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

[SlamDancin]

@serafim I somewhat agree with you but trying “random” medication/supplements still has a higher chance of treating/curing a person than doing nothing. I was bed bound just a couple years ago and now I’m mild bordering on remission. My treatment wasn’t exactly random but it also wasn’t anything like a guarantee

 

[serafim]

@SlamDancin glad to hear you’re doing so much better. I also recently improved from very severe thanks to Abilify. My point was that the chances you’ll stumble upon a cure if you take any drug someone recommended on a forum regardless of evidence is incredibly small. You’re much more likely to make yourself worse with this kind of experimentation. Not saying it applies to Ivermectin, it seems safe as far as pharmaceuticals go, but applying the same logic to other drugs can be dangerous. I can think of many cases where such experiments have gone wrong.

 

[linusbert]

surely not by people taking random medication to see what sticks

actually thats exactly how its done.

pharma does the same, they first try different compounds in cell cultures, then in rats, then in humans. you can skip the first two and do it on yourself as you are boss over your own body... at least until today.

back in the day they tried it with plant compounds based on hear say, like metformin and nowadays they skip the plant part and try to mix something in the lab. but the procedure is the same.
most modern medicines are derived from plants, microbes etc. like penicillin from fungi.
so the miracle cures from shamans in the past are the base for modern medicine... its just sad how modern medicine ridicules its origins.

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

everything and everyone who keeps you on the path of doom. another resistence you must overcome to get better.
that can be on multiple levels, financially, socially, morally, health etc.

so who are the dogs in this thread? obviously the redditors trying to emotional take down others.

My point was that the chances you’ll stumble upon a cure if you take any drug someone recommended on a forum regardless of evidence is incredibly small. You’re much more likely to make yourself worse with this kind of experimentation

where else would you like to get input what to try which is better qualified as input from people which suffer the same condition and got better on something? its this one actual purpose of those forums to get help to get better?

wanna wait until big pharma and medical and politicians spends big $ on research on a disease which they actually dont believe even exists?
they actually have a "cure", its called GET and behavioural therapy. and if those dont work the patient moves up in the psycho diagnosis ladder. (ironie)

 

[almost]

surely not by people taking random medication to see what sticks

Denigrating the OP and those who experiment on themselves is not an effective argument. I didn't find his argument or choices "random" with the hopes of "stumbling" on something that worked for him. These words you deliberately chose send the clearest message in your posts.

I experiment. I also have a degree in biology, have a year of organic chemistry, with biochem, genetics, microbiology, physics, in addition. I understand the scientific method. I am no expert, yet I know how to experiment. I also know how to take risks. Others learn on the 'job.' That works too.

My take is that the OP was gathering information, the observation part of forming a hypothesis. Some are jumping ahead it seems, passing judgment on their speculation of his, as yet, unformed hypothesis and his method. Talk about thin.

My take on this forum is that people do not make treatment choices randomly. This is one of the few threads I've read recently that doesn't have a link to at least one study in it. Your worldview on this disease is your own. I embrace others who make other choices and expand the envelope.

 

[Blazer95]

Yes, I exactly did Not make any random choices.

To make thing short, I have added this guy into my igno-list.

By this I want to make very clear that I will be always up for a neutral scientific and fact based discussion, I am not reacting like this just because he is disagreeing with me. Disagreements in a science and fact based discussion is actually wanted in me, so dont worry

However this brainless bashing against everything that is outside of the LDN, LDA Treatment-Box isnt really good for this disease.

A worldview Like this is Not Mine. If He wants to stay Safe only do Ldn and lda He has evey right to do so. Pushing this idea on everyone Else is Not OK however. I Imagine Lots of people from our "list of recovered or improved CFS people" would Not be where they would today If they didnt try Things out.

Of course I would only use this medication after careful consideration, what I was obviously trying to do Here by asking questions. Narrowing down a Debate to "allowed" and "Not allowed" oppinions is a Thing I have recently started to See in politics aswell and I find that very alarming - maybe you dont but I come from Germany and we Had censorship and "allowed oppinions" once 80, years ago and that is a Thing I am very very sensitive about. Reddit has been moving into this direction by banning Out every possible Statement that May Not be "wanted".

I want freedom of thought and a Open discussion. This Person seem to want censorship.

This is my Take on this and by this Note I dont want to waste any more energy into this stuff because lets be real: WE all only have Limited energy. i Just Put him on my Ingolist and will move on.

Btw: i mainly started this topic for to reasons 1. To vent a Bit (and i think thats fair) 2. And to keep Others from wasting their time in this Reddit Thing.

Ps: i will keep everyone updated on my Journeys

 

[hmnr asg]

i left that subreddit because of these types of interactions, it's truly a dumpster fire

 

[SpinachHands]

Ugh yes, I've given up on r/CFS too. The last time I posted there I was asking for support/advice as my partner was having some odd mood swings and getting very upset/angry with me. Apart from a few helpful folks who suggested infections or imbalances that could be affecting mood, the majority insisted I was in an abusive relationship! They all claimed that despite their illness they would NEVER get upset with their partner or carer, and some even said I should "leave for a few days to make them appreciate what they have" 😳 Some even suggested dumping my partner at a hospital or nursing home!

I honestly couldn't believe it, the lack of empathy they had towards my partner's situation. Some didn't even believe that my partner could be so severe! They then downvoted every attempt I made to try and defend my partner, like they expected me to just go "sorry my love, I know you're in hell but I don't like when you get frustrated, and the people of Reddit decided after reading one text post that you're abusive, so sayonara! Hope you don't starve!" smh...glad I've got PR!

 

[linusbert]

Ugh yes, I've given up on r/CFS too. The last time I posted there I was asking for support/advice as my partner was having some odd mood swings and getting very upset/angry with me. Apart from a few helpful folks who suggested infections or imbalances that could be affecting mood, the majority insisted I was in an abusive relationship! They all claimed that despite their illness they would NEVER get upset with their partner or carer, and some even said I should "leave for a few days to make them appreciate what they have" 😳 Some even suggested dumping my partner at a hospital or nursing home!

I honestly couldn't believe it, the lack of empathy they had towards my partner's situation. Some didn't even believe that my partner could be so severe! They then downvoted every attempt I made to try and defend my partner, like they expected me to just go "sorry my love, I know you're in hell but I don't like when you get frustrated, and the people of Reddit decided after reading one text post that you're abusive, so sayonara! Hope you don't starve!" smh...glad I've got PR!

baffoons. this supports my first idea that they arent actually really sick. i bet most of those commenting have a pretty normal life. of course just assumption and could be wrong.

mood swings is normal with this disease. i happen to be pretty stable in mood but if i take vitamin b6 i become irritable and hot tempered. there isnt much needed to make me really angry, stuff which usually doesnt bother me. i read this from other folks to.
idk what b6 disturbs in me, but i bet another person can have those disturbances without the need for b6, but just some other trigger.

the abusive relationship shit i heard also, but it was the other way around. my girl went to psychiatric consultation for a completely different matter, and her expert suggested that she is in a abusive relationship, where i as the disabled am faking the disease to make her bound to my will.
woa thats some crazy shit, now reading that i believe that therapist is ripe for the funnyfarm himself.
another psychiatrist i visisted as a stay in a psychosomatic clinic suggested the other way around, she was so abusive, making me sick and i should quit the relationship.
it must be really it, that the nutcases are working in that field... you cannot make this shit up.

 

[SlamDancin]

@linusbert I feel fairly confident from my experience in saying that psychiatrists are the most ignorant and unscientific doctors in the entire medical field, which is saying something honestly

 

[Blazer95]

Ugh yes, I've given up on r/CFS too. The last time I posted there I was asking for support/advice as my partner was having some odd mood swings and getting very upset/angry with me. Apart from a few helpful folks who suggested infections or imbalances that could be affecting mood, the majority insisted I was in an abusive relationship! They all claimed that despite their illness they would NEVER get upset with their partner or carer, and some even said I should "leave for a few days to make them appreciate what they have" 😳 Some even suggested dumping my partner at a hospital or nursing home!

I honestly couldn't believe it, the lack of empathy they had towards my partner's situation. Some didn't even believe that my partner could be so severe! They then downvoted every attempt I made to try and defend my partner, like they expected me to just go "sorry my love, I know you're in hell but I don't like when you get frustrated, and the people of Reddit decided after reading one text post that you're abusive, so sayonara! Hope you don't starve!" smh...glad I've got PR!

Wow. These people dont have ME/CFS at all. There is no doubt that they have a completely different and lighter disease.

Hell even I get angry at my partner sometimes because she sometimes forgets that when I say I have to stop rn or I'll crash I really really mean it and usually i go directly to a chair letting everything fall down. She still forgets this sometimes and I get angry and that.

I still love her. Absolutely normal with this horrific disease. Not saying its the way it should be but clearly having REAL ME/CFS not this "reddit fake cfs, probably just tired bullcrap" is so exhausting and difficult, it puts your body through so much pain and suffering that its hard to NOT get mad even the smallest stuff.

glad you left the place.

edit: and yeah I mainly dont believe in psychatrists aswell. My primary care doctor just happens to be a therapist alongside is general practioner licence making it very comfortable for me talking about my mental problems while i still doesnt doubt i am bodily/physically ill. basically my General Practioner / Primary / Hausarzt (whatever you call it in your language) - is the only doctor i am trusting rn. all others have failed me. Oh and there is one doctor for lyme i can recommend in germany aswell but thats about it.

 

[Rufous McKinney]

are you one of those redditors?

are those like creditors?

 

[Murph]

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

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

r/cfs is a different community to r/cfsme and r/mecfs

the latter are small outposts of the biopsychosocial model.

The former is a very large subreddit. I've been a member there for years, since it had like 1500 members. Now it has 46000.

I can guess you got dowvoted for saying the community is 90% cowards who have accepted a death sentence. I see a lot of your posts got deleted for incivility. Insults are usually met with downvotes on reddit.

For me, being on reddit when in a bad mood can turn bad for me because if I get curt and unpleasant to others they respond in kind and my bad mood gets worse. I got banned from a subreddit the other day for asking someone some tough questions and dropping a few swears; i was in pem at the time and my judgment was not good.

I don't think r/cfs is a very useful community for science and it's all a bit and basic for me to use intensively. But I visit regularly. It's a big community and if you're respectful people can be very kind.

 

[almost]

Nicely done @Murph (I would expect no less from a Canine brother); very well said.

For me, being on reddit when in a bad mood can turn bad for me because if I get curt and unpleasant to others they respond in kind and my bad mood gets worse.

I find this is the way the world works in general.
I've had to walk away from a few things here, and chill or do something else for a while.

 

[Judee]

I can guess you got dowvoted for saying the community is 90% cowards who have accepted a death sentence. I see a lot of your posts got deleted for incivility. Insults are usually met with downvotes on reddit.

'T wasn't me. I was just linking someone's thread on PR. I don't even have an account on reddit.

 

[Viala]

I can guess you got dowvoted for saying the community is 90% cowards who have accepted a death sentence.

That as well. What he said can be understood as an insult, yet suggesting to do nothing is also an insult to someone who is not in such a good situation and or for various reasons cannot afford to do nothing. It's basically saying 'let them eat cake'.

This reddit is a bit different than PR, there are younger people there with a lot of CFS newbies and that strongly influences their approach to novel treatments, I think a lot of people there do not fully realise the consequences of this disease over the years, especially when it gets worse. PR is more research oriented with more mature community of longtimers, who have more experience in consequences department and that changes the perspective. That being said, I find both websites valuable, they're just different.

 

[Blazer95]

r/cfs is a different community to r/cfsme and r/mecfs

the latter are small outposts of the biopsychosocial model.

The former is a very large subreddit. I've been a member there for years, since it had like 1500 members. Now it has 46000.

I can guess you got dowvoted for saying the community is 90% cowards who have accepted a death sentence. I see a lot of your posts got deleted for incivility. Insults are usually met with downvotes on reddit.

For me, being on reddit when in a bad mood can turn bad for me because if I get curt and unpleasant to others they respond in kind and my bad mood gets worse. I got banned from a subreddit the other day for asking someone some tough questions and dropping a few swears; i was in pem at the time and my judgment was not good.

I don't think r/cfs is a very useful community for science and it's all a bit and basic for me to use intensively. But I visit regularly. It's a big community and if you're respectful people can be very kind.

well obviously that was a horrific statement that i made there and i of course didnt mean it.

but the downvotes and shitcomments happend before i made this exaggerated and emotional comment and was more of a reaction on their bad and basically useless comments.

not trying to justifiy what i said in that specific statement. I am sorry for what i said right there and still I shouldnt have said that. however, that doesnt make them carry the moral high ground because I initially started very friendly.

just my take on this, maybe you see it differently

 

[linusbert]

Nicely done @Murph (I would expect no less from a Canine brother); very well said.
I find this is the way the world works in general.
I've had to walk away from a few things here, and chill or do something else for a while.

I can guess you got dowvoted for saying the community is 90% cowards who have accepted a death sentence. I see a lot of your posts got deleted for incivility. Insults are usually met with downvotes on reddit.

For me, being on reddit when in a bad mood can turn bad for me because if I get curt and unpleasant to others they respond in kind and my bad mood gets worse.

isnt it more like, if you dont fit within the common narrative they punish you with every nasty thing without consequences but you get punished hard for mildest offenses?
i notice this a lot lately, cant say much without sudden ban or shadow ban. and its ok to be nasty and insulting if its against the "right" people.
actually phoenixrising is the only social media platform left where i still have a active account. the other platforms couldnt tolerate my opinions...

the internet always was a harsh wild place, but the last 5 years its pretty weird, censure, insults, discrimination, mobbing this wasnt back in the day. 15 years ago you could have a fight to the bones and nasty insults, but usually you wouldnt get banned by 1000s people massvoting/reporting you down because they dont like what you say or even your local bank canceling your bank account because of that. in germany this happend.

 

[SlamDancin]

@linusbert Well from what I’ve heard re: people protesting the war on Gaza it seems like Germany is not a place where free speech is being allowed currently.

 

[Blazer95]

I dont know why you randomly picked this Up but our free speech is Limited Here in Germany rn yes. And they try to make it worse.

Be careful what you Vote for.

 

[SlamDancin]

I dont know why you randomly picked this Up but our free speech is Limited Here in Germany rn yes. And they try to make it worse.

Be careful what you Vote for.

The guy I replied to mentioned Germany at the end of his post