I’m having an emotionally hard time about this. I don’t know why I’m not triggered the same way by people with depression because that’s another thing that can “appear” the same as CFS but it’s just not the same. I know agoraphobia isn’t a choice. I know. I know it logically. I have my own disorders that I cannot help. I pick at my skin and bleed and I cannot help it. So I know. But emotionally I still feel triggered. It triggers me to see someone who keeps themself inside for comfort when all I want in the whole fucking world is to get the fuck out of here. It makes me feel panicked, want to scream up at the universe THAT IS NOT ME. I WOULD GIVE FUCKING ANYTHING TO GET OUT OF HERE. It’s like I feel threatened or something that someone could look at them and think we are experiencing the same thing. I felt similar to people w EDs when I was malnourished due to my CFS. It was like, no you don’t understand I fucking love calories I love fat and i desperately want to eat. I get triggered the same way. I met I cool person but they have agoraphobia and I just don’t know if I could handle talking to someone who is stuck at home but could technically walk out the door while I’m stuck at home desperately wanting nothing but that but physically unable to cause the thought makes me panic so bad. Perhaps with claustrophobia which I guess is also a disorder 😅

If ME/CFS is a neuroimmune/metabolic illness, what biologically explains why some people suddenly have a big shift in their baseline or go into spontaneous remission out of nowhere and without the help of drugs, but solely based on lifestyle changes (such as pacing/resting more)?

I ask because skeptics (doctors, family, etc.) love using this argument as "proof" that the illness was psychological all along and some stressor is triggering the crashes. Once the stressor is out of life, you will start to recover.

How to prove they are wrong? Do you ever doubt yourself and give 1% that they might have a sound argument there? Myself, after 6 months of living hell, I still do crash after doing minimal things BUT my crashes last a bit shorter. And I do not know how to explain that other than the fact that I am bedridden so I guess I rest more? Have no idea. What if it is a worse version of a (physical and/or mental) burnout? I am so confused.

This is a provoking one, but I would like to challenge this thought.

what’s your experience with that, what dose do you take, how often, and for how long ?

i can do more on benzos, I wonder if I could use benzos everyday if they keep working, if the only downside is that I sould tapper off oneday.

I could then tapper off whenever I find another treatment

whzt do you tjunk ?

Anyone improved with peptides ?

For those of you that have tried different supplements and also LDN, and had a positive effect of LDN, how much positive compared to the maximum positive benefit from a supplement? :)

wondering if its a good idea for my partner to try coenzyme q10, but before doing so, i wanted to check for any poor experiences here?

Has anyone been cured from post exertional malaise? If so how?

Changes as measured by the Amazfit Heliostrap. Suspected onset starting around January, worsening starting April. Did anyone notince such changes?

Changes in Objective Biometric Metrics recorded via Helio strap (99% avg. correlation with medical chest strap. And 70% avg. correlation with EEG device for sleep monitoring.)

Order of Severity of Current Complaints

mods, if this isn't appropriate, you are free to delete this

to give context: i'm physically ablebodied, have read about me/cfs and know the basics of this horrible disease. i have a character whose mother develops severe me/cfs after his birth. how can i best describe that? would anyone, especially parents, be able to give me their perspective? thank you all <3

self-explanatory.

specifically if you have any products that you really rely on, I would appreciate it. I saw some people recommending cooling pads for pets, but dunno which one to buy and my brain is too fried to research.

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.

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 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?

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

Do you ever feel like you would like some company or to be on a call with someone just to feel someone’s presence? But not have to feel pressure to talk a lot or be “on”.

I wish that a lot as I feel too wiped out a lot to socialize and I rarely have any in person company along with not being able to leave the house much anymore.

When i go into voice chat rooms, I hear people converse for long periods of time like it’s nothing.

It seems like a normal persons idea of socializing is doing some activity together while talking a lot. I just don’t have energy to do some activity with some brand new person nor am I able to converse a lot.

But if I take some time to get to know someone first, then maybe I’ll be more inclined to do an activity together. The issue is activities take such a toll on my energy. And also, you can’t expect new people to be understanding. Some people will ghost you rather than be chill about it.

Basically I crave some company at times but lack the energy to fully engage. And it sucks, people only want to interact with you when you are feeling well.

It would be nice to have someone to just chill out with and have that comfortable silence with. Maybe share a few thoughts here and there. Or talk more if we are feeling okay.

Anyone else relate?

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’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 😔

for example, sometimes I wonder how much does my GP think my issues are mental health related. especially my insomnia . he has often suggested a psych for my sleep, which I have already tried. unfortunately although all these things help me manage it better, it still isn’t fixing my sleep problem. I’m not anxious about not sleeping, but sometimes I mention it in case he has thought of a new drug to have tried. can anyone please share some suggestions on using a better language when talking to my GP so we can get on the same page? Thanks for your time.

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 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.

I've been looking for months and I can't seem to decide. I'll need it pretty much full time as I'm attempting to go back to uni soon. I'm mild, leaning more into moderate these past few months and my legs are my enemy.

I would really like to use a manual as my uni rooms and clinical placements are always in small rooms with little room to move around in. My campus has lots of slopes though and I see myself tiring out fast. If I do get a manual I'd need a power assist but I think I'd like the flexibility of choosing when to self propel when I'm able.

Electric is very ideal too energy wise but I worry about the quality and whether it's waterproof. The last thing I want is to be stranded somewhere unable to move. Also they're larger.

I'm hoping that I'll get accepted for the Snowdon trust mobility grant for uni students which gives £5000 towards funding mobility equipment. If not then I'll have to self fund.

Thought I'd ask the audience and see what people are using.

I had to leave environments back to back due to violence and abuse and am now couch surfing. My ME/CFS is massively crashing but hosts don’t seem to get it and ask a lot of questions about what I’m ‘doing’ to improve my situation when I can’t keep going and going non stop without rest. I was with abusive family for three years and have had housing instability for 4 weeks non stop moving around. I am obviously grateful to hosts but exhausted and then if I rest I fear/risk being kicked out because maybe they think I’m lazy or just depressed/mentally ill instead of extremely traumatised and mentally & physically unwell. They just say ‘you’ve barely eaten, have some food to regain strength’ but my digestion is shut down and that’s just not how it works. I struggle with boundaries and feeling like I have to explain my self when people are feeding me and putting a roof over my head. How can I balance being ‘useful’ and managing expectations of productivity/what I should do when a lot of people even who are well meaning just don’t understand ? I also recieved notice today my current host is having guests from overseas next week so I now have a hard deadline to move again when I thought I would be able to stay a bit longer. Any advice would be appreciated Thankyou. I don’t want my condition to worsen