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

[mbunke]

Hi mbunke!
I would be interested in knowing what kind of exercises are you doing with the ANS rewire program.
Could you share any example?

I watched the 3 videos of Dan Neuffer.

I still have to dig deeper and try to compare this program with others like DNRS or Gupta.

I see that there is a book. Are there dvds too? How much does Dan Neuffer's program cost? I think the DNRS is quite expensive.

Did you have PEM? And if so, has it improved?

Sorry for so many questions and thank you for your kindness.

I'm severe and is really hard for me to imagine how this kind of programs can improve something so terrible like a bad PEM with the flu like feeling and the other stuff that goes with it.

In fact I'm afraid that even the programs could worsen the PEM if you are told to ignore the signals.

Thank you again,
A big hug!

Hello!

I completely understand the skepticism. I'm extremely analytical and about as skeptical as it gets. It took me over a year of hearing about this to finally give it a real look. But the more I looked at the science behind it, the more I felt like it made sense, even though it sounds too good to be true.

But the brain is an incredibly powerful thing. Consider how crippling PTSD can be, it can steal one's whole life from them, even though their conscious brain knows they are no longer in danger, their limbic brain is stuck in a "trauma loop," and they can't get out--not without help. If you've ever had a panic attack, you will probably understand the power the brain can have on your physical state very well. And these can come on in a split-second and be absolutely crippling.

Yes, of course I have PEM! At my worst I have been bed-bound and spoon-fed, only able to bathe every couple weeks and needing help when I did. I definitely have very bad malaise/flu-like feeling when I crash, and I get very bad nerve pain, which is one of the worst symptoms. I am still mostly housebound, only able to go out occasionally and for a short time. I only started neural retraining 2.5 months ago. The PEM has not improved noticeably yet, I only just started seeing results the past week or two with headaches and fibromyalgia pain going away. And my mood has improved. The lack of headaches has been most noticeable, and I still can barely believe it.

I totally understand your hesitation, but don't worry about being told to ignore the signals and push yourself. They will not ask you to do that (if they do, don't do it, and find another program). To de-condition yourself, you will start extremely slowly, and only move forward when you know your body is ready for it. For example, if you have trouble sitting up, you will start by picturing yourself sitting up in your head and when that invokes fear or worry, you will do the brain exercises. You will continue to do this day after day for short periods until you feel ready to sit up on your own, or maybe just sit with a pillow behind you. You will not do anything that's too much, we all know too well that doesn't work with ME/CFS.

There is a book, it's called CFS Unravelled, I highly recommend it! In fact, if you have an amazon account, I have the Kindle version, I can lend mine to you if you send me your email address! It will let you read it for 2 weeks.

The DNRS program is DVD's, which are somewhere around $250 USD I think. Dan Neuffer's program (ANS Rewire) is $276 USD. The DNRS program is better with helping you learn brain retraining technique, Dan's program is better for figuring out what other areas you might need to investigate alongside the brain retraining (like gut health, mitochondrial dysfunction, etc.) I'd say start with DNRS and if you get stuck, do Dan's. I know it's expensive, but I think it's worth it.

If you're able to read much, I found the full transcript of the DNRS program here.

Sorry for all the text, I'm more than happy to answer questions! My heart goes out to you, I'd encourage you to watch some of Dan Neuffer's and the DNRS testimonials of people that have made full recoveries on youtube. I know it's scary to open the door to hope, but I believe this is 100% real, and it's worth the leap of faith.

If anyone would like to join my Facebook group where we try to discuss root causes of CFS, please do!

 

[mbunke]

Hi mbunke!
I would be interested in knowing what kind of exercises are you doing with the ANS rewire program.
Could you share any example?

I watched the 3 videos of Dan Neuffer.

I still have to dig deeper and try to compare this program with others like DNRS or Gupta.

I see that there is a book. Are there dvds too? How much does Dan Neuffer's program cost? I think the DNRS is quite expensive.

Did you have PEM? And if so, has it improved?

Sorry for so many questions and thank you for your kindness.

I'm severe and is really hard for me to imagine how this kind of programs can improve something so terrible like a bad PEM with the flu like feeling and the other stuff that goes with it.

In fact I'm afraid that even the programs could worsen the PEM if you are told to ignore the signals.

Thank you again,
A big hug!

And I forgot to share the actual exercises! It's hard to explain concisely, but the basic idea is to get your brain out of the trauma loop by starting to associate symptoms and worry about crashing/other symptoms with positive things, which signals to your brain that you are no longer in danger. You can "trick" your brain into believing you're healthy by actually picturing yourself healthy, because your brain isn't very good at noticing the difference between what's "out there" and what you're imagining in your head. (Have you ever had a dream and wondered if it really happened later?)

I highly encourage you to check out the DNRS program to understand this more deeply, she will go into great detail about how the limbic brain works (which deals with fight or flight), but here is an example of what I say to myself when I experience symptoms or fear or symptoms:

If you don't believe it's real, why not just try it for a couple months? Just record yourself saying the above and play it back to yourself whenever you experience symptoms. See if anything happens!

 

[unicorn7]

I didn’t have any sensitivities other than exercise intolerance. Tried gupta for a year, didn’t work off course. Looking back, it’s easy to say it’s a scam. It’s pretty ridiculous actually but at that time I was so willing to believe there was an easy way out of this. I think everyone has to try something stupid like these “brain training” programs, so if you want to, pick the cheapest option

 

[Jyoti]

Thank you, @mbunke, for the full illustration of the kind of work you are doing.

Like many, I have been somewhat skeptical and very cautious about anything that smacks of 'its all in your head.' I spent a number of years when I first got sick believing it was something I could shift using techniques of my own, but similar to DNRS, etc. And...I got sicker.

It took a while for me to actually accept that my body was not working correctly and that some of my intervention and support had to be directly physiological. Now, after a number of years mining the shallow well of both allopathic and naturopathic medicines, I am contemplating a more structured approach to working with my limbic system and/or my ANS. They are definitely out of whack!

And my questions are ones that for the most part you have answered and I am grateful. I have had a viscerally bad response to DNRS as I have read about it. The materials (and the testimonials) do smack of snake oil and dangled miracles. The actual techniques seem to be closely held and the website kind of reminds me of weight loss programs that promise you the world (or 60 painless pounds lost in two weeks!) if you are foolish enough to pay them for it.

I've liked Dan Neuffer's videos--the free ones--including the fact that he provides useful info in them, not just a hook so you will buy. It also feels to me that since he had ME/CFS, his program is potentially useful to me. I do not have any strong sensitivities as adjunct to my CFS. Almost all who praise DNRS online seem to have one sort of debilitating sensitivity or another in addition to a central diagnosis.

You say it is worth going with DNRS first, ANS Rewire second. Can you elaborate a bit about this? I'd really appreciate it.

Thanks so much.

 

[mbunke]

Thank you, @mbunke, for the full illustration of the kind of work you are doing.

Like many, I have been somewhat skeptical and very cautious about anything that smacks of 'its all in your head.' I spent a number of years when I first got sick believing it was something I could shift using techniques of my own, but similar to DNRS, etc. And...I got sicker.

It took a while for me to actually accept that my body was not working correctly and that some of my intervention and support had to be directly physiological. Now, after a number of years mining the shallow well of both allopathic and naturopathic medicines, I am contemplating a more structured approach to working with my limbic system and/or my ANS. They are definitely out of whack!

And my questions are ones that for the most part you have answered and I am grateful. I have had a viscerally bad response to DNRS as I have read about it. The materials (and the testimonials) do smack of snake oil and dangled miracles. The actual techniques seem to be closely held and the website kind of reminds me of weight loss programs that promise you the world (or 60 painless pounds lost in two weeks!) if you are foolish enough to pay them for it.

I've liked Dan Neuffer's videos--the free ones--including the fact that he provides useful info in them, not just a hook so you will buy. It also feels to me that since he had ME/CFS, his program is potentially useful to me. I do not have any strong sensitivities as adjunct to my CFS. Almost all who praise DNRS online seem to have one sort of debilitating sensitivity or another in addition to a central diagnosis.

You say it is worth going with DNRS first, ANS Rewire second. Can you elaborate a bit about this? I'd really appreciate it.

Thanks so much.

You're welcome, and I really identify with what you said. That's why it took me so long to look into this stuff, I kept going to the DNRS website and thinking, 'Lol, right. okay.' It felt extremely insulting. I thought it was implying that CFS is all in the head. It's not, it's in the brain, it's like an acquired traumatic brain injury. But the brain is very plastic, so there is hope that you can rewire it! Stroke patients do this all the time.

The thing that tipped me over the edge a few months ago was having a phone call with one of my brother's professors (of philosophy, so he's the skeptical type, not a hippie weirdo). He had CFS for years and told me he had recently recovered 100%, gone back to work full-time, and didn't think he'd ever have symptoms again. He said he used DNRS. After talking to him for over an hour, I hung up the phone and cried my eyes out. I was so weary of people saying things that seemed to imply my illness was psychological. But then a couple days later I said, okay I'll at least look into this again, and I finally researched for real for the first time, and it all started to click.

It sounds like you already feel in your gut that you have something wrong with your limbic system/ANS, and so I think if you do your research, you will start to agree with this theory too. The Gupta Program actually has some really good explanations in his free intro videos too, I'll post those below! I have not done his full program.

The reason I said to start with DNRS and if you need extra help do ANS Rewire is because I think Annie Hopper (DNRS creator) does a much better job at explaining how to do the actual brain training exercises to help de-condition your limbic system, and these exercises are the heart and soul of rewiring. Everything else should be peripheral.

Dan Neuffer however, doesn't spend much time on the actual Rewiring techniques and when he does, they're not nearly as good or clear as Annie Hopper's. But he spends a ton of time talking about other techniques to aid you in your recovery, to help make the neural retraining go faster, like if you need some extra help healing your gut or vitamin deficiencies, etc. Even though these are not the core dysfunction, giving them an extra boost for healing will take stress off your system as a whole, and make it easier for you to have success with the brain retraining. I think many or most people with CFS will need this extra help.

However, if you have the energy to read through this DNRS transcript online rather than buying the DVD's, then you can just use that to understand DNRS and only buy Dan's program. That's what I'm actually doing, I bought his because, like you said, he had CFS himself, and Annie Hopper did not.

And again, like you, I don't have any sensitivities beyond exertion, which is also why I didn't identify with DNRS at first. I also had a similar mindset at the outset, going from "I can fix this with my own techniques" to "something must be very physiologically wrong." I'm so sorry you got sicker. I hope you are willing to possibly give it another try, but do not push yourself, only expose yourself to things when you know you're ready.

Hope this answered your questions!

Gupta, go through all the videos in Session 3:

 

[Jyoti]

Thank you so much for sharing all this with me, @mbunke! I am kind of excited to dive into this stuff. Despite my initial reservations, aware at all times that I may be skipping down the proverbial garden path. Yet again. But...being hopeful is the high. I am willing to give this avenue a careful chance to convince me with results. Even if it does mean that I crash later....

How many times have I been here with different paths? Too many to count at this point, but I actually have a lot more faith in my own brain than I do a system that seems to be on overload itself, unable in so many cases to really hear or see or meet us.

And...I actually used my version of your recorded script this morning when I thought I was about to fall into the abyss, and while nothing dramatic transpired, I didn't fall into the abyss. Which is notable and encouraging for me. I think this route is probably not helpful for a lot of us, just like anti-virals aren't for everyone, or fixing the gut doesn't do it universally, but I am happy to have something to work with and learn about. I will definitely use the transcript--thanks for that!!

And all the best to you. I hope to hear as you progress how things go.

 

[mbunke]

Thank you so much for sharing all this with me, @mbunke! I am kind of excited to dive into this stuff. Despite my initial reservations, aware at all times that I may be skipping down the proverbial garden path. Yet again. But...being hopeful is the high. I am willing to give this avenue a careful chance to convince me with results. Even if it does mean that I crash later....

How many times have I been here with different paths? Too many to count at this point, but I actually have a lot more faith in my own brain than I do a system that seems to be on overload itself, unable in so many cases to really hear or see or meet us.

And...I actually used my version of your recorded script this morning when I thought I was about to fall into the abyss, and while nothing dramatic transpired, I didn't fall into the abyss. Which is notable and encouraging for me. I think this route is probably not helpful for a lot of us, just like anti-virals aren't for everyone, or fixing the gut doesn't do it universally, but I am happy to have something to work with and learn about. I will definitely use the transcript--thanks for that!!

And all the best to you. I hope to hear as you progress how things go.

Wonderful, please keep me updated if you have any more success! I wish you all the best!

 

[Pendergast]

Hi @mbunke!

I have been unable to answer you before. Like @Jyoti , I just wanted to thank you so much for all the info, advises and insights you have provided to us.

It's stimulating such a transparency regarding this matter and your honestity and empathy as well!

I will take a look, little by little to all the links you shared.

For now I have too much work reading the DNRS transcription. English not being my language + brainfog + being a kind of "NeanderTech" guy, will make it longer but is a work I want to do.

I thank you very much your proposal of sharing Dan Neuffer's book with me but I have seen that it has 250 pages so two weeks would be very little time to take advange of it.

I think I will buy it because that is an affordable option.

I found very usefull too the screenshot you linked, with a very specific and interesting exercise.

Today I have been speaking with my brain, trying to explain to it some of this stuff. I hope it's listening haha.

I will keep on through this route, after +20 years ill I don't have nothing to loose and I have learned to consider a theory even if it goes against what I believe.

Meantime, Drs don't have a clue and I'm sure that Ron Davis et al will finally do the trick and find the Holy Grail but my brain and I don't have so much time so while we wait, let's see if we can know each other better haha

So I hope you keep on posting how are you doing Mbunke and if you have any study or scientific paper about this stuff, would be great if you could share too!

I miss that in all these hipotheses, maybe there is not scientific evidence about this but there is something about neuroplasticity that could fit with us?

Hoping you reach more improvements, have a nice evening and I send my best wishes to you!

 

[mbunke]

Hi @mbunke!

I have been unable to answer you before. Like @Jyoti , I just wanted to thank you so much for all the info, advises and insights you have provided to us.

It's stimulating such a transparency regarding this matter and your honestity and empathy as well!

I will take a look, little by little to all the links you shared.

For now I have too much work reading the DNRS transcription. English not being my language + brainfog + being a kind of "NeanderTech" guy, will make it longer but is a work I want to do.

I thank you very much your proposal of sharing Dan Neuffer's book with me but I have seen that it has 250 pages so two weeks would be very little time to take advange of it.

I think I will buy it because that is an affordable option.

I found very usefull too the screenshot you linked, with a very specific and interesting exercise.

Today I have been speaking with my brain, trying to explain to it some of this stuff. I hope it's listening haha.

I will keep on through this route, after +20 years ill I don't have nothing to loose and I have learned to consider a theory even if it goes against what I believe.

Meantime, Drs don't have a clue and I'm sure that Ron Davis et al will finally do the trick and find the Holy Grail but my brain and I don't have so much time so while we wait, let's see if we can know each other better haha

So I hope you keep on posting how are you doing Mbunke and if you have any study or scientific paper about this stuff, would be great if you could share too!

I miss that in all these hipotheses, maybe there is not scientific evidence about this but there is something about neuroplasticity that could fit with us?

Hoping you reach more improvements, have a nice evening and I send my best wishes to you!

No problem, and I will definitely keep you all updated on how I'm doing! I hope you keeping doing the brain exercises, remember, don't push yourself!

I am still in the process of collecting scientific research that backs all of this up, but as you know, this isn't mainstream medicine yet, so the research is scattered and not a big focus for most neuroscientists at this point. But there is definitely some stuff! Mostly on tinnitus actually. I will post a few studies soon when I get the chance to put a list together of what I've found.

Best of luck to you too!

 

[mbunke]

No problem, and I will definitely keep you all updated on how I'm doing! I hope you keeping doing the brain exercises, remember, don't push yourself!

I am still in the process of collecting scientific research that backs all of this up, but as you know, this isn't mainstream medicine yet, so the research is scattered and not a big focus for most neuroscientists at this point. But there is definitely some stuff! Mostly on tinnitus actually. I will post a few studies soon when I get the chance to put a list together of what I've found.

Best of luck to you too!

Here is one very recent study on the effectiveness of DNRS. I don’t think it has been published yet, but this is a video summary of its findings:

 

[Rufous McKinney]

You can "trick" your brain into believing you're healthy by actually picturing yourself healthy, because your brain isn't very good at noticing the difference between what's "out there" and what you're imagining in your head. (Have you ever had a dream and wondered if it really happened later?)

Recently having the odd experience of trying to separate an Anxiety response I have...when my teeth hurt...from the fact that my teeth are fine.

Its been fascinating personally just TRYING to achieve this reframing.

One of my many ME symptoms is tremendous swelling of tissue in my mouth and my teeth ache and hurt.

Eating can be uncomfortable. And my teeth aren't great..so its stressful as I think something is really wrong and I may lose the tooth, for instance (this is rational, I am missing teeth).

So I suddenly get an severe tooth pain, it goes straight to Huge Adrenaline. This is going on almost every nite, cause its the worst then.

So Its amazingly challenging- to SEPARATE the reaction from the reality.

 

[Sarah94]

I do not have any sensitivities beyond exertion, although most people do, but that's why I asked. Since I wrote that post, I've been doing neural-retraining for 2.5 months and I'm 100% convinced this is the explanation for ME/CFS (commence people chewing me out ).

Why can't you just say that you are convinced that this is "the" explanation for your illness? Plenty of people with MECFS have tried it and not had it work at all. Of course people are going to "chew you out" if you claim that something is the true explanation for MECFS when that clearly isn't true for plenty of people.

 

[mbunke]

Why can't you just say that you are convinced that this is "the" explanation for your illness? Plenty of people with MECFS have tried it and not had it work at all. Of course people are going to "chew you out" if you claim that something is the true explanation for MECFS when that clearly isn't true for plenty of people.

Because it makes sense of everything I know about ME/CFS both from my experience and from what other have told me about theirs, and all the research. If it hasn't worked for someone (and there are plenty of people it does not work for), that doesn't mean the problem is not limbic system impairment, it could mean many things: maybe their limbic system has damaged some part of their body so badly that it now needs more than brain retraining to repair itself (treatments to heal the gut, like I'm doing, liver repair, hormonal supplements, which I'm also doing, etc.). Maybe your nervous system has become so structurally damaged that you do need surgery, like a fusion or decompression (ala Jen Brea--she clearly was extreme enough to need surgery, but I do not think someone like me is, even though I have multiple structural problem in my spine/brain).

So this is not to say someone has failed AT ALL if they've tried brain retraining and it hasn't helped. They could have also tried a really crappy program, or they did not receive enough additional medical support during that process to help the brain training work. And I believe it's possible there are some people who have become so ill from ME/CFS that brain training interventions might never get them out, but I believe these are few, because I have heard so many testimonies of people who were very severe get out of this.

 

[mbunke]

Recently having the odd experience of trying to separate an Anxiety response I have...when my teeth hurt...from the fact that my teeth are fine.

Its been fascinating personally just TRYING to achieve this reframing.

One of my many ME symptoms is tremendous swelling of tissue in my mouth and my teeth ache and hurt.

Eating can be uncomfortable. And my teeth aren't great..so its stressful as I think something is really wrong and I may lose the tooth, for instance (this is rational, I am missing teeth).

So I suddenly get an severe tooth pain, it goes straight to Huge Adrenaline. This is going on almost every nite, cause its the worst then.

So Its amazingly challenging- to SEPARATE the reaction from the reality.

That doesn't mean your limbic system is causing your teeth to have problems, but I'm sure you've been to a dentist to have this checked out. If they've told you there's no reason for the pain, that's usually a clue it's limbic.

But that's that thing about brain retraining--even if the cause of the problem is NOT your limbic system, your limbic system could be making it much worse! I know a girl who recently had a surgery on her stomach that was not limbic system related, and in her recovery, she has been doing DNRS every day for 30 minutes just to make sure her limbic system is not making anything worse as she deals with some post-surgical complications. And I have no doubt it has lessened the symptoms of her complications (nausea, pain, etc.)

 

[CJB]

I started Dan's program in June. Within a couple of weeks I was able to meditate sitting up, and take showers nearly every morning (always avoided that previously because I would be wiped out all day). Instead of causing a flair, light exercise makes me feel sleepy now. I get sore muscles like I used to get from exercise and I haven't gotten sick. It's slippery and not solid yet, but I'm convinced there's a lot of benefit to engaging the brain in this way. I haven't felt "sick" since I started.

BTW I've been totally disabled in 1992.

 

[mbunke]

I started Dan's program in June. Within a couple of weeks I was able to meditate sitting up, and take showers nearly every morning (always avoided that previously because I would be wiped out all day). Instead of causing a flair, light exercise makes me feel sleepy now. I get sore muscles like I used to get from exercise and I haven't gotten sick. It's slippery and not solid yet, but I'm convinced there's a lot of benefit to engaging the brain in this way. I haven't felt "sick" since I started.

BTW I've been totally disabled in 1992.

That is absolutely incredible! Congratulations!! I hope you continue to improve more and more every day!!

 

[Sushi]

Hi @mbunke . I just opened a chat with you to discuss my experience with Dan's program--did you see it?

 

[SueJohnPat]

I have been doin DNRS for 18 months. This can take a long long time. I was in a semi recovery from mold avoidance. I immediately had a few small results — the “ bad “ taste that had constantly been in my mouth went away. Then I got awful diarrhea from dairy , then 2 weeks later could eat dairy again this happened about 4 -5 times over the 18 months, Able to eat dairy for now with no problem . Overall about 70-90 percent better. Able to do much more — no bad pem anymore just slight malaise That goes away if I rest for a few hours ( not days) There are times I thought “ this is not doing anything” because for me it was a very slow drawn out process. After 18 months able to be engaged in life again .

A bad day now and then but a bad day is just relaxing on the couch just a little blah , not going to the emergency room with stroke like symptoms. I think in terms of months and even years for recovery with dnrs but already I have made great improvements. I hope there will be more stories on how it took people 1-2 years to make significant improvement.

 

[Jyoti]

Thank you for sharing this @SueJohnPat! I have just begun this journey but have a lot of hope for it. I feel empowered by it--I don't need a doctor!!! (Not that I don't need doctors, but there is something I can do that feels very purposeful that does not entail waiting for months and months and enduring disbelief and dismissal and such.)

And I am already, in the first week, noticing some tiny changes that keep me motivated. But hearing from you--70-90% better--that is terrifically motivating and inspiring. So happy for you and so grateful for your reporting on your experiences.

 

[SueJohnPat]

Just go with the process. It can be a roller coaster and symptoms may get worse before they get better then worse then better Ugh — Good luck and try to enjoy the process and make it your own ! Good luck !