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

[Tella]

Hi does anyone care to share their dvds with me for some time (DNRS)? If they don’t want/like them or even if you do... thanks

 

[YippeeKi YOW !!]

Ester Crawley's "research" had CFS patients considered cured even though the scores got worse in the study. That is just the tip of the iceberg. No placebo, no blinding, patients choosing their own trial arm. Conflicts of interest that weren't revealed (study member a consultant for an insurance company). The results of the study were used to deny CFS patients disability. Crawley still maintains the study was fine and her daughter used it to cure herself of CFS

Totally, completely, wholeheartedly agree.

While some of these ..... uh ..... disciplines might be helpul in terms of dealing with the day-to-day effects of actually living and coping with ME and its inevitable effects (tho I'm not sure how many of them would qualify), as a curative, they're useless. Unless you don;t have ME, in which case, no penalty, no foul.

You might as well keep telling yourself that your symptoms are all in your head as an aggressive cancer eats its way thru your system. Clapping for Tinkerbell won;t help.

This is potentially dangerous, cynically extortive stuff. And the best part about it ??? If it doesnt work for you, it's your fault, not the program's, which is perfect and therefore, blameless.

Brill !!!

If I can find some of the scientific disclaimers that I have somewhere, I'll post them here.

When someone is trying to make a scientific point , it's better if they argue the details with quotes from the literature rather than just link like thirty studies. The latter tactic may be intimidating or confusing to fellow patients, esp those with limited cognitive energy, but would never convince a scientist

Again, I totally agree. The first thing that popped into my head as I scrolled down the several pages of links and articless was that you can't amass, collect, catalogue, ad the post this much info and actually have ME.

Or expect those of us who do to be able to deal with this mountain of .... stuff. Particularly when some days reading a cereal box is challenging.

This issue and the Gupta Program et al keeps popping up from time to time, like the many headed Hydra or Jason and the Dragon's teeth, and there's no way to dispatch it permanently.

You asked for honest opinions re DNRS, Neural Retraining, etc, and I've given you one, without fear or favor, as have others here.

That said, the bottom line (and there always is one) is that if it helps you, that's all that matters . Tho I honestly don't see how .

I'll see myself out now .....

 

[Tella]

Lol...until one tries one can’t say yes or no.
Damage to the Brain by infection, stress, toxins etc is a well documented thing. So is retraining brain neurons. Won’t post no links etc as indeed I have a brain fog. I sense if I get better by these programs and say it here everyone will say I never had ME....lol....so funny.... watch this space.
It’s not all in the head. It’s all in the brain (it seems, not proven but does help many). And yes mind can help cure one of other illnesses too...well documented thru history. At least get better if nothing else.

 

[YippeeKi YOW !!]

Lol...until one tries one can’t say yes or no.

I tried Neural Retraining several years ago.

And I say absolutely, unequivocally NO ....

 

[Tella]

...other stuff too.

I tried Neural Retraining several years ago.

And I say absolutely, unequivocally NO ....

im sorry you feel this way
But there’s no harm anyone trying. In fact it will make any situation more manageable so everyone can choose for themselves

 

[YippeeKi YOW !!]

But there’s no harm anyone trying.

I didn't say there was.

This thread's title posed a question, I answered based on my experience, and the last thing I said in my post was:

That said, the bottom line (and there always is one) is that if it helps you, that's all that matters . Tho I honestly don't see how .

But I do worry about really deeply ill ME patients who use this instead of other potentially more helpful, better researched and scientifically supported treatments that might be available to them, tho those are hard to find, too ...

Rock on ....

 

[xena]

i have done it for 3 months to address my mold sensitivity. during that time, my fatigue, brain fog and detox improved (20%?) and mold sensitivity went away. enough to make a substantial improvement in my quality of life. in my opinion, it definitely helped me but wasn't the "cure" for me. i look at it as an another treatment, adjunct to other approaches. Yes, it helps me PEM.

 

[tttttttt]

If anyone has a copy of that text file of the gupta program in spanish floating around and will share it, please send me a PM.

 

[Artemisia]

@mbunke Do you have any updates on your progress with these programs? Thank you.

 

[Abrin]

My whole problem with all the the limbic retraining programs out there is how much they are charging people for the information and how tight-lipped they are about the techniques.

When talking about these types of programs I've seen people say, 'Oh, they are ONLY charging $200+ and that is reasonable price.'.

Which kind of blows me away because when you are living on the poverty line because you aren't working than $200 is not a reasonable price. An unexpected $200 bill can cause you to not be able to eat or pay rent.

I mean, I totally understand that the people running the programs need to make a living but in the 'freemium' style world we live in today I got to admit it kind of just baffles me.

 

[xebex]

My whole problem with all the the limbic retraining programs out there is how much they are charging people for the information and how tight-lipped they are about the techniques.

When talking about these types of programs I've seen people say, 'Oh, they are ONLY charging $200+ and that is reasonable price.'.

Which kind of blows me away because when you are living on the poverty line because you aren't working than $200 is not a reasonable price. An unexpected $200 bill can cause you to not be able to eat or pay rent.

I mean, I totally understand that the people running the programs need to make a living but in the 'freemium' style world we live in today I got to admit it kind of just baffles me.

I do believe that the creators of the programs need to be paid for their work and that if you recover the programs are worth it, however, it is an outdated mode when you consider people like Remit Sethi (life coach guru guy) offers all his content for free on his website and the paid content is just the organized courses to make life easier. Problem is people with ME really need the easy option.

I tried DNRS, and while the principals are helpful the actual course made me considerably worse and really messed with my mental health. It is not a simple process like they say and sticking to it regorously as they also say does NOT work for me. However, understanding how the limbic system plays a part in this illness has been very helpful to me, i kind of created my own version and saw improvement for about 6 months but sadly, still not enough and I have since regressed.

The theory is valid, the practise is VERY difficult, near impossible for most people, even the most devout believers - like i was (and to an extent still am). I believe in it because i have seen how it helps me and others, but it is also insanely infuriatingly, virtually impossible to uphold.

 

[tttttttt]

My whole problem with all the the limbic retraining programs out there is how much they are charging people for the information and how tight-lipped they are about the techniques.

When talking about these types of programs I've seen people say, 'Oh, they are ONLY charging $200+ and that is reasonable price.'.

Which kind of blows me away because when you are living on the poverty line because you aren't working than $200 is not a reasonable price. An unexpected $200 bill can cause you to not be able to eat or pay rent.

I mean, I totally understand that the people running the programs need to make a living but in the 'freemium' style world we live in today I got to admit it kind of just baffles me.

It's 250$, and you can return DNRS after 6 months and get a refund if you didn't like it. No problem.

 

[mbunke]

@clairesam Sorry for the delay, I didn’t see this question for some reason! Here my update for everyone:

It has been exactly one year and I’ve tried DNRS, ANS Rewire, the Curable app, and several other bits I’ve collected here and there from similar “neural retraining” sources. With DNRS, I immediately noticed (since using happy memories is a huge part of the program) that I could not find a memory to dwell on that only brought me happy feelings, because every memory and every person in my life was associated with stress. This was a huge revelation because it showed me that my brain was really stuck interpreting many things in my life traumatically (I'm defining trauma as any sort of stressful experience that keeps the nervous system in fight or flight). I did some research and decided EMDR could be useful in moving these memories out of the fight-or-flight parts of my brain. I am now seeing a therapist who I will start EMDR with very soon, but to my surprise, the "happiness" in my memories/associations has started to come back already, and I believe it's from doing work on self-compassion (Kristin Neff), forgiveness (Fred Luskin), mindfulness (I know you're sick of hearing that lol), and shame (Brene Brown).

@xebex I couldn't agree more that DNRS demands way too much of PwME. It was primarily designed for people with Multiple Chemical Sensitivities (as you know), who do not usually have the amount of fatigue we have. I believe MCS is similar to MECFS in that it involves post-traumatic dysautonomia, but MECFS is almost infinitely more complicated BECAUSE the initial trigger in MCS is simple: a chemical/organic toxin exposure set their bodies into dysfunction. For us, it could be so many different kinds of triggers: toxin, virus, bacteria, surgery, pregnancy/labor, accident, general mental stress, psychological trauma, structural issues, brain/spinal lesions, etc. Whatever the initial triggers were that made you sick will determine what you need to address to get better. For me it was: connective tissue disorder (hEDS) which led to Chiari malformation, scoliosis, SIBO, and other stressors on the nervous system (I don't think these are usually enough to cause issues on their own until additional stressors come along), long-term mold exposure, and longterm mental stress. I am now strongly of the opinion that using brain training alone is NOT a solution for 99% of PwME!! There are simply too many stressors on the body, and trying to "retrain your brain" while those stressors remain is like mopping the floor while the sink is still on. I agree the best way to go is to learn what you can from these brain retraining sources and use them in they way that's best for you WHILE you address each stressor.

So I saw little to no progress in my physical symptoms from taking a purely brain retraining approach this past year. The only thing I can say is my headaches seem to have gotten better and there may have been a tiny improvement in fatigue that didn't last. But like you, @xebex, I believe the theory is valid! Not only valid, but I still believe this trauma/neuroplasticity model is THE explanation of MECFS. The question is: How do you use that to get better then? ANS Rewire takes a much more holistic approach than DNRS, and is specifically for MECFS and Fibromyalgia. However, it drove me INSANE that Dan promises such quick results (50% better in 6 months!) and although I think his program can be useful, if you have a good functional medicine doctor with a knowledge of ME, you're probably already doing most of the things he suggests (except the actual "rewiring," which he spends very little time on and is not that profound).

So here's what I'd say: Practicing these techniques for the last year has not improved my physical state much, BUT it has opened my eyes to so many INCREDIBLY important things that I think will be necessary to my recovery, including:
1. My brain truly is stuck in trauma (unable to think of 'happy' memories/loved ones without feeling my nervous system triggered)
2. I am incredibly out of touch with both physical sensations and my emotions
3. I have a host of coping habits that put an enormous amount of stress on my body including: lack of boundaries, perfectionism, anger, need for control, avoidance of pain, etc.
4. My entire illness can be categorized as dysautonomia, or an inability to regulate my autonomic nervous system. I even came up with my own name for MECFS since the current names suck: Post-traumatic, exertion-intolerant dysautonomia (PTEDS)

Just because I have these issues, does NOT mean you do! You have your own cocktail of stressors that neurplastically changed your NS, and the goal is to figure out what they are and address them, and I think including neural retraining techniques is hugely helpful in that process.

So my current game plan is this:
1. Continue mental/emotional work including self-compassion, forgiveness, mindfulness, etc. with therapist
2. Address SIBO with a nutritionist (dietary changes, antimicrobials, etc.)
3. Use EMDR with therapist to allow my brain to "unlock" the trauma (this is highly researched based btw)
4. Continue to use Curable, DNRS, and similar neural retraining modalities to change the way I process things
5. Continue medication and supplements that help me (progesterone, T3, T4, LDN, lexapro, propranolol, magnesium, B12, D, iron)
6. Keep my house clean of mold (discovered it in air vents over the summer and had them cleaned and got an air purifier) - did notice improvement in symptoms after this

@Abrin I agree, and it is infuriating. Once I start getting better, I plan to put all of this information on Youtube for free because it makes me livid that it's not available easily for free. I find that unacceptable. If you want me to make another post summarizing what each of these programs actually contains, I can.

@tttttttt I have the Spanish copy of Gupta, message me your email and I will send it to you!

PS - I'm sorry for anyone who tried these programs and it hurt their mental health. I understand that. If it is discouraging you more than encouraging you, don't do it. Wait until you find something that works better for you or until you feel like you can have a mindset that allows you to do neural retraining without getting discouraged (that's been work for me). Most importantly, DO NOT push yourself outside your window while doing it! And if anyone says that's how it should work, it shouldn't.

PSS - Even if you don't have pain, I highly encourage you to check out Lorimer Moseley's work:

This will show you the science behind how the brain gets stuck in chronic symptoms, even in the absence of actual "pathology" or danger

Sorry if I missed anything/anyone! Hopefully I'll stay up to speed better on here from now on.

 

[xebex]

@mbunke thanks for your update, really interesting to you see that you have experienced very similar to me in your journey.

However i have nothing that really points to a root cause, for a long while i thought i had some spinal instablity (not CCI but something thoracic) and did a lot of mind body work on the pain, and retraining to stop the muscles spasming which i believe was so intense it was pulling on my spinal cord (a theory behind the CCI) causing brainstem issues, of course i could be wrong, but anyway, I managed to heal that pain and stop the insane cycle of spasms, but my ME actually got worse as a result because I could stand up for longer without any warning signs but would still crash intensely and have got worse since healing that issue. It is a very frustrating minefield.

 

[Abrin]

It's 250$, and you can return DNRS after 6 months and get a refund if you didn't like it. No problem.

As I explained in my post, it may be no problem if you have the extra $250 in your budget. I do not have that kind of money to spare in mine.

 

[Abrin]

@Abrin I agree, and it is infuriating. Once I start getting better, I plan to put all of this information on Youtube for free because it makes me livid that it's not available easily for free. I find that unacceptable. If you want me to make another post summarizing what each of these programs actually contains, I can.

If you ever have the time and energy to write up a summary please let me know because you'd be my new all-time hero and best friend forever. Or if you decided to start a YouTube channel let me know I'll I will happily be your first subscriber. <3

 

[mbunke]

@xebex That's incredibly infuriating, I'm so sorry. That's somewhat interesting though, do you have any theories about what might be happening?

@Abrin I will definitely let everyone on this thread know when I start making videos! Until then, let me work on putting together some kind of summary. I actually built a website at one point to help get the information out there for free, but couldn't afford to keep it running so I might just transfer the information to a blog or something just so I can direct people there when they're looking for info. I'll let you know once I've put something together! If you message me your email I can share some cool stuff with you. And @Tella I can help you with getting your hands on the DNRS content if you message me your email too

 

[xebex]

@mbunke I have lots of dietary issues, histamine gluten, sugar, glutamate and there are some oxidative stress issue too. If I am careful with my diet I can feel completely symptom free but still cannot do anything that requires sustained muscle use. So I can feel completely fine and full of energy and decided to cook dinner or make a craft with my daughter and after a set amount of time (around 20mins) my muscles will start to spasm and then I’ll have a huge neurological crash can’t move can’t speak overwhelming fatigue but unable to sleep, also just before I crash I’ll often have rage attacks. It takes 1-2 weeks to recover from this. So I have to be very limited in my activity even though I feel “fine”. To me it seems as if my muscles are producing toxins that then get into my blood stream and cause some kind of poisoning. It seems diet doesn’t fix that and I dont know where to go from here.

 

[ljimbo423]

This will show you the science behind how the brain gets stuck in chronic symptoms, even in the absence of actual "pathology" or danger

Fascinating video, thanks for posting it! I also think that chronic stress and being very easily tipped into the fight or flight mode is a big factor in the cause of my ME/CFS.

So I'm addressing both the mental/emotional aspects as well as the physical. I do think they both "feed" each other so to speak.

 

[YippeeKi YOW !!]

It has been exactly one year and I’ve tried DNRS, ANS Rewire, the Curable app, and several other bits I’ve collected here and there from similar “neural retraining” sources.

Extremely thorough, well-thought out post, and thank you for it !!!