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

[Murph]

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

we all get mad online sometimes. you, me, them.

I'll just say that bemsirching the single biggest patient community as a bad group of people - and saying they don't even have mecfs - is a symptom of being mad online rather than a description of reality

 

[linusbert]

idk, germany has a affinity for fascist regimes it seams... even Nero said this about germans. they would sell out there own brothers to be the good orderly guy... its nuts.
but anyways, this censoring is happening everywhere in the west right now. cant say US, canada, britain are any better.

 

[linusbert]

I'll just say that bemsirching the single biggest patient community as a bad group of people - and saying they don't even have mecfs - is a symptom of being mad online rather than a description of reality

how do you know those are all patients or even have the disease?
i heard a funny video today in germany state television, about people looking up symptoms online, and the guy made a example about his prostate and having concerns how serious it might be.. and a women told him she has the same symptoms so she must have that prostate thing too. (which is kinda funny for obvious reasons)

 

[JasonPerth]

i agree. I was banned simply for telling people to avoid brain retraining scams (with evidence to why) and by telling people to avoid another subreddit who was scamming mecfs patients with incorrect and harmful infomation.
Unfortunately with the subreddit named “CFS” you will have some burnout and FND mixed with ME CFS and Long Covid patients which is a huge problem. Especially when those who are sicker are the ones being banned for offering better advice

 

[HRManager]

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.

This is where I am at. Had been able to pace enough elsewhere to continue working 7.5 hours per day. Then was hit by atrial fibrillation, heart failure, hypothyroidism and kidney disease (last two caused by that nasty fucking amiodarone). Now I am barely making it 4 hours per day at work and can do nothing else in life. Bed and work. Wash and repeat. Will be going out on disability soon. Trying to make sure my replacement is trained and ready to go...

 

[HRManager]

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

I think part of the issue is the recoil reaction to ivermectin due to the hulaboo surrounding it with COVID. People just automatically roll their eyes at the mention of it even though research has shown it to be a pretty good drug. Just not for COVID lol.

I have experimented on myself constantly with various supplements and meds. When doctors and traditional medicine offers you nothing you have to try to find SOMETHING. I have found a few things that seem to help (gabapentin helps the fibro pain, lunesta helps me sleep) and a lot that didn't seem to help at all (imunovir, many many supplements).

But I have to keep trying. I refuse to accept living out my life in bed. There is too much I want to do!

Please keep us updated.

 

[Blazer95]

Exactly. Just because ivermectin wasnt the Big miracle drug for covid does Not mean the studies that have indicated immunomodulative propierties and inflammation lowering in this drug is false.

There is a reason some people Profit from it, even If it isnt anti-viral as suggested by quackery.

We cant allow to narrow this discussion down.
Thanks for Sharing your thoughts

 

[Artemisia]

They're so anti anything they think is anti-vax or conspiracy theory

Years ago like 2019 a few women said they got ME from HPV vax, and everyone pharma-splained to them that their experiences did not happen.

Tho I notice now ppl can say they got ME from covid vax w/o being banned.

 

[Blazer95]

My sister got hyperthyroiditis from HPV vax so there is that lol

 

[Slushiefan]

Well, if you’re asking me, “Lou_C_Fer” (yes, this is actually the username of the redditor at question) is probably not looking out for anyones best interests.

 

[Artemisia]

Asking for help/advice online is almost always frustrating to me. It seems people just gloss over what you write, hone in on key phrases and words that trigger some emotion, and respond to those words whether or not it has anything to do with your post. They saw ivermectin and their "anti vax conspiracy theory" alarm bells went off.

 

[Artemisia]

I asked on a subreddit that deals with a particular (alternative) spirituality what the perspective is on euthanasia if someone's in extreme physical illness. Tons of (young able bodied) redditors lecturing me on "go to doctors" "seek counsel" "learn to cope with your depression." Had nothing to do with what I was asking. Oh and they all called me "brother" because everyone on reddit thinks male is default human.

 

[Booble]

Ivermectin has been shown in careful, scientific studies not to help with COVID-19 and yet during the height of the pandemic when the virus was at its most dangerous and lethal large group of crazies continued to spout about it, preventing people from getting the vaccine and effectively killing people.
That is why the word is very triggering to those of us who had friends and family members who died from COVID-19.

 

[Artemisia]

Nevermind, not wasting the spoons

 

[PhoenixDown]

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".

https://www.s4me.info are much stricter when it comes to experimental treatments. People in /r/cfs tend to be accepting of LDN and LDA even though they are unproven.

 

[linusbert]

People in /r/cfs tend to be accepting of LDN and LDA even though they are unproven.

not referring to you, just in general to this kind of argumentation, that if something is "unproven" its not useful.
its kinda the most useless "argument" ever (besides calling them *cist whatever) especially in a novel disease where there isnt much or any data at all.
you can wait 10 years until your thing is proven (dying or suffering in the meantime by doing nothing), if ever because usually the only people who proof anything are big pharma corporations or the government which is lobbied by those. there are a lot of off-label medications being effective for different things which are not "proven" because they do not want it to be proven.
people calling for big studies seam to not be aware that those double blind with 10.000 participants can cost tens to hundreds of millions. this isnt something normal researchers can afford, they have to apply for pharma or government funds to do those. and guess who is not paying for a cheap off-label medication study especially if they have a different cash cow vaccine in their shelfs .

there is this trend the recent years by corporate media and governments to criticise treatment options which actually have no or very low side effects profile with the argumentation they are not "proven" or making up some stupid very biased sCieNcE compilation to support their argument while neglecting the other studies.
just saying the anti vitamin D propaganda in german government television is insane.

the message right now is, there is nothing which can help you except very expensive and only ON-label medication or if the government says so.

this is bad for everyone. the government people are bureaucrats they have no expertise to make health or medicial decisions, they rely on external specialists to make calls. those often come through the revolving door aka are ex or future pharma employees.
this system right now is so vulnerable for corruption that i wouldnt trust anything they say until real independent scientists did proof it .. or disproof it.