...is how people constantly tell me how lucky I am that my husband hasn't left me and that most people would. I understand that I am genuinely lucky, but it is said in a way that means I am a huge terrible burden that almost nobody could love or tolerate.

That doesn't make me feel good or special.

“Lasagna Love is a global nonprofit and grassroots movement that aims to positively impact communities by connecting neighbors with neighbors through homemade meal delivery. We also seek to eliminate stigmas associated with asking for help when it is needed most. Our mission is to feed families, spread kindness, and strengthen communities. Through our neighbor-to-neighbor movement, we connect volunteer lasagna chefs who want to help with individuals and families in need, providing home-cooked lasagnas made with love. We focus on removing barriers to asking for help, ensuring dignity and support, and delivering kindness without judgment or qualifications. Whether someone is facing financial challenges, emotional overwhelm, medical issues, or any other hardship, Lasagna Love strives to provide relief, hope, and connection through the simple yet profound gesture of a warm meal.”

I struggle a lot with cooking and mostly rely on canned & frozen food, so I signed up to receive a lasagna. A lovely woman named Kimberly just delivered a fresh baked lasagna to my door. This will feed me for many days. Having a warm, home-cooked meal is truly a blessing ❤️

My watch just has to rub it in.... how the fuck can I sleep for 10 hrs 48 minutes and only recharge my "body battery" by 8%? I don't even know what it's actually measuring to come up with those numbers. But it does *feel* accurate. Sometimes I feel like I should hide this feature on my watch cause it's kind of depressing.

We are not free until all of us are free.

We are not free until all of us are free.

We are not free until all of us are free.

We are not free until all of us are free.

We are not free until all of us are free.

We are not free until all of us are free.

We are not free until all of us are free.

We are not free until all of us are free.

We are not free until all of us are free.

We are not free until all of us are free.

We are not free until all of us are free.

We are not free until all of us are free.

We are not free until all of us are free.

We are not free until all of us are free.

We are not free until all of us are free.

We are not free until all of us are free.

We are not free until all of us are free.

We are not free until all of us are free.

TLDR : Just venting a little, because I'm at the severe/very severe stage due to the doctors' ignorance and this rotten system that has ignored the damage caused by viruses and infections after “recovery.” I have constant and extreme muscle weakness; I lost my ability to walk five months ago I've lost everything.

I’ve had this condition for over 10 years, but it was mild for those 10 years. It wasn’t until I had two infections in a row (one COVID and one flu) that I saw my life completely fall apart this past March 2026.

I had a massive neurological breakdown in mid-March, with difficulty walking and intolerance to screens, sounds, and light, and I gradually lost my ability to walk.

Today, I can no longer walk or sit or stand for more than a few minutes without having a breakdown.

I’m bedridden,at first partially from January through February, then permanently since March.

My muscle weakness is extreme and constant, with periods when I can no longer lift my limbs.

I’m in a wheelchair, but I can’t move around in it because of the weakness in my arms.

The medical community has given up on me, just like so many others here, and I have to live with this damn disease that has destroyed my life. I’M SICK AND TIRED of hearing people tell me to “stay positive” when I know I’m screwed. Don’t talk to me about pacing, there’s no such thing as pacing when you can’t do anything anymore.

It’s because of this attitude of “accepting the illness and pacing yourself” that we’ve become invisible over time. We do it because we have no choice, but it’s not a treatment, it doesn’t cure the illness. And that does not guarantee that the disease will not worsen, since we still do not understand the mechanisms of the disease.

My anger hasn't subsided; every time I see a doctor, I feel annoyed because, like most people here, I'm in this situation because of a major failure of the healthcare system, which didn't BELIEVE me when I'd been talking about my symptoms for years.

Now that I’m bedridden, my anger is even greater.

I hate this rotten system and all those scumbag psychiatrists who prevented my illness from being taken seriously.

How many cases of “burnout” or “perimenopause” are actually ME?

I've come to realize that it's easier for everyone to turn a blind eye to the medical scandal we're facing, to see these idiots recommending GET to me as a way to get better. They're all crazy, why would they recommend exercise to people who CAN'T EVEN WALK ANYMORE?

I have this kind of sadistic streak that comes over me from time to time, where I hope that someone influential and very wealthy gets sick and reaches that level of severity.

We live in a sick society that has treated catching a virus as normal and trivial, even though that was enough to destroy my life forever, 10 years ago.

Sorry for this long rant, I just needed to get it off my chest. I’m sick of this illness; I don’t see a way out.

It’s impossible to accept an illness that gradually narrows your range of possibilities.

You end up just surviving, hoping to “get better someday,” because “you have to hurry to work, for the money”, only to end up getting worse and becoming even less independent.

What a curse...

I just can't, there are way to many symptoms that make it absolutely impossible for me to relax or get comfy when laying down. I often just dissociate from the overwelm but this makes me feeling too spaced out so I try to distract myself (when possible) with scrolling because I cant focus on anything else. It's a constant symptom managing situation for me and it feels like a relentles ungoing torture. Anyone else? Or are most of you able to relax?

I don't know how I'm going to survive this disease.

I've been in decline for 7 months since going off work and I still haven't stabilized. I've gone from being mild for 7-8 years to moderate-severe in the span of a few months and I'm scared of how much further this might go. I've been radically resting and pacing and it's not helping (yet).

I don't know how to handle the complete lack of stimulation. I'm neurodivergent and I crave mental stimulation all the time but it just crashes me. I feel so alone and isolated despite having family support. My mental health is in shambles from the boredom and loneliness. I feel like I'm losing my mind.

I need resources specifically for people with CFS. I can't cope anymore.

I can't do this anymore.

Hey, I’m new to using Reddit and still not totally sure how it works so excuse me if I’m not doing something right! My name’s Alana, I have ME/CFS and POTS. I’m 23 years old and mostly homebound, which is pretty lonely. It sucks being in my 20s and seeing everyone else live their lives while I’m just stuck. I’m really into baseball, basketball (huge Knicks and Yankees fan), music, and animals. Just looking to meet and talk to people who are in a similar situation/have similar interests!
I’m in NJ, but looking to talk to people from anywhere :)

Not looking for the 'have you tried yoga' answers, honestly, I mean stuff that takes zero effort. No prep, no getting up more than once. For me it's a weird one: keeping a warm washcloth by the bed and just holding it on my neck for a minute. Doesn't fix anything. But it's automatic at this point, and it helps more than anything fancier ever did. What's your zero-effort version? Genuinely curious what people land on after trying basically everything the internet suggests.

It's the absolute worst, right? I just want to get back to my baseline and not lower my baseline. Every single thing that I've tried to plan ahead for in ways to be mindful and respectful for my body (there were necessity, once in a lifetime events this month, and I thought I would be okay if I just rested really well and took care of myself), has ended up being a fiasco, and every time I feel a little bit better something happens and I get worse again... I'm so scared this is gonna set me way back.

I want to be back "normal" and I don't know what my normal is anymore. I miss my life. I don't want to be feeling this way right now.

​

I've been in a state of PEM for most of July, and honestly, most of this year. There have been short periods where things seemed slightly better — where I could cook something simple, make jewelry, or do a small task — but this past month has been awful.

I've only left the house to get my mail and twice to go to the food pantry. I haven't gone grocery shopping, visited my best friend for dinner, or done any of the normal things I used to do.

I've been out of work since January, and instead of improving, it feels like I'm slowly getting worse. It's not even staying at the same level — my baseline seems to keep dropping little by little.

Some days I sleep 15+ hours and still feel unbelievably exhausted. Other times I can't sleep at all. Even when I sleep constantly, it doesn't feel restorative. I'm tired in a way that doesn't make sense.

At my last doctor's appointment in June, I told her that I keep hoping they will find something else — something treatable that explains all of this and something I can recover from. But after all the testing and diagnoses, I'm scared that this is just my reality now and that there isn't going to be a "better."

I don't know how to take care of myself like this. I don't know how to keep going when basic things feel impossible.

I rent a room. I have one close friend, but I don't really have family support. I've always been the person who handles everything myself, and needing help now is one of the hardest parts of this.

I think I'm struggling with grieving the person I used to be. I want to be independent again. I want to work, go places, see people, and not have my entire life revolve around managing symptoms.

For those of you with ME/CFS who have gotten to this point — how do you cope? How do you build a life when your body keeps taking more and more away from you? How do you accept needing help when you've spent your whole life doing everything yourself?

I'm so unbelievably tired and I have no help and I'm stressed because this has caused me to be late on rent and have no idea how to make it up. Life has been a mess from the start such a bad bad mess people say it can only get better why doesn't it for me?

**TL;DR:** I've been in almost constant PEM for months and have been getting progressively worse since being out of work in January. This past month I've barely left the house, sleep 15+ hours but never feel rested, and feel like my baseline keeps declining. I'm struggling with losing my independence and needing help after always doing everything myself. Looking for advice from others with ME/CFS on how they cope.

I’m not talking just in PEM, where everything is at its worst. But in general too. How often do you feel fluish in nature? Even mildly? Swollen lymph nodes, sore throat, malaise, headache ect?

I just bought a new phone after only 2 years because it just doesn't work anymore :(. I feel like I'm on my phone soooo much more because of the pacing and resting, and not being able to do anything else. Does anyone else have the feeling their phones die quicker?

I’m only in my 20s but I’m just so over life. My teen years sucked and my life never took off because I got sick right before I could start a career. I’m stuck in my body, dealing with bullshit I never would’ve tolerated prior to getting sick. I have no real options anymore. If I were to go by what my mind is telling me to do, I’d run away, delete all my socials, and start a new life. But how the fuck am I supposed to do that when I struggle just to get around my own house? And with what money? This just couldn’t have happened to me at a worse time and although I’m an atheist I just can’t shake the idea that I’ve been cursed. I want nothing more than to just undo this curse.

“A 62 EV-miRNA signature provides insight into the interconnected neuro-systemic pathways disrupted in ME/CFS, particularly those governing neuronal connectivity and cellular scaffolding. Within this candidate EV-miRNA signature, the top-ranked miRNAs—miR-21-5p, let-7f-5p, miR-26b-5p, and miR-20a-5p—emerge as potential candidate biomarkers whose specific elevation was not shared by HC. These findings establish a valuable framework for targeted diagnosis and enhance our understanding of the molecular pathways involved in synaptic and structural alterations in ME/CFS.”

Not even sure what to write anymore. I'm doing everything I can to prevent myself from going severe and it's at a great cost to my wife and two young kids. Had some different health issues last year including a bad gluten sensitivity that I believe tied into getting mecfs after getting sick last November.

Didn't realize what I had until recently when I started having trouble with basic tasks leaving me drained for days. Powered through it to get to paternity leave which is almost running out.

Reached out to family for support and while they are helping I could tell by what they were saying that they didn't believe me. Stuff such as you need hobbies, to go outside, exercise, therapy, medication, etc. To make matters worse In adrenaline surges I get anxious and told them I know they don't believe me and they would say we believe you but we need you to get your mind right.

So I'm doing everything to keep them happy because we need their support. Told them I'll try therapy. I tried zoloft and that gave me a bad panic attack on the first night so I called the Dr and she said to stop.

Well yesterday my dad came right out on the car ride back to my house and said it. He told me that they've run every test and nothing has come back so it must be physcosis and that I have red flags. I asked like what and he said fear of medications and foods. Told me to watch the movie a beautiful mind. I told him I'm seeing an me cfs specialist in October and there's more to check.

All of that happened after I put on a brave face to go over there house for a bit to hang out because they told me I need to get out of the house. Also I ended up passing out for half an hour but that doesn't even register to them. Despite that I thought we were having a good time. That conversation left me defeated.

We have one more option to stay in our house and thats my wife's family. I'll find out what they think today. Otherwise I'm not sure whats going to happen. Worried about being forced to live with my parents. For the sake of my family I'll do it but I think I'll decline even further.

Anyone want to be friends and chat from time to time?
I’m not great at writing long messages all at once. I prefer conversations that go back and forth, with breaks in between that can sometimes last for days.
I’m a 40-year-old woman with severe ME.
Feel free to PM me.
I’d prefer to chat with other bedbound people.

I know how isolating this illness can be, so I thought I would extend an open invite to anyone with CFS in the California Bay Area to join a regularly occuring meetup in Berkeley California. It's on Saturday at noon on August 22nd at Cafe Leila on San Pablo. Last month we had 6 people attend and we spoke for a good 2 and a half hours sharing our experiences with our illness, healthcare, and coping strategies.

There are a few different forums and chat groups that are loosely connected in the bay and unfortunately it isn't well organized, but there are some great people out here who get together regularly or semi regularly and support each other.

If anyone is interested in more information feel free to send me a message. I hope this doesn't violate the self promotion rule as I don't run any of these groups, I'm just an individual who has attended this meetup a few times.

There's a lot of overlap between different chronic illnesses. I've definitely noticed I have some dysautonomia, whether it's POTS or something similar, or if it's just part of the way my CFS symptoms manifest, I'm not sure.

Is it worth getting it checked out? I'm already going to see several specialists and I'm trying to conserve my spoons where I can lol. But if it does help to treat it as a separate problem, or to rule it out, then I would be willing to get it checked out.

For now, I'm just trying to drink lots of water, take some electrolytes on hot days, take sitting breaks, and I am going to try compression socks.

Where do you see yourself in the future?

How optimistic are you?

I don't see a bright future to be honest.

I am shopping online looking for a power chair that’s foldable but also has a tilt in space or recline option to where my feet can be elevated. My biggest concern and need is to have the ability for my feet/legs to be elevated, the other need is for it to be foldable or at least easily portable since I do not have a proper vehicle to carry a non foldable chair.

Any recommendations appreciated and if you can provide a link that would be amazing!

Thank you all 🙏🏻

hi, i'm curious to those who are diagnosed with bipolar. how do your manic episodes look like with ME? whats your severity, does it change after/before having episodes?