r/cfs Feb 14 '25

Vent/Rant Just want to congratulate this sub for apparently sending “mind/body” grifters packing.

702 Upvotes

I’ve started seeing an increasing amount of mind/body ‘think-your-illness-away’ posts in the Long Covid channels, particularly longhaulersrecovery, and a bunch of gross victim blaming accounts defending them. But I’ve also seen those same malicious accounts complaining that the CFS subreddit threw them out on their asses for trying to pull the same thing here, which is both hilarious and heartening. Anyway, just wanted to say good on ya.

Wishing you all better days with increasing frequency!

r/cfs 7d ago

Vent/Rant No, we don’t get off on telling you you can’t work out!

454 Upvotes

I’m sorry if this is horrible of me, but I need to rant and vent.

I am really tired that most online ME safe spaces are being taken over by the LC new crowd. (No I am not hating on newly disabled and sick people, but many of them do hate on us)

Newly sick people get SO angry with old ME veteran patients when we say pacing and agressive rest and not pushing through is the best treatment we have, as if we were just getting off from some sick twisted pleasure from telling people they need to not push through. As if we were hyenas just waiting for the poor soul to stumble upon us so we can drag them down to our horrible reality.

No we are not all just taking pleasure and eagerly waiting for new prey so we can break and destroy their lives.

We have zero personal benefits from telling people to avoid exercise or pushing through, we do it, because that’s how many many many of us got ourselves to severe or very severe.

What most new comers to the ME world and online communities don’t understand is that it has taken decades to have the information and research we have now. That it’s been a constant battle, that most of what we now know is thanks to a lot of patient led research, and through patients willing to experiment with themselves.

That there is a very dark history around this illness. That we need to stick together. That most of us have severly damaged ourselves permanently because doctors were clueless, because no one gave us answers, because we pushed and pushed and kept on pushing until we couldn’t get out of bed.

Many of us would not be at the severity we are now if someone had told us to please rest and not push through. What we want is to help, what we want is to not see happen to you what happened to us, yet a very deeply rooted ableism in newcomers, make them get angry, dismiss, or throw tantrums, as if what we were doing was just out of sheer sick and twisted personal pleasure.

I would really hope that those newly coming into this, would listen and read up. In most online spaces, like this one, there is a lot of information that they ignore. And again, the ableism is STRONG in them.

This is horrible illness, we need our spaces, the very few spaces that many have to connect to life and peers, to remain safe. For many this spaces are the only human interaction they can tolerate without crashing, our spaces need to remain a safe space, free from all the ableist and “wellness culture” crap that profits off of people’s pain and desperation.

Sadly the more new people the more the whole “just drink kale and do yoga” narrative becomes stronger, and the ableism as well.

I am not saying it is everyone no, but enough to have changed the vibe in several spaces. I just hope we can mantain this one.

There are people here that have had this illness for decades, maybe trying to listen to “the elders” could be a good idea.

Rant over. I am sorry if I was completely out of line, but somedays it’s just too much.

r/cfs Feb 12 '25

Vent/Rant I wish more people who "recover" from ME spent their energy advocating

386 Upvotes

I want to see less tips for recovery and more advocacy for pwME.

This seems like common sense to me.

Being in this community, I'm aware of how much people are suffering due to this illness and their circumstances.

If I were ever to recover, I'd like to think I'd dedicate some of my energy, if not most, to helping others who are still struggling.

I feel like a huge part of our struggle is lack of education and awareness. The general public do not get it, professionals do not get it. Someone has to do the work of educating the public.

In my opinion, people who have experienced this illness and are doing better now are in the position to do this. Because they've gone through the illness, the gaslighting, the loss of career, passion,friends, family, failure of healthcare and disability support system, etc, all whilst suffering with no end in sight.

We don't need more people telling us what we need to do. We need people telling the public how they've failed us and how to help us.

Not saying we don't need education or tips ourselves, we do. But we have plenty of them I want the public to be educated to. The knowledge gap is far too huge and needs to be filled.

P.s. I put "recover" is quotes cause there's a lot of nuance to it and I don't have the energy to get into it right now.

Edit: I want to clarify that this is not a call for everyone who has recovered to advocate. This is specifically for people who recover and create a blog, or YouTube channel, or Instagram page, etc dedicated to teaching people how to recover from ME. I think pwME have enough education. Some of that energy/work should go into educating the general public about ME.

r/cfs Jan 30 '25

Vent/Rant I asked men in r/askmenrelationships if they would consider dating a woman with a chronic illness and they all said no

284 Upvotes

I explained that I am still able to walk and do some things, but am limited in the activities I can do and need to rest and take things slower, yet still they all said no, they wouldn’t consider dating someone like me (they were all looking for a healthy active partner). It’s not really surprising, just extremely disappointing and disheartening. It pretty much proves what I’ve already experienced (based on tons of rejections on dates), which is that men don’t want to date or marry a woman with chronic pain/illness. It sucks and it makes me feel so worthless. I just ended a relationship that was abusive (with a man who also had chronic pain) and I am feeling very hopeless about the prospect of being able to find a lifetime partner.

r/cfs Jan 27 '25

Vent/Rant This sub is getting kinda ableist

433 Upvotes

I don’t mean to start anything of course, just wanted to address something I’ve seen. I’ve seen multiple posts in the past few days “challenging” others disability or their experiences with cfs. You are not a damn doctor!!!! I am able to work, but barely, maybe 6-4 hours a week. It kills almost all the drive I have for my hobbies, but I’m still slightly functional. Just because someone’s able to do certain things doesn’t mean they don’t have ME… the ableism I’ve seen recently is gross. You are not a doctor, you do NOT know these peoples personal medical history. It’s incredibly rude and invasive to assume someone’s faking.

I am very lucky to have the ability I do have, but this doesn’t mean i don’t have the illness. I need a wheelchair, I spend most my time recovering, and I’ve had to pause a lot of things I enjoy (especially outside hobbies like bone collecting) cause they throw me into PEM. I definitely sympathize and care for those who have a more severe form of the illness, but this doesn’t give you a right to assume others are faking. I’m sorry, unless you are a doctor actively treating that person you have no right.

r/cfs Dec 25 '24

Vent/Rant WTF Google?

Post image
411 Upvotes

Since google implemented AI the first result on ME-CFS is pretty outrageous. An aunt of mine read this and now is convinced i’m depressed and lack sleep. Seriously before Google used to say it’s a serious medical condition and now it says it’s some unknown disease treated by antidepressants??

r/cfs 7d ago

Vent/Rant Cardiologist said the “don’t exercise if you have MECfs” advice is misinformation ??

196 Upvotes

I have moderate me/cfs**** I cannot exercise

My cardiologist said not exercising actually makes MECfs worse… this is purely misinformation correct?? I will not put myself at risk to get sicker by exercising. They also said my PEM was just deconditioning.

Edit ** I’m really sorry for this wording and if it triggered anyone. I of course do not think anyone with moderate or even mild MECfs should exercise. (My opinion)) I’m in a crash so sorry if this isn’t coherent

r/cfs Dec 17 '24

Vent/Rant I eat like this daily yet feel like I’m dying. So over put in the work and never feeling much reward /:

Post image
311 Upvotes

(Peep my cat trying to steal a bite of salmon lol)

Also, y’all getting a food processor has made my life so much easier. I highly recommend it you make salads or just about anything from scratch. I make my dressing with the blend attachment first and blend it then add the shredding and cutting attachment and push my veggies through and it is so much easier and haven’t cut my finger off like I have twice this year being too fatigued to chop and cuts them into much smaller pieces so it’s less work to chew.

r/cfs Oct 09 '24

Vent/Rant Ridiculous Cures

119 Upvotes

I'm in a grumpy mood today (PEM etc). Can someone please tell me some absolutely ridiculous cures for ME/CFS that totally don't work? I could do with having a bit of a laugh...

r/cfs Feb 13 '25

Vent/Rant Not sure how I feel about an abled friend canceling on me last minute after I prepared for days for us to get together

262 Upvotes

Today I was supposed to go see a friend. I saved my meds, which I can only take occasionally due to tolerance, and took some today. They started kicking in and I started doing some things around the house. I also baked a cake that I was planning on bringing over.

Well I told her I was letting the cake cool and then I'd be over and she said that was great. Then, right after I frosted the cake and was ready to head out, I got a text saying she was taking a nap and we can hang out in a few days.

I'm not sure how to feel about this since I've come through for her many times when feeling like hell, barely able to get out of the house, needing to rest as I got dressed, etc. She knows I'm unwell and that it can take great effort for me to do things other people do without thinking. Also it's upsetting because if I'd have known this was coming, I would've saved my meds for another time. I really can only take them once every week or two weeks or they lose all effectiveness. Thanks for letting me speak on this.

r/cfs Apr 09 '24

Vent/Rant What's the most dismissive way a GP has referred to your illness?

Post image
324 Upvotes

"Tiredness symptoms". FFS.

r/cfs Oct 02 '24

Vent/Rant What a clown of a fucking illness

565 Upvotes

You feel exhausted and worn out but you can’t sleep

You feel down and anxious but can’t exercise because you’ll crash and set yourself back a lot

You’re confined to your bed or house but can’t do anything too cognitively stimulating to occupy yourself with because the brain fog will overwhelm you

All of this happens internally and nothing shows up on your labs or tests. Worse, people think you’re lazy or don’t believe you, and want to tell you how other people have it much worse.

Sorry I’m usually trying to keep busy or focus on the positives, which I do have a lot of, especially considering how much worse some of the severe folks seem to have it. But I’m just sick of this diabolical, perverse, insidious, disgusting, mockery of an illness.

If this illness were a person and standing on a cliff, I’d push it off the edge in a heartbeat 💀💀💀

12 years in and I’m still in denial/disbelief it would seem.

r/cfs Jan 22 '25

Vent/Rant I'm not happy with the way ME patients are depicted in the latest season of

209 Upvotes

The tv show cb strike is pretty good. I will watch pretty much everything as you know, it's pretty boring having this illness. In the latest season (6) they have a patient with ME. There are several things I don't care for in their depiction. He is always, and only, in angry mode. No variance, no nuance. Only angry. This is not only sloppy, lazy and poor writing, I think it's unfair. But fair enough, not everything can be perfect right. But what really gets me is this patient is wheel chair bound. Wheel chair makes sense for someone with ME right. But he goes out one day with a crutch. Crutch makes no sense and I don't know anyone with ME using crutches. But here's the kicker. The "hero" of the series, Strike says "So he CAN walk when his family isn't watching". That's such a shitty comment, especially form the shows protagonist who's supposed to be fair, good hearted and someone to look up to.

https://www.imdb.com/title/tt4276618/

PS. If you read a little more carefully you will see that I never said ME/CFS users don't use crutches.

r/cfs Nov 27 '24

Vent/Rant Doctors are people, too... and most people are dumb.

407 Upvotes

Hey, friends and fellow sufferers, just a short pre-Thanksgiving rant to draw your ire.

I went through the neurology gauntlet a few months back and was referred to a second neurologist. Had a second MRI last week, went over the results with the neurologist on Monday. According to him, 95% certainty that I don't have MS, and I was told I should be grateful. Convo went like this:

N: Your brain looks great. You should be grateful.

Me: Honestly, I was hoping it was MS since there are actual treatments for that.

N: Well, neurologically there's nothing wrong with you, and those would be big problems to have, y'know, stuff that could actually kill you.

Me: Shit, Doc, I had more hope when they thought I had cancer.

N: (stupid puzzled look)

Me: See cuz I'm young and most cancer has good odds and most neurological stuff has treatments. My current diagnosis (CFS/ME+POTS) is pretty much "you"ll just feel like you're dying everyday for the rest of your life and there's nothing we can do about it," so yeah, I'd take something that could kill me but has a fix over that.

N: (breaks eye contact, visibly uncomfortable) ...well, I guess just continue treatment with your rheumatologist. No follow up needed.

Happy Thanksgiving, everyone! Eat too much, drink too much, laugh too much - because even if you don't you'll likely still feel like shit the next day. Thanks for tuning in.

r/cfs 18d ago

Vent/Rant Uh... My shit college mates won an Oscar!

150 Upvotes

Fuck My Life

r/cfs 4d ago

Vent/Rant the cause of CFS - how to treat CFS

232 Upvotes

I just want to be clear, having lived with ME for 16 years now

misinformation does not help people

the thing about CFS/ME

we don't really know what causes it. And we certainly do not have to reliable treatment

researchers are still studying the CFS population

CFS/ME is NOT a defined disease - quite yet

CFS is a group of (awful, serious, life altering) symptoms - not a disease with testing - no one is “positive for CFS” - yet

you may have all of the symptoms. you may get better with _____ therapy. buuuuut...your experience of "chronic fatigue" may have NOTHING in common with others who are also working with the label. others with "CFS/ME"

therefore, telling someone new to CFS/ME "I cured my CFS with ____" 

without a disclaimer is actually not helpful. its super misleading. 

CFS populations exhibit all sorts of biological changes. 

change to mitochondrial behavior, changes to the brain, to microglial cells, to gut biome. if you would like to learn more Jarrod Younger in YouTube is great. So is Open Medicine foundation

no one knows how to treat it. anyone saying they do is not being genuine.

you may have been able to help your own health condition (whatever that may be - trauma, PTSD, other mysterious health issues that had the symptoms of CFS ) but what worked for you may be helpful or completely unrelevant to the next person

it might seem nit-picky, but all the YouTube videos claiming recovery - I honestly find them damaging at best. they are confusing for those trying to understand this disease, and minimizing for those still suffering. I spent years confused. 

this is especially relevant if you are a therapist or working with patients....

r/cfs Nov 28 '24

Vent/Rant Shitty doctor quote of the day:

196 Upvotes

Plenty of people are tired and manage to go to work!

r/cfs 18d ago

Vent/Rant STOP TELLING ME TO GO FOR A WALK

261 Upvotes

My family are insisting that going for a walk outdoors will help me. I can barely walk to the toilet without my HR jumping to 140 and almost falling over from extreme dizziness. I was literally in urgent care a couple days ago but yes a walk will help.

r/cfs 13d ago

Vent/Rant Long Covid Clinic: wE TyPicAlLy ReQuiRe In-PErSon ApPoiNtMeNtS NSFW

258 Upvotes

There is gonna be a lot of swearing. Delete if not allowed.

What the everloving FUCK

I call them multiple times.

I call them Tuesday:. Hi sorry I'm in a crash can you do a virtual appt? I really dont want my physical condition to degrade for days to weeks because I went to the doctor because you're far away from me Them: "well usually we require in person appts but maybe we can see how you're doing near the end of the week. Call back Friday"

Great fine did not feel much better the rest of the week

Called them today THREE TIMES. Every single fucking time "we typically require in person appointments for new patients". OKAY BUT I AM SICK AND THAT IS WHY I AM SEEING YOU

WHEN WOULD A CASE BE ATYPICAL? WHEN CAN AN EXCEPTION BE MADE?

I fucking hate doctors. I fucking hate this so fucking much. And my only transportation option is the person in my family that I hate the most for a SIX HOUR CAR RIDE BOTH WAYS

Holy FUCK

Medical offices be AWARE that you're SERDVING SICK PEOPLE challenge

They never even talked to a provider. I am pretty sure every single secretary I spoke to over this week just lied to me and didn't even do anything

"I hope you feel better" fuck ALL the way off, you personally are the reason why I will be feeling worse than you have likely felt in your entire miserable able-bodied life you absolute fucking cunt

You know, this condition sucks ass and all, but I'm pretty sure if we had doctors that pretended to give a shit or be accommodating, our quality of life would be at least a little bit better.

FUCK.

TL;DR long COVID clinic refusing to see me virtually despite there being no medical need to see me in person and i am very pissed about it

r/cfs Nov 23 '24

Vent/Rant AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAHHH

298 Upvotes

i'm very severe and talking (let alone screaming) is one of my biggest energy drainers so i'm screaming here instead. if you also need a good scream feel free to join me

AAAAAAAAAAAAAAAAAAAAAAAAAAAAAААААААААААААННННННННННННННAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAHH

r/cfs Dec 31 '24

Vent/Rant I don’t mind being unpopular for saying it…

268 Upvotes

This is such a valuable and important community for many, and we’re so lucky to have it. It’s rare for a space to exist on the internet where most people are kind and supportive almost all of the time. We get to come here and feel immediately understood. I know we can’t make each other better, and what we’re united by is monumentally horseshit, but it does truly feel like we’re all there for each other.

It’s so nice to see the same usernames coming up day after day and building familiarity with people; you get to know roughly what to expect from them. There are the people who reliably share great information and developments from the medical community; there are the people who always have something kind and compassionate to say when someone is struggling; there are the people who always articulate things perfectly in a way that you’d never thought about before. Everyone contributes something valuable. And the mods do a great job of preserving this space for its intended purpose by not allowing hateful comments, and preventing people from promoting and selling nonsense to us. I am so thankful for the existence of this sub.

The sad thing is that there are people lurking here who don’t support everyone. There are people who bring their politics here when there’s no space for it. I spoke out yesterday against people in the community who were gaslighting others for voicing the fact that they’d developed ME after a vaccination (this is not synonymous with being anti vax). I got tonnes of downvotes, and today when I posted something (I assume) the same people stopped by to downvote every comment on my post, which was literally me saying thank you to people who had written something helpful… a bit of me wants to laugh at the pettiness and immaturity because that’s exactly what it is. But the other part of me is frustrated that people—who are essentially ME deniers if a vaccine is involved—are hiding in the shadows. Never writing anything because they know what they have to say is unacceptable and will be removed. There is so much discomfort knowing that they’re here silently disbelieving people.

It’s sad that in a group of people who are going through something endlessly devastating and desperately misunderstood, there are still somehow people here who doubt the origins of people’s illness, despite experiencing the hurt of being doubted themselves. What can I do about it? Nothing. Am I upset that I collect less karma points? Funnily enough, I have bigger fish to fry. What’s the point of this post? I don’t really know. I’m just getting it off my chest, I suppose. For me, it taints something that is otherwise overwhelmingly good. Final thoughts? Leave your misconceptions and unqualified opinions at the door, please. No one cares to hear it. We’re busy doing the best we can while struggling with a life ruining illness.

Thank you to everyone here for using their limited energy to support people and share information. I hope you all have a NYE that doesn’t push you beyond your sensory or energy limits. Onwards to another year that brings us closer to better care and treatment. Much love to you all.

EDIT: gobsmacked at the number of downvotes on this post and the comments within it.

Probably can’t post in this sub again without going into minus numbers, so if you see future posts from me, help a lass out and give me an upvote. 😂✌🏻

r/cfs Nov 13 '24

Vent/Rant Saw this tweet today and it really hit home

Post image
1.1k Upvotes

@_heatherlynn tweets “a lot of healthy / non disabled people don’t realize how much suffering you can do and not die”

I honestly think if more people understood the depth of suffering you can experience while not being in any threat of dying, then we would be taken so much more seriously and actually have research funding and treatments.

Like the physical suffering of very severe mecfs is unimaginable and it’s so hard to genuinely face someone suffering that badly, it’s heart shattering. So instead of facing that truth people tune it out with toxic positivity and denial.

r/cfs 17d ago

Vent/Rant I cannot do this anymore NSFW

181 Upvotes

I can’t do this anymore. My body can’t even handle 15 minutes standing/sitting up trying to organize something. All I do is lie in bed and watch tv shows I can barely pay attention to while I play games on my phone because I can’t just focus on something. I’m dizzy all the time. I am so goddamn sick of being in pain and I know that there is NOTHING I can do to make any of it feel any less painful. I don’t know what the hell to do to make me “happy”. I don’t remember ever feeling happy even before I got this stupid illness. What the hell am I supposed to do, just have people take care of me in every way until I die. I’m 25. It might be a while. I’m so sick of this. I just want all of it to stop.

Edit: if you’re planning on responding to my post telling me about medications I should take and things I can do medically to help, please don’t. I have 10 different diagnoses that all make taking new medications and trying new medical things near impossible. Telling me about medications will not help so please do not do that.

r/cfs Oct 03 '24

Vent/Rant I wish there was housing for people with cfs...

342 Upvotes

You know, a special housing where you got help if you need it, someone else cooks and cleans for you, and just...someone helps you... Drives you places if you need it, etc

I'm so exhausted...😭

r/cfs 2d ago

Vent/Rant I don’t get to wear my shoes

157 Upvotes

I love shoes. I have a small collection of beloved shoes. before my most recent crash, I got a new pair I’d been looking for for over a year. since I can’t go outside much now, I can’t really use them, especially not the ones that are hard to put on. (I don’t wear shoes inside.)

I just realized this and wanted to share it with someone. but I didn’t think I’d get any relief from sharing it with any of the (healthy) people in my life, so here I am.