, I was very in touch with my pacing and signs leading to PEM. Now? Idk if it's a side effect of spravato, PEM, or something else.

Thoughts?

I will say, poor sleep and feeling off are some of the first signs of PEM for me. Also temperature dysregulation. So, feeling like my head is hot is concerning. Maybe the beginning of a cold, but it doesn't quite feel like that.

TLDR: I’m 16, I think I might have ME, but I’m young and every criteria I can find mentions a time “before getting sick,” which I don’t remember having.

—

I’m 16. I’ve had a “mystery illness” for a long time. We don’t know what it is. I’ve gotten every test I could, and everything came back negative. It didn’t just suddenly happen, at least from what I can remember. It’s just gotten worse every year. I think it might be ME.

I experience severe joint pain. I’m always at a low level of pain, but gets worse when any pressure is put on my joints (for example, from standing). After a day of work I’ll be stuck in bed for the rest of the day and all of tomorrow, just from that pain.

I also just feel heavy all the time. Like my muscles are weak and my bones are made of metal. It feels like depression, except I’m not depressed. This gets worse when my joint pain gets worse.

I don’t have a lot of mental stamina. I’m really smart, but after one or two classes in a day I start to zone out and I get this sort of headache that isn’t really a headache but kind of is? And I’m just so mentally exhausted! This gets worse when my joint pain is worse, or when I’ve been thinking a lot, or after any sort of social interaction.

I’m tired all the time. I get far more sleep than kids my age (usually about 9 hours a night). But that doesn’t help at all.

We figured out the joint pain was from my hypermobility (I don’t meet the criteria for EDS, but what I experience is similar). The doctors said my heavy feeling is from that too.

We thought the struggles with brain function were ADHD, which I definitely have, but stimulants only helped some of it. So my parents just say it’s because I’m an introvert (which I definitely am not).

It’s not cancer or thyroid issues or fibromyalgia or arthritis or any other things they could think of. We’ve just settled on it being “a bunch of conditions making the others worse.” But still, that doesn’t explain a lot of my symptoms.

It impacts me so much. I missed homecoming because of this. I hardly hang out with my friends anymore. I can’t do homework because just going to school leaves me exhausted. I only shower every two days. I spend most of my time in bed. I can’t travel, it makes my symptoms worse. I can’t do more than one thing in the day, I don’t have the energy. I’m exhausted all the time.

I have a ton of the comorbidities, too. Autism, POTS, connective tissue disorder, IBS, being transgender. So it doesn’t seem unlikely that this is ME.

But when I look up the diagnostic criteria, everything mentions that you have to have a “lower level of functioning than before you got sick.” I never “got” sick. I know I wasn’t like this when I was really little, but after that I have no clue what was the sickness and what was just being a lazy kid. Does that mean it can’t be ME?

I’m at a loss. All my migraine meds have failed. Trialing muscle relaxers and tramadol for this pain. Almost over half a month in this cervicogenic headache. Literally don’t know what to do, nothing is helping. Please tell me your experiences

Pem. Cannot do the mountain of dishes in the kitchen, no utensils to eat with, haven't eaten properly in a few days. Cannot clean the bathroom. Cannot bathe. I am so nauseous. I don't have any clean clothes or sheets. Sensory fucking nightmare. The food in my fridge is going to expire and I can't afford more. Everything hurts. Breathing is so exhausting. I want to scream and scream. Crying is making me more tired. There's mould on the recycling and there's nothing I can do. My skin is in such bad condition. I'm so tired of not being able to help myself.

I feel like I can't be around anyone without a mask constantly on. Is this how you just live when you have kids? I've literally been in a fog in bed since school started. She gets sick for 3 days, I get sick for weeks.