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

[YippeeKi YOW !!]

and yet that does not -- in a space where we don't have to defend against that cudgel--preclude the possibility that some healing potential lies in the mind, which we know is intimately connected with everything else.

And just to be totally irritating, I completely agree. Whether mind-over-matter, which would include all forms of 're-programming' can cure serious illness rather than improve our baseline condition and our QOL, is still unproven.

Christian Scientists are a good source of info in that regard, dying, as many of the gen pop does, of cancers and heart conditions and brain tumors and respiratory illnesses, just like the rest of us.

I'm sot saying that's proof, and I'm trying very hard not to constantly contradict myself here, but the fact remains that I don't personally know anyone who managed to chant their way out of a gangrenous foot or a serious cancer.

But I still experiment with a lot of things, some of which help, some of which dont, a few of which have actually made me temporarily worse. But the aggregate of the small improvements that I've been able to pull together out of things that arent supposed to be of any particular use have been heartening.

And I also still infuriate and sometimes bore some of the members here with my absiolute focus on the practice of gratitude, as a way to open channels in both the brain and the heart that, for me at least, have been monumentally beneficial.

Which is why I can't dismiss other brain-based practices out of hand. I just dont think they're the final, total, complete, answer.

And now, I'm definitely looking for the door .....

 

[niccon]

@5vforest Hello, just to clarify, I don't blame myself for the disease. In my case, and I'm just talking about me, I believe emotional distress is a big trigger, it doesn't need to be my fault. Also there's a genetic predisposition I think in my case. I used to have a relatively rare skin disease (cholinergic urticaria), so did my sister. Now my sister has multiple sclerosis and I have MECFS. My grandmother had another autoimmune disease and so did my aunt. i can't just see that as all coincidence.

 

[mbunke]

I don’t usually jump in to give unsolicited advice, but I would be very careful with these types of thoughts.

ME/CFS is a real, biomedical disease for which there is no evidence that it can be caused by negative emotions or trauma, despite the fact that some unscrupulous practitioners may say so.

Nobody should blame themselves for coming down with this illness. Just living with it is difficult enough.

Agree 100% that it is a biomedical disease. Agree wholeheartedly that nobody should blame themselves for coming down with this illness. Remember we all have this illness, we are all suffering, disheartened, hurting, and we understand what it's like. I am with you, and I'm with all of you, and I hope nothing I say is ever construed as "this illness is in your head" or "you did this to yourself" because that couldn't be further from the points I'm trying to make. I, and all of us, understand what it's like to be told this again and again until you feel like a pile of dust and no longer a human. I'm sorry if I've ever made anyone feel like this, let me clarify a few things:

1. This illness is absolutely NOT in our heads. This is more akin to a religious claim, and anyone who says this is not a scientist.

2. No one should blame themselves ever for coming down with this illness. No one wants this hell, no one asked for it, no one deserves it. If your demons give you thoughts like that, send them my way and I'll punch them in the face for you.

3. It seems obvious to me this illness is an illness of trauma. Trauma is simply stress that leads to injury. This doesn't have to be psychological trauma, although it could be. But it could also be:

• Mold exposure
• Chemical exposure
• Surgery
• Brain/spinal malformations (Chiari, instability, scoliosis, stenosis, etc.)
• Pregnancy/labor
• Connective tissue problems
• Viral/bacterial/fungal infection
• Extreme, prolonged exercise/exertion
• Etc.

It seems like most of us have one or more of these in our past, and I believe they all put stress on the nervous system in very specific ways that lead to the nervous system eventually becoming overwhelmed and saying, "That's it. You need to rest, if you don't, we simply won't have the resources to survive this anymore." For me, I know beyond a shadow of a doubt that psychological trauma was one of my greatest triggers. It can't be denied that this puts enormous stress on the body, for this there is tons of scientific evidence.

It's worth mentioning that probably most illnesses are related to stress, so I'm really not saying anything all that different about ME/CFS, except that it seems to be the pinnacle of a stress/trauma-related illness. Tons of medical doctors and researchers believe even cancer is related to stress, since epigenetics has become a field. This doesn't mean you "did it to yourself." Did you ask to be exposed to mold? Did you know the effects it would have on you? Of course not. Even if you, like me, were living your life at the speed of light and never saying no to anything and had all sorts of unhealthy habits like people-pleasing, perfectionism, etc.--that's not your fault. But the good news is you can learn how to do life differently, and there's a chance that the stress relief you will get from it will lighten the burden of your physical symptoms.

Lastly, it seems undeniable that central sensitization is at play in ME/CFS, and that is known to be associated with stress. Remember I'm using stress to mean any kind of stress--psychological or physiological--the body doesn't make a distinction.

Okay, I'm going to have to check out of this discussion for awhile so I can save my energy for working on my disability case, wish me luck!

 

[ljimbo423]

3. It seems obvious to me this illness is an illness of trauma. Trauma is simply stress that leads to injury. This doesn't have to be psychological trauma, although it could be. But it could also be:

• Mold exposure
• Chemical exposure
• Surgery
• Brain/spinal malformations (Chiari, instability, scoliosis, stenosis, etc.)
• Pregnancy/labor
• Connective tissue problems
• Viral/bacterial/fungal infection
• Extreme, prolonged exercise/exertion
• Etc

I agree completely.

I don't think this is a physical OR psychological illness. As you say, it's both, for the most part. There are probably exceptions. It's from stress on the body, weather it's from over-working, illness, viral infection, psychological trauma or anything else.

I also had significant past trauma and I first got ME/CFS in one of the most stressful times in my life, if not the most stressful. I had many physical insults to my body over the years, from bad diet, to multiple infections, dozens of courses of antibiotics etc.

So to me, it's very clear that my ME/CFS was caused by both physical and psychological stress.

Thanks for your post. It's very clear and concise!

 

[Wayne]

3. It seems obvious to me this illness is an illness of trauma.

Hi @mbunke -- This factor was one of the first "concrete" things I felt I learned about this illness, way back in the 1980's. This was before the internet, and at a time when information on CFS was hard to come by. But the stories I was able to come across all seemed to have that same feature; chronic illness brought on by exposure to some kind of stress, or combination of stresses. Most seem to start from some kind of infection, but many don't.

One story I read was of a strapping young policeman in NY, who jumped in a freezing lake to save somebody from drowning. The shock was so great, he became sick with all the hallmarks of ME/CFS, and never recovered. Other people have experienced a variety of other shocks, with the onset of their illness feeling like they "blew a fuse". This analogy is what has led me to explore just about any avenue I could find over the years that might help me "reset my breaker switch".

I've tried many of the things mentioned in this thread, including EMDR, EFT, BodyCode, as my wife has been a practitioner of all of these. She has worked with and moved on from each of these to new and more encompassing therapies. There's a constant evolution of therapies going on out there that would be important for anybody considering these therapies to give some thought to. For example, my wife thinks EMDR was a good tool when it came out many years ago. She no longer thinks it provides the type of benefits that more advanced therapies offer.

I've tried numerous types of spiritual, emotional, energetic and polarity type exercises as well. I"ve also gone to many energy type practitioners, such as cranial/sacral practitioners, acupuncturists, neurolink practitioners, etc. I've also gone to numerous practitioners that focus on structural issues. I've expounded on many of my experiences in my posts over the years, as I sought to look for a way to reset my circuit breaker.

Interestingly, out of all the things I've done--many of which gave me substantial benefit--nothing has come as close to me feeling like I was able to reset my circuit breaker than a couple of simple exercises I came across a couple of years ago. I first mentioned them in this post, and I feel more confident than ever that something very fundamental "switched" in my body once I started doing the exercises outlined in that post. It appears my switch came down to a structural issue, not spiritual, psychological, emotional, etc. I feel very grateful however, for the variety of spiritual, psychological, energy balancing techniques, etc. that I've learned along the way. They helped me immensely over the years, even though they never got to what I consider to be more of my core issue.

 

[YippeeKi YOW !!]

I don't think this is a physical OR psychological illness. As you say, it's both, for the most part

You and I have never disagreed, Jimbo, and it pains me to not be in total agreement with you now .

ALL illnesses are caused by a combo of underlying, provable, physical causations, and additional, exacerbating emotional/psychological ones.

Separating ME out of that pack as something sui-generis, as tho it's the only expression of that combination, and can be effectively treated or even cured thru neuro-limbic retraining or the Lightening Process etc, just doesn't make sense and is deeply damaging to further research and development of potential treatments.

Add in the fact that the list presented to support the position that ME is an " .... illness of trauma ...." applies to approximately 70%-plus of the population of this country, either in part or in its entirety.

I'll re-quote it below:

• Mold exposure
• Chemical exposure
• Surgery
• Brain/spinal malformations (Chiari, instability, scoliosis, stenosis, etc.)
• Pregnancy/labor
• Connective tissue problems
• Viral/bacterial/fungal infection
• Extreme, prolonged exercise/exertion
• Etc.

Something like 60 to 75% of all Americans have undergone at least ONE form or other emotional or physical trauma, or both, by the time they reach their early 20's. 25% of those progress to PTSD. It's been stated in an NCBI/Pub Med study that exposure to multiple types of victimization and trauma is extremely common among children and young adults, characterizing 20% to 48% of all the young in our society, depending on the breadth of traumas included.

Since the ME population is nowhere near 60 to 75% of the entire population of this country (if it were, believe me, we'd have already come up with viable treatment protocols and proven medications long since, and none of us would be posting here), that raises some doubts.

One of my fears is that the more we focus on the possibility of the underlying causative "mental" aspects of this illness, the louder Drs will laugh when we present in their exam rooms, the faster they'll usher us out of same, and the longer it'll take for us to be taken seriously as real patients, suffering from traceable and quantifiable illnesses that deserve, and desperately need real, reproduceable, treatment modalities.

Please tell me you don't hate me for not agreeing wholeheartedly with you on this, yes ?

Or maybe I misread your post. I'm a little out of sorts today ....

EDIT .... for clarity, like I hvae any today ....

 

[Rufous McKinney]

ALL illnesses are caused by a combo of underlying, provable, physical causations, and additional, exacerbating emotional/psychological ones.

I also agree with this basic statement, after putting on a flack jacket and face shield. Its complicated, but beings are complicated.

About 2 years before my ACTUAL massive stress overwhelming event, I was briefly seeing a therapist, and I read thru about every page of the 280 page manual regarding anxiety and Panic disorder. Wow, I read the whole book! (I don't read books, magazines, etc, any longer).

So there is this ridiculous list of categories of trauma and stress, and you can add up points (ie. your mother died recently) (check).

I had ridiculous high score on stressors- and the house burns down with your whole life and identity inside it, was not even on this list.

Then in my case-possibly add new virus exposures: kaching....way worse.

 

[YippeeKi YOW !!]

@Wayne
It's always good to see you in these threads, especially when we agree, which is often.

On this one, we diverge a bit as I've expressed above .....

I seem to be in the unfortunate position of saying things that probably are pissing a lot of people off today, altho I dont include either you or @ljimbo423 on that list, cause .... it's you guys, and y'all dont play that !!!

Like you Wayne, I've tried a couple of dozens of things, possibly adding up into the hundreds, to deal with this before I knew what exactly I was dealing with, and the final outcome was being bedbound, vegetative, miserable, and suicidal for 5-plus years, until I did my own research (which was slow and laborious, since I only had about 30 minutes a week of cognitive focus available to me at the time), and stopped relying on gurus and treatment hawkers.

And I definitely DON'T include either you or Mrs @Wayne in that statement .... I'm talking about something else entirely ....

I feel very grateful however, for the variety of spiritual, psychological, energy balancing techniques, etc. that I've learned along the way.

I totally, totally, wholeheartedly agree.

When I reference the fact that this miserable little brain-twisting nutcracker of an illness brings with it its own subtle gifts, another statement that usually brings down hellfire and brimstone on my very vulnerable, nervous head, one of the things I'm thinking of is the wide range of spiritual and mental disciplines that I've visited along the way, as well as a kind of growth that probably wouldn't have been possible for me in my previous dynamic, gregarious, happy little life ....

I'm really wiped out right now, and I know Im leaving important things out, but that's all I got for now ....

 

[YippeeKi YOW !!]

I also agree with this basic statement, after putting on a flack jacket and face shield.

You wouldn't have a extra set, would you??? I came relatively unprepared ....

 

[ljimbo423]

One of my fears is that the more we focus on the possibility of the underlying causative "mental" aspects of this illness, the louder Drs will laugh when we present in their exam rooms, the faster they'll usher us out of same, and the longer it'll take for us to be taken seriously as real patients, suffering from traceable and quantifiable illnesses that deserve, and desperately need real, reproduceable, treatment modalities.

I understand this fear and agree that it's a legitimate one.

Please tell me you don't hate me for not agreeing wholeheartedly with you on this, yes

Not at all. I could be completely wrong and stress has little to nothing to do with ME/CFS.

I respect you and I respect your opinions.

 

[YippeeKi YOW !!]

@ljimbo423

I could be completely wrong and stress has little to nothing to do with ME/CFS.

Thank you Jimbo ...

I think stress of any kind exacerbates ME, but I dont think it's the entire root cause of it, and therefore treating the mental stress can't be the total cure ....

Damn. Why couldn't I have been this concise in my original post ????

 

[Rufous McKinney]

the more we focus on the possibility of the underlying causative "mental" aspects of this illness, the louder Drs will laugh when we present in their exam rooms, the faster they'll usher us out of same, and the longer it'll take for us to be taken seriously as real patients,

Since it seems the main drug doctors throw at average patients is: antidepressants....

Has anyone simply ever said to their medical doctor- Oh thank you for that suggestion, if I was depresssed, I would go seek help from mental health experts.

Now, can you help me with my physical symptoms please?

the whole time i was trying to get help from doctors who weren't interested, they never said- well an antidepressant has anti inflammatory properties which might help reduce all this inflammation you experience>>>

 

[YippeeKi YOW !!]

the whole time i was trying to get help from doctors who weren't interested, they never said- well an antidepressant has anti inflammatory properties which might help reduce all this inflammation you experience>>>

Some do, some don't ..... you pretty much have to trust that your Dr knows which ones, as well as the potential price tag for seeing if it actually hlps your particular inflammation problems or makes them worse, or does nothing ....

 

[Cher Noreen]

I was doing meditation quite a bit but have fallen out of habit recently. It's very difficult for me to do, I did not notice a big difference, but I plan to pick it up again

This is a very old response to your post. I'm looking up people's experience with DNRS because someone recommended it and I didn't really understand what it is.

Anyway, my family and I use calm.com for meditation. I started meditating several years ago with my therapist and it was incredible. I was trying to introduce my sister and mom to the way I learned it, but want having much success. My sister had actually tried meditating several different times over the years, but has a similar experience to you - it was hard and she felt no benefit.

I discovered calm.com, particularly the 30-day beginners course, and immediately fell in love. It was exactly what they needed. So I had them try it. My sister was hooked by day 3. It's really accessible, in that the guide is really down to earth. I have an app on my phone, she prefers the website. I think they have a free trial period. And, if you happen to have kaiser Permanente insurance, it's free for you.

Anyway, just a random bit of info that may or may not be useful to you. Good luck!

 

[Luxintenebrislucet]

i wil believe it when i see the bloodworks BEFORE and AFTER.
Levels of pro inflammatory citoquines.
Levels of hormones.
Blood volume
microcirculation
Levels of atp
Everything else is a subjective experience and we dont have just " symptoms"
Our symptoms are easy to explain if you take physical tests.
I have the DNRS. Its more or less usefull for toilet paper.

 

[YippeeKi YOW !!]

I have the DNRS. Its more or less usefull for toilet paper.

.....

 

[Iknovate]

I previously searched for DNRS and hit another conversation where I learned about Gupta. I made it through all of his free sessions and was hesitant to buy the series when I learned about Joe Dispenza. I bought and am making my way through one of his series and starting on reading Becoming Supernatural.

My takeaways, clearly our challenges are real, but even in cases of actual physical damage, there is energy greater than any pharmaceutical to be tapped to improve our condition. One of the challenges with chronic illnesses is that we mentally imprint and reinforce the illness through every fiber of our being, such that no amount of good food, nutriceuticals, drugs or stimulations can overcome it. We can, however, learn to release it. And there's data to prove it.

The Unlimited series I bought was worth every penny. This is the only real hope I've had for decades.

 

[Living Dead]

I didn't read the entire thread, but I have tried the Gupta programme. Do not buy unless you are sure you don't have ME/CFS. It is a treatment for normal burnout and health anxiety.

Limbic retraining is not a treatment for ME/CFS. First of all, if the illness is only there when stressed:

• F48.0 Neurasthenia is the diagnosis most accurately conveying the nature of the illness.
• ME/CFS critera require ruling out psychological causes (or it is written in the making of the criteria that this is obvious, so not stated).
• Some ME/CFS critera require that the fatigue is "not alleviated by rest". If you can't rest because you have stress, then you don't know whether you fulfill this criteria. If you remove the stress and get better, your fatigue was alleviated by rest.

So if the illness is only there when stressed, ME/CFS is an incorrect diagnosis.

The question then becomes, can limbic retraining work even if the condition is not caused by stress? I've never seen any evidence or even indication. Those who recover from it, always report that their illness was caused by stress.

The narrative that everyone had stress before they got sick, is incorrect. Also, as noted above, most people have stressful situations.

Last, but not least, if the illness is caused by stress, how come stress hormones help? I have found stress hormones (liquorice or methyl-prednisolone) to be vastly superior treatment options. Many people on this forum seem to be on fludrocortisone. For some reason, this fact is never explained by the proponents of the stress theory.

After intensively trying every mental treatment over the course of a lifetime, there has never been any indication that they could possibly help, but a great deal of harm has been done unto me.

 

[ljimbo423]

ME/CFS critera require ruling out psychological causes (or it is written in the making of the criteria that this is obvious, so not stated).

Gupta does not say, nor believe that ME/CFS is psychological. He believes the Amygdala in the brain becomes sensitized by stress, an infection(s) or both. This sensitization, he believes, is what causes the immune system, gut, autonomic and all other dysfunctions in the body.

He believes that we contribute to this sensitization by fearing the pain and discomfort of our symptoms, (which is normal and natural) and this is where and how the Amygdala sensitization can be interrupted.

He believes stress causes the sensitization, from infection etc, and stress from the symptoms maintains it.

His program is centered around not ignoring symptoms, but not fearing, or consistently focusing on them either, because that causes a lot of stress, which perpetuates the cycle by causing more Amygdala sensitization.

I don't know why the Gupta program didn't work for you, that sucks! I guess it doesn't work for everyone.

I've been doing it for almost 4 weeks and have very noticeable improvements in most or all of my worst symptoms. My pain has gone down significantly, my energy up noticeably, ear popping in my right ear is 99% gone. IBS has improved. I'm happier and have better focus and concentration, and I continue to improve.

I have been spending 2-3 hours a day doing his meditations, visualizations and Amygdala retraining exercise. I have a ME/CFS diagnosis by a doctor and fill the criteria of ME/CFS by the International Consensus Criteria.

I've had ME/CFS for 45 years. I got it when I was 17, and now am 62. I was severe for several years, but through diet and supplements, I was able to improve to the point where I can do several hours a day of light activities.

So I'm certain that ME/CFS is a physical illness. If it wasn't, I wouldn't have improved so much through diet and supplements. I'm also convinced that it has psychological components too.

 

[hapl808]

He believes stress causes the sensitization, from infection etc, and stress from the symptoms maintains it.

His program is centered around not ignoring symptoms, but not fearing, or consistently focusing on them either, because that causes a lot of stress, which perpetuates the cycle by causing more Amygdala sensitization.

I don't know why the Gupta program didn't work for you, that sucks! I guess it doesn't work for everyone.

I've been doing it for almost 4 weeks and have very noticeable improvements in most or all of my worst symptoms. My pain has gone down significantly, my energy up noticeably, ear popping in my right ear is 99% gone. IBS has improved. I'm happier and have better focus and concentration, and I continue to improve.

May be true for some people, but as mentioned by Living Dead, I don't think it applies to everyone.

I personally didn't find Gupta helpful at all - seemed like meditation but less useful (and that doesn't really help me at all, either). But I've never been particularly stressed about my symptoms in the past. I focused on what I could do and not what I couldn't do. This worked for 15 years. I pushed through as much as possible, avoided forums like this, etc.

Unfortunately, when an injury and illness pushed me into more severe, what 'I could do' became pretty minimal and I joined here. I also realized I had been dismissive of people who had more severe conditions or different symptom clusters than I did.

I think Gupta works for a subset of people whose stresses and anxieties have either caused their illness or exacerbated it. Also, the videos of all the 'recovered' patients in his course seemed weirdly anxious with frail voices. I don't present like that at all - which is quite frustrating because even in a wheelchair my doctors think I'm fine because my voice is strong, my sense of humor mostly intact, and my energy level 'seems' fine.

Of course they don't understand the imminent PEM crash no matter how much I describe it. The stimulation of going to a doctor's appointment putting me in bed for a week or two seems incomprehensible to them, and really to me as well because I actually enjoy getting out of the house immensely and each time think maybe I'll avoid the crash…but I never do.