that’s it, that’s the post. i’m not sure what demon i pissed off in a past life to deserve this, but here we are.

Thanks to this illness. It ruined everything. Now life is a million times harder with only a small fraction of the pleasures that healthy people experience. I don’t enjoy anything, I always feel awful, I have no money, no accomplishments, nothing. No purpose. I’m just in a constant wait mode. I know I’ll be very severe at some point but I’ve spent this past year pacing just enough to delay it but I won’t be able to for very long. I’m getting ready to just give up on life altogether but I’ve been delaying that too.

​​I am too severe to read all of it, but I am sure many of you may be interested.

The TL;DR I read was something like:

• seven new studies starting in the next weeks thanks to 2,4 million euros donated
• over 1,4 million people with ME and Long Covid in Germany, costing the state over 64 billion euros a year
• National Decade Against Post-Infectious Diseases: Active participation in committees and provision of information on ongoing implementation activities.
• ca. 637,000 euros of donations this year so far, which is 97% more compared to 2025's first half

Reminder also that the International ME/CFS Conference was in May 2026 with over 7,000 visitors.

The biggies were genetics (DecodeME was very helpful), immune dysfunction, blood vessels/circulation, brain and nervous system, metabolism.

What I know is that this year the likelihood of subtypes were a very frequently referred topic and seem to be a major research point. Research seems to increasingly focus on identifiying those.

(i have previous posts on the subject if you’d like more context)

i had my 2nd appointment yesterday. i was unable to bring printed info documents because i don’t have a printer and the local library flooded and was closed due to it.

i started the appointment by telling her i might not have done the best job explaining myself and the situation and what i was hoping to get out of our sessions. i spent 5-10 minutes going in depth (again) about my experience with school last year and the concerns that leaves me for this year, and what that means for someone with this condition.

i mentioned mobility aids again and explained why i thought finding something that worked for me to make a notable change in my daily school related activity was important. she agreed, and suggested a bike. a bike would be slightly helpful at best (on a good symptom day, in good weather, and taking a good route). otherwise, i believe it would be more exerting than just walking for me. additionally, i have a really difficult time with bike seats (after riding for only a few min or more they make it uncomfortable/painful for me to sit for at least the rest of the day). i know there are seat addition things i can try, the costs are just really adding up for something that i don’t think would help. furthermore, there aren’t that many bike racks on campus, meaning if i want to lock my bike, i may have to walk a decent distance to my class from there anyway. i explained this to her, and she suggested just taking breaks while walking. the issue with that is the fact that depending on scheduling, i may have 10minutes to traverse 1km to get from class to class. i don’t have time to take a break without missing out on parts of my education. otherwise, i do already take breaks while walking. i stop at benches, big rocks, in dining halls, or just on the ground if there is nowhere near enough. this did not make a large enough difference in my energy expenditure last year.

i told her this. she shifted the conversation to how we are going to build up my strength/endurance. she gave me an exercise plan i am supposed to follow twice daily, and we went into the main area of the physio place and she gave me exercises to do that she watched. i understand that having more strength/endurance would help me exert less, but i feel like it will take a very long time for me to safely build that up enough to make a large difference in my day to day life, if this condition even permits. it just doesn’t feel like the correct end-all solution right now. also, i consider myself relatively strong (just not in the core lol, ik i need work there) despite being overweight i have been relatively active most of my life, i can leg press 425lbs for reps. i don’t feel that my strength is what is limiting me.

anyways, i have this exercise program i am supposed to complete twice daily. it’s pretty achievable for my baseline other than the dead bugs lol (when i’m not having a bad day). i just don’t understand how this is going to help me go to class less than 2 months from now? and she’s talking about how we will increase the activity over time, but is that not just graded exercise therapy?

i have classes in a month and a half and i just want to be able to participate without suffering as much as before.

This is interesting for pwME in a severe and very severe state (esp. in Germany as they covered by insurance) -, don't know about at profoundly severe, probably too much stimulus.

So these are available in Germany and have a Hilfsmittelnummer, so theoretically a doctor could prescribe it and the mandatory health or care insurance should cover it.

Unfortunately, the company producing the 1st on called Sanosphera is out of business though my medical supply store said they still have it.

The 2nd called Lavaset is still in production and available.

The impermeable sheet can either be fixed to the hospital bedframe with velcro straps; or the sides can braced somehow without the need for straps. No need to leave the bed, it can be put beneath your body as if it were a bedsheet, with the classic care technique.

There's also an inflatable option. I've read people describing that the inflatable hair wash tubs (specifically the air chambers) amplify noises, so that wouldn't be my choice.

The sheets are waterproof but can be washed in the washing machine, at 95/60°C respectively.

They have a valve for drainage and there's an option with a pump that drains the suds into a nearby sink.

They come with a long hose and connector to a normal household tap for running water.

If the bed can be inclined, drainage can be done manually.

I'm guessing a waterproof mattress protector would still be a good idea underneath.

Should I get one, I'll update.

I bought a rollator with seat to help me out with pacing but she’s like.. throwing a fit about me ordering it. That it won’t fit in our car for a cruise we’re going on in sept (so, guess I won’t be enjoying myself much) and stuff. Which is BS, it’s small and we have an SUV. Then she’s complaining that I want something to be wrong with me because I want to get tested for POTS. She “agrees” that I have ME but she also doesn’t seem to think it’s as bad as I say and keeps saying I sleep too much and exercise too little and I don’t know how to get her to understand exercise is BAD for me. Like I get exhausted even walking through the grocery store for 15 minutes. I pass out every time I take a shower bc it’s too much exertion. I don’t know how to get her to understand better.

Does anyone have any family-friendly resources to explain ME and PEM?

I want to have more hope in life, for a decent treatment, and just that things will be okay in general. What are some things that give you hope for the future?

*Empathy and shared experiences very welcome*

My life has got so small. I'm still able to work (from home, with complete autonomy over my hours), but have almost nothing else. I rarely see anyone other than my partner.

I use an electric wheelchair, but even that has been really painful for weeks. The pain has made me so fatigued that I mostly need to lie down.

Even before it was painful, I only left the house around once a week.

I'm expecting to lose my job in the next few years and know I'll struggle to get another job that lets me work how I need to, and the idea is terrifying - losing my last functional role, and my financial security.

I know it could be worse - I was mostly bed bound a few years ago for 2 years - but I'm just so sad for all I've lost, and I don't have anyone (except people on the internet) who understands.

I'm 18 and have no experience with dating. It feels like too much of a hopeless endeavour to even try.

I'm moderate, but was mod-severe for a lot of the 3 years I've spent sick with mecfs. I've been very socially isolated and I've essentially forgotten how to be a human (which being autistic does not help). Even if I thought I was capable of dating I would have no idea how to act or anything like that, my social skills have regressed a lot

Then there's the physical limitations. I wouldn't be able to handle regular meetups, even if they aren't energy intensive. Energy intensive dates would unfortunately be a no go. I can't walk very far nowadays and have no wheelchair (while I could rent one it would need to be a powerchair as my arms are very week and accessibility for power chairs isn't great from what I've heard). To be blunt I would be extremely boring to date. No fun dates, only very chill dates, wouldn't be able to meet up regularly, socially inept, probably no intimacy, I can't garentee anything about the future because it could change so easily, I have issues taking care of myself due to energy levels, I look like shit, being bombarded with symptoms makes me sad and not very fun to be with, etc. Not to mention I wouldn't be able to talk/text them without being anxious because of the social isolation aspect which costs more energy.

I would need somebody incredibly understanding of my conditions and maybe I'm being cynical but I don't really see that happening. Between mecfs, autism and a whole bunch of other issues I think it would be difficult to be patient and understanding. It feels like a lot to put someone else through. There would probably be some caregiving aspects that I just don't want to make someone else deal with, I'd feel bad about it

There are just so many things to think about when it comes to mecfs and dating and it's just too much. It's exhausting to think about and I don't bother trying to date because of it. It just feels like so many cons to dating me with barely any pros. It's a little depressing

edit: another thing I wanna state is that after the activity I would have PEM the day after that lasts less than 24 hours, then be normal again and feel normal for a period that can last up to a month, and then suddenly (somewhere between 20-30 days after the activity) I get into that severe crash that could last days or months, which is unusual compared to what I heard here where people would get the PEM and stay in the crash since or smth

I've had ME/CFS since 2020, and I would describe my illness as dramatically fluctuating. I could spend months mild/moderate, then relapse into being severe/very severe and bedbound for months, then mild/moderate again and so on

I was very severe for months until April 2024. I that period I would crash from the littlest thing. After having a painful tooth extracted (followed by a wel of a painful dry socket), I improved and became mild/moderate again until december 2025. I was able to work from home for about a year without major crashes, and I even traveled to my vacation home in May/June 2025 and it didnt make me get worse. I stopped working around august 2025 so, in hope that stopping work could help me get even better.

In early December 2025, I had to walk a long distance while visiting my aunt. I had PEM the next day but resolved within 24 hours and I actually felt fine for about a month afterward, but then I relapsed into being bedbound again in the second week of January. I stayed in a very severe state (that at times seemed to be getting worse and worse) until late April 2026, when I suddenly started improving again.

Since May, I've had shortness of breath episodes, that turned out to be anxiety-related. I was able to control and stop these episodes. also I suffer from significant insomnia, largely driven by depression and anxiety. but on days when I sleep well, I would feel mild/moderate and well. and no longer bedbound.

My depression became so severe that I could barely sleep, and in June I was awake for almost two days because of it. from june 20 to june 22. That day was one of the scariest days in my whole life.

I recently spent three weeks at my vacation home by the sea because I desperately needed a change of environment for my mental health. during those 3 weeks I mostly rested indoors and only went to the beach twice. Each of those times 1 week apart. The beach is in the same street as my vacation home, and a beach buggy would take my from my doorstep and stop me at the beach so I didnt walk. The trip helped my depression a lot.

However, I came home today and read a comment here from a patient suggesting that crashes may improve several times, but eventually one similar crash can become permanent and you never recover from it. That terrified me because my history of recovering from severe relapses after months was what gave me the confidence to take this trip in the first place. I can’t undo this trip now…

I know nobody can predict the future, but I wanted to ask:

• Has anyone else had a similarly fluctuating course over several years?
• Do we know whether the likelihood of recovering from a crash depends on the individual, rather than there being an inevitable point where everyone stops recovering?
• Is it possible that some people who never recover from a severe crash are in situations where they can't rest adequately (for example, they have to keep working, have no caregivers, or must do all their own household tasks), or have other conditions affecting their recovery? Or is there simply no way to know why some people recover from bad crashes and others don't?
• Last April I stopped eating white bread and milk and eggs, could that have helped me get out of the crash? or is it unrelated?
• I had a terrifying symptom last march for a while where I felt like to energy to move my hands and arms, this also happened to me in October 2023 and both times where inmediately after using a mouthwash, and were the only times in my life that I used that mouthwash. could be related or definitely not?

I'm not trying to suggest that people who don't recover did anything wrong or didn't rest enough. I know many people pace extremely well and still remain severely ill. I'm just wondering whether researchers or patients have any insight into why outcomes after crashes seem to differ so much.

TL;DR: My ME/CFS has fluctuated dramatically since 2020, with multiple severe relapses followed by significant improvement. I recently took a quiet trip that helped my depression, but afterward I read that one crash can eventually become permanent, and now I'm terrified. Does anyone else have a relapsing-remitting pattern, and do we know why some people recover from severe crashes while others don't.

Sometimes I forget that how I live isn't normal.

But for example, I went to the gym yesterday, for like 30 mins (huge privilege I don't take for granted), and today I am feeling tired and my brain isn't working - nothing feels real, derealization is rampant.

This is a normal occurrence to me. I have had a cup of yerba mate and 2 coffee machines, and I have a bit more physical energy, but derealization and mental fatigue is exactly the same.

Does anyone else's overexertion manifest as derealization?

Overall it's like my nervous system is always deprived and any activity overexerts it, my fatigue is primarily from the nervous system not primarily "in the muscles"

I crashed hard on Friday and this little one stopped sitting with me. Woke up this morning feeling much better, and this happened 😻

I used to have a cat who would not come near me if I had a migraine too, so I wonder if some cats pick up on an unwell vibe more than others?

I've been sick since I caught COVID in April 25 with my symptoms gradually worsening and now I am essentially housebound and sometimes bedbound.

I've found since I was sick I've been craving sweet treats and feel absolutely starving whenever I'm not nauseous. I'm sick enough for it to be difficult to make something that isn't a quick snack. I've put on absolutely loads of weight and just don't know how I can manage both trying to have a healthy diet without feeling extra pain.

Asking because I’m going to need to have a couple of surgeries this year. They’re unfortunately necessary, and at this point the benefit definitely outweighs the risks. But seeing how badly my body reacts to even relatively minor physical stressors (for ex., just cooking a meal and walking my dog in the same day recently was enough to provoke another round of pericarditis and put me in the hospital for 4 days), I’m more than a little concerned about how it will be able to tolerate the physical stress of surgery and recovery. Would love to hear from others who’ve had to undergo a surgical procedure after developing ME (or Long Covid with symptoms similar to ME). Thanks!

i’ve been in a crash for probably the past week and continued pushing myself because i would have moments after resting where i felt better and thought i’d be able to do things. now im dealing with weakness, flu-like symptoms, dizziness, brain fog, and sensory sensitivities. i know i just need to rest but it’s really hard when i’m so scared i wont improve. i always tend to jump to the worst case scenario when i’m in PEM. i’m trying to focus on the positives - i can still eat, walk to the bathroom, and tolerate using my phone even if i maybe shouldn’t be doing those things.

the only thing that helps my symptoms is klonopin (most likely bc it’s a mast cell stabilizer on top of helping anxiety) but i’m already relatively dependent on it and don’t want to get worse. i have a major history of addiction. i’m also wondering if taking sleeping meds during the day and just forcing myself to sleep would be beneficial or if that’s a bad idea.

does anyone have advice or words of encouragement? anything is greatly appreciated

Quick background so the main question makes sense (not looking to deep-dive the medical side):

Any real exertion — a 20 min walk, anything that makes me sweat — and I'm fine that day, sometimes even feel GOOD. Then 15hours-2 days later my gut breaks down (motility goes to hell, constipation, whole system changes) and it can last 2-4 weeks. If I keep exertion low and fully control it myself, no external pressure, it's manageable. My doctor has me doing 3-6 months of aggressive pacing — never cross the limit, period. She says my presentation is a bit different but the exertion→crash link is dead consistent. (If anyone else has this gut-dominant delayed pattern and found something that helped, I'm all ears — that's the bonus question.)

The main thing: the social side of the delay... how do others handle this? I feel i can lose friends & connections due to all this.. my family doesnt even get the " Algorithm "

Buddy invited me fishing. I explained my limits up front, he said he'd do all the lifting — and he did. Good guy, one of the better ones at trying to get it. But one stretch was a rough bush trail. Here's the trap: in the moment I can keep up with anyone, and I genuinely FEEL strong those days. Next day he texts "how you feeling?" and I honestly say "pretty damn good." Then day 3 the bill arrives and I'm wrecked for weeks.

So now, 2-3 weeks later, I feel like a space alien telling him "hey, still messed up, can't go again for a bit." From his side it looks like: guy fished all day, felt great, said he felt great... and NOW he's sick? It goes in one ear and out the other. I'd have to teach a class for the lightbulb to go off... another buddy said " you sureeeeee it was that trip . thats like 2 weeks ago . you gotta just tell me I am sick . thats it " .. yeah .. maybe .. but then im bouncing around all day in my car, groceries, errands(thats the most i can do and i still feel it but i can manage it ) .. " this guy doesnt look sick " . nobody says that but ..

So when the next invite comes ("come out fishing — easy spot, boat access, I'll do everything") I default to "yeah for sure, one time this summer" or "maybe next week." Which just kicks the can. I've tried the honest version ("my gut is still messed up") but it sounds bizarre and the conversation just dies......... but i get asked every single time

And the invites are tempting — the new spot really IS easier, low exertion, outside all day might even do me good. But I'm 2 weeks into a crash and every morning I think "if it just settles tomorrow I can go." That's exactly the thinking that gets me. for me crash == gut normalizing. once it normalizes life isnt that bad.. but i still get histamine issues and MACS type stuff so its not just pure GUT . its like Gut Brain even stress can mess me up .. like a ' long meeting ' or too many intense phone calls . my boundaries are good on this now .... like even going to pickup a friend, drive him home, take him fro groceries(I dont mind these types of things ) if not careful and it gets too intense convo i get messed.

Questions for people who've lived this longer than me:

1. What do you actually SAY? Do you have stock lines for declining/postponing that don't require the full lecture and don't kill the friendship? My current one is "still on the waiting game man, I'll come find you when I'm good" — does that land, or does it sound off?
2. How do you handle the "but you were fine yesterday" problem — the delay making you look like a flake?
3. How do you hold the line when YOU feel good in the moment and the plan sounds easy? Any rules like "never say yes same-day" or "never override the pacing plan no matter how I feel"?
4. Anyone been through a strict pacing block (months) — did people fall away, and was it worth it?

Not bitter at my friends. They're normal people and this illness is invisible and delayed — a brutal combo for anyone to understand. Just want to hear how you all interface with people who don't get the thing that runs your life 24/7.

(TW brief mention of death/ suicide ideation)

For some context, I’ve been diagnosed since i was 14 in 2018 and am now 22. I have experienced all levels from mild to severe but am currently moderate heading back to severe.

When I was younger I used to desperately want to die and have luckily managed to stop feeling like that but it feels like my brain has gone the other way. Now all I want is the ability to live very long, like elves in fantasy. To be able to make up for the fact that I can’t do as much as most people, that if I had a lifespan that long I’d have enough time to do everything I want to do with my life while being able to rest.

There’s so much I want to do and I just know that with having to pace for my health so much, I won’t have time. I don’t know if anyone has thought anything like this, probably not but I thought I’d share with people who are in a similar situation in health.

TLDR - (TW death/suicide) I used to want to die but now I’ve gone the complete opposite way and want to live as long as fantasy elves to have time to do everything life has.

Hi everyone,

I don't know if I'm looking for advice as much as I just want to hear other experiences from the community and maybe get some reassurance.

My mecfs was in a really good place, averaging moderate with some mild days. I went on wegovy with the advice of my doctor because he didn't seem to have any concerns, and I've gotten to a point in my weight gain that I'm no longer comfortable with. I went on the lowest dose 0.25mg, and it was hell. Extreme nausea, extremely poor appetite (was only eating about 600cal/day), and major pots flare ups.

I went down to half a dose and am eating a proper amount now and the nausea is much better, but I'm still having issues with crashing more, low grade headaches and also for some reason increased anxiety. This is the most disturbing side effect for me and I don't know if it's being caused by the wegovy or something else.

I used to have severe anxiety and panic disorder and i also have ocd. I've been on medication thats been really helpful for it and havent had much anxiety for a long while. Now i just feel the creepy crawlies under my skin and dread all the time, especially at night like i used to get. I know GLP-1's can mess with your meds a little but i'm only on a half dose? And i'm feeling this more now on a lower dose than when i was at 0.25mg.

I don't know if either the wegovy or the fact that i'm eating less than I was is causing it and I should stop taking the med and go back to gaining weight (I'm already at 212lbs) or if it's something psychological and unrelated. I did (TW: loss) recently lose my great aunt and my grandma so maybe it's a delayed reaction to that? I just don't know.

I really want to be supporting my mecfs because I don't want to go back to being severe. I also am scared of becoming mentally ill again. But I can't just keep gaining weight like this can I? That's also unhealthy both physically and for my self esteem. I don't know. This illness is really hard.

Hello everyone,

What has your experience been with mobility aids and their effectiveness for different symptom and in different situations/ environments?

Why I ask:

I have, unfortunately, declined a lot recently and leaving my house like I used to before is impossible now. I am struggling to come to terms with it but realistically, if I want to participate in life at all something has to change. (I went from working a little bit to not buying my own groceries. I'd like to at least have the option when I feel well enough mentally/ cognitively.)

My biggest concern is probably PEM and overall exhaustion (for example walking and then not having enough energy for the actual activity) and added symptoms from standing due to orthostatic intolerance.

I can see the benefits of wheelchairs (especially power chairs) quite clearly but I am wondering if it would be "worth" looking into other mobility aids like rollators or canes. Does something to lean on make a difference in your experience?

Thank you in advance :)

I want to remove all the negative thoughts, spiraling, and rumination from my life. It’s not good for my body, and it doesn’t get me anywhere. Do you have any ideas on how to do that?
When we’re in bed for 24 hours with nothing but our own thoughts, it’s difficult, isn’t it?

I've spent probably about 60% of the last 3 years largely incapacitated. Lots of doctors appointments, tons of tests, experimenting with diet, time in the hospital. Holding myself up with walls and carts. So fatigued I sit/lay on the floor.

But the rest of the time, I've been... normal. Living my life. Gardening, farming, hiking, going on adventures.

When I hit a wall, my fiancé wants me to push through. He's tired of carrying my weight. He doesnt say that, exactly, but it's loud and clear in his attitude and behavior.

I think because I was hula hooping and hiking 2 months ago, he doesn't understand why I can't just get better now. I no longer work outside the home, so he's carrying me financially and it's hard for both of us.

My doctor is talking about a me/cfs diagnosis. I feel partially relieved, after all the tests and everything of the past 3 years. But he told me to research the condition, and... it's chronic. Theres no cure, and lots of people just keep getting worse, not better.

I tried to tell my husband, and he said "chronic fatigue just means they're giving up and dont know what's wrong." I tried to tell him about mitochondrial damage and brain inflammation, and he switched to monosyllabic grunts and the conversation fizzled quickly.

I was so fatigued tonight, really struggling, but when he said it was time for "us" to do chores I pitched in. I hate when he's grumpy, I hate even more when it's because of me.

But then next thing I knew I was sitting on the floor, unable to even hold my head up until he insisted I stand and walk to the couch. ...I dont know how to make him understand.

I feel like i will just keep getting worse if I keep placating and taking care of everyone around me. I dont get to rest. Im so exhausted now but I'm so tense I still cant sleep and its 1am. I need to sleep. It makes such a difference in how I feel. I'm so screwed tomorroe, but I'm so disheartened tonight. We're leaving for an important trip tomorrow night, and I was trying so hard to pace myself and it was like life wouldnt let me. Nothing would stop. It was just constant. SOMETHING or SOMEONE needed me, needed me going, constantly, all day. Im in a flare, but all day I never got the chance to rest. I just want to cry and I cant even give myself the permission to do that.

Hi friends. I'd need an advice from severe/very severe people here. I'm moderate to severe and once a month I do an activity I like a lot that help my mental health, but of course it gives me PEM. I'm afraid of making my situation worse but at the same time I can't let go this activity, also because it's one of the few normal things I'm still able to do. If you have some advice for me, I'd be grateful.

Thanks for reading me

I underwent polysomnography, but I’m not sure how accurate the results are; I found it very hard to fall asleep in the lab, and the sensors bothered me, so I didn't sleep for most of the night. I have POTS, and it looks like I have ME/CFS as well. If anyone is knowledgeable about this kind of testing, could you tell me if these conditions affect ME/CFS? I feel terrible in the morning.

I’m deep in PEM right now and feel utterly miserable. It’s causing bad mood swings and depression but something I really hate is feeling that I just sound pathetic and like a child because I can’t articulate my thoughts clearly and I’m trying but my voice comes out so weak and tired.

I just feel embarrassed. Don’t know if it makes any sense but maybe others can relate? It’s also so hard masking when you still have to adult a bit.

I just had an appointment for another condition and just feel like I sounded like a complete moron. Also annoyed because I feel like I did this to myself. Just hope recovery won’t be too long.

I’ve been in such a good place recently I’d forgotten how bad it can get. Nothing is worth this. It’s not even just that I had a busy day but it’s that the overstimulation completely screwed with my sleep routine and I couldn’t rest so that made it worse.

As much as I sometimes miss spontaneity and variation this has really taught me that those protective factors really improve my state of life. Also that it’s not worth spending time with people that don’t make accommodations 😔