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

[xebex]

What I find annoying about brain retraining especially is the suggestion that people who find it to not work were simply doing it wrong. If people got worse after surgery or any other treatment and the doctor said it was because they had wrong beliefs or messed up personalities /psyches, we would rightly see that as unethical and a cop out to avoid responsibility for worsening them.

Any treatment should be able to be tested experimentally and falsifiable.

It’s a bit like a school teacher blaming kids for not being able to read, maybe their method is wrong!”

 

[GloriaDG]

Am certain brain retraining and In particular EFT helps but who has 5 years to work on it??? our lives are being destroyed by this right now and we want a better alternative!

In the FB groups where I was in there were so many people that have been trying to get better using brain retraining for years, and some even for DECADES, to no avail. In my mind, if you've been trying to get better with a method for 15-20 years without improvements it clearly means that method doesn't work for you, right? It took me two months to realise that it wasn't working for me and I was right in thinking so and in not believing in the "you're doing it wrong" thing.

 

[xebex]

absolutely! EFT worked amazingly for me in the first 2 weeks and i have never gone back down to that level of ill function, thats the kind of results we want, i made no further improvement as i explained before but 30% improvement is huge, now i have to find the other things that are wrong.

 

[Jyoti]

For some reason, we are a species prone to proselytizing. I suspect it comes from a good place in us, but we do tend to want EVERYONE to share in the miracles we have experienced, be they medical or religious.... Finding the answers to whatever--existential angst or ME or social injustice, for instance--is so exhilarating that we want all our brethren to share in it. If it works for me so brilliantly, it HAS to work for you!

Alas, this last is rarely true. We can share our experiences, put them out on the buffet for others to peruse and nibble on if they are so drawn. I have learned so much about so much (including ME) from the sharing of others' experiences, but in the end, I have to map my own course. I am so excited that @SueJohnPat has had the massive improvement she has--it makes me hopeful that some variant of DNRS might do that for me too.

Similarly, I was inspired by Jeff and JenB's spectacular recoveries and what led to them. I would be far worse off than I am now, without their trailblazing and courageous experiments with fusion. But we cannot give away our inner knowing or autonomy. (Particularly since this is not like many conditions where there is a clear and universally successful, consensed upon treatment plan.) @GloriaDG knew that DNRS wasn't working for her at a certain point and she stopped. It is hard to do when someone who carries some authority tells you that they know more than you do. You hope--maybe they do know more.

I'm grateful for this thread and the chance to learn about others' encounters with DNRS. (And ANS Rewire, which I find more accessible because the message includes the necessity to address physical manifestations of the illness directly, rather than waiting for the limbic system to right itself.) And I know it isn't for everyone, if only because it is almost certain that our ME/CFS are diverse in origin and nature.

 

[xebex]

@Jyoti great response! It is super important to have intelligent discourse about these things. I’ve learnt a lot. Thanks all!

 

[frozenborderline]

I’m pretty sure there are real reasons for all pain, even emotion based pain is real! For example when I get anxious my back muscles really hurt but they also hurt hurt anyway due to muscle hypo perfusion! But the limbic system gets stuck somehow making it worse. And if you read up On Modern pain science the current theory is that pain is a perception of the brain NOT your mind and all kinds of factors make the brain respond to pain in different ways. I watched a testimonial of a woman who broke her spine in 4 places the EFT reduced her need for pain Killers, she has to do it every day but at least she’s not destroying the rest of her body. EFT (and DNRS to some extent) has really helped improve my pain, I couldn’t sit up for more than 10minutes 6 months ago and now am good for an hour. I’m still not more functional though as sitting up for an hour still doesn’t get me out of the house. Am certain brain retraining and In particular EFT helps but who has 5 years to work on it??? our lives are being destroyed by this right now and we want a better alternative! Maybe if I keep Up With DNRS I’ll get better over time too but I’d hate for that to be seen as the only way out, people suffering for years because a drug alternative got sidelined as DNRS programs come in to replace them. BUT Until I get a drug that is going to work I will continue to work on the limbic system it helps a bit, and I’d rather be at 60% than 30%! but it is VERY VERY difficult and sometimes we really just need a goddam break!

I don't think that it's consensus that pain is always just a signalling problem, rather than accurately responding to damage in the body.

Why is there only anecdotes but no research suggesting things like brain retraining?

 

[Wayne]

My wife recently received an email from a friend who started DNRS a couple months ago or so. She didn't type anything in the email; only mailed a title. Which read: -- "Fwd: Tell Wayne DNRS is REALLY good!" I've been meaning to get back to her, but haven't gotten around to it. I don't think she has ME/CFS, but does have a lot of ME/CFS type symptoms.

But there is definitely some stuff! Mostly on tinnitus actually.... I've found that I can do the same thing with tinnitus.

Hi @mbunke -- Thanks for all your posts on this thread; I'm quite interested in this whole topic. For a long time, I've (daily) done a set of contemplative and energy balancing techniques (including vagus nerve stimulation) that seem to resemble some of the aspects of programs like DNRS, and which significantly help me maintain at least a semblance of equilibrium.

I'm particularly interested in what you can add about your references to tinnitus. I've been dealing with pretty debilitating tinnitus since taking a single dose of an ototoxic medication two years ago, and am always on the lookout for anything that might help.

I've noticed that subtle shifts in my brain function from different kinds of sensory input (such as noises, or even my own thoughts) can affect my tinnitus perception(s). So finding subtle ways to influence how my brain processes input could be helpful. -- I'm hoping to contact our friend doing the DNRS sometime soon, and will report back.

 

[xebex]

I don't think that it's consensus that pain is always just a signalling problem, rather than accurately responding to damage in the body.

Not yet but it’s heading that way.

Heres a really great article on what modern pain science is learning about pain, just because pain is “perceived” doesn’t mean it’s not real and not a representation of real physical damage.

https://www.painscience.com/articles/pain-is-weird.php

Why is there only anecdotes but no research suggesting things like brain retraining?

Just to be clear EFT and DNRS are pretty differnt things. EFT is an energy medicine not ”brain retraining“ though I think by its nature it does change how the brain responds to things. I was just using EFT as an example of weird ”woo” stuff that has considerably helped me. There is a lot of research being done on EFT but not in me/cfs.

As for the testimonials for DNRS I totally agree. Most of the testimonials I have seen are of people after only 3 days of being in the program. You know what, I felt great after 3 days in the program too! but speak to me 3 months down the line I was a mess! Where are the follow ups a year later, 3 years later?

There is a study recently out on DNRS but I think the reporting suffers the same inaccuracies that the Pace trial suffered. Basically it seems to suggest that if someone isn’t feeling anxious any more and they have less Pain they are somehow cured. I’m sure you can pick it apart yourself.

https://retrainingthebrain.ontraport.com/e/2SK/vfeY/65k/6ucnpP3Xq5

Ultimately I’m trying to be open minded and curious as to how it does help some people and how that can offer us clues to what’s going on and what we can do to improve our own conditions. Just like I read all the other accounts of all the other things people have done to improve themselves.

It is interesting that trying a methylation protocol is never criticized as much as DNRS training yet if that goes wrong the results can be pretty horrendous!

 

[mbunke]

@mbunke. How is your progress going?

I've decided I'm going to give it a go and go back to school. The DNRS tactic is correct (I believe) in that we need to focus on life outside of this. To do that I need to immerse myself in something so school it is. Of course I attended school for something hard like molecular biology but so be it, time to finish the degree

Hi, thanks for asking! My headaches continue to improve, although it's slow. Some other changes I noticed recently: my fingernails seem to be getting stronger (weird), and I can stop myself from crashing when I usually would. For instance, I went to a friend's wedding and felt terrible at the beginning, but I did my brain training, and the next day when I would usually wake up crashed for a week, I didn't crash at all. That has happened on a smaller scale a couple other times now too.

I couldn't agree more with you that dwelling on the illness (unless it's focusing on recovery) is unhelpful for us. I'm so glad to hear you're going back to school! Just be careful not to overdo it. Again, any brain retraining program that pushed you beyond what you can handle I don't believe in. You have to talk to your body AND listen to it.

 

[mbunke]

My wife recently received an email from a friend who started DNRS a couple months ago or so. She didn't type anything in the email; only mailed a title. Which read: -- "Fwd: Tell Wayne DNRS is REALLY good!" I've been meaning to get back to her, but haven't gotten around to it. I don't think she has ME/CFS, but does have a lot of ME/CFS type symptoms.



Hi @mbunke -- Thanks for all your posts on this thread; I'm quite interested in this whole topic. For a long time, I've (daily) done a set of contemplative and energy balancing techniques (including vagus nerve stimulation) that seem to resemble some of the aspects of programs like DNRS, and which significantly help me maintain at least a semblance of equilibrium.

I'm particularly interested in what you can add about your references to tinnitus. I've been dealing with pretty debilitating tinnitus since taking a single dose of an ototoxic medication two years ago, and am always on the lookout for anything that might help.

I've noticed that subtle shifts in my brain function from different kinds of sensory input (such as noises, or even my own thoughts) can affect my tinnitus perception(s). So finding subtle ways to influence how my brain processes input could be helpful. -- I'm hoping to contact our friend doing the DNRS sometime soon, and will report back.

Hi Wayne. If you do a Google Scholar search for "tinnitus neural retraining" or similar terms you will get a lot of results, for some reason, this seems to be one of the conditions/symptoms with the most brain training research, so you're in luck! Here is a good one: https://www.karger.com/Article/PDF/90487

What you'll find is these strategies aim at helping the patient classify the sound disturbance as a "neutral signal," rather than a negative one. When your brain classifies a symptom or stimulus as negative, it alerts the limbic system to strengthen the signal, because it "must" be alerting you to some "real danger," when in fact, it is obviously not. The more you tell you brain, "this is a neutral [or even positive] signal," the more it untethers the symptom from the alarm system (sympathetic response), and the more it does this, the more the symptom itself dies because it needed that alarm system to survive. Hopefully that makes sense. I wish you the best of luck!

 

[Sushi]

The more you tell you brain, "this is a neutral [or even positive] signal," the more it untethers the symptom from the alarm system (sympathetic response), and the more it does this, the more the symptom itself dies because it needed that alarm system to survive.

How does neural retraining work if you are parasympathetically dominant and thus you don’t get a sympathetic alarm? This is my situation, I have not had success with neural retraining and I wonder if this is why? Maybe it is only effective if you have a strong sympathetic alarm system?

 

[xebex]

How does neural retraining work if you are parasympathetically dominant and thus you don’t get a sympathetic alarm? This is my situation, I have not had success with neural retraining and I wonder if this is why? Maybe it is only effective if you have a strong sympathetic alarm system?

interesting, i have often wondered if i am parasympathetically dominant as i have great HRV readings even when i was really ill, and doing HRV training didn't seem to make any changes. How do you know?

 

[Sushi]

How do you know?

I was tested extensively by an autonomic specialist. He prescribed a drug that increased norepinephrine (sympathetic response) and it really reduced my dysautonomia symptoms.

 

[xebex]

interesting, i do really well on ritalin which also increases norepinephrine, but unfortunately i also build tolerance too fast so can't take it, what is the drug you are prescribed?

 

[Sushi]

interesting, i do really well on ritalin which also increases norepinephrine, but unfortunately i also build tolerance too fast so can't take it, what is the drug you are prescribed?

I took strattera. Ritalin seems to help some patients but I also know someone who had some long term damage from taking too much.

But I am very interested in whether neural retraining only is effective if you tend to get too much sympathetic activation. Any experience or ideas anyone?

 

[xebex]

I took strattera. Ritalin seems to help some patients but I also know someone who had some long term damage from taking too much.

Yes i would need to keep increasing my dose to keep it working so just not worth the risk.

But I am very interested in whether neural retraining only is effective if you tend to get too much sympathetic activation. Any experience or ideas anyone?

It is possible that i am parasympathetic like you then. I have described my story through this thread, but in short, DNRS made me worse, EFT gave me a 30% improvement. EFT isn't brain retraining as such but i think that over time it does reprogram your brain, however most of my major improvement took place over two weeks so that would suggest it's more of an energy shift rather than retraining, and then i just use it as maintenance, i can't seem to get above 60% functional, but that is a huge improvement from the 30% that i was.

I do hold on to the theory of brain retraining but the DNRS process is just not for me, it is the MOST convoluted process that left me literally tearing my hair out with stress and worry as well as dealing with a lot more crashes after doing my incremental training so I stopped doing it. What has helped (in small ways) is always trying to keep in mind that "it's just my limbic system freaking out" and not changing anything about my life other than that really - over time i have noticed some improvements but its all a bit vague and a bit too soon for me to say if its actually real.

 

[Aerose91]

Ritalin is also a mast cell stabalizer

 

[xebex]

Ritalin is also a mast cell stabalizer

interesting yes i have vague histamine like issues and vasodilation issues, i was taking it for the vasoconstriction it induces.

could you provide a source about it being a mast cell stabilizer, i can't find anything? thanks

 

[mbunke]

How does neural retraining work if you are parasympathetically dominant and thus you don’t get a sympathetic alarm? This is my situation, I have not had success with neural retraining and I wonder if this is why? Maybe it is only effective if you have a strong sympathetic alarm system?

It works for both. Dan Neuffer's program, ANS Rewire talks about this.

 

[Sushi]

It works for both. Dan Neuffer's program, ANS Rewire talks about this.

Yes, he says so, but it didn’t work for me and that is the only reason I can think of as most of the techniques in all of these programs are for damping down the sympathetic response.