I attended live and thought it was pretty great.

Topics covered basic science (immunology, mitochondrial dysfunction and muscle fiber dysfunctions), talked about treatments (pharmacological and non-), the psychological impacts, and status of clinical trials.

I found the presentation on the muscle fiber differences quite interesting as it pertains to PEM.

The immunological talks went into inflammatory responses in further detail. Also talked about breakdown in cellular waste removal and recycling. Interesting for explaining the “sick” symptoms many people feel.

Mitochondrial talks I knew much about but was great for detailed analysis. Emphasized it might not be that there aren’t enough mitochondria, but that what we have is not working.

Treatments highlighted that there may be different pathways (as we know) which is why precision medicine is probably the way to go. Still, the side by side comparison was great. Led me to decide to try CoQ10.

Psychology one was interesting. Of course, talked a lot about impact of medical gaslighting, the isolation, and loss of identity and ability. I liked the *careful* approach they took to highlighting the potential pathological impacts ME can have on mental health. Example, does mitochondrial dysfunction and poor cellular waste removal have chemical impact on psychological symptoms?

Finally, they talked about the status of clinical trials and what they’re researching.

link: https://youtube.com/playlist?list=PLDFd3H01-3zw&si=jOZglv8xMIrvaGIZ

When I watch old videos of myself it’s like I’m looking at a stranger. Even when I look in a mirror I don’t really recognize myself. I feel like I’m a completely different person with a completely different consciousness than when I was healthy. I’m wondering if most of you feel like the same person just with less capacity or if you feel like a fundamentally different consciousness. Trying to figure out if this is normal for CFS or if I have some psychological comorbidity.

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.

I always have the feeling that everyone else gets to enjoy cozy weekends with their families, partners, or spouses, while I’m always home alone, feeling lonely and struggling with this debilitating illness.
Anyone else feel this way?

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.

ME comes with 1000 and a half comorbidities. Some people go into ME with things like hEDS, fibromyalgia, autism, ADHD, POTS, and many develop things with ME, like MCAS and many others.

I feel like comorbidities make the severety. I think that to a point that ME isn't even that different from person to person, but some comorbidities just take too much energy. All your energy. If you have fibromyalgia, your severety will go up. Recently I had the realization that maybe my light and sound sensitivity are insanely exacerbated by my autism. Severe pots increases oi, also increased severety. I've heard that some people stop producing some enzymes for digestion, that's a comorbidity and increased severety. How you experience PEM is also different. Some have migranes, some increased fatigue, or other pain, or increased OI, and all of that could lead back to other comorbidities.

I feel like ME is actually just PEM syndrome so to say, meaning your body works in the PEM way, leading to shared symptoms. But the rest is all comorbidities. And the most interesting thing is that you can also see 'groups'. Neurodivergence, hEDS, POTS as a group for instance. I could be completely wrong but I feel like for example hypermobile people with ME tend to be neurodivergent a lot more often than people with fibromyalgia for example. But that's purely vibes, I don't have scientific backup.

What do you guys think?

Edit to gather what I've learned from the comments:

While many agree, many also disagree. A lot here are severe/very severe and don't have comorbidities, which speaks against my claim. While there's obviously a voice inside me that says thay we can never be certain, I also think it's a toxic mindset I have and that it's not even true. This illness is truly a mystery. Sending love to you 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!

tldr: seeking straightforward examples of pacing

i believe i have me/cfs mild-moderate since a covid infection last year + previous issues with chronic pain and fatigue. i already had seen a pain specialist for severe and unexplained nerve pain in my arm in 2023.

i declined sharply in march while trying to taper off cymbalta and have been homebound / often bed bound for weeks to months, will start feeling better and adding back walking + working a reduced schedule, then crash again. i go to physiotherapy weekly and it’s helping my body and posture for sure (hEDS likely) and is extremely gentle movements mostly laying down

my partner and i live together, he does 99% of the housework and cooking, drives me places when i can’t do it myself, all the grocery shopping, washes my hair when my arms are too weak

PEM presents for me as severe 8/10 burning in my c spine and entire brain, unable to stay awake, brain fog, muscle aches and weakness, some lightheartedness

i just had a visit with a pain psychologist so she could “help me pace” and her suggestion was to get a walking pad and walk for 30 seconds a day, then slowly increase. she also said that pacing doesn’t help fatigue so much as pain. my mom was with me and validated that the suggestions were presented badly.

perhaps it’s just my general frustration with the implosion of my life and work (im self employed as a tattoo artist and rent my own private studio), but being told to start walking for 30 seconds on a walking pad just came across as SO obtuse and detached from reality. i wish she had like helped me with the tasks i actually need to do in a day (hygiene, food, dog care, art). i also enjoy walking outside and she didn’t ask anything about what my access is to that!

i walk for 30 seconds all throughout my day - i have to go up 9 steps to the bathroom and i have dogs that i let outside throughout the day. why would a walking pad possibly help me !

i think her point was maybe more in doing relaxation techniques before and after exertion, but her presentation of this just didn’t make sense to me, and the appointment itself felt more taxing and exerting than when i walk to the bathroom so i ended it a bit early.

anyways, the way pacing has so far been presented to me by my specialists makes me want a lobotomy and im hoping some of yall can give me other ways to think about it.

thank you from my bed to yours

Thought some of y’all might relate 🫶

That’s while ignoring the emotional side too.

All I want, even just once, is to speak to a medical professional, for them to hear my situation and say ‘wow this is really bad’ and then to take urgent action for a plan with meds for symptom management, follow up appointments etc etc. for them to take it out of my hands and continue working with me until things are managed as best they can be.

Having to constantly push for things, for follow ups, argue to be listened to, argue to be prescribed anything to help, is so so mentally draining. To do all that and keep going round in circles, only to make microscopic steps in the right direction over the course of years, so microscopic that by the time you’ve finally accessed a tiny thing to help you’ve already declined further. So microscopic you never manage to get to everything as it takes so long, so there’s never actually a break to carrying this mental burden, the burden of having to be responsible for your own health.

I know there’s no treatment for this condition, but I also know for an absolute fact that there’s far more that could be helping me with managing it. Far more that could be improving my quality of life. So many meds that could help me I’ve been fighting years for but not accessing, despite being in such a severe state.

No, I’m not about to die any second, my condition isn’t terminal, but surely this state of severity and symptoms should be seen as something that requires urgent help and support too. Not just for quality of life but for prevention of it becoming life threatening.

I remember i used to love hanging out with friends. I was diagnosed at 13/14. By 25 I could barely leave my house and I was so depressed... now at 35 I don't leave unless absolutely necessary.

It does make me really ill when I go out but I also just prefer to be in my own space with my dogs. Maybe I've been conditioned to prefer to stay home because i do get more sick when i leave 🤔 idk

Anyone else?

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

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.

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.

Welcome! This post is for you to vent about whatever you want: no matter big or small. Please no unsolicited advice in the thread, this is just for venting.

Did something bad happen? Are you just frustrated with your body? Family being annoying? Frustrated with grief? Pacing too hard? Doctors got you down? Tell us!

Hello!

I’ve been sick now for 3 years. ME has been consistent for coming up on two years now along with severe stomach issues and a headache disorder.

I have the ME pretty much down to a T at this point to avoid crashes. I sleep about 12 hours at night. Wake up for about 2 in the afternoon, eat, go on my phone for a bit. Sleep for a few more hours. Then I get 2-3 hours with family in the evening (aka silently watching easy TV together). I’m incredibly lucky I don’t need to work atm and I have support. But it’s so hard.

I feel like my brain is rotting away not doing anything. I went from being a full time student in an intense college course to only be able to stare at the ceiling in fear I’ll do too much. I miss doing Lego, reading, drawing. I used to go on walks and ride my bike. Now I can barely scroll on Tiktok without needing a nap.

I know there’s so many ideas out there on what to do but things often conflict with my ADHD. Audiobooks for example would never hold my attention and I always feel like I need to be doing things with my hands. I just miss doing things.

This illness is so cruel. It steals who you are away from you and punishes any attempt you make at enjoying your life. It’s just so cruel. I’m losing hope, certainly at getting better, but even at being able to do anything I used to love.

I’ve had ME for almost a decade but I was in remission or very mild for several years. I had a relapse like six months ago after helping my epileptic alcoholic partner go through brain surgery (so he wouldn’t die)

I was severe for like a month but returned to a more moderate/severe baseline after that. Since then I feel like I’ve been caught in this constant push/crash cycle. I get really bad migraines and body pain as my main symptoms of PEM but I don’t tend to get feverish or anything. Usually my PEM lasts around 3-5 days but I’ve been in active PEM for over a week now.

About a month ago my sleep schedule became like nocturnal, I go to sleep at like 4am and I wake up at like 2pm. I wasn’t in PEM all the time but if I’m awake at all during these hours I have a horrible migraine and I cannot tolerate light pretty much at all. At night the migraine is much less bad but I still feel like my body is 2 tons and I’m in so much pain.

My boyfriend’s grandma died and he was really stressed and I tried to be comforting but he just kept picking fights with me and he seems to have no awareness or memory of what that does to me. As a result I haven’t been able to keep up with feeding myself adequately or keeping my space clean/wheelchair accessible which is making everything so much worse.

I’ve also been having extreme anxiety and episodes of my hands/stomach/face going numb. I went to the ER and I have low magnesium and I got a migraine cocktail but I just feel wretched all the time.

I need to change my life enough that I’m not so reliant on people who are unstable but that’s my current situation and that’s extremely stressful for my nervous system. I just don’t know how to do that when I’m not getting the support I need and it’s actively making it worse.

Everyone in my life is unreliable/unstable in some way and it’s making me worse but those are the only resources that I have. No one seems to understand my limitations and the help that I need. When I try to explain they feel like I’m being self deprecating and selling myself short.

CW: mention of death of a family member

I am 25F who has been dealing with me/cfs for the past 4 years and is mostly mild. A few days ago, my grandfather passed away and I've noticed my fatigue and muscle dysfunction getting significantly worse even though my activity levels have not changed at all. Has anyone else dealt with this before?

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.

I've recently started to get back into drawing and I'm starting a drawing inspired by me/cfs and other chronic conditions. If anyone wants to make suggestions of what I should add I'd be happy to hear them :).

I think art is a very emotional way of representing any condition, especially with something that isnt as represented and talked about. It's a way of portraying what can be invisible for some people.
(Just as a heads up this will take me a while as I'm trying to be careful with crashing)

Hope you all are doing well, take care <3.

EDIT: What are some things you guys use the most? Indispensable items that you have on your bed or bedside table

so i’ve had ME for 7 years now, it’s just progressively gotten worse as the years have gone on and unfortunately this year things have taken a pretty drastic turn. i live alone and im really concerned im not going to be able to take care of myself for much longer and i really don’t know what to do. my mum is supportive but she can’t be here at my beck and call, i can’t have support workers because i can barely use my voice and id only need them to like bring me food at lunch and dinner which isnt a service offered cuz all the support worker services i’ve seen go by the hour and i can’t even be in the presence of someone for that long. im getting so scared and i just feel like im completely out of options - if anyone has any suggestions im all ears

I’m curious if anyone from India is around in this sub - experiencing long term fatigue. What has your journey been like? And your experience with doctors? Did you try and get help from professionals - what worked, what didn’t?

I’m from Mumbai. Though my system felt overload since 2008, chronic fatigue began only 2016 and became severe ~2019. GP advised Iron, D, electrolytes, calcium. ~2023 Psychiatrist prescribed carnitine helped but caused heartburn eventually and fluoxetine for depression - helped with moods but exhaustion remained. 2024 A rheumatologist hinted “chronic fatigue syndrome?? borderline depression? ” and recommended lifestyle suggestions. These also lead me to understand that my neurodivergence has also played a major role in the constant burnout and exhaustion.

And I have a toolkit for myself from years of trying things so I manage and problem solve but I’m hitting a point of despair of having to live with this for the rest of my life? Like crying from the pain and holding of exhaustion every alternate day isn’t sustainable! So I’m curious to hear from others in India..

For the first time today I got really down. I want to recognise the symptoms of depression and I feel like it should be ok to ask for help.

Has anyone had any contact with a mental health professional in any capacity and did it help?

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?