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

[JasonPerth]

Stay away from r/cfsme & r/mecfs

It's full of misinformation & harmful treatments. (Like brain retraining)(CBT)

The moderator deletes all comments negative about his/her beliefs so you will only find positive one sided opinions. This is what brain retraining pages do. Remove anything negative about their programs to make you think it works for ME/CFS

You arnt even allowed to question.

Its talks about recovery and gives advice like “what brain retraining course you should take”

This is false hope and its pathetic that a moderator using cfsme & mecfs as a page title is spreading this misinformation when they should be educating people about the dangers & issues surrounding brain training.

Edit: R/Mecfs has the same moderators and this applies to that page aswell.
What a shame. The sub named after our illness has moderators backing this shit.

Its horrible that anyone who is new to Mecfs that uses reddit will no doubt stumble upon the advice of this moderator and potentially deteriorate due to the one sided pseudoscience opinion and propaganda.

 

[Wishful]

Our governments set up laws and regulations that prevent us from trying drugs that might help us, yet doesn't place any restrictions on this sort of harmful misinformation?

 

[Viala]

Our governments set up laws and regulations that prevent us from trying drugs that might help us, yet doesn't place any restrictions on this sort of harmful misinformation?

They probably won't see it as harmful, on the contrary, it reinforces a notion that CFS is some kind of a psychological problem. I wouldn't be surprised if government itself or insurance companies were behind it.

 

[JasonPerth]

They probably won't see it as harmful, on the contrary, it reinforces a notion that CFS is some kind of a psychological problem. I wouldn't be surprised if government itself or insurance companies were behind it.

There is also a twitter handle called Cfs_research. And they just push people into brain retraining for a cure and only show infomation about FND on the profile.

So people would click on that profile hoping its an official cfs research page and only be shown propaganda to Brain Retraining.
The moment you call it out your deleted and blocked

 

[Hip]

Stay away from r/cfsme & r/mecfs

It's full of misinformation & harmful treatments. (Like brain retraining)(CBT)

Those two Reddit sub-forums are run by the notorious promoter of the psychosomatic view of ME/CFS, David Jameson. He operates under many user names:

Reddit account:
https://www.reddit.com/user/swartz1983/

Reddit ME/CFS sub-forums he runs:
https://www.reddit.com/r/cfsme/
https://www.reddit.com/r/mecfs/

Twitter account:
https://twitter.com/cfs_research

On Wikipedia his username is Sciencewatcher, and you can see by his many contributions to Wikipedia that he tries to psychologise many diseases, not just ME/CFS (though ME/CFS is his main focus).

His website is here, and his book is here.



Jameson is a real fanatic and extremist believer that ME/CFS is "all in the mind". Not only does he push psychosomatic / somatoform views of ME/CFS, but he also will criticise any biomedical research. For example, he will always criticise the idea that viruses are involved in ME/CFS.

 

[linusbert]

what a

Spoiler

twat

.

you may try to contact reddit company and explain situation to them that a person is hijacking a disease to push his profen harmful methods onto people - demanding reddit to make him rename his reddit to something non cfs/me related, like r/burnout or r/brainretraining.

 

[hapl808]

Jameson is a real fanatic and extremist believer that ME/CFS is "all in the mind". Not only does he push psychosomatic / somatoform views of ME/CFS, but he also will criticise any biomedical research. For example, he will always criticise the idea that viruses are involved in ME/CFS.

Holy crap. He has 5,000 edits. You can tell his psychological approach doesn't work, because if it did he wouldn't be such a nutjob on a crusade to tell everyone they just need to 'walk it off'. I'm sure all the Long Covid people will be happy to find out the BS Lightning Process will cure all of them.

I don't always wish harm and misfortune on others, but when I do…

 

[Judee]

I wouldn't be surprised if government itself or insurance companies were behind it.

I've also considered that the likes of Trudy Chalders, Simon Wesley, et al...might likely be as well.

So people would click on that profile hoping its an official cfs research page and only be shown propaganda to Brain Retraining.
The moment you call it out your deleted and blocked

I'm sad for those being misled into their pit of lies.

Jameson is a real fanatic and extremist believer that ME/CFS is "all in the mind". Not only does he push psychosomatic / somatoform views of ME/CFS, but he also will criticise any biomedical research. For example, he will always criticise the idea that viruses are involved in ME/CFS.

Here's the thing though, they are just heaping up more and more proof of legal liability against themselves because eventually we WILL have a biomarker and when that happens, people will start to sue them for damages esp because there IS enough biological proof now to show that something physical is truly wrong with us...things such as low NK function. They'll be without excuse for pushing these things on us when they know it's harmful...esp since we've been telling them so all along.

I don't always wish harm and misfortune on others, but when I do…

My previous comment is how I comfort myself regarding all this. They are digging a pit for us right now but eventually they'll be the ones to fall into it.

 

[Judee]

you may try to contact reddit company and explain situation to them that a person is hijacking a disease to push his profen harmful methods onto people - demanding reddit to make him rename his reddit to something non cfs/me related, like r/burnout or r/brainretraining.

I agree with this and also that if OP or another user here is techy, to start another similarly named group in an attempt to try to divert some of the ME/CFS patients off in a better direction than the choices they're seeing there now. Maybe a good name for a new truthful group would be r/therealMECFSgroup

Doing both steps would be even better.

 

[JasonPerth]

Those two Reddit sub-forums are run by the notorious promoter of the psychosomatic view of ME/CFS, David Jameson. He operates under many user names:

Reddit account: https://www.reddit.com/user/swartz1983/

Twitter account: https://twitter.com/cfs_research

On Wikipedia his username is Sciencewatcher, and you can see by his many contributions to Wikipedia that he tries to psychologise many diseases, not just ME/CFS (though ME/CFS is his main focus).

His website is here, and his book is here.



Jameson is a real fanatic and extremist believer that ME/CFS is "all in the mind". Not only does he push psychosomatic / somatoform views of ME/CFS, but he also will criticise any biomedical research. For example, he will always criticise the idea that viruses are involved in ME/CFS.

Wow
Are they seriously the same person. What a coincidence that i ran into both on the same day…

Id love to share this, is this 100% fact???

How did you link the name with the anonymous accounts?

 

[JasonPerth]

Is

what a

Spoiler

twat

.

you may try to contact reddit company and explain situation to them that a person is hijacking a disease to push his profen harmful methods onto people - demanding reddit to make him rename his reddit to something non cfs/me related, like r/burnout or r/brainretraining.

someone else able to do this with the above infomation?
I already did a report but just based off my personal experience and not the above info!

 

[JasonPerth]

G

I agree with this and also that if OP or another user here is techy, to start another similarly named group in an attempt to try to divert some of the ME/CFS patients off in a better direction than the choices they're seeing there now. Maybe a good name for a new truthful group would be r/therealMECFSgroup

Doing both steps would be even better.

Great idea. Im tempted to do it and ill be blocking and banning only one user

 

[JasonPerth]

Atleast i wont be told to drink juice to cure MECFS anymore.

 

[JasonPerth]

Hi all.

I have put all this infomation on the r/cfs subreddit to warn everyone.
Feel free to chip in and promote this.
Im more then happy to not be anonymous. All i care about is MECFS patients like me and you being fairly treated.

https://reddit.com/r/cfs/s/moKIAa08dT

I do wonder if this individual is on this forum

 

[Viala]

This comment here, they discovered how to cure CFS:
'It's a special kind of CBT developed for ME/CFS that wants to teach people to ignore their body's warning signs and achieve identity conversion of the patient so they no longer identify as having an illness.'

You're no longer a CFS patient if you do not identify as one, it's so simple. And if you still do, you must have done something wrong, obviously. A lot of doctors and government medical officials have similar approach, you're either hypochondriac and falsly believe you have CFS, or you're doing something wrong when GET/CBT fails, so you're always wrong and they are always right.

 

[JasonPerth]

This comment here, they discovered how to cure CFS:
'It's a special kind of CBT developed for ME/CFS that wants to teach people to ignore their body's warning signs and achieve identity conversion of the patient so they no longer identify as having an illness.'

You're no longer a CFS patient if you do not identify as one, it's so simple. And if you still do, you must have done something wrong, obviously. A lot of doctors and government medical officials have similar approach, you're either hypochondriac and falsly believe you have CFS, or you're doing something wrong when GET/CBT fails, so you're always wrong and they are always right.

Sounds simular to naturopaths ans holistic people when their “cure” protocols dont work.
Blame me on diet and sleep and not the fact that they have used me. (Even when my diet is as good as it can be and sleep cant be controlled)

 

[Viala]

Sounds simular to naturopaths ans holistic people when their “cure” protocols dont work.
Blame me on diet and sleep and not the fact that they have used me. (Even when my diet is as good as it can be and sleep cant be controlled)

Oh, it's everywhere. A lot of diet communities have been set this way for example, if a diet doesn't work it is often assumed that the person must have done something wrong. Instead of getting help, the person is being shamed away. Or banned.

If someone takes the pill and it's not working as it was said it will, well they must have done something wrong and they cannot listen to anyone else, because these other people outside of the inner circle must be lying and they don't know the truth that only insiders know. That's how most of the doctors think lol.

It is a cult indeed, especially when they use reframing and give name to their followers to separate them from the herd. It gives a sense of identity but it comes at a high price. Unfortunately people are stuck in this mode because most don't want to admit that they made a mistake, especially when they walked the path for a long time or paid a lot for it.

 

[JasonPerth]

C

Oh, it's everywhere. A lot of diet communities have been set this way for example, if a diet doesn't work it is often assumed that the person must have done something wrong. Instead of getting help, the person is being shamed away. Or banned.

If someone takes the pill and it's not working as it was said it will, well they must have done something wrong and they cannot listen to anyone else, because these other people outside of the inner circle must be lying and they don't know the truth that only insiders know. That's how most of the doctors think lol.

It is a cult indeed, especially when they use reframing and give name to their followers to separate them from the herd. It gives a sense of an identity but it comes at a high price. Unfortunately people are stuck in this mode because most don't want to admit that they made a mistake, especially when they walked the path for a long time or paid a lot for it.

Correct. I commented on Medical Mediums instagram post claiming to cure Chronic Fatigue Syndrome and spoke about MECFS and how dangerous it is to claim what they are claiming, and as expected, many many Health and Fitness advocates of the book attacked me and told me things like “well doctors dont know any better” and “it cured me” when they are completely bias and promoting the book and their own work from home pages.

 

[LINE]

Oh, it's everywhere. A lot of diet communities have been set this way for example, if a diet doesn't work it is often assumed that the person must have done something wrong. Instead of getting help, the person is being shamed away. Or banned.

If someone takes the pill and it's not working as it was said it will, well they must have done something wrong and they cannot listen to anyone else, because these other people outside of the inner circle must be lying and they don't know the truth that only insiders know. That's how most of the doctors think lol.

It is a cult indeed, especially when they use reframing and give name to their followers to separate them from the herd. It gives a sense of identity but it comes at a high price. Unfortunately, people are stuck in this mode because most don't want to admit that they made a mistake, especially when they walked the path for a long time or paid a lot for it.

I knew a woman who did these radical methods and it almost ended up killing here. The "advisor" is someone I knew who was a guru follower. The more the guru spoke, the more the 'advisor' believed him or her. Of course, the advisor had all the answers.

He advised the woman to do a prolonged juice fast (months), just juice. She complained that she was getting worse, so she was advised to continue, not to stop. She received the typical blame game. Finally, after her skin began to peel, and her rapid decline, she abandoned and returned to eating animal protein and "miraculously" got better much to the dismay of the advisor. Too bad the advisor did not know about the necessity of protein in the body.

If I might add my observations: My diet is modified to identify and avoid foods that trigger immune reactions, I feel that this is overlooked and has the most help.

 

[Rufous McKinney]

Atleast i wont be told to drink juice to cure MECFS anymore.

I"m drinking tuna water right now, and I swear it's going to cure me!~

(tuna, as in the fruits of a cactus)