The moderator of Reddit r/cfsme & r/mecfs pushes CBT and brain retraining and GET and bans you if you say something about it.

[Dysfunkion]

Me too. Was the first thing that I suspected when I got sick. How could it not at least be a major player? Ppl think we can trash the planet w/o consequences

If it wasn't I wouldn't be in this situation right now or at least not be as terrible of a case where I'm at the point of simply trying to find a consistent supplement stack that works for my quality of life and go from there. There were 2 points in my life I indistinctly remember toxins being involved that pushed me down further where I never completely got back up from. If I do the complete opposite of what I'm doing now and adopt a HIGH toxin lifestyle I'd be in the hospital by the end of the week, if I stop taking my supplements now it's also over too. I am alive right now and can at least still work my part time job because I manage my environmental toxic load so well and know the signs when my body is reacting badly to something so well now. I really don't know what peoples issue here is, all of my sensitivities even EMF wise are grounded scientifically even if we don't have some paper that solidly says "this specifically causes this in all cases" (which will never happen, the human body is too complex). I really think it's just herd mentality at its most absurd to the point of denying the reality right in front of them.

 

[linusbert]

its so common that people ignore it because you cant do anything against it... well gov and corporations could... but why would they? there is no profit in that.
and gov is just puppet for corporations... so why would they?
they pretend to care about the planet with the co2... and despite that the co2 tax actually doesnt go to the environment... its just a big money grab scheme and its laundered around. probably most of co2 tax is right now driving around in a eastern european battlefield.
also so funny, that of all polutions they want to combat the least harmful thing... co2 has zero toxicity towards life, actually its good for plants and we humans need it too. but all those pesticides, micro plastic, chemicals.. nobody is doing anything about it, they are not even talking about this.


it pisses me off very frequently, i just was washing a cotton sponge in a bowl of glas and pure tap water. and it has a bit of chemical plastic smell. i suspect now that the new pipes from the new building or somewhere in the water installation give of this.

and then all this cheap chinese crap. i got the feeling they are incapable of producing anything which isnt toxic or leeching off.. no plastics, no glas, no steel... nothing... and everyone uses this garbage now. its incredible.

i ordered new porcellan dishes. to not hav any smell.. and the dish smells... i thought i was getting crazy that i now can smell porcellan. was attributing it to my poor condition or chemical sensibilities or whatever.
after a lot of dish washing the smell somehow disappeared... guess i wasnt crazy after all.

in the EU they did found chemicals in young children after the covid pandemic which werent there before. at the same time during the pandemic a lot of delivery chains changed where they replaced suppliers with cheap chinese suppliers.
if you ask me now, if there was some conspiratory higher goal of the pandemic, i would say it was to change supply chains and manufacturing. introduce new laws to prevent freedom and democracy more, and maybe a bit to prevent a certain potus from happening again.

what we need is a counter revolution. everything locally and self produced... use the sheep wool and stuff again for clothing. make own food. make own products with local good materials.
those globalist corporate supply chains are rotten to the core.
stay away from any big corporation stuff. no matter what they promise and tell about their products, its a bit fucking lie and nobody is setting them straight. also how would you do it anyways? a german company is selling products "(fake)made in germany", they order the products from china and then print a logo on it so they can say its made in germany. if the product is toxic.. how is gonna punish the chinese company? the chinese gov? for sure not... what happens is that they close the company, use the workers and machines etc in a new company and here we go again.


annecdotally,
yesteryesterday i watched a episode of startrek tng. they found a civilization so high advanced they could just do wonderous things and lived extremly comfortable... but they needed to steel the human children from the starship "enterprise" because they couldnt breed themselves due to infertility. also somehow most of the planets animals died.
in the end, the source of all that comfort and life was that their energy source was polluting the planet and radiating them so they became impotent. the solution was to turn off the power source.
when they made those movies back in the 90s they alread knew what was coming... and yet we blindly drive full speed down the cliff.

 

[Artemisia]

^ very much relate to prev 2 comments
i have 1970 Life magazine where they were warning of environmental collapse. 54 years ago. no one listened.
i guess some of us realize the earth is our home and some don't, just see it as resources to be extracted and ecosystems to be exploited.

 

[linusbert]

i guess some of us realize the earth is our home and some don't, just see it as resources to be extracted and ecosystems to be exploited.

its always the same, those big mega corporations do those decisions.
i really have a hard time believing those who work and decide there are actual humans. how can they make decisions to bring out food which contains cancerous ingredients after independent research and a common agreement it shouldnt be in food, but then decide its better to buy in scientists and politicians and pretend it does not.
they eat that shit themselves, their families eat it themselves. WTF?! is money like nikotine? like cigarettes? is the greed so big that it disabled brain functions to do sane healthy decisions? whats going on.

 

[JasonPerth]

I have nothing but issues with all of the chronic health subs on reddit. The CFS one is run by a misandrist and there have been multiple purges of men over the years. The Long Covid one has some terrible application of its not ideal rules and its full of ME/CFS deniers and a lot of toxic positivity. Moderation is really important, if the wrong person is doing it the entire sub is corrupted by it. The ChronicIlness one seems strongly opposed to medical papers as sources and prefers its own anecdotes over and above peer reviewed science.

Twitters SARS2/Long Covid/ME communities are good but they take time to get into and Twitter is a dreadful place for any discussion. S4ME is often good to read for all its papers and discussions but I stopped participating as the moderators just edit your posts without any regard so I don't want to be giving them more stuff to push their own narratives out with in my name.

We have enough to be dealing with without so many power tripping dreadful people moderating out ill peoples discussions but that is the state of the world.

PS Tuna brine is OK, it works for POTs but honestly it has that tin can taste to it which just doesn't do it for me, pickle juice is better in that regard!

makes sense, i was also removed from R/cfs for basically saying facts on MECFS and telling people with recovery stories to keep in check. hurt someones feelings with facts= report. sadly my local MECFS facebook pages are the same, run by horrible modorates who will ban you for breaking one of the 20+ rules. there shoul only be 2 rules
1. no BS(brain retraining as an example)
2. Free speech with no hate

 

[JasonPerth]

We should all join and cause the moderator a headache by posting the truth. Also if in a different time zone post at night when the moderator is asleep,

we likely all have and have been blocked. leaving the only remaining members brainwashed Mild or severe patients clinging onto hope. a small handful who think they have ME but have "CFS" will get better , and the spreading of misinformation due to no 10000% biomarker will mean this will always continue on anonymous websites , especially if making money is involved, recently another twitter account was created by someone on the basis of the "CFS CRECOVERY" BS, yet in his wording he uses MECFS recovery, its the devils work

 

[JasonPerth]

If you have X, make a LIST, you can find it in your menu. Call it MECFS Denial group or something like that, then whenever you see an individual who is promoting BS, add them to the group, they wont be able to get out of it or stop seeing notifications unless they block you, if we all did this it would make them go crazy. They dont want to be the ones doing the blocking ( Besides Mr Cfsresearch who goes to the lengths of earth for 20 years )

 

[GhostGum]

I am curious, what are the dangers and issues surrounding brain retraining?

I think the whole 'brain retraining' subject is more complex than people realise, and goes beyond any one system, it can be as simple as doing pacing everyday, or a very simple activity regularly. But I think it can have a role to play for some people, in at least helping to improve quality of life or mental health.

Of course anyone pushing it or any specific program as 'the solution' is an idiot, it truly lacks perspective, but I also do not like completely throwing 'brain retraining' in the bin completely neither. Stuff like Feldenkrais has been vital to me making progress and still is as we speak, and maintaining good physical habits while avoiding bad ones. My best friend also did lightning process late last year, and as much as I was sceptical I can see some value in practices like this, and it has not fixed all her problems neither but can be a helpful tool in managing certain situations and added stresses. But I do not support the monetisation of such things, they are not complicated neither and probably should be widely available to anyone for free, they probably are in some form these days.

 

[GhostGum]

I did just realise after my post above that these programs can lead to gaslighting and patient blame sometimes, and have a history of such. I think this may have been improved to some extent, but not completely from the impression I got from my friend doing LP. And there definitely does still appear to be a mentality and pressure to maintain a certain mindset or beliefs, or at least to try to do so simply to try to improve state of mind.

This story about this reddit group though reminds me of my experience of the B12 deficiency group on FB, I quickly realised it was like some kind of weird cult, where they had these crazy guidelines and restrictions on what you could say. You were not even suppose to talk about the different forms or folate of B12, it was all folic acid and cyanocobalamin B12 or hit the road, was completely nuts. Thank God for this forum.

 

[cfs since 1998]

r/CFSScience and r/chronicfatigue are anti-brain retraining.

 

[antares4141]

What drew me to this thread is there are a couple of youtube channels that push this brain retraining scam. Two I watched were "@raelanagle", and "cfs recovery". I am angry at myself for watching them to try to figure out what their deal is. What is perplexing is they have lots of "recovery stories" so much so that it has me questioning are these "recoveries" plants?

I suspect there are those that never had CFS/ME. IE some peoples symptoms linger for months after covid so when they finally get better they attribute it to brain training.

I find it hard to believe that there is a constant source of people willing to throw away their precious financial resources on this BS let alone their time and energy.

The marketing on the two channels I looked at were impressive. Very slick former CFS sufferers recovered and now they are "helping others" for a fee of course.

You listen to the slick brain retraining marketers interview their "recovered patients" and their is nothing substantive on what exactly they did other than avert negative thoughts maybe. Total waste of time trying to figure out what they did which is what pulls in viewers of course. No you have to sign up for the course if you want that. And of course if you do you will find out something ridiculously stupid like the story of Xenu. Only then do you find out what a sucker you have been.

But will you come out of the closet against the cult or will you remain silent cause you don't want to admit you have been scammed, or maybe you are in denial that you have been scammed so you double down in defending the nonsense? Maybe you want to start your own brain retraining scam so you speak glowingly about it?