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

[mbunke]

I am trying to get some clear information on this, so I want to make this question very specific. I am not talking about co-morbid conditions like mold sensitivity, multiple chemical sensitivity, migraines, MCAS, food intolerance, allergies, etc. If you have healed from those illnesses through brain retraining, that is wonderful but this thread is for only ME/CFS. I do not have any sensitivities, and I do not avoid any foods, chemicals, scents, etc., but I'd like to get a clearer picture of these therapies.

Has anyone who does NOT have sensitivities (except exertion, since this is the cardinal symptom of MECFS) experienced relief from DNRS or other neural retraining programs?

Please keep answers short and rate your Karnofsky Score (table below) BEFORE you did the program and your score AFTER.

Thanks!

 

[valentinelynx]

I find it a bit peculiar that you are trying to separate out symptoms of allergies, chemical intolerance, and MCAS... These are integral to the illness in my experience. I had no allergies, and no unusual sensitivities prior to falling ill, and strong sensitivity to things like fragrances & VOCs, light and sound, as well as allergic reactions to many things in the environment started at the same time as my other symptoms, including exertion intolerance. Are there ME/CFS sufferers with no sensitivity to anything other than exertion?

 

[Wishful]

Are there ME/CFS sufferers with no sensitivity to anything other than exertion?

The allergies and sensitivities mbunke is talking about are things that are also common among people who don't have ME. ME might trigger or worsen some of these comorbid conditions, but they aren't an integral part of ME, at least for the majority of PWME. I have some airborne allergies that started before my ME, and haven't worsened with ME, so I don't consider them part of ME. I don't have greater sensitivities to light or sound or environmental chemicals. Some foods that I used to enjoy now worsen my ME, but I don't consider that to be a food sensitivity, but rather that those substances now alter pathways involved in ME severity. One example is peroxynitrite scavengers.

I think her question is valid. Successfully treating one comorbid symptom of ME isn't treating ME, which is what she's asking about: the fatigue/lethargy and PEM that is specific to ME.

So, to answer your question, I'd say that I don't have any sensitivities other than exertion or chemicals that directly affect the metabolic pathways involved in ME.

 

[Pearshaped]

@mbunke
I guess you meant if limbic training/gupta stuff is working for exercise intolerance and PEM?

I've read once about a PwME who has tried it.for her it was pretty useless.


ME/CFS is not only exercise intolerance.
(see ICC or CCC for Me/cfs)
you need to meet more than one criteria for ME/CFS

 

[mbunke]

I find it a bit peculiar that you are trying to separate out symptoms of allergies, chemical intolerance, and MCAS... These are integral to the illness in my experience. I had no allergies, and no unusual sensitivities prior to falling ill, and strong sensitivity to things like fragrances & VOCs, light and sound, as well as allergic reactions to many things in the environment started at the same time as my other symptoms, including exertion intolerance. Are there ME/CFS sufferers with no sensitivity to anything other than exertion?

Yes, I definitely agree that most PwME become sensitive to things other than just exertion, but I don't have very many sensitivities except exertion, and I'm trying to find information on whether anyone has had success using neural retraining to treat symptoms like PEM and pain.

It sounds like people have used to it treat lots of the sensitivities they have developed as a result of their ME, and this helps them because these things then no longer trigger ME symptoms like malaise, but I'm wondering if it can help with the general pain, malaise, and neuro-cognitive impairment I experience on a daily basis without anything "triggering" it, it's just part of my existence. Does that make sense?

@mbunke
I guess you meant if limbic training/gupta stuff is working for exercise intolerance and PEM?

I've read once about a PwME who has tried it.for her it was pretty useless.


ME/CFS is not only exercise intolerance.
(see ICC or CCC for Me/cfs)
you need to meet more than one criteria for ME/CFS

Yes, this is what I mean, thanks for rephrasing it! It's kind of difficult to figure out how to phrase it. Yes basically, I mean any of the symptoms of ME that AREN'T triggered by something like a chemical, food, etc. The symptoms that just are there all the time, whether or not there's a "trigger." I don't avoid anything (other than exertion), but these programs seem to be for people avoiding things.

Any chance your friend who tried it would be willing to talk to me?

 

[Pearshaped]

@mbunke
this was not a friend,it was another patient w.ME.

Unfortunately i don't remember where i read it.Either on threads here on PR or elsewhere on the net.

arent there other threads about this? maybe you could find it with google.

 

[Sushi]

I don't avoid anything (other than exertion), but these programs seem to be for people avoiding things.

Any chance your friend who tried it would be willing to talk to me?

Here is someone Claudia Goodell—an advocate who started the site Race to Solve ME/CFS—who had success with the ANS Rewire program: https://cfsunravelled.com/3-decades...QDx2p4pGPUYJwL9pvGT2-lEmFZRTOqh33vvDCzPcmrCnA

 

[mbunke]

Here is someone Claudia Goodell—an advocate who started the site Race to Solve ME/CFS—who had success with the ANS Rewire program: https://cfsunravelled.com/3-decades...QDx2p4pGPUYJwL9pvGT2-lEmFZRTOqh33vvDCzPcmrCnA

Thank you!

 

[GloriaDG]

I think that if you only look for positive experiences with these psycho-behavioural programs, you will find them online (even on their own website). But I think someone should be critical and confront the positive reviews with the bad ones. So here is a bad one:
http://www.sayer.abel.co.uk/MESNORFOLK/LP.html.

Lastly, my personal experience: I'm ashamed to admit that I tried the lightning process too (before I knew better). And it just made me feel more depressed an anxious, blaming myself as if I wasn't doing it right, because the thing didn't work. I later found out a pharmaceutical drug which eliminated my symptoms. And I'm now almost recovered thanks to this drug (here is my story: https://forums.phoenixrising.me/thr...ng-response-to-cinnarizine-vasodilator.76889/).

So be careful with these programs, they could be harmful for your mental health.

 

[mbunke]

I think that if you only look for positive experiences with these psycho-behavioural programs, you will find them online (even on their own website). But I think someone should be critical and confront the positive reviews with the bad ones. So here is a bad one:
http://www.sayer.abel.co.uk/MESNORFOLK/LP.html.

Lastly, my personal experience: I'm ashamed to admit that I tried the lightning process too (before I knew better). And it just made me feel more depressed an anxious, blaming myself as if I wasn't doing it right, because the thing didn't work. I later found out a pharmaceutical drug which eliminated my symptoms. And I'm now almost recovered thanks to this drug (here is my story: https://forums.phoenixrising.me/thr...ng-response-to-cinnarizine-vasodilator.76889/).

So be careful with these programs, they could be harmful for your mental health.

Thanks so much! This is what I've found, that there seem to be only positive reviews, which is either really great or fishy, so I'm trying to find some negative ones as well. I'll look into both links you shared, and so glad to hear you're recovering!

 

[Aerose91]

I find it a bit peculiar that you are trying to separate out symptoms of allergies, chemical intolerance, and MCAS... These are integral to the illness in my experience. I had no allergies, and no unusual sensitivities prior to falling ill, and strong sensitivity to things like fragrances & VOCs, light and sound, as well as allergic reactions to many things in the environment started at the same time as my other symptoms, including exertion intolerance. Are there ME/CFS sufferers with no sensitivity to anything other than exertion?

I tend to agree with this. The MCAS and MCS came on immediately with the exercise intolerance and psych problems for me.

That said, I'm going to return to this thread later and elaborate but I have just started the DNRS program and I when I'm actively practicing, I have already seen improvement in my exercise intolerance. It shocked me. A friend asked me to help him build a shed and that should be murder for me. Plus it was in the cold.

I went anyway.

After 3 hours of constructing this in weather so cold it was forming ice crystals, I went home, took a shower and went to bed. The next day I felt heavy, muscle weakness and mild malaise. But not too bad. And it only lasted one day. That was it. I've been kind of perplexed since. I know there is something to this. However, it's hard. Emotionally. That's why I haven't been able to test this again yet- it takes some energy and courage to stay in the emotionally vulnerable place to experience the practice. I plan on trying another round this weekend

 

[percyval577]

After 3 hours of constructing this in weather so cold it was forming ice crystals, I went home, took a shower and went to bed. The next day I felt heavy, muscle weakness and mild malaise. But not too bad. And it only lasted one day. That was it. I've been kind of perplexed since. I know there is something to this. However, it's hard. Emotionally. That's why I haven't been able to test this again yet- it takes some energy and courage to stay in the emotionally vulnerable place to experience the practice. I plan on trying another round this weekend

It has been thought about if a Parkinson patient in fact could run normal and would do so if, say, a house were burning. The reason being that in PD the Dopamine system is affected, guessing that the Dopamine system is responsible for evaluations and judgements (how important a deed would be). So, the technique for normal movements, after this guess, would be intact.

Now, there is the possibility that also in ME the Dopmine system is affected and a main player - only you might damage it further if you do against its suggestions ... (but maybe you could have good luck or could do a trick?!??).

 

[Aerose91]

I would venture a guess that the dopamine and maybe seratonin systems are diminished, at least in myself anyway. I have constant cravings and low moods- these are characteristic of low dopamine. I also believe low endorphins play a role due to our inactivity

 

[mbunke]

I tend to agree with this. The MCAS and MCS came on immediately with the exercise intolerance and psych problems for me.

That said, I'm going to return to this thread later and elaborate but I have just started the DNRS program and I when I'm actively practicing, I have already seen improvement in my exercise intolerance. It shocked me. A friend asked me to help him build a shed and that should be murder for me. Plus it was in the cold.

I went anyway.

After 3 hours of constructing this in weather so cold it was forming ice crystals, I went home, took a shower and went to bed. The next day I felt heavy, muscle weakness and mild malaise. But not too bad. And it only lasted one day. That was it. I've been kind of perplexed since. I know there is something to this. However, it's hard. Emotionally. That's why I haven't been able to test this again yet- it takes some energy and courage to stay in the emotionally vulnerable place to experience the practice. I plan on trying another round this weekend

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 ). I am already starting to get better. I was taking the maximum dose of Tylenol per day for migraines, and now I'm doing 0-2 per day, most days 0.

Unfortunately, most people hear about neural retraining and think the message is "this is all in your head," (myself included, which is why it took so long for me to try it). This is not the message in the slightest, ME/CFS is not "in your head" any more than a stroke is in one's head. It's in the brain. And the brain is incredibly plastic. And this is incredibly great news because it means we can make a full or nearly-full recovery often without expensive drugs, invasive treatments, or God-forbid surgery. (Although I do believe there are people who have CCI or related issues that get so bad they do need surgery, and most people will benefit greatly from or need drugs or treatments alongside the brain training, especially the severe--I myself am doing this).

Aerose91, I'm so happy to hear about your improvements! I'll keep posting mine as well. By the way, I am a moderate-severe patient. At my worst I was bed-bound and needed to be spoon-fed. Going on 3 years with ME/CFS. Also have EDS and many other co-morbids. I also have spinal and brain abnormalities including scoliosis and Chiari.

If anyone is interested in more information, I'll post some good videos below to get started. There are many more options than just the DNRS program. (I'm doing Dan Neuffer's ANS Rewire, which is specifically for ME/CFS.)

I'm happy to answer any questions too! I'm spending all day everyday studying this stuff, and the information might as well go to use! It's hard to find people explaining the actual nitty-gritty of what neural retraining exercises look like, so I'm happy to share that if anyone wants.

Dan Neuffer's Explanation for the Root cause of ME/CFS and Fibro (he recovered from moderate/severe himself with these techniques, Watch part I, II, and III):

One (of many) powerful testimonals from DNRS program:

Sharon Wachsler shares her testimony of complete recovery through neural retraining (most people do NOT recover this fast, but it happens quite often): http://sharonwachsler.com/neuroplasticity/my-recovery-story/

 

[Aerose91]

So glad to hear of your improvement so far!

One thing I'm encountering is any time I feel it is helping me at all I have to confront the emotions of where I'm at in life and that's so exceedingly difficult for me. It makes it hard to stay diligent with it, knowing I'll have to stay in that state. Have you encountered anything like this?

 

[mbunke]

So glad to hear of your improvement so far!

One thing I'm encountering is any time I feel it is helping me at all I have to confront the emotions of where I'm at in life and that's so exceedingly difficult for me. It makes it hard to stay diligent with it, knowing I'll have to stay in that state. Have you encountered anything like this?

Do you mean it's difficult realizing how far you have to go? Or the overwhelm of having to start from scratch once you're well again?

I think addressing emotions is much harder than addressing symptoms. I'm not sure if this is what you mean but I've had a lot of trouble being patient with my progress. I didn't notice any results until very recently. I actually am not doing one hour of rounds per day, I just do it when symptoms and thoughts pop up. The one hour was too much for me, and I don't think it's necessary.

There are lots of neural retraining programs that are directly aimed at emotional things, maybe looking into some of those could be helpful if that's what you're struggling with the most? Lots of people use Faster EFT, if you simply type that into Youtube you'll find lots of stuff. Also, are you apart of any neural retraining Facebook groups? If not, I can post some great ones for you! I think it's necessary to be doing this with other people. It's too difficult to do without support. <3

 

[Aerose91]

Or the overwhelm of having to start from scratch once you're well again?

This.

To be 35 now and have no savings or income and realize all the experiences I lost is devastating to me. I've actually started taking some classes recently to work toward finishing my degree but it will be a while. In the time I've been down my friends have traveled, lived overseas, built successful companies and settled down to start families. In many ways I'm still at the age I was back then. I never wanted to miss any experiences in life and however little bit I come out of this makes me feel the incredible loss

 

[mbunke]

This.

To be 35 now and have no savings or income and realize all the experiences I lost is devastating to me. I've actually started taking some classes recently to work toward finishing my degree but it will be a while. In the time I've been down my friends have traveled, lived overseas, built successful companies and settled down to start families. In many ways I'm still at the age I was back then. I never wanted to miss any experiences in life and however little bit I come out of this makes me feel the incredible loss

That makes a lot of sense. Of course that feels overwhelming. I'm 26, and even I feel that pressure. Some of the neural retraining programs that help deal with difficult emotions are exactly the tool you might need though, I think. Dealing with emotions is incredibly hard, that's why so few of us do it. It's too daunting to do it by yourself without any help or tools, but with the right resources, I bet you would feel like you could tackle those fears, just taking one tiny step at a time! I'll post some of the things I've used and seen others use. You have so much left in life! And there have been millions if not billions who have been in the same position, who didn't get to "start life" until later, whether it was because of illness or addiction or trauma or a million other reasons. You can do this, especially with a little help!

Faster EFT:

Take a look at the more emotion-directed neural retraining programs here: http://limbicretraining.com/programs/

The book You Are Not Your Brain by Jeffrey Schwartz - The audiobook is easy to listen to and sooooo helpful for me. Game-changing. I got it for free through the library with Overdrive app.

Facebook group for people doing all kinds of neural retraining - I couldn't do it without them!

 

[mbunke]

Also the app Curable has been super helpful for me!! https://www.curablehealth.com/

 

[Pendergast]

I'm doing Dan Neuffer's ANS Rewire, which is specifically for ME/CFS.)

I'm happy to answer any questions too! I'm spending all day everyday studying this stuff, and the information might as well go to use! It's hard to find people explaining the actual nitty-gritty of what neural retraining exercises look like, so I'm happy to share that if anyone wants

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!