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

[mbunke]

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.

This is sooo encouraging!! I'm so happy for you, and so hopeful after hearing about your story. It can get discouraging when your own process feels soooo sloowww and all you see on the DNRS youtube testimonials are people getting better really quickly.

 

[Timaca]

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:

Thanks for posting what you say to yourself (I couldn't quote that part). Interestingly enough, I can get full body waves of goose bumps, often at night when I try to sleep. I found that taking a deep breath or two can make them go away. But even more surprising, I found that just talking out loud to myself, like you mentioned also makes them go away! I was astounded. Thanks for sharing what you do!!

 

[mbunke]

Thanks for posting what you say to yourself (I couldn't quote that part). Interestingly enough, I can get full body waves of goose bumps, often at night when I try to sleep. I found that taking a deep breath or two can make them go away. But even more surprising, I found that just talking out loud to myself, like you mentioned also makes them go away! I was astounded. Thanks for sharing what you do!!

That's super cool! I've found that I can do the same thing with tinnitus. Most of my symptoms don't go away in the moment when I do the rounds, they just slowly abate over the weeks, some things seem to be changeable in the moment, which is so cool and crazy. If I were you, I would try to keep doing what you're doing with all kinds of things!

 

[Timaca]

That's super cool! I've found that I can do the same thing with tinnitus. Most of my symptoms don't go away in the moment when I do the rounds, they just slowly abate over the weeks, some things seem to be changeable in the moment, which is so cool and crazy. If I were you, I would try to keep doing what you're doing with all kinds of things!

Yes, I agree! I need to learn more about this and do it!!!! Thanks for sharing. I look forward to your YouTube Channel. Please make sure I know about it when you get it up and running!

 

[frozenborderline]

It is not!

 

[frozenborderline]

My arguments against brain retraining:
1. The proponents of these systems only use anecdotes and not peer reviewer research to sell them. Anecdotes can be valuable, but I trust them more when coming from patients I know and not a group or company trying to sell me something.

2. The idea that limbic system is the main thing dysfunctional in me/cfs holds almost no water. We are seeing emergence of structural problems (hardware vs dnrs' software idea) and inflammation in the brainstem which is very different than the limbic system. So not only is the empirical evidence not there , the theory is wrong.

3. Brain retraining programs use brainwashing techniques and "toxic positivity". They are inherently prone to reporting bias and placebo bc they tell patients that having critical thoughts about the program and not believing in it enough , is what makes one fail. Good treatments work whether or not you believe in them or not. Mold avoidance, which I do, may not have tons of empirical evidence for it. Because it hasnt been studied. But I've found it to work whether or not I believe in it, which is the Hallmark of a non placebo treatment. For example I have often had skepticism of aspects of it because the level of sensitivity to small amounts of toxins seems far-fetched, and then I'll reluctantly decontaminate, or try going to a more clear area, and then prove my skepticism wrong.

4. Brain retraining proponents have used extremely unethical methods to sell their programs. For example, Annie hopper wrote a review of unrest and used it as a way to sell her program by implying Jen Brea would hbenefit from it, even though Jen said brain retraining made her worse and never endorsed these programs. Annie did the same thing with Erik Johnson. This is behavior that is inexcusable.
5. If people are indeed reacting to real insensitivities or intolerances for a reason, not because their limbic system is oversensitive (which has no evidence ), brain retraining will dangerously encourage them to push through warning signs. This applies to toxin intolerances as well as exertion intolerance. This could lead to very dangerous outcomes.
6. To the extent that stress and fear play a role in me/cfs , as in any illness, there are relaxation techniques developed over millennia that don't share all of the pitfalls I listed and are free. Cultivating "relaxed awareness" through meditation doesn't share the same issues as telling your body something is fine that is not fine.
7. Brain retraining proponents often respond to the above arguments by saying that the person criticizing brain retraining doesnt have an accurate account of brain retraining, even if it is from many secondary sources. Which amounts to saying you have to buy the program and earnestly try it before personally criticizing it, but also if you did try it and fail it's usually your fault. Even fairly zealous proponents of most medical treatments normally acknowledge treatment failure rather than patient non compliance as a possibility

 

[GloriaDG]

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.).

To me this doesn't make any sense. It is pure pseudoscience as it has no scientific base. And I was like you for a while, I really believed in this stuff. I researched it for months and participated in FB groups where people practised this stuff. I even spent more than £2500 in "nutritional consultations", useless non FDA approved "tests" and supplements in order to treat a made up gut related condition.
Then I found a pharmaceutical drug that restored my health and I realised that my problem was 100% vascular in nature. It had nothing to do with the limbic system, the amygdala or the nervous system. Now my only problem left is cerebral vascular insufficiency which will likely be treated by angioplasty.

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).

I'm sorry, but if you say that the overdrive is the root cause, to me this makes no sense on a physiological perspective. Jen Brea's problem was the instability of her C0 - C1 junction, resulting in compression of her brainstem. An "overdrive" (which by the way doesn't mean anything in medicine) of the limbic system or amygdala cannot possibly cause instability of the spine. If anything, is the other way around, meaning that the compression of the brainstem can cause malfunctioning of the organ. Sometimes intracranial hypertension can also cause the CSF liquid to compress some part of the brain as well, like the pituary gland that may flatten and result in hormonal inbalance. Both cases demonstrate that this "overdrive" is just a consequence in most cases, not a cause. Besides, Jen also had AAI which created compression of her jugular veins when rotating her head and likely eleveted intracranial pressure. This is a case of vascular insufficiency that can lead to hypoperfusion of the brain, then cerebral hypoxia and then brain inflammation, which has been well documented in ME/CFS research. Again, nothing to do with the limbic system or amygdala. Moreover, why would the limbic system be stuck if not structurally compromised? If it just got stuck on its own or due to stress, then people in war countries like Yemen or Syria should all get ME/CFS.

I am convinced that these "brain retraining programs" are actually just psycho-behavioural approaches, just a new and fancy CBT technique (and I've tried both of these approaches in my life). They are a "all in the head approach" that is packed in a fancy wrap and served to you with the marketing slogan "mind over matter". Because I'm convinced that the pseudoscience behind is just a marketing strategy to make you believe that you're not actually buying a psychological approach.

Of course, managing stress can help to manage symptoms. But it's still a coping strategy. For example, somebody with chronically high blood pressure will probably have a stroke if found in a particularly emotionally stressful situation. But what do you think is the cause of the stroke, the stress or the high blood pressure mixed with a blood clot? Another examples could be headaches: most headaches are vascular in nature, so if you control your blood pressure by stress management you can somehow control them. But still, the emotional stress remains the trigger, not the cause. The cause remains the likely cerebral vascular insufficiency.

I agree with @Sarah94, you should say that you've found the cause of YOUR symptoms, not THE cause of ME/CFS, because for any positive testimonial (by the way, we don't know the medical history of these "recovered" people, we don't know anything about their health) there are hundreds of people that have tried these programs and failed. Instead, they just perpetuate the idea that ME/CFS is psychological among medical professionals (don't you find it fishy that most specialists from the curable app are psychologists?) and deny further funding into biomedical research.

 

[xebex]

The cause remains the likely cerebral vascular insufficiency.

I’ve been following this thread for some time and currently I agree with both sides, stress certainly exacerbates the condition but is it really the true cause? My thoughts are it’s a genetic cause and any kind of stress be it physical, emotional, viral, bacterial Etc can trigger the condition. I have had a lot of progress with EFT it got me from 30% to 60% functional but then no further improvement, this suggests that 30% of my illness was made worse by stress but the rest is something physical that I can’t find or fix, but the questions is what caused the physical change in the first place? And why is it that some people’s conditions seems to be entirely caused by emotional stress when others have a physical factor on top of that that they can’t find or fix? I wouldn’t want to tell someone who could be fixed by DNRS not to try it, they won’t know till till they try (and I know two people who have made 80-90% recoveries using DNRS) but at the same time I tried DNRS and after some Small improvements did get worse.

 

[GloriaDG]

I’ve been following this thread for some time and currently I agree with both sides, stress certainly exacerbates the condition but is it really the true cause? My thoughts are it’s a genetic cause and any kind of stress be it physical, emotional, viral, bacterial Etc can trigger the condition. I have had a lot of progress with EFT it got me from 30% to 60% functional but then no further improvement, this suggests that 30% of my illness was made worse by stress but the rest is something physical that I can’t find or fix, but the questions is what caused the physical change in the first place? And why is it that some people’s conditions seems to be entirely caused by emotional stress when others have a physical factor on top of that that they can’t find or fix? I wouldn’t want to tell someone who could be fixed by DNRS not to try it, they won’t know till till they try (and I know two people who have made 80-90% recoveries using DNRS) but at the same time I tried DNRS and after some Small improvements did get worse.

I think we will know the answer only when scientific research undercovers the physical cause. Personally, I think we are very near to achieving that. I base this on my personal experience and also on recent developments with the mechanical theories of the disease (ex. Jen Brea's recovery and Co.). So the best thing to do at the moment is to follow research developments closely and ultimately sustain biomedical research in the disease.

 

[Jyoti]

I know two people who have made 80-90% recoveries using DNRS) but at the same time I tried DNRS and after some Small improvements did get worse.

I think this points to the still mysterious cause(s) of ME/CFS. More and more, it looks like there are varying sub-sets and manifestations. Which means that there are (and we know there are) varying paths toward improved health.

I get extremely ruffled by anyone who suggests that this is other than a physical illness. I looked at DNRS many times over the last couple of years and was put off, and even offended, as I read the materials associated with it. I have also fended off well-meaning friends and family who thought it might be just the thing. It is the case that I am often desperate for people to understand that this is not a situation I can pray or meditate or positive think away.

And while I do not relate to the tone and promotion associated with DNRS all that well, I am now dipping my toe in. I have found much that makes great sense to me in Dan Neuffer's ANS Rewire in regard to what I know about my body and how it has responded to all sorts of conditions. In a lot of ways, it feels like a decent fit for me. For me. Not for anyone else necessarily, but for me.

On the one hand, I have absolutely no idea if this trajectory will yield results. On the other, I have been pursuing a diagnosis of (or not) CCI/AAI for more than a year (I am still awaiting a reading by Dr. B of an MRI done in mid-August), have spent thousands and thousands on a CFS specialist which has yielded very little and have consumed hundreds of potentially good hours (and we have to count them carefully) fighting with my insurance company in the vain desire to see them pay for some fraction of these costs. All this after seven years of wandering in the darkness of widespread ME/CFS ignorance out there.

My point is that this is relatively inexpensive, it is far from conclusively effective, and it offers me a bit of empowerment. There is something I can do that may actually improve my health. Instead of being jerked around by the the healthcare industry and hoping for some miraculous outcome.

We all are drawn, most likely by internal knowledge, in particular directions, toward certain potential answers. I'd hate to see brain retraining taken off the table since it has anecdotally made a huge difference for some people. Similarly antivirals have helped some of us immeasurable and done nothing but harm to others of us. I am confident that it is not THE answer, but it certainly has been AN answer--or a part of it-- for some of us.

 

[xebex]

Absolutely! I think it’s great to try DNRS ( although I think they might suggest to push too much so ANS might be better) and it would be great if you made improvements with it but to suggest it’s is the only thing you need to do is not true. Like I said I made 30% improvement with EFT in just two weeks! And it took me a whole year to let go of “it’s all in my head stigma” and try it. Its not “In my head” but my nervous system is constantly in a stressed state and there are things you can do to improve that aspect. Before I tried EFT I couldn’t speak to my mum for more than 5 minutes without crashing and taking 2 days to recover! I had to cut all my hair off because I Couldn’t wash and brush it. I couldn’t even hug my daughter and the sound of people moving about downstairs while I lay in bed was painful, it was horrendous! I am so glad for EFT! BUT I then spent the next year doing EFT and then DNRS and did not improve further. I fixed the stress part, I also fixed the diet and brain fog part, but I am still house bound, I can’t actually function as a normal person yet.
I really think people would benefit from removing the emotional stress aspect of this disease and anyone who says they aren’t emotionally disturbed by what is happening to them is delusional. But it’s Likely not going to be 100% cure and in most people there will be other factors that need fixing, and if you find what it is you’re lucky!

 

[GloriaDG]

I think this points to the still mysterious cause(s) of ME/CFS. More and more, it looks like there are varying sub-sets and manifestations. Which means that there are (and we know there are) varying paths toward improved health.

Yes. I think we should keep in mind that ME/CFS is likely a wastebasket diagnoses where all sorts of inexplicable fatiguing illnesses eventually fall into. I really hope that researchers will identify these subsets soon.

In a lot of ways, it feels like a decent fit for me. For me. Not for anyone else necessarily, but for me.

THANK YOU. This is the only disclaimer that should always be used. Glad it works for someone, but don't force it on everybody else. I also almost recovered thanks to a drug called Stugeron, but I'm very realistic in thinking that I'm probably just a case and it won't likely work on the majority of ME/CFS patients.

My point is that this is relatively inexpensive, it is far from conclusively effective, and it offers me a bit of empowerment. There is something I can do that may actually improve my health. Instead of being jerked around by the the healthcare industry and hoping for some miraculous outcome.

I'm glad it's given you enough power and control over your health to allow you to have some piece of mind. The reason why I called for caution over these programs is because when they don't work they can be detrimental for your mental health. It was in my case: I was convinced that it was the answer, but at the same time I wasn't improving at all. This made me spiral in a vicious circle of self-blaming myself for being sick, adding considerable emotional stress on my shoulders. I thought "if this is the answer and I can't make it work for myself, then I'll be sick forever". Those months were the most horrible and traumatic of my life. When I finally shifted my mindset onto accepting that I wasn't in control and that it wasn't my fault if I was sick, I finally felt extremely relieved.

Of course I'm still glad for you if these programs give you some relief and I hope they wil continue to do so.

 

[xebex]

This made me spiral in a vicious circle of self-blaming myself for being sick, adding considerable emotional stress on my shoulders. I thought "if this is the answer and I can't make it work for myself, then I'll be sick forever". Those months were the most horrible and traumatic of my life. When I finally shifted my mindset onto accepting that I wasn't in control and that it wasn't my fault if I was sick, I finally felt extremely relieved.

Yes this exact thing happened to me on DNRS mentally I was a complete mess, and that made me worse but what really made me worse was a week of feeling sooo good I thought I could do anything, so I did, well within reason but I socialized more and I walked a little further, and guess what I got sicker and then the mental health started to suffer and then I was in this terrible loop for about 3 months. I am actually calmer and happier without the program and if being calm and happy is all it takes then I should be improving now!

 

[GloriaDG]

Yes this exact thing happened to me on DNRS mentally I was a complete mess, and that made me worse but what really made me worse was a week of feeling sooo good I thought I could do anything, so I did, well within reason but I socialized more and I walked a little further, and guess what I got sicker and then the mental health started to suffer and then I was in this terrible loop for about 3 months. I am actually calmer and happier without the program and if being calm and happy is all it takes then I should be improving now!

I'm so sorry to hear that, I'm glad you're over it now! Being in a calm and happy place mentally is always a good thing and I hope you can stay in that place. If you improve symptoms wise that's great, but if you don't then don't stress or blame yourself for it. It's still okay.

 

[Aerose91]

@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

 

[Rufous McKinney]

If they've told you there's no reason for the pain, that's usually a clue it's limbic.

But thats not what the dentist said. THere are real reasons for the pain. THe tissue is inflamed. WE just don't know why.

My dentist SAW THAT the tissue was all inflamed. He viewed it as something possibly allergic.

Smart dentist: its probably angiodema...or other related histamine reactions coming out of this corrupted immune system.

Tried to make an immunologist appointment, they canceled and refused to see me. So whatever.

 

[Rufous McKinney]

I have had a lot of progress with EFT it got me from 30% to 60% functional but then no further improvement, this suggests that 30% of my illness was made worse by stress but the rest is something physical that I can’t find or fix, but the questions is what caused the physical change in the first place?

oddly: I like your 30% estimate. there is this component of being this sick...which generates stress and ways to reduce that- COPE with it...can be helpful. Leaving one with the 60%.

yeah- thats about right...

I often run out of energy- while intending to EFT some past issues...and sigh and...nap instead!

 

[xebex]

Naps are always more important but try and eft after!

 

[frozenborderline]

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.

 

[xebex]

But thats not what the dentist said. THere are real reasons for the pain. THe tissue is inflamed. WE just don't know why.

My dentist SAW THAT the tissue was all inflamed. He viewed it as something possibly allergic.

Smart dentist: its probably angiodema...or other related histamine reactions coming out of this corrupted immune system.

Tried to make an immunologist appointment, they canceled and refused to see me. So whatever.

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!