r/CFS is the biggest shithole I've ever seen

[Blazer95]

I have tried to ask about Ivermectin on this r/cfs subreddit because of its suspected immunmodulatory properties, increasing Treg cells and decreasing inflammatory cytokines and the only answers I got was either: "why are you trying ivermectin" and "you have to accept your disease" "only thing that works is pacing".

Why would you openly demoralize people like this? A lot of people have recovered from a lot of 'weird' or 'unusual' treatments and I think its absolutely horrific and even cowardly to some point to stop try and getting better (not intending to offend anyone).

While accepting the disease in the current state and pacing is absolutely elemental and nobody with a sane brain ever doubt that I think its absolutely important that we carry this mission on and try on and on and on and on.

I dont get this subreddit and I am leaving it RN.

 

[Judee]

Yeah, that's what Jason dealt with there too.

https://forums.phoenixrising.me/thr...bans-you-if-you-say-something-about-it.90736/

 

[Blazer95]

thanks for informing me judee

 

[linusbert]

never accept defeat as long as you have the energy for it.

if you are the one trout in the stream who doesnt want to accept fate to be eaten by bears further upstream, and tries to get back to the ocean, all those fishes going downstream will despise you.
can't do anything but ignore those fishes.

what i personally do believe , is that there are a lot of folks in those cfs forums who actually do not have cfs, as in not fullfilling the requirements, especially getting worse after exercise.
so there are some borderline healthy/sick people who have something else but are not that much impaired.. usually they have a full 8...9 hour day, go to the gym a few times the week and have a vivid private life. they might feel some burn out and other annoying symptoms, but its not cfs.
of course with that conditions its easy to accept the fact that you got "cfs" because, to be frank, you actually can get by.
but when you become house bound.. or bed bound or struggly besides your job you got a lot of pain.. thats no condition people want to be in.

 

[SlamDancin]

Let’s be real, Reddit in general is a giant shit hole

 

[sunshine44]

I don’t know anything about Reddit but your title on this thread is where it’s at 🤣

And that’s a great analogy about the fish Linusbert! I often feel this way.

 

[BrightCandle]

I follow and read research papers to follow what has gone wrong in my body and to try and treat what I can to improve my function. Other people can approach their disease however they like and I am not going to say any approach is better or worse but at my level of pain and function I am going to spend what little energy I have attempting to improve. I highly doubt the medical system gets its act together before I die so frankly its me treating myself or nobody. The people who live on /r/cfs they are the ones that have decided to do nothing, that isn't my style.

 

[Treeman]

I tried ivermectin and the only thing I experienced was that my warts disappeared.

 

[Viala]

People who say that only pacing works and ask why are you trying unusual things probably have mild CFS, do not work or they don't have this disease at all and are just normally fatigued.

Anyone who has to work and has moderate CFS or worse knows that pacing is practically impossible in an adult lifestyle, unless they have a lot of help from others, can go home after work and do nothing. Pacing is impossible for a lot of us and is not a guarantee of success, so I think that if someone is not interested that much in finding a cure, they probably are not sick enough.

Acceptance is fine I'd say until moderate stage, once someone has to be housebound, can't work, can't have social life, has to give up most activities including the ones that bring us joy, will not want to talk about accepting this disease.

 

[Blazer95]

Yeah man i am housebound and unable to work, my girlfriend has to do all the Yard Work. So horrible for a man to See your Girl have to do all the stuff while you lay in bed in pain.

Why would i exactly NOT try everything I could to fix this. Its ridicoulous

 

[lyran]

Yeah man i am housebound and unable to work, my girlfriend has to do all the Yard Work. So horrible for a man to See your Girl have to do all the stuff while you lay in bed in pain.

Why would i exactly NOT try everything I could to fix this. Its ridicoulous

Of course try to treat yourself but don't stress about it. Also accept that you have a physical disease.

After I lost my hope with western medical system, I have spent thousands of euros in different alternative treatments in the past only to notice that they did nothing and saw myself as I have failed to get better. My parents and relatives have pressured me all this time and I still hear comments like "why are you STILL fatigued? have you even tried to cheer up?". I understand that they know nothing about this disease so they are unable to understand but I still thought I'm a loser.

On a spiritual level, illness/disease is not a bad thing. It forces you to change your habits and deepens your understanding on how your body functions on a physical and mental level. You also develop more compassion to others who aren't feeling well.

 

[serafim]

Acceptance doesn’t mean you should be completely passive and not try to improve. there are tons of people on this forum who endlessly experiment with various treatments to no avail.

 

[Blazer95]

Sounded a Bit different to me.

And I Said dispite I know the massive amount of Literature that goes against it it MAY BE my Last Straw in the Future.

Nobody ever talked about "cures". But I definitly aim for mild CFS or even Remission.

 

[Blazer95]

btw:

you are siding with the biggest shitheads.

I was very polite in the beginnging:

why would you downvote this post? It was just full of curiousity and not claiming this that are untrue? I am clearly pointing out that current literature is not favouring IVM and I was just seeking for personal experience? I have not ONCE talked about a complete CURE. Learn to read for gods sake.

You have to be a shithead to downvote this.

Well OK I got a bit emotional and triggered here but who wouldn't after 10 messages of people basically saying to me "give up".

I will never stop pacing, I will never stop being careful and starting low dose. I know these things since the day i was diagnosed. F**ing idiots.


Yours, Blazer.
Sorry for the swear words I get mad at these people.

 

[linusbert]

Acceptance doesn’t mean you should be completely passive and not try to improve. there are tons of people on this forum who endlessly experiment with various treatments to no avail.

so whats your motivation to write this? were you involved in reddit? are you one of those redditors?

 

[sunshine44]

For what it’s worth, sometimes in this world, it feels like we have been surrounded by mob mentality for years and years of people telling us to just calm down, then to just accept losing the ability to function and gaslighting us for trying to get out or thinking we know things or thinking we don’t know things 😂😅

It’s legit felt like an episode from straight out of the twilight zone to me. Except we are in it. And sometimes when I’m strong, I lean into it and think…. What does this imply about society as a whole? 😳 and the answer is generally concerning.

So, keep up the good fight blazer. It’s very likely not going to be the corrupt and broken system fixing us anyway, but, instead ourselves. And as Linusbert said, that’s going to anger a few fish on the way.

 

[linusbert]

@Blazer95 , what i can recommend if you are stable psychological, is too watch once in a while a few videos about how life in africas works out, like check youtube for wild dogs + impala ... (and dont do if you cant handle very graphic content).
i have this one day every few month where i watch a few of those videos where animals in the wild eat other animals, fight , struggly, get eaten, and this always brings me back to realism out of disney world. this is what life is about.
we are the impala's and if we dont take care, the wild dogs will come for us.
humans built civilization and this whole social construct which shields us from the gruesome reality of nature. but wonders wont come if you dont fight for it. with those disgusting diseases like cfs and others, we are not on top of food chain anymore. we struggle, we need to fight.
and while the fight is desperate , once in a while the impala wins the fight over the dogs.

 

[Viala]

There was no reason to downvote what you wrote. The only thing it could be, it was about ivermectin. It's been such a heated topic last years and some may not like to talk about it or don't want others to talk about it.

Accept it and do not look for a cure sounds like a doc talk. Besides, how do they think cures are being found?

 

[serafim]

were you involved in reddit? are you one of those redditors?

“am i involved in reddit” lol

no i didn’t comment on OPs post

 

[serafim]

and while the fight is desperate , once in a while the impala wins the fight over the dogs.

if we’re the impalas, who are the dogs in this scenario?