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

[xena]

It's been awhile since I posted anything, and I've learned a lot. A member reached out to me recently to ask more about my experience with brain retraining, and I wrote quite a bit of a response, so I thought I'd share it here as well in case it can be useful to anyone else!

Here it is:

After three years of trying many different ones, seeing what worked and what didn't, and talking with experts about the research, I have come to these conclusions, which I am always tweaking as I learn:

You do not need most of the stuff they teach you in DNRS and other programs. I say scrap the stuff that's upsetting you!! Your life is hard enough as it is! The intended purpose of the visualizations and "rounds" and all the hubbub (or at the very least, the thing that makes these WORK for some people) is that it gets you to start DOING slightly more than you're currently doing. That is what allows people to get better. Plain and simple. Let me explain.

This does NOT mean I'm suggesting simple "graded exercise." Normal Graded Exercise Therapy (GET) for ME/CFS usually can't account for the complexity of the illness, and can obviously make people worse because it can lead to them pushing themselves too hard. A better name for the practice we're aiming for might be Graded Exposure Therapy, which is what is used to abate anxiety. One of the biggest breakthrough I've had in getting better is recognizing that although CFS is not a psychological illness--it's very physical (obviously)--it is created and un-created the same way anxiety is. They are the same processes.

I'll tell a story to illustrate. A year and a half ago I was 27 and still mostly housebound and single with no friends in the area (I had to move from MN to TX where my parents lived when I became ill). So I had not left the house to interact with humans in a very long time. I decided I wanted to start practicing little ways to "dip my toes" in the dating and social world, in ways I could. So I got on dating apps and for about 3.5 months, all I did was chat with people online. Leaving the house to go on a date was WAY beyond my scope; I did not think I would get that far until I was much healthier, maaaany months or more likely years down the road.

But all that practice talking to people online gave me confidence over time, and eventually I did go out with someone. We met at a pub a quick 5 min drive from my house, and he had dated someone with ME/CFS, so it felt less scary if I needed to rush out because of a crash. But I did it! We chatted for 3 hours! No crash. This was completely new territory for me, I had not even thought about doing anything remotely close to this since getting sick. And here's what happened when I was at that pub:

My subconscious brain looked around at my surroundings, took in all the context of the situation--I am with a stranger, I am on a date, I'm in public, I'm without my backpack full of meds and emergency "crash" equipment, I drove here, I'm without my parents, etc.--and it took note of the state of my body, which was OKAY, no symptoms! And then it took notes on all of that, and changed its predictive coding just a little bit, because it realized, "We can do this apparently."

After that, I kept going out slightly more often for slightly longer and kept meeting more people and eventually ended up in a relationship that really pushed me forward because of the increased levels of activity that led to. I am doing better than I ever have since getting sick, and I have unlocked the process for how to get better: get myself out of my normal context, into a context where I am motivated to engage in new activities, and do this gradually, while resting in between so I don't push too hard.

Let's break this down:

1. Get out of your normal context: The problem with being in the same place all day every day (your house, your bed, or just A bed, etc.) is this: Your brain works based on predictive coding, MEANING, your brain is constantly creating and then updating its model of the environment. This is to create efficiency. If it treated every new bit of sensory input as completely new every time, you'd be overwhelmed. When something in the environment contradicts your mental model, your brain re-calculates and updates that model, which changes the way your brain (and therefore body) responds to the environment. When you stay in the same environment every single day with the same patterns, you fail to give your brain the opportunity to challenge its assumption that "exertion always leads to crashing."

2. Get into a context where you are motivated to engage in activities that are slightly outside your envelope: My story would not have turned out well if I had not been motivated to start dating. My thought was, "I'm 27, I never leave the house, if I don't get on these apps now, I might never get the chance at having a family." I was very motivated. What's more, when I met someone I liked, I was very motivated to hang out with them in person--romantic attraction is a super strong motivator! This will be one of the most challenging things you've ever done, because it will not come without its ups and downs and crashes and adjustments--so you need to find something you're very motivated to do. For me it was getting in a relationship. Now I'm focusing on career goals and sports. Maybe for you it's swimming; maybe it's cooking. Whatever it is, it needs to have a physical aspect. (If you're motivated to do computer programming, that won't help as much because you can still do it in bed without doing anything physical. Doing physical activity is what your nervous system believes is dangerous, challenging it with physical activity is the only way to change its predictive coding.)

3. Go gradually and rest in between: Some people can take big leaps. Most people can't. Go slow, listen to your body, but not so much that you're in total submission to it. Rather than seeing how my body FEELS, a good rule of thumb for me is asking myself, "Have I been doing a lot these past few days or mostly laying low?" If I've been doing a lot and my body feels shitty, I'll rest. If my body still feels shitty but I haven't really done much, I'll say, "Okay time to violate my brains expectations!" And I'll go do something. For you, maybe you start as slow as sitting on the edge of your bed for a few minutes. You want to challenge yourself to go slightly outside your normal envelope, and then rest. Keep doing that until your envelope has increased, and then take the next step. If you're extra sensitive due to Covid right now, go extra gently.

The good news is, you don't need visualizations or memories to do any of this! The reason these things work for some people who do these programs is because they believe so strongly that the process they've been taught will work, that their new confidence allows them to try new things and put themselves in new situations that they would have previously avoided. Avoidance is the best way to stay exactly where you are, or even get worse.

You just need motivation. Find that thing that motivates you.

hi @mbunke , i thank you for sharing- i have much in common with your experience and have improved significantly carrying it out in my own way (along with lots of dietary changes, herbs, spirituality, brain retraining, appropriate exercise etc). finding a healthy relationship has been a significant motivator for me as well.

however, i want to add that visualization alone has significant benefits for me in getting me out of my wired but tired physiology *whenverver i do it* and restoring energy when i am very fatigued or symptomatic in other ways. i believe it engages the brain regions that are impact and are involved in perpetuating this illness. (on a physiological level- no blaming here) also, brain retraining did have a HUGE impact on my very intense mold hyperactivity. so please don't discount this part. at least this is true for me.

i wouldn't push these programs on people but i want to be clear that it is available for those who resonate.

 

[frozenborderline]

Neuropathic pain, is by its very name, a neuro issue, not a physical one, altho the pain is physical. Again, the genesis is neuro. And tricyclic anti-d's are truly horrible.

Neurological doesn't equal psychosomatic. Neurological issues are physical issues. I am confused by the distinction you're making. Brain surgery is a physiological rather than psychological treatment for example.
Neuropathic pain is not psychological. So the point still holds.

As for the rest... those are all documented treatments for those things. They are literally standard treatments. I didn't say they were good long term treatments but it's a fact that benzos stop seizures. Are you saying benzos don't don't stop a seizure short term ? Like that they cannot be used in an emergency to stop a seizure ?

 

[frozenborderline]

PS .... dementia is a neuro issue?

Damn. I thought it originated in, you know, the brain meat ....

Brain issues are neuro issues ?

 

[frozenborderline]

Just sticking in my oar, since I can't resist. Neuro stuff is physical because the brain and nerves are just hunks of meat. Some of them are pretty tiny hunks of meat, but still very material stuff.

Psych stuff is where we start to wander into the non-physical realm. How we think of neuro interacting with psych is where things get really tricky. Psych meds works on both neuro and psych stuff, just to make it extra confusing. Where and how these interface isn't always so clear.

I tend to hardcore materialism myself, so I believe that all thoughts and mind-stuff are ultimately just neurotransmitters squirting around in the brain meat. But, in terms of healthcare and humans understanding ourselves, I think it's useful to be able to draw a line (however dim) between psych issues like depression and neuro issues like dementia.

Yes , I wasn't arguing for psych treatments, my point seemed simple to me, I don't understand the argument. So called psych meds work on ailments that are physical too, and are not considered psychiatric. From seizures to neuropathic pain ... many other things too , what about benzos for muscle spasms ? And the brain is an organ. So neurological means physical often or usually

 

[Iknovate]

@wabi-sabi Nail on head. Brain retraining efforts take a tremendous amount of mental energy. It's just not sustainable for us.

The closest I came to move the needle was with Joe Dispenza retraining but my already too short sleep was taking a beating.

Any discussions I've missed on related sleep studies? I keep wanting to associate excess cortisol or bad management of same with recovery issues.

For 3 years with a monitor I may have hit recommended sleep (which varies) maybe 3 times, total

. I nearly always hit strain levels (that generally happens after showering). My reports always state:
"Strain was optimal. Sleep could use improvement."

 

[frozenborderline]

Gadolinium is a toxic metal, and probably shouldnt be used on humans, but try to tell that to the guys who develop and sell the PET and CT scan systems, or the Drs who've found them to be the easiest 'read'. As usual, it comes down to " ....screw the patient, this is easier for us to sell / use / interpret ...."

If you can get some EDTA, that and a mix of regular calcium and magnesium should speed things up. Or you could go to a chelating Dr and do some chelation therapy with the same stuff, but IV, which is more effective

Qell, it's complex bc while it can be toxic it's it's hard to see some things without it.

Anyway, I thought edta was mainly used for lead chelation. Are you saying it helps gadolinium too ? I didn't know that. When my carer researched gadolinium chelaters briefly she didn't find anything besides something experimental not on the market yet.

I'm happy to try anything, even risky , if there's some evidence it helps. This is not good.

 

[frozenborderline]

Yeah, these are probably the same docs that say that XYZ medication " ..... couldnt possibly cause those side effects, I've never heard of that, no other patient has complained about that ....." while you're writhing in obvious agony on his exam room floor ....

EDIT ... for one of those typos that totally changed the meaning of the word, and not in a good way ...

Right. But then on the other hand I've found that the other extreme, there are problems ... like in alternative medicine. So it's hard to find info that's balanced without a lot of research. Which is hard to do while sick

 

[YippeeKi YOW !!]

Neurological doesn't equal psychosomatic.

I didn't say it was.

Neuropathic pain is not psychological.

And again, I didnt say it was.

So the point still holds.

Not if you interpreted my post the way it appears that you did. Reinterpreting what I actually said into something that I absolutely didn't say doesn't change the validity of the premise .....

EDIT ... another attempt at clarity ...

 

[YippeeKi YOW !!]

Brain issues are neuro issues ?

And again, I didn't say they were. I was quoting and responding to something that another poster had said.

 

[YippeeKi YOW !!]

I'm happy to try anything, even risky , if there's some evidence it helps. This is not good.

Start with the easiest, safest options, which are oral calcium and magnesium, separated enough so they dont bump into each other, absorption-wise, and keep your water intake high. If I can find, or think of, anything else, I'll tag you.

I remember the misery of recovering from gadolinium and it took for-flucking-ever .... but I didn't know about calcium and magnesium dosing then ...

 

[YippeeKi YOW !!]

So it's hard to find info that's balanced without a lot of research. Which is hard to do while sick

I know. I struggled horribly to find my first foothold out of being bedbound for so long that I could barely remember who I was before that. It's still grindingly difficult on most days, particularly reading with any comprehension and retaining anything worthwhile ....

 

[frozenborderline]

Again, no. Benzos dont help with glutamate issues, they actually make them much, much worse, nor do I think that glutamate issues are a primary or even secondary source of ME/CFS issues, probably tertiary, if even that.

Tolerance is a problem with so many meds but this doesn't mean they don't work short term, which was my only argument, not that they can't cause tolerance. Benzos certainly acutely mitigate the negative effects of glutamate excitotoxicity. There is a specific study where animals poisoned with domoic acid, a cyanobavteria toxin that causes death via glutamate being higher in the brain, are protected from dying when administered diazepam. This is an example of a benzo treating a physical problem. Cyanobacteria induced neurotoxicity is not psychological. The brain is an organ. This is pretty much a basic truism, if we can't agree that neurological issues that aren't caused by psychosocial stress, like a poison causing brain death or a seizure which is non psychogenic, are physical problems, then we are just having totally widely different ontologies and first principles here and will never agree on anything , which is strange , bc I thought we were agreeing that dnrs is harmful and abilify helping some mecfs patients doesn't mean our disease is psychogenic. I don't know how we ended up at arguing about whether benzos treat physical disease ever. This isn't an argument on whether they are good btw. And I have physical symptoms that have been treated by benzos, like involuntary muscle spasms post surgery. The point isn't whether they cause tolerance or work long term. The standard or goalposts were about proving there are physical problems which *so called* psych meds treat. I mean to show that psych meds treating physical problems means nothing about the problems being non physical, because meds don't fit in neat categories as if the "psyche" is some distinct thing from the body they are treating. They work on the brain and often the body . There are serotonin receptors in the gut for example. Neurotransmitters are never just in the brain. This is all very messy.

Benzos may initially help patients suffering from excess glutamate because of their action on both GABA production and GABA receptors, but even as the soothing waves of HUGELY artificially increased GABA make the patient feel better, the action of the benzo is fiendishly down-regulating receptors, GABA production, and playing merry hell with everything else. After extnded, or smetimes even really moderate use, when the patient sstops the benzo, his / her newly remodeled system has no way to deal with the increased glutamate, and goes into some pretty unpleasant withdrawal issues.

the bolded part is what we are agreeing with. I have NEVER claimed benzos are a good long term treatment. I am not trying trying promote benzos. I am saying saying the psych med distinction is ridiculous, meds are messy and work on multiple neurotransmitters and parts of the body and different mechanisms. Almost any so called psych med probably has physical effects that have nothing to do with purely psych disorders. I don't know in this part where we are even disagreeing. I said benzos help TEMPORARILY. if the standard is not causing tolerance you could say pain meds don't treat pain even though it's a basic fact/common knowledge that they do.

And again, the effects of CNS / brain activity are the cause of tremors

the cns and brain activity is neurological. Unless you are saying 4hat tremors are purely psychosocial caused

Actually, no. The physical expression of a seizure is, you know, physical, but the genesis of that seizure is in the brain, with misfired electrical signals and temporal lobe / hypothalamus issues.

the brain is an organ. It is physical. It is not made of spirit , but of matter , living matter , and is part of the body. Hence, a seizure , or at least a "non psychogenic seizure" is physical and not a psych disorder and we do not treat it as if it is psychosomatic. We do not prescribe counseling for seizures as a treatment as far as I know , but since they are a physical disease, we treat them with meds that address physical problems.

Neurological problems are physical.

A benzo causing a non psychogenic seizure to stop is for physical reasons, not proof that the seizures are psychogenic, and no doctor or scientist believes that that would be proof of the seizure being psychofenic bc they all know drugs don't fit into neat categories where they only treat the psyche and not the body somehow , if they are psychiatric meds.

And again, fluvoxamine can help with covid, and benzos help routinely with non psychological muscle spasms.

 

[frozenborderline]

I didn't say it was.

And again, I didnt say it was.

Not if you interpreted my post the way it appears that you did. Reinterpreting what I actually said into something that I absolutely didn't say doesn't change the validity of the premise .....

EDIT ... another attempt at clarity ...

I'm not trying to interpret your post differently. I am trying to engage wirh it in good faith. I am confused that you are saying brain issues are not physical issues. I said that benzos can treat physical issues and that amitryptiline can treat neuropathic pain, which is neurological and physical... not psychogenic. My initial claim was only that so called psych meds can treat non psychological illnesses, that that can treat physical illnesses.
Do you disagree with this and why?
At this point I'm confused if this is a semantic disagreement and i very much don't understand any distinction you are making between neurological and physical. With neuropathy the nerve fibers are physically different than in people without neuropathy, for example. How would it not qualify as a physical, non psychosocial illness ?

Maybe we solely have a semantic disagreements, one I'm not trying to perpetuate, but I am so confused. I said only that benzos can treat physical problems and i gave examples of that. You then said either benzos don't work long term, which is not something I disagree with but wasn't anything to do with my point , or thay the problems were neurological not physical. Neurological problems are physical, especially when they're not so called "functional ones" (a category I'm skeptical of but that's another discussion). So if benzos can cause short term acute relief of these neurological symptoms, what do we disagree on , and why?

 

[frozenborderline]

And again, I didn't say they were. I was quoting and responding to something that another poster had said.

The question mark I added may not have been clear. I meant that brain issues are neuro issues, period. I only added a question mark to indicate my confusion as to why someone would say they aren't or differentiate them.

 

[YippeeKi YOW !!]

A benzo causing a non psychogenic seizure to stop is for physical reasons, not proof that the seizures are psychogenic,

Without going into all the re-interpretations in your post of what I said, I'll just say that I never said that seizures were psychogenic.

For clarification, psychogenic means having a psychological origin or cause rather than a physical one. That is NOT what I wrote.

With all due respect, I've done my best to communicate with clarity, but you seem hell-bent on pushing your point, even if you have to change or reinterpret what I actually said, so, again with all due respect, I cant keep this up. I have limited energy and brain resources, and I need them for other things.

You believe what you believe, I believe what I believe and apparently, never the twain shall meet. Even when they're basically in agreement. It's an odd conundrum.

Peace out ... feel better ....

 

[frozenborderline]

Here:
"BENZODIAZEPINES. The benzodiazepines are some of the most effective drugs in the treatment of acute seizures and status epilepticus. The benzodiazepines most commonly used to treat status epilepticus are diazepam (Valium), lorazepam (Ativan), and midazolam (Versed)"
https://www.aafp.org/afp/2003/0801/...es.-,BENZODIAZEPINES,, and midazolam (Versed).

Benzos treat seizures. And I'm not referring to the more controversial non epileptic seizures which are considered psychogenic, although i don't necessarily agree. They treat plain old epileptic seizures.

So called psych meds work on a variety of physical conditions. This is just one example

 

[frozenborderline]

Without going into all the re-interpretations in your post of what I said, I'll just say that I never said that seizures were psychogenic.

I know, that's why I was confused. You didn't say seizures were psychogenic . But you said to provide examples of psych meds treating physical conditions.

So I provided benzos treating seizures.
Then you said seizures are neurological, not counting as physical. Then I was confused. Bc an epileptic seizure is physical and neurological stuff happens in the brain which is physical

With all due respect, I've done my best to communicate with clarity, but you seem hell-bent on pushing your point, even if you have to change or reinterpret what I actually said, so, again with all due respect, I cant keep this up. I have limited energy and brain resources, and I need them for other things.

You believe what you believe, I believe what I believe and apparently, never the twain shall meet. Even

We both have limited 3nergy , and I don't even remember how this argument started. I wanted to clarify what I said bc I felt misrepresented and confused... at this point point two people with me/cfs who initially agreed about the main thing in the forum i don't don't know what we are arguing about..
We both hopped in the thread to criticize the main dnrs stuff, we were agreeing,, and then we somehow got in what seems to me like a very semantic , small differences argument or discussion.

I do know that I sometimes get confused and upset when i feel that what I said was misrepresented. I never said benzos are good long term treatment. I used them treating seizures as an example of the fact that psych meds aren't limited to treating psychological illness but can treat physical illness. Which proves people wrong when they say abilify helping some me/cfs patients means the illness is psychogenic.

This point matters to me to make clear since it's not just to respond to you, it is for everyone on the forum to understand. Psych meds don't simply treat psychillness, there are no neat boxes like that in the reality of how drugs work in the body. That clarification is thus really important to me.

 

[frozenborderline]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4436692/
This study shows benzos treating domoic acid poisoning, or protectingagainst the worst effects of it. Which is a physical problem.

 

[Living Dead]

@wabi-sabi I agree with that interpretation. I wish I could get these amazing meds/hormones to everyone. I'm not sure what I would do in your situation. Do you think the process I laid out could be attempted in very small doses? Say you're passionate about film, you try watching 5 minutes of some of your favorite film or film critics per day and see if it does anything and increase from there or something like that? I'm honestly asking your opinion if you think that would work, not trying to push you.

Literally the definition of ME is that this does not only NOT work, but makes the condition worse.

 

[YippeeKi YOW !!]

Literally the definition of ME is that this does not only NOT work, but makes the condition worse.

Hallelujah !!! Totally, completely, absolutely right .... it's just one of the many ways these 'programs' are so devastatingly damaging and potentially dangerous. Even, if taken to the extreme expression of their effect, lethal ....