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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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

LINE

Senior Member
Messages
810
Location
USA
What's important though is that we don't know which system is the main culprit of a disease. It may be a psychological factor but it might as well be a physical factor, but with new diseases we cannot tell which one and assuming that it's mainly psychological can be quite dangerous.

That does seem to be an important point and certainly some gray area.

A friend swears that it was trauma that did it for her, for myself, a bad gut bug sent me spiraling. My Harvard teaching brother says that the role of environmental toxins are to blame in epigenetic shifting (he is a published researcher). I do find it interesting that toxins are seldom discussed in ME or autoimmune circles.
 
Messages
181
That does seem to be an important point and certainly some gray area.

A friend swears that it was trauma that did it for her, for myself, a bad gut bug sent me spiraling. My Harvard teaching brother says that the role of environmental toxins are to blame in epigenetic shifting (he is a published researcher). I do find it interesting that toxins are seldom discussed in ME or autoimmune circles.
I believe it can be any one of them. Diet, gut problems, trauma and severe stress, toxins, severe infections, they all can derail the body, the immune system, CNS, ... And that makes us succeptible for chronic diseases.
 

Carl

Senior Member
Messages
356
Location
United Kingdom
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.
What you say sound a lot like my experience of him.
The mod banned me because of what I said. I was busy trying to find something that I needed which was proving difficult to find and in the meantime he banned me. I didn't have time to reply to my post. I am not wasting me time on these people. They can rot for all I care. These people like their level of control and don't want anything to upset that.
 

hapl808

Senior Member
Messages
2,011
I would emphasize that some of these programs are scams to make money, so people should be aware that they need to choose carefully and be weary about what some authors of these programs promise.

Even the ones that aren't scams may be quite harmful or unhelpful. Or they might not be. That's what is challenging. Some people swear they recovered with GET. I don't think they're liars, but we don't know if ME/CFS is one disease or a hundred. We can't diagnose it definitively. So we have no idea for people who are 'healing' whether they actually healed, what caused their problems, etc.

Mind and body connection is always there and we cannot ignore it, it's just that we still don't know how to use it well to our advantage. We know about placebo and benefits of positive thinking, but it is difficult to 'placebo' our thinking so much that we heal ourselves.

We don't really know about placebo or the benefits of positive thinking. There's actually a lot of research that those ideas themselves may be incorrect. Often we don't know if it's the chicken or the egg.

Personally, I have found zero connection with the treatments I truly thought would help me versus the outcomes. I had the highest hopes for testosterone and HGH at one point, and testosterone was one of the most damaging things I tried and HGH was a dud with a lot of side effects.

When I was younger I tried hypnosis - it just didn't work on me at all. It seemed ludicrous, but I understand many people find benefits.

Recently I tried turning off wifi. I'd tried it in the past and found no benefit, but I think I was doing it at the wrong times (when I was actually further away from the router). I recently tried it again and was very surprised (and honestly really disappointed) that I found a very noticeable benefit.

In other words, my belief (and some research) shows that placebo or positive thinking only works for some people. My vague guess is that such things are more helpful for various psychological issues that may be comorbid and could worsen outcomes, thus addressing them can improve outcomes. Research has found that depression is associated with worse outcomes in both HIV and gunshot wounds, but they don't really know why that's the case (some theories that depression affects treatment compliance, other health stressors, self medication, etc).

Anyways, my rambling point is it's all complicated and I like a welcoming atmosphere even for things I disagree with or found harmful for me.
 

linusbert

Senior Member
Messages
1,066
Some people swear they recovered with GET. I don't think they're liars,
i think they are, even if not intentionally. they might have just misdiagnosed themselves and confused burnout with cfs.
cfs has one criteria which is defining... and somehow people do not get it right... in true cfs people get worse after exercise... its the one main defining criteria of this disease. if people do not have it, they do not have cfs.


i like the idea of creating a own reddit group, and many of us join and correct things. this will force reddit to act.
 

JasonPerth

Senior Member
Messages
124
Seeing as some people claim to get benefits, I think the warning could be, "While some have claimed benefits, others have said they found the programs unhelpful, expensive, difficult return policies, and somewhat cult-like in their guidelines and instructions." I'm always hesitant to just brand something as just a scam, because mainstream medicine would consider almost everything we discuss a 'scam' unless there's an FDA stamp on it. Personally I think DNRS, Medical Medium, and a few others are total BS, but to each their own.

Even GET is slippery. Some targeted PT when we have no PEM and a good baseline can be helpful, but that's not the same (in my mind) as GET that is designed to improve baseline or banish PEM by pushing through. The latter can lead to a permanent loss of function. For whatever faults, I thought Myhill had a good description of exercise by saying that you shouldn't do any until your symptoms are minimal with no exertion. Even then, she suggests something like one exercise per week, as opposed to the usual every-other-day, etc.

Anyways, my random thoughts. Just don't want any dogmatic views, even ones where I agree.
Unless those who claim great benifit test positive to this biomarker that is coming, its Bs.

Just like how the many doctors think we are bs.
 

JasonPerth

Senior Member
Messages
124
i think they are, even if not intentionally. they might have just misdiagnosed themselves and confused burnout with cfs.
cfs has one criteria which is defining... and somehow people do not get it right... in true cfs people get worse after exercise... its the one main defining criteria of this disease. if people do not have it, they do not have cfs.


i like the idea of creating a own reddit group, and many of us join and correct things. this will force reddit to act.
Correct, a diagnosis of ME is literally not recovering with exercise, gradual or not.
 

Rufous McKinney

Senior Member
Messages
13,197
says that the role of environmental toxins are to blame in epigenetic shifting (he is a published researcher). I do find it interesting that toxins are seldom discussed in ME or autoimmune circles.

I will remain convinced this is a key factor being IGNORED. Nobody will touch that topic.

Because you can' t live a healthy life, in a chemical soup. But chemical soup is what leads to Profit Margins.
 

Rufous McKinney

Senior Member
Messages
13,197
I recently tried it again and was very surprised (and honestly really disappointed) that I found a very noticeable benefit.

what did you do there? I'm on my laptop alot more now, and it's often on my lap and that has to stop. leaving me with options like What, exactly?
 

linusbert

Senior Member
Messages
1,066
what did you do there? I'm on my laptop alot more now, and it's often on my lap and that has to stop. leaving me with options like What, exactly?
you could get a faraday bag or blanket. those are shielding from electromagnetic radiation. so you can put the blanket between you and your laptop and you should be fine.
you might still get some WIFI... but for that just plug in a cable? :O)
or reduce transmission power.
what i did for my wifi router is to set transmission power to lowest.. so my router is only sending with 8% of power. that saves a lot of radiation. check your router settings, a lot provide this option.
and i still got full bars because router is just 3 meters away. if i could i would reduce it even further.
 

hapl808

Senior Member
Messages
2,011
you might still get some WIFI... but for that just plug in a cable? :O)
or reduce transmission power.
what i did for my wifi router is to set transmission power to lowest.. so my router is only sending with 8% of power. that saves a lot of radiation. check your router settings, a lot provide this option.
and i still got full bars because router is just 3 meters away. if i could i would reduce it even further.

Yeah, for me the biggest change was turning off wifi. I still get the neighbors of course, but not a router 6 feet away. I think I didn't notice before because I only turned it off at night and my bedroom is the room furthest from the router, so maybe it was less noticeable.

I'm on my laptop alot more now, and it's often on my lap and that has to stop. leaving me with options like What, exactly?

My laptop is my main computer and didn't have an ethernet port. I think I paid $10 for a USB ethernet adapter and just plug it straight into the router. If you're not near the router, then it gets a bit more complicated, but there are still options.
 

Stretched

Senior Member
Messages
705
Location
U.S. Atlanta
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.
Great work, as usual, @Hip.

I, too got banned there after I took exception to some knucklehead bating me into a confrontation then espousing false information. I complained to execs in San Francisco with documentation. I was told they don’t override moderator decisions on a local forum.

It’s a place where anything goes and ‘buyer beware’ should be the caution, maybe like a street corner.
 

wabi-sabi

Senior Member
Messages
1,450
Location
small town midwest
I, too got banned there after I took exception to some knucklehead bating me into a confrontation then espousing false information. I complained to execs in San Francisco with documentation. I was told they don’t override moderator decisions on a local forum.
Gosh! Sounds like the problems of social media in general.
 

linusbert

Senior Member
Messages
1,066
Gosh! Sounds like the problems of social media in general.
then they should mark it as false information or put on a clarification box like twitter X community notes does.

imagine someone would claim there were only 2 genders, or would say that the vaccine has side effects. that kind of response they would make there i'd expect also for the wrong cfs information.
 
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JasonPerth

Senior Member
Messages
124
Hey everyone
I had word that this account has been deleted on Reddit or Twitter, can anyone please confirm? Cheers
 

JasonPerth

Senior Member
Messages
124
I was told the below

“Hiya, I know you probably dislike this cfs_research even more than I do.
As I saw your comments.

I would like to let you know, he deleted his profile and all his comments on Reddit.

Pretty odd, But strangely satisfying”
 
Messages
70
I stay away from reddit now but still dig through for scraps of reports of symptoms from people desperately reaching out for help that put out unfiltered comments on what they are going through whether it is in line with the beliefs of the community or not. Reddit has this big issue on health subs where everyone MUST have the same presentations of everything and NOTHING can even ever be connected to it ever or be a new connection that hasn't been made before. Any observations against the dictated standards get you dog piled and censored into oblivion. I'm so done with the place. It's so sad to see people there suffering because it seems like suffering is all the mods and their white knights will let the users do save for trying the same things everyone else has tried over and over again that have never worked for anyone.
 

linusbert

Senior Member
Messages
1,066
I stay away from reddit now but still dig through for scraps of reports of symptoms from people desperately reaching out for help that put out unfiltered comments on what they are going through whether it is in line with the beliefs of the community or not. Reddit has this big issue on health subs where everyone MUST have the same presentations of everything and NOTHING can even ever be connected to it ever or be a new connection that hasn't been made before. Any observations against the dictated standards get you dog piled and censored into oblivion. I'm so done with the place. It's so sad to see people there suffering because it seems like suffering is all the mods and their white knights will let the users do save for trying the same things everyone else has tried over and over again that have never worked for anyone.
thats the new corporate fascism they roll out in all western countries now. youtube and other platforms have the same problem. everything not according to what their beliefs are will be censored. if they allow free speech like X tries they will be bombarded by bad press and regulations and owners will be targeted. its so sad.
this is the final nail in the westerns science coffin. you cant think, debate and therefore not progress...
its kinda like back in the day when the church prohibited people from talking about the world being round.