Is neural/limbic retraining (DNRS) a treatment for ME/CFS or not?

[GlassCannonLife]

I know I shouldn't ask, but has anyone got a link to download the DNRS program ? I'd be really interested in trying this, but I absolutely cannot pay 350$ right now. I don't understand why it's not possible to pay in several times on their website... I'd really want to try it and honestly I'd give them my next paycheck if I can go in remission thanks to it.

Not sure if I'm allowed to post this on here (? Mods please remove if not!) but I made it in 2020 based on the subtitle files that have been linked here for years without having the links removed or being taken down.. So maybe it's ok?

Some of the lines repeat twice as they spanned across multiple time points, sorry about that but I didn't want to waste the energy to fix it. It's a transcript of the DVD series.

 

[YippeeKi YOW !!]

I know Ana Harris, a mold avoider who had me/cfs (past tense bc it's in remission from mold avoidance and treatments aimed at toxicity, NOT from psych treatments ), said that dnrs harmed her bc it encouraged her to brainwash herself into ignoring important intuitive signs of mold exposure harming her.

I see your point. The Gupta Program and that reeking pile, The Lightening Process and one other I cant think of right now work on that premise, which is convenient for the push ..... uh sellers of these packets of ghost breath because if it doesnt work, it's all your fault. I'm guessing that somewhere in the purchase agreement the fact that you culdnt ake it wor will nullify the promised return policy

I was lumping all of that under the stealing your confidence and then stealing your hope headings. A little fatigued today, not thinking really clearly.

its like some form of self brainwashing where you convince yourself to ignore threat responses sent by the body or brain.

Yeah, cause we all know how well that works for dementia, or cancer, or a broken arm.

I guess you just have to clap harder for Tinkerbell to really make it work.

This could make someone crash with PEM bc of ignoring warning signs, or expose themselves themselves toxicity needlessly.

Quite possibly But that would be a tough prove.

Anything that involves tinkering with the mind can have side 3ffects. But I think dnrs is worse than the average psych intervention or meditation in the frequency

I agree. FIddling with the brai and CNS is very risky business, but we've becoe inured to it thru decades of feel-goods like Prozac, etc. Tinkering with our brains is something we let dermatologists do now.

I'd bet there are more stories like Ana. It's possible it's even killed people.

In a somewhat indirect way, yes, it very well could have. Again a tough prove, but it just makes sense. Ignoring well-documented signals from your body that it's had enough is also pretty well documented as to its general outcome.

 

[YippeeKi YOW !!]

@ashram
Check out @GlassCannonLife 's post to you, just above here .... it sounds like your prayers ay have been answered.

Will you check back and let us now how it goes? Or at least how you're doing?

@GlassCannonLife .... very thoughty of you !!!! Too drained and dragging to check it out, but either way, it's a kindness...

 

[wabi-sabi]

Quite possibly But that would be a tough prove.

I think this would be a fascinating research project though! It's an ideal case study for how exeercise/pushing thorugh and ignoring limits harms us.

I'm too brain dead today, but if you got together some good outcome measures (both subjective and objective) of PEM, then you could measure PEM happening in people after they had done DNRS, lightneing process, or whatever. My vindictive little self would like to see this happen to the lightening people.

Dr Alain Moreau in that last OMF update was talking about measuring miRNAs in PEM. Juust give his test to the DNRS participants...

 

[frozenborderline]

I think this would be a fascinating research project though! It's an ideal case study for how exeercise/pushing thorugh and ignoring limits harms us.

I'm too brain dead today, but if you got together some good outcome measures (both subjective and objective) of PEM, then you could measure PEM happening in people after they had done DNRS, lightneing process, or whatever. My vindictive little self would like to see this happen to the lightening people.

Dr Alain Moreau in that last OMF update was talking about measuring miRNAs in PEM. Juust give his test to the DNRS participants...

Yeah you don't have to prove causality beyond a doubt. Basic statistical view of stuff always says there's degrees of causality you never reach some ceetainty about it.

Just starting to investigate if deaths are higher in people that have had that treatment would be nice. But I imagine the dnrs sellers and some who run the group like many cults are not very forthcoming about negative experiences

 

[YippeeKi YOW !!]

...

 

[ashram]

Not sure if I'm allowed to post this on here (? Mods please remove if not!) but I made it in 2020 based on the subtitle files that have been linked here for years without having the links removed or being taken down.. So maybe it's ok?

Some of the lines repeat twice as they spanned across multiple time points, sorry about that but I didn't want to waste the energy to fix it. It's a transcript of the DVD series.

Thanks a lot, that's very nice of you !! I'm glad !

@ashram
Check out @GlassCannonLife 's post to you, just above here .... it sounds like your prayers ay have been answered.

Will you check back and let us now how it goes? Or at least how you're doing?

@GlassCannonLife .... very thoughty of you !!!! Too drained and dragging to check it out, but either way, it's a kindness...

Thank you for your advice, and I'll definitely come back and tell you how it goes.
By the way I've been lurking on this forum for a long time and I really like your profile picture

 

[YippeeKi YOW !!]

Thank you for your advice, and I'll definitely come back and tell you how it goes.

Please please do.

Sometimes our system or unconscious or guardian spirit or The Great Hairy Thunderer or whatever calls us to something that defies logic, and that seems to be the case here. Not checking it out would leave you wondering if you'd ignored something that could have done good, and the doubt could be crippling. So in that regard, I agree with @xena .... better to try it out and put all doubts to rest, or possibly even get a boost from it.

But it wont be the heal-all that all of us pray for. Nonetheless, I'm a great believer in the 10%, something that my husband, DB, taught me to respect. So if this gives that little extra that helps you move along to the next 10%, so much the better.

By the way I've been lurking on this forum for a long time and I really like your profile picture

Oh, thank you !! I thought that it conveyed that frazzled "Fine, fine, fine, everything's just fine" thing that we all go thru at the start of this before we descend into hell ...

Wishing you the best in your experiment, and again, please don't forget to update us....

 

[frozenborderline]

https://anaharriswrites.com/my-brain-retraining-story/
I urge people curious about dnrs to read this. By the way, I don't know if she's updated her blog about this but Ana, who was harmed by dnrs, was helped by mold avoidance and detoxification treatments to the point of being able to lower reactivity and go In normal buildings, work on dance again which she had abandoned previously due to PEM, and be all but fully recovered. Very close to it anyway.

 

[xena]

Thanks a lot, that's very nice of you !! I'm glad !



Thank you for your advice, and I'll definitely come back and tell you how it goes.
By the way I've been lurking on this forum for a long time and I really like your profile picture

Feel free to PM me if you want to get on a call about how to implement this.

i'd also strongly recommend "pain free you" on youtube to help get the concepts down. but don't need to take his ideas or DNRS' as "the one true truth". just use what is helpful, think flexibly and ignore what doesn't resonate or work for you.

nervous system healing and medical treatment aren't exclusive paths at all. some people may benefit more from mind-body stuff and other may need more of other treatments.

like i personally use both.

 

[xena]

Feel free to PM me if you want to get on a call about how to implement this.

i'd also strongly recommend "pain free you" on youtube to help get the concepts down. but don't need to take his ideas or DNRS' as "the one true truth". just use what is helpful, think flexibly and ignore what doesn't resonate or work for you.

nervous system healing and medical treatment aren't exclusive paths at all. some people may benefit more from mind-body stuff and other may need more of other treatments.

like i personally use both.

i think Dan from ANS rewire has one of the best explanations. neil nathan's work on the CDR is also on point. cell danger response is turned on when we are in a freeze state. we shift both through meds/herbs and through nervous system level practices.

also- if DNRS isn't working or working well enough alone, somatic trauma healing is very important.

 

[frozenborderline]

cell danger response is turned on when we are in a freeze state. we shift both through meds/herbs and through nervous system level practices.

The cell danger response is also turned on by chemical and infectious threats that aren't necessarily resolved.

And I'm not sure how advanced the science is on this. Naviaux has recently started characterizing the CDR it seems premature and opportunistic to use his work and idea to support dnrs.

 

[frozenborderline]

Ethically, one problem with dnrs is how Annie hopper used Jen Breas work to try and promote DNRS with Jens fame , despite Jen being very against that kind of thing. Jen was incensed rightly.

How is that remotely ethical? And if you have to resort to those tactics to sell your product maybe your product sucks.

I realize Annie hopper isn't the only dnrs person but it basically all seems to work like this , like an MLM or cult program ... no transparency, promising the moon with no evidence, using dishonest marketing tactics , trying to psychoanalyze people who are failed by it and tell them they somehow didn't do the program right bc the program itself couldn't be wrong ...

 

[frozenborderline]

Here's the Annie hopper stuff

 

[xena]

The cell danger response is also turned on by chemical and infectious threats that aren't necessarily resolved.

And I'm not sure how advanced the science is on this. Naviaux has recently started characterizing the CDR it seems premature and opportunistic to use his work and idea to support dnrs.

Yes - why is why i suggest people don't neglect other medical treatment.

Neil Nathan recommends DNRS in his book Toxic which Robert Naviaux wrote the introduction to.

I don't care about "supporting" DNRS - nor do I actually recommend it to most people- but some people are able to benefit from it- as I was. And yes, it's not an appropriate or sufficient thing for most people! But for some- it is. it's not a black and white thing.

 

[frozenborderline]

- why is why i suggest people don't neglect other medical treatment.

Neil Nathan recommends DNRS in his book Toxic which Robert Naviaux wrote the introduction to.

I don't care about "supporting" DNRS - nor do I actually recommend it to most people- but some people are able to benefit from it- as I was. And yes, it's not an appropriate or sufficient thing for most people! But for some- it is. it's not a black and white thing.

I know some people who have a similar perspective--supporting physical treatments and also dnrs to calm down whatever psych issues are there. And sure, that's reasonable. It seems to also require a lot of caution because many dnrs teachers and programs seem to urge people to understand things like PEM and reactions to toxins not as real physical things but as something u need to train ur "limbic system" out of overreacting to. I've never seen any scientific evidence of the limbic system part btw

So I'm not coming after you, that sounds somewhat responsible but the program in general is not engineered for thag kind of nuance and i have seen it harm people.
I also don't think of Neil Nathan as necessarily an authority on this. He attacks mold avoiders for no good reason, seeing it as extreme. He extrapolates a lot from very little real scientific evidence and promotes things like mycotoxin urine tests that don't have evidence behind them

Lisa Petrison and Erik Johnson have critiqued neils position on this quite well. This is a case of the laypeople being more well informed than the doctors in the field even if the doctors get paid a lot more.

Citizen science ftw

And if I'm wrong about dnrs encouraging people to ignore physical symptoms--ehich btw , I got this from someone who has directly paid for and done the dnrs program with an open mind--it would be hard for me me find out as there's not much opacity and you literally have to pay a ton to get the program.

It's not the idea of using any sort of psych treatment treatment help with some of the symptoms that bothers me. I support supportive therapy for dealing with stress and grief of illness, I tbink meditation is great. What is harmful about dnrs stuff is it seems like a highly monetized cult like thing focusing on a treatment that is not particularly evidence based and which has harmed multiple people, and this criticism is never seemingly addressed by the people who make and market this stuff.

I'm not criticizing you I'm criticizing the program. And like I said they also do heinous stuff ethically like using people who are against everything they stand for like Jen brea and Erik Johnson or Lisa petrison to market their stuff !

Anyway , I encourage everyone to read Ana's criticism of the program. If anything she's too kind in it. She mentions having friends who were helped by it seemingly and being fairly open minded to it but it still harming her.

 

[frozenborderline]

https://anaharriswrites.com/my-brain-retraining-story/
I urge people curious about dnrs to read this. By the way, I don't know if she's updated her blog about this but Ana, who was harmed by dnrs, was helped by mold avoidance and detoxification treatments to the point of being able to lower reactivity and go In normal buildings, work on dance again which she had abandoned previously due to PEM, and be all but fully recovered. Very close to it anyway.

"Brett gently reminded me that we didn’t need to agree with Gupta’s theory of what causes the illness in order to try the exercises. The program might still be a helpful piece of the puzzle even if he was wrong about a lot of things.

I dragged my feet but kept going. It bothered me that Gupta was not a doctor, yet he was claiming to have a cure. He went so far as to promise 100% recovery to those who stick with the program. I had no problem learning about treatment options from other sufferers but this seemed a bit arrogant. Why wasn’t he more upfront about the fact that he had no medical background? How could he make such confident claims about an illness that is notoriously difficult to treat?

Besides, some of the things he said about symptoms being nothing more than sensations that we assign meanings to, seemed incompatible with my worldview. As a Christian, I believe that truth exists and that suffering and evil are real and not illusions. There is a way that things ought to be and function. The “sensations” we feel when things are not functioning the way God intended are not neutral or meaningless. They are reflections of reality. They are painful because they are pointing to real physical brokenness, not because we decided to interpret them as negative. Still, I tried to give Gupta a chance.

When I got to the part where he starts teaching the exercises, the whole thing started to feel like an elaborate placebo effect. The most important exercise is based on neuro-linguistic programming (NLP). You interrupt thoughts about your symptoms with hand motions and phrases and then visualize yourself 100% healthy. There was also a meditation component where you concentrate on your breathing for 20 minutes each day. Plus another meditation where you focus all your attention on whatever symptom you’re experiencing and say “soften and flow” until the feeling melts away.

I felt ridiculous doing the exercises but something shifted in me when I remembered the biblical story of Naaman. Naaman was the commander of the Syrian army and a leper. He came to Israel because he was told that the prophet Elisha could heal him. Elisha sent word that he should wash in the Jordan River seven times and then he would be healed. Naaman was enraged when he received the message and replied, “Behold, I thought that he would surely come out to me and stand and call upon the name of the LORD his God, and wave his hand over the place and cure the leper. Are not Abana and Pharpar, the rivers of Damascus, better than all the waters of Israel? Could I not wash in them and be clean?” (2 Kings 5:11)"...
So she's open to it at first ... but even so the idea of promising 100 percent cure is sketchy. If people who were doctors did this for surgeries or for drugs it would be considered a dangerous and monstrous ethical violation. I'll attach screenshots for some of the more problematic parts too

 

[frozenborderline]

Neil Nathan recommends DNRS in his book Toxic which Robert Naviaux wrote the introduction to

Yes, I already have posted on here btw about how disappointed I was that naviaux lent his credibility and name to a book which has many unscientific parts including the brain retraining stuff. It's somewhere else on the forum. This is not a contradiction in what I said. Naviaux is a good scientists and I agree with his approach to activism around environmental toxins, but I think it's foolish of him to start promoting a book involving these treatments without even having that much science to even understand the cell danger response let alone treat it. Many good scientists also promote things that are foolish or wrong. Linus Pauling was a nobel prize winner but became fixated on the idea megadoses of vitamin c could cure cancer and died with a mixed legacy bc of that. Naviaux is brilliant. Dnrs is promoted in a way that is unethical , beyond the issues with its content. Good doctors should acknowledge uncertainty and their limitations. Telling people about 100 percent cure rate if they follow this neurolinguistic programming program, would be unethical even if it wasn't hokum. I've never heard of an ME/CFS doc saying ivig will be 100 percent cure or mestinon or anything like that! Or even ampligen, which certainly has more evidence for it than this. If you take some of tbe basic ideas like meditation or ways for calming down the brain and apply them devoid of promises like that and the whole structure of the program which tells you to ignore the physical problems and toxins ... then yeah I could see it maybe being helpful. And a doctor I know who promotes some forms of psych treatment related to brain retraining says as much... he says unfortunately the Gupta program and hoppers program don't teach people about the physiological treatments like mold avoidance and detox u need to do before these treatments like brain retraining can work , and in fact those programs discourage these things. And while I respect this doctor somewhat I was dumbfounded bc he was basically saying "if this program was totally totally different and threw out a lot of the core ideas it could be used well in some subset of patients ". Which yeah, maybe I agree with, but as far as I know there's no brain retraining program that does that ... people would have to build it themselves. And vulnerable people are prone to being damaged by misinformation so I don't think this program should be encouraged as it is. I don't see what's wrong with therapy or good old fashioned meditation...

 

[Wayne]

just use what is helpful, think flexibly and ignore what doesn't resonate or work for you.

Hi @xena -- Thanks for your astute comments on various posts of yours. I think what you said above is spot on. To me, it's somewhat similar to religion. Make sure when looking at a religion that it fits you, and not force yourself to fit it. Everybody and every situation is so unique, so there's no way one size fits all is ever going to be true.

That doesn't mean however that we have to discard a whole program if some parts of it don't resonate with us. Just take what fits, and leave the rest alone. It appears according to @frozenborderline, that this is not how the proponents (at least some of them), are presenting DNRS.

In fact, it appears some proponents are saying one size does fit all. That to me is unethical, and almost certain to lead to harm for some people--as has been reported. Thanks frozenborderline for making the effort to post your perspectives, which have been helpful and insightful.

 

[frozenborderline]

I don't quite have the energy yet for this, but this discussion has inspired me to unearth some connections that may make a very very interesting podcast episode.

Neurolinguistic programming is a big part of dnrs/brain retraining
But it also has an interesting history with use in cults for brainwashing.
For the connection btwn NLP and brain retraining, just take ana Harris word for it. She purchased and did the programs in good faith and extensively:

"I dragged my feet but kept going. It bothered me that Gupta was not a doctor, yet he was claiming to have a cure. He went so far as to promise 100% recovery to those who stick with the program. I had no problem learning about treatment options from other sufferers but this seemed a bit arrogant. Why wasn’t he more upfront about the fact that he had no medical background? How could he make such confident claims about an illness that is notoriously difficult to treat?

Besides, some of the things he said about symptoms being nothing more than sensations that we assign meanings to, seemed incompatible with my worldview. As a Christian, I believe that truth exists and that suffering and evil are real and not illusions. There is a way that things ought to be and function. The “sensations” we feel when things are not functioning the way God intended are not neutral or meaningless. They are reflections of reality. They are painful because they are pointing to real physical brokenness, not because we decided to interpret them as negative. Still, I tried to give Gupta a chance.

When I got to the part where he starts teaching the exercises, the whole thing started to feel like an elaborate placebo effect. The most important exercise is based on neuro-linguistic programming (NLP). You interrupt thoughts about your symptoms with hand motions and phrases and then visualize yourself 100% healthy. There was also a meditation component where you concentrate on your breathing for 20 minutes each day. Plus another meditation where you focus all your attention on whatever symptom you’re experiencing and say “soften and flow” until the feeling melts away."
https://anaharriswrites.com/my-brain-retraining-story/
So when I described this as brainwashing, I wasn't just being hyperbolic
I'd be interested in knowing how deep this rabbit hole goes. Does the lightning process use Neurolinguistic programming too?
"In the early 1960s, numerous cults using techniques such as group hypnosis and neuro-linguistic programming, which manipulates people through subtle language tricks, subliminal messages and body language tricks, began to emerge in America. Ms Samways says these methods are now used by nearly all cults, personal development and even fortune tellers and white witches.
"Some groups or self-styled gurus have just copied things that they've seen to be successful, but others have studied in a very systematic way. A lot are doing courses, in things like neuro-linguistic programming, which is widely used in marketing and sales to find out how to tap into a person and access that person's beliefs. That's a very deliberate, sophisticated process to use and their motivation is money and power."
https://culteducation.com/group/1289-general-information/8530-inside-the-cults-of-mind-control.html

There's even more juicy stuff about NLP here : http://donaldclarkplanb.blogspot.com/2006/11/nlp-trainings-shameful-fraudulent-cult.html?m=1
Additionally if you read the comments you will see what a cult this is bc almost all the comments ignore the scientific aspect and comment on the personality or other ad hominems, of the blogger. They don't present evidence beyond vague anecdotes, they just attack him for being negative and make ad hominems. And there are droves of these people

Furthermore , the sinister cult NXIVM which is more recent one than some of the ones referenced in the 70s and 80s, which conducted human trafficking/sex trafficking, used neurolinguistic programming. This is maybe one of the more fascinating parts. Because I have said brain retraining doesn't work, and how can it be effective at control kf it doesn't work? Well, what I mean is it's ineffective at its stated goal of healing people. It certainly seems good at some forms of brainwashing or temporarily fonvincing people they're better in the case of cfs, or brainwashing people into following cult leaders and breaking down their identity in the case of NXIVM and other cults
"Nancy Salzman was trained by Tad James in neuro-linguistic programming, or NLP. James was a protege of Richard Bandler, who modeled the practice off Milton Erickson the psychiatrist, who is considered one of the greatest minds in this area of healing. They modeled Erickson’s covert hypnotic style, but the problem with NLP is it’s amoral."
Full article here: https://www.vice.com/en/article/ywepkk/a-cult-expert-tells-us-why-the-nxivm-story-is-far-from-over