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

[Wayne]

About 20 years ago, my wife and I moved from Colorado to Oregon. It was a daunting, arduous, and difficult undertaking. I literally pushed to the max for days and weeks to make it all happen. When we arrived in Oregon, it was a lot more work for the first few days to get settled.

When I was finally able to start relaxing, I noticed my everyday energy was better than it was before I started the moving project. I even postulated that maybe this move was just what I needed to somehow get me out of a "rut". Perhaps all I needed was to extend myself in ways I hadn't been accustomed to, and I could go forward a much more functional person.

Well... that illusion lasted about 3-4 more days. And then I began to start feeling the exhaustion from having pushed myself so hard for so long. And horrifically, the exhaustion became worse and worse. Day after day, week after week, month after month, until I got to the point where it would take me an hour to reach the bathroom in the morning. I endured the most difficult and debilitating crash I'd ever had, and it took over a year before I began to restore some of my earlier baseline.

I thought this story fit in pretty well with this discussion. I think it illustrates pretty clearly that even the best attitudes and motivations in the world are not going to work if something foundational that got us so debilitated to begin with is not dealt with in a meaningful way, prior to undertaking new potentially crash producing endeavors.

 

[frozenborderline]

About 20 years ago, my wife and I moved from Colorado to Oregon. It was a daunting, arduous, and difficult undertaking. I literally pushed to the max for days and weeks to make it all happen. When we arrived in Oregon, it was a lot more work for the first few days to get settled.

When I was finally able to start relaxing, I noticed my everyday energy was better than it was before I started the moving project. I even postulated that maybe this move was just what I needed to somehow get me out of a "rut". Perhaps all I needed was to extend myself in ways I hadn't been accustomed to, and I could go forward a much more functional person.

Well... that illusion lasted about 3-4 more days. And then I began to start feeling the exhaustion from having pushed myself so hard for so long. And horrifically, the exhaustion became worse and worse. Day after day, week after week, month after month, until I got to the point where it would take me an hour to reach the bathroom in the morning. I endured the most difficult and debilitating crash I'd ever had, and it took over a year before I began to restore some of my earlier baseline.

I thought this story fit in pretty well with this discussion. I think it illustrates pretty clearly that even the best attitudes and motivations in the world are not going to work if something foundational that got us so debilitated to begin with is not dealt with in a meaningful way, prior to undertaking new potentially crash producing endeavors.

Can't help wondering if the air was worse in oregon too. Not that Colorado is perfect but the western coastal city areas in the pacific northwest consistently rate as one of the areas with highest reports of bad air

 

[mbunke]

@wabi-sabi The broken leg analogy is a great one, thanks for sharing that. It's really helpful to have you all remind me of what it's like to be severe, I haven't experienced that level of CFS in a few years, and it's so easy to forget once you life changes. My envelope has grown a great deal, but of course there is still a point at which when I push past it, I crash.

Of course I still feel better (in the short term) when I rest too. But the only long-term improvement (besides medicine, which I'm not counting officially because my symptoms come back as soon as I go off of them) I've gotten was from gradually pushing out of my envelope. But I didn't truly start trying this until I had alleviated a lot of the severity with medications. (PS- LDN took awhile for me to notice anything too. I know it's expensive, but I'd encourage anyone who's tried it without success to try it again. I didn't notice anything till the second try.)

The only experience I have with trying the graded exposure (that's what I'm calling it until I can come up with a better term) while severe was when I became really passionate about an idea for a website (to help people with ME), and the passion/drive for the project allowed me to sit in bed and code for sometimes 10 hours a day. I'm not saying, "You should all be able to this if you just care enough!" I know you all care more than anything to get better, but I just want to make sure I put out into the world everything that worked for me in case it can work for anyone else who thinks it's worth a shot.

@hapl808 I really hope and pray something does help you turn a corner eventually! The motto I have been operating from is, "If nothing changes, nothing changes." So when I find myself plateauing, I think, "okay, I have to start doing something differently." It almost doesn't matter what, as long as things keep changing in some respect (although of course being careful to avoid things that are likely to make you worse).

 

[mbunke]

@xena thank you for your input, really good to know!

 

[hapl808]

@hapl808 I really hope and pray something does help you turn a corner eventually! The motto I have been operating from is, "If nothing changes, nothing changes." So when I find myself plateauing, I think, "okay, I have to start doing something differently." It almost doesn't matter what, as long as things keep changing in some respect (although of course being careful to avoid things that are likely to make you worse).

Thanks. That is why I continue to try things. Like many people here, I think I'm relatively open minded and have tried: rheumatologists, immunologists and mast cell specialists, TCM, naturopaths, neurologists, LDN, testosterone, HGH, SARMs, peptides, Medical Medium protocols, DNRS, methylation, antibiotics, anti-parasitics, restricting activity, pushing outside of my envelope, physical therapy, massage, herbal protocols, ayurveda, vegan, vegetarian, carnivore, keto, Wahl's protocol, cromolyn, H1 and H2 blockers, high dose thiamine, HRV tracking, BCAA, monolaurin, AHCC, and on and on.

Of course it's impossible to avoid things that make you worse, as it often comes from unexpected places, but I'm always weighing risk vs reward.

The search continues.

 

[mbunke]

Judee it would not be in something related to ME/CFS

 

[mbunke]

hapl808 wabi-sabi For anyone interested, I was just thinking of anything I knew of to recommend severe patients check out if you don't have access to functional medicine and things like low dose naltrexone, and I emailed Sam Jones at the Optimum Health Clinic, who I'm actively using right now as a moderate patient, and asked her what they have to offer for severe patients. They help patients via zoom globally. This is what she said:

Hi Michaela

The nutrition side of the clinic can do tests for things like Lyme, mycotoxins etc that may be playing out in more severe cases. On the psychology side we prefer people to be able to engage to a degree – like be able to do at least half hour sessions, and then we can offer the Individual Psychology Programme, spread over 8 sessions instead of 4, for example (similar content to RESET). Or there is a RESET without the group call which people can work through at their own pace. Its probably best for them to call/email the clinic to speak to one of the New Client Coordinators who will best be able to explain the options. They might then be passed on to have a free 15min chat with someone on the nutrition side and on the psychology side.

I hope this answers your question

Sam

Just wanted to put it out there into the internet-verse. I highly recommend them at the very least to moderate patients. Great content. Alex Howard, the founder really knows his stuff, much more than any of the creators of "brain training" programs.

 

[Wayne]

The motto I have been operating from is, "If nothing changes, nothing changes." So when I find myself plateauing, I think, "okay, I have to start doing something differently." It almost doesn't matter what, as long as things keep changing in some respect (although of course being careful to avoid things that are likely to make you worse).

I think I'm relatively open minded and have tried: rheumatologists, immunologists and mast cell specialists, TCM, naturopaths, neurologists, LDN, testosterone, HGH, SARMs, peptides, Medical Medium protocols, DNRS, methylation, antibiotics, anti-parasitics, restricting activity, pushing outside of my envelope, physical therapy, massage, herbal protocols, ayurveda, vegan, vegetarian, carnivore, keto, Wahl's protocol, cromolyn, H1 and H2 blockers, high dose thiamine, HRV tracking, BCAA, monolaurin, AHCC, and on and on.

Of course it's impossible to avoid things that make you worse, as it often comes from unexpected places, but I'm always weighing risk vs reward.

The search continues.

Hi @mbunke & @hapl808 -- I very much appreciate your above comments. My own philosophy during my ME/CFS odyssey has always been to strive to be resourceful, relentless, and resilient (my 3 R's). I ran across a short 4-min. video last night by the spiritual leader of Eckankar who touches on this topic (I'm a long-time member of Eckankar). Below a link If you have an interest in checking it out. I think what he says about challenges evoking the spirit of creativity describes many of us on this forum.

ECKANKAR—Using Your Divine Creativity to Overcome Problems

 

[Rufous McKinney]

I even postulated that maybe this move was just what I needed to somehow get me out of a "rut". Perhaps all I needed was to extend myself in ways I hadn't been accustomed to, and I could go forward a much more functional person.

Well... that illusion lasted about 3-4 more days

very interesting......(and your not around the moldy coast, correct..your inland?)

I had a sort of experience where in I did a one month visit to my daughter in Southern Mexico, and was Ok-ish.

So when we headed back down for three months, I was convinced I'd be far better there (as Id gotten worse, here). Total placebo opportunity. As personally I was convinced.

I convinced myself that more moving around (yes, that happened) and more sun and more uplifting emotions and more fun- would in fact lift me up.

It didn't , I had the worst crash ever and mostly it was just THE WHOLE TIME and then more months upon my return.

Relentless: sometimes I am not that. Thats sometimes a hard one.

 

[snooze]

@Wayne, I love those 3R's. Resourceful, relentless, and resilient. Great goals.

 

[ashram]

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.

 

[frozenborderline]

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.

Get a book on meditation and save yourself the trouble. Dnrs doesn't work to cure the illness

 

[frozenborderline]

course I still feel better (in the short term) when I rest too. But the only long-term improvement (besides medicine, which I'm not counting officially because my symptoms come back as soon as I go off of them) I've gotten was from gradually pushing out of my envelope. But I didn't truly start trying this until I had alleviated a lot of the severity with medications. (PS- LDN took awhile for me to notice anything too. I know it's expensive, but I'd encourage anyone who's tried it without success to try it again. I didn't notice anything till the second try.)

This is the Crux of the matter. I believe you may be attributing aspects of getting better from pem to pushing your 3nvelope rather than LDN. Did you also move at all or spend any time in different environments

 

[frozenborderline]

very interesting......(and your not around the moldy coast, correct..your inland?)

This is what I was wondering

 

[xena]

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.

ask on neural retraining friends for someone to lend you their DVDs.
or hire heather lane limbic retaining coach- she will teach you a similar process for like $50. look for her on facebook or pm me and I'll connect you.

imo dnrs won't cure everyone but can help significantly to help a subset of person heal. it helped hugely with some of my issues tho didn't cure all. if you feel strongly about it i would try it.

it made my life WAY better.

 

[YippeeKi YOW !!]

I know I shouldn't ask, but has anyone got a link to download the DNRS program ?

Of course you should ask !!!! That's what these threads are for, that's what we're all here for, each to each.

I hope someone can hook you up, but just in case they can't, do know that pretty much no one who's tried the many different forms of DNRS, which keeps resurfacing under different names, with different sales pitches and different price tags, has found it to be the Holy Grail. The only thing that seems to remain the same is that they're all pitched at people like us: the ill, the vulnerable, the desperate, the immobilized by fear.

I absolutely cannot pay 350$ right now. I don't understand why it's not possible to pay in several times on their website..

Probably because they know that at some point, you'll realize that their miraculous cure-all program is doing NOTHING for you, and you'll stop paying. So they have to get it up front, like drug dealers who know that they've stepped on their product so many times that you'll realize almost immediately that its crap.

I'd give them my next paycheck if I can go in remission thanks to it.

Oh, @ashram , I wish that this would do that for you. With all my heart.

And I know that you're probably thinking that it didn't work for all those others because they werent determined enough, or they didnt follow the directions closely enough, or they didnt try enough, or they just "didn't get it" clearly enough .... somehow they all failed. But you won't. You'll get it, and you'll work it and you'll make it work, and everything will be fine fine fine ....

This is one of the many things I hate about these bullshite programs. First they take your money. Then they take your self-esteem. Then they whittle away at your identity, as you go from someone who knows they can accomplish whatever they want badly enough and work hard enough at, even with this mystifying little criminal enterprize of an illness. Then they take your hope.

And that last one is really, really hard to get back, because it takes trust with it.

So give it a try, trim your sails a little going in, accept that it might not work, and do it with all your being.

Get a book on meditation and save yourself the trouble. Dnrs doesn't work to cure the illness

Or as @frozenborderline suggested, search out some meditation tapes on YouTube, everything from Buddhist to Indian to Nichiren Shoshu to Tibetan .... there are dozens and dozens of forms, styles and intensities. They can calm the mind, soothe the nervous system, and potentially really help. But they wont cure you. They'll just give you a little leg up to The Next Thing and a little more energy and focus with which to do it....

 

[frozenborderline]

as @frozenborderline suggested, search out some meditation tapes on YouTube, everything from Buddhist to Indian to Nichiren Shoshu to Tibetan .... there are dozens and dozens of forms, styles and intensities. They can calm the mind, soothe the nervous system, and potentially really help. But they wont cure you. They'll just give you a little leg up to The Next Thing and a little more energy and focus with which to do it....

Yeah to be clear I don't mean that meditation can cure you, but that it may help cope and it's more time tested and less of a monetized, opaque scam than dnrs


There are some studies where very very advanced mediators changed their body temperature and metabolism quite a lot, but this isn't the norm and the mind over body thing is quite oversimplified in New age versions of buddhism. If you go to the original source I don't believe tbe buddha even cured his own physical illness with meditation although some buddhas did perform supernatural feats a lot like healing themselves or others. He had chronic back injury of some kind and also died from contaminated food.

 

[frozenborderline]

By the way , I'd be interested in having someone who was harmed by dnrs on the podcast

 

[YippeeKi YOW !!]

They can calm the mind, soothe the nervous system, and potentially really help. But they wont cure you. They'll just give you a little leg up to The Next Thing and a little more energy and focus with which to do it....

Yeah to be clear I don't mean that meditation can cure you,

No, I don't think that anyone who read your post would come away with that impression. You and I see it about the same way: it may soothe, it may help incrementally, but it definitely wont cure. At least it hasnt so far that we know of ...

I'd be interested in having someone who was harmed by dnrs on the podcast

Beyond the harms I listed of loss of money, loss of self-esteem, loss of hope, loss of trust, I'm not sure that any harm extends to seriously deteriorated mental health or actual physical harm, but who knows?

 

[frozenborderline]

Beyond the harms I listed of loss of money, loss of self-esteem, loss of hope, loss of trust, I'm not sure that any harm extends to seriously deteriorated mental health or actual physical harm, but who knows?

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.

In fact what seems harmful about it is that it may work temporarily. It's not like normal meditation where you focus on living with reality and sitting with sensations and your body, rather its like some form of self brainwashing where you convince yourself to ignore threat responses sent by the body or brain.

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

Even things like meditation which are not based around ignoring reality , can have negative side effects and all serious meditation teachers know that, and that's why they encourage having a teacher and not trying to teach oneself advanced visualization techniques or anything like that ...

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