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

wabi-sabi

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The OP may tbink what I posted is too harsh. Maybe the OP may think or say that it's unfair to say anecdotal evidence isn't enough when we use anecdotal evidence for justifying trying other treatments
I don't think it's too harsh. Yes, anecdotal evidence should be taken with a grain of salt. But the DNRS or Gupta issue that I see is more that these programs can't work on ME/CFS based on what we know about ME/CFS.

They might work on fatigue due to social anxiety, but none of us lack motivation or confidence. Or I should say, a lack of these things isn't why any of us our sick. After being housebound for a while, a person might lose some self-confidence.

All this getting out of your normal context and our brain doing predictive coding is just psychobabble. Think about telling a diabetic that their sugar went up after eating too man sweets because their brain had coded that based on input from tastebuds. It's the sort of nonsense that would ruin a diabetic's health if they believed it. It will ruin ours too, because predictive coding (going to have to look that up) isn't what makes a person's sugar go up or cause an attack of POTS.
 

wabi-sabi

Senior Member
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small town midwest
A better name for the practice we're aiming for might be Graded Exposure Therapy, which is what is used to abate anxiety
I think this is the key quote.

Anxiety about crashing is not why I am housebound or avoid the shower. Anxiety has not created my illness. If you do have anxiety, this will probably be helpful.

This treatment plan is predicated on a wrong idea: that ME/CFS is a psych illness or can be improved by the way you think about it.

No illness, psych or physical, is changed by how you think about it. Thoughts just aren't magically powerful that way. Most of your brain function is not accessible to your conscious cognitions. Changing how you think about the illness changes how you cope with it.
 

frozenborderline

Senior Member
Messages
4,405
I think this is the key quote.

Anxiety about crashing is not why I am housebound or avoid the shower. Anxiety has not created my illness. If you do have anxiety, this will probably be helpful.

This treatment plan is predicated on a wrong idea: that ME/CFS is a psych illness or can be improved by the way you think about it.

No illness, psych or physical, is changed by how you think about it. Thoughts just aren't magically powerful that way. Most of your brain function is not accessible to your conscious cognitions. Changing how you think about the illness changes how you cope with it.
yeah i think in any illness stress can worsen it and that its great to meditate and deal with stress. difference with regular meditation is you're taught to embrace physical reality and limits including those of your illness and sit with them... rather than to hypnotize yourself into thinking your physical reality is wrong and mind over matter etc
 

wabi-sabi

Senior Member
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small town midwest
difference with regular meditation is you're taught to embrace physical reality and limits including those of your illness and sit with them... rather than to hypnotize yourself into thinking your physical reality is wrong and mind over matter etc
Yep! That's the key difference.

I've found MBSR style meditation helpful in the past. As I get sicker and can no longer concentrate it becomes less helpful. Takes so much brain energy!

descartes was wrong though... or maybe im not missing your sarcasm
Sarcasm, I think. I did a degree in philosophy back when I had a brain. Descartes never said "Just think positive, 'cause you can make an illness go away with happy thoughts!" He was saying something about how we understand reality with logic and reason.

We can imagine all sorts of wonderful stuff, but you know what's real based on logic/thinking, not happy imagination.
 

YippeeKi YOW !!

Senior Member
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Didn't descarte nail this in the 15th century, "cogito, ergo sum" - I think, therefore I am?
https://1000wordphilosophy.com/2018/11/26/descartes-i-think-therefore-i-am/
This was part of Descartes argument for the existence of God, as well as for the superiority of reason as the final arbiter of almost anything.

He also had The Evil Demon argument, in which he proposed an entity capable of deceiving us so completely that we might begin to doubt everything that our senses told us was true.

Either one works nicely for delineating the potential damages of cultish programs that require that you suspend disbelief, or be doomed to failure.
 

YippeeKi YOW !!

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Think about telling a diabetic that their sugar went up after eating too man sweets because their brain had coded that based on input from tastebuds.
Or that you have an incurable cancer because you believe in the existence of cancer.
All this getting out of your normal context and our brain doing predictive coding is just psychobabble.
You're far too kind, @wabi-sabi .... it would have to do some considerable remodeling along with several upgrades to rise to the level of decent psycho-babble.


I cant believe this load o'crepe is coming around... AGAIN !!!
 

hapl808

Senior Member
Messages
2,052
All this getting out of your normal context and our brain doing predictive coding is just psychobabble. Think about telling a diabetic that their sugar went up after eating too man sweets because their brain had coded that based on input from tastebuds.

I think this strikes the fundamental difference and belies people's insistence that they believe that ME/CFS is a real physical illness.

If you look at DNRS programs, none promise to treat HIV. They don't promise to fix septic shock by changing your predictive coding. They aren't suggested as a way to get out of your comfort zone and resolve bacterial pneumonia.

They all advertise that they can treat every ailment…that doesn't have other treatments or clear bio markers. ME/CFS, fibromyalgia, etc. Because there's no way to prove they're ineffective if there are no accepted metrics or even diagnostics for the ailments they treat. If they promised to treat ventricular arrythmia, they'd get sued out of existence in a heartbeat.

If ME/CFS is a psychiatric illness, maybe these programs are useful. I've also stated that I don't think ME/CFS is one disease. It's a symptom cluster that might have many different etiologies. In Gupta, most of the people giving testimonials seemed very tentative and seemed quite anxious to me.

Personally, I'm quite extroverted and led an active and somewhat unusual life before ME/CFS eventually stopped me from pursuing it. I traveled extensively, moved frequently, and never really had a 'comfort zone' the way it's described here. That's also why I probably dismissed people who were more severe as I thought they were indulging illness. I was too busy traveling. I crashed, but always recovered. Until I didn't.

Another thing is age. If you've had ME/CFS symptoms for less than 5 years and you're under 40, your chance of recovery seems to be much higher. I recovered many times - never to 'healthy' but to vaguely functional. Now I'm in my late 40's and had these symptoms for about 25 years. My biggest crash (to more severe) was over five years ago. So when someone in their 20's tells us how to recover, you may get some push back as we've likely already tried that and had it work…until it didn't.

I love talking on the phone, having friends come visit, etc. I still do that to the best of my ability, but I still seem to be unable to avoid the crash after those activities. I tried a DNRS program because why not - seemed quite low risk. I didn't find any benefit, but if it works for someone else - that's great for them. I tried various forms of physical therapy, the Medical Medium protocols (a friend swore by it), lyme treatments, antibiotics, anti-parasitics, the entire Amazon supplement section, TCM, acupuncture, and so forth.

So I would just caution people from assuming (and proselytizing) that something that worked in their own n=1 is the solution for everyone. There's a reason that medicine doesn't work that way.

Again I'll use @Wishful as an example because his solution is crazy simple - eat cumin. It seems to help some people, but doesn't work the same way as it did for him and some it doesn't help at all. He doesn't say they're doing it wrong or that it truly is the answer if they just did it like he did it. I've tried many things that helped other people and will continue to do so.
 

YippeeKi YOW !!

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@hapl808
Beautiful, articulate refutation of the absolute bullshit of all of these piles o'crepe !!!
I think this strikes the fundamental difference and belies people's insistence that they believe that ME/CFS is a real physical illness.
I remember posting something like this in a previous incarnation of this constantly resuscitated school of ... oh let's call it thought. What the hell.

To propose that any of these hollow, echoing, reeking, exploitations can have any lasting or meaningful effect on ME/CFS plays right into the dismissive, fly-flicking hands of the medical community's current approach to most of us .... it's all in our heads. Here's an antipsychotic (we usually reserve these for schizophrenia, but have some anyway), an anti-d, an anti-anxiety med, an ABX, oh, and a little something to help you sleep ... and to wake you up. Have fun. Next please .....

Yeah, standing on a piece of paper that has "I AM GETTING BETTER" written on it, then moving to another piece of paper that says "I AM WELL" may give the benefit of a mild bit of tolerable exercise, but beyond that, you're just clapping for Tinkerbell .... (this really IS an exercise in The Lightening Process. Or maybe it's that other one. Who can remember, what with all the getting better and getting well swirling around).
 

YippeeKi YOW !!

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Interestingly, most of the threads about these ..... uh ... disciplines ..... start disingenuously as the poster's search for Truth and Knowledge, positing themselves as doubters just looking for the facts, ma'am, as they slowly, carefully, reel out the line until something bites, while simultaneously batting down any negative input or opinion, and countering it with anecdotal 'evidence' obtained from someone who knows somebody who was married to someone's brother whose 2nd cousin's dog-groomer was close friends with someone, etc etc etc.... names withheld for privacy reasons.
 

frozenborderline

Senior Member
Messages
4,405
How can something like Abilify fix very severe people within weeks to massively higher capacities..? It also doesn't address mitochondrial issues or infections etc.. There's something weird there that we just haven't been able to figure out I think.
i dont know how abilify works but it's worth thinking about how many drugs that are used in psychiatry have uses beyond psychiatric illnesses bc the brain is an organ and drugs are complex. Benzos help with epileptic seizures , not bc those are psychogenic, but bc they involve high glutamate to gaba ratio most likely and benzos anticonvulsant action is related to gaba , but they are also used separately for anxiety. And benzos are one of the most simple drugs for psych stuff, once you get into drugs like abilify, I doubt we've mapped out even a small amount of what they can do. Also abilify hasn't been proven to work in any significant trials so we're putting cart before horse here.

So yeah, none of that means anything about me/cfs being pshchogenic lol. When you learn about pharmacology you learn the complexity of drug actions and how rare it is that they do just one thing that they're supposed to do.
 

JES

Senior Member
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1,320
If ME/CFS is a psychiatric illness, maybe these programs are useful. I've also stated that I don't think ME/CFS is one disease. It's a symptom cluster that might have many different etiologies. In Gupta, most of the people giving testimonials seemed very tentative and seemed quite anxious to me.

I would argue even their efficacy for psychiatric diseases is in question and remains to be demonstrated. I don't see these programs being pushed by doctors treating neuropsychiatric diseases at all to the same extent than they seem to be pushed to the artificial category containing "medically unexplained diseases" or poorly defined diseases like ME/CFS.

Since psychiatric diseases already have well established treatments combining drugs and therapy, it seems the providers of these alternative therapies have found it harder to tap into that branch. So ironically, they market themselves to be about healing the mind, yet have not been found to be useful in diseases that are de facto in the mind. Or to be precise, diseases in the brain that are affecting bahaviour, as I think psychiatric diseases have many biological/genetic factors, which are just a bit poorly understood at the moment.
 

YippeeKi YOW !!

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it's worth thinking about how many drugs that are used in psychiatry have uses beyond psychiatric illnesses bc the brain is an organ and drugs are complex.
Drugs are complex, doctors have almost zero comprehension about the width, depth, and breadth of their mechanisms of action, and the brain is an EXTREMELY COMPLEX organ. Tampering with it thru drug manipulations with little comprehension of what's being affected or where or how is a fool's errand, and a deeply dangerous path.


Psych wards are overflowing with the results of careless and poorly-informed prescribing modalities ....
Benzos help with epileptic seizures , not bc those are psychogenic, but bc they involve high glutamate to gaba ratio most likely and benzos anticonvulsant action is related to gaba
Plain benzos like Valium arent the prescription of choice for seizures, and are generally only used in emergency situations, or when other, more seizure-specific medications either arent available or arent workng. Benzodiazepines cn actually cause more frequent and mor serious seizures, which is why its only used for emergencies.


Beats hell out of me why the other epiliptic drugs of choice are any better, like Klonopin, Dilantin, Tegretol, Depakene, Oxcarmazepine, phenobarbital, lamotrigine, etc etc etc, but they're the drugs of choice for epileptic seizures.

Epilpetic seizures aren't caused by an imbalance in the GABA/glutamate ratio, as much as they're the result of poorly understood misfirings and short circuits of electrical signals, with the temporal lobes, and specifically the hippocampus, most commonly the primary ground zero.

Also abilify hasn't been proven to work in any significant trials so we're putting cart before horse here.
Some of PR's members might ague that, having followed ad/or participated in the Stanford Abilify experients, and having found some help from Abilify. Often it's temporary, but not always.
I doubt we've mapped out even a small amount of what they can do
Sadly, I think that an awful lot of what they're capable of has been mapped out by the patients of Drs who like to throw around prescriptions for benzos and anti-anxiety drugs like party favors at a boisterous wedding. They're more than just a double-edged sword. They're a often a singled bladed threshing machine, and quite a few of PR's members have experienced the force of that.
When you learn about pharmacology you learn the complexity of drug actions and how rare it is that they do just one thing that they're supposed to do.
I agree. They often don't even do that, and frequently have paradoxical side-effects, which drug companies attempt to turn into additional, more dependable, revenue sources. Drug companies who find that an expensively developed drug isnt returning the rewards that were expected, will often 'suggest' radically different, off-label uses for it.


Klonopin is a good example. It was developed by Roche Labs to compete with Dilantin, and divert as much of that rich cash stream as possible into their own coffers. When that didnt quite work out as planned, the army of short-skirted and tightly tailored drug reps was sent out to plant the thought in Dr's ears that Klonopin was an excellent anti-anxiety medication, useful in social phobias and insomnia, and here's a boatload of free samples to hand out to your patients, along with this attractive coffee mug and year's supply of Fazenda Santa Ines Coffee ($50.00 a lb) and an itinerary for our various 'conferences' and the richly lucrative speaking engagements attached to them.

The very tiny fine print warned that using Klonopin (clonazepam) for more than two weeks, sometimes even at the lowest suggested therapeutic doses (.25 mgs) could result in everything from serious brain issues to liver damage, potential kidney failure, and multiple other unpleasantnesses, some of them potentially deadly.

Are you studying pharmacology? The above could make for lively discussions in the lecture halls, many of which are underwritten and supported by pharmacology companies, who also chose the course syllabuses, what research they're willibg to pay for, and what results they expect from it.

The system is .... how you say ..... uh, rigged.
 

frozenborderline

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ain benzos like Valium arent the prescription of choice for seizures, and are generally only used in emergency situations, or when other, more seizure-specific medications either arent available or arent workng. Benzodiazepines cn actually cause more frequent and mor serious seizures, which is why its only used for emergencies.

Beats hell out of me why the other epiliptic drugs of choice are any better, like Klonopin, Dilantin, Tegretol, Depakene, Oxcarmazepine, phenobarbital, lamotrigine, etc etc etc, but they're the drugs of choice for epileptic seizures.

Epilpetic seizures aren't caused by an imbalance in the GABA/glutamate ratio, as much as they're the result of poorly understood misfirings and short circuits of electrical signals, with the temporal lobes, and specifically the hippocampus, most commonly the primary ground zero.
My main point was that they are used even if only in emergencies, which is a very classic and effective use. Obviously they'd be a terrible idea long term due to extreme dependence and cognitive issues

As to the gaba glutamate thing , I'd be surprised if it had absolutely nothing to do with seizures. Electric activity in the brain is related to chemical stuff and neurotransmitters in ways we poorly understand. Excititoxicity from high glutamate can cause seizures even if it's not the main cause of seizures.

My main point which I think we can agree on is that just bc a drug is used in psychiatry doesn't mean that if it works for something that means that problem is psychological primarily.
 

YippeeKi YOW !!

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As to the gaba glutamate thing , I'd be surprised if it had absolutely nothing to do with seizures.
Very little with their genesis, at least as far as medicine knows or accepts, tho the very exitence of epilepsy can cause subsequent imbalances in neuronal transmissions, This would be considerably aggravated by the down regulation of GABAa,r receptors induced by the medications that epileptics are subjected t .... put on
Electric activity in the brain is related to chemical stuff and neurotransmitters in ways we poorly understand
If by 'we' you're including the entire corpus of the medical comunity, including specialists in the field of neurobiology, than I totally agree.
Excititoxicity from high glutamate can cause seizures even if it's not the main cause of seizures.
Only in extremis., and usually in the presence of other co-morbidities, like epilepsy. I'm a huge proponent of the importance when dealing with ME/CFS of gettng a basic understanding of the effect of imbalanced GABA/glutamate axies, smething the medical community tends to dismiss, along with anyone else who can make a buck off things like flavor enhancers and artificial chemical enhancers, but thats a story for another day ....
My main point which I think we can agree on is that just bc a drug is used in psychiatry doesn't mean that if it works for something that means that problem is psychological primarily.
If I correctly understood what you're saying, than yes.


And no. Generally, a psych drug has many avenues of approach to the millions of active components of the human CNS, including the brain, the enteric nervous system, and all the complexities therein.

You wouldnt use a psych drug to 'heal' a broken arm, anymore than you'd use a splint to secure an out-of-whack nervouse system. So to the degree that psych drugs work on ' ..... something else ....' apparently unrelated, or at least not directly related, it's because the pathways the drug can access and utilize are somehow involved in that ' ... something else ....', making it, in one way or another, a psych issue at some point of it's expression.

The problem is that Drs seem to have no understanding of the subtleties of that, so if it appears that Klonopin is 'helping', that's enough evidence for the smugly reductive mind to accept that it was a psych issue all along.

We should have all come with an owner's manual, or maybe some sort of schematic. Or at least, one should have been supplied to medical schools .....

I gather that I misunderstood, and you're not studying pharmacology .... which frankly, is a good thing ....

EDIT ... for clarity. And two ... no, theres another one, three typos .... mild OCD is a hobby of mine ....
 
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frozenborderline

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I gather that I misunderstood, and you're not studying pharmacology .... which frankly, is a good thing ....
Im not formally studying anything, of course, due to how sick I am. I have tried to learn everything I can about biology and pharmacology to help find my way out of this maze. Apologize if any of my knowledge isn't up to par
 

frozenborderline

Senior Member
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4,405
The very tiny fine print warned that using Klonopin (clonazepam) for more than two weeks, sometimes even at the lowest suggested therapeutic doses (.25 mgs) could result in everything from serious brain issues to liver damage, potential kidney failure, and multiple other unpleasantnesses, some of them potentially deadly
I agree that benzos have major risks, although i thought their main role was replacing barbiturates, which they are indeed safer than.

I was also mainly discussing their efficacy in treating acute emergency situations including seizures and certain types of delirium or catatonia. If I have certain situations like that I very much hope doctors use benzos. Also useful for muscle relaxant usage post surgery.

I wasn't extolling them as a risk free med, just pointing out that they can treat physical disease as well as psychological issues, so whenever someone says that a "psych med" helping me/cfs means the disease is psychiatric, it's very wrong and based on oversimplification s.
I may have missed something , am a bit fuzzy after a nasty reaction to iv contrast which I hope doesn't last, yet I thought we were mostly agreeing