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

[frozenborderline]

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/

Cartesian mind body (ghost in the machine ) dualism is sort of part of the problem in psychological epistemology leading to the (largely absurd/not very useful) idea of purely psychogenic illnesses.

 

[frozenborderline]

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.

Both very good points. There's a reason they're only recommending these treatments to desperate patients and no insurance is covering them and they are not trying for institutional legitimacy or trialing the treatments in large studies. If the treatments were miraculous even for psychological illnesses like neuroses or ptsd you'd think they'd replace things that have only mild efficacy like cbt regimens etc

And as the mind is an emergent property of the brain and body of course yr right that biological factors of all kinds, toxins, inflammation, infections , etc all affect what we know as "psychiatric " diseases. Of course some neuroses have a component of psychosocial stress but stress responses are also physiological and no disease can be said to be purely one of mind with no physical aspect.

 

[wabi-sabi]

purely psychogenic illnesses.

This is the weird part (OK, one of the weird parts) of all these pseudo therapies. They posit an immaterial mind that can influence a material body through the power of thoughts.

I think dual aspect monism is the way to go, myself.

 

[wabi-sabi]

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.

Yes, this is very telling. Mental illnesses are as real and as painful as physical ones. They require real treatment.

Our illness is clearly just fake, so fake therapies work for us (sarcasm). If we would only realize we are faking, everything would be fine!

 

[YippeeKi YOW !!]

Sadly we're all 'studying' pharmacology with ourselves as the lab rats.

Ain't it the truth. And our own Petrie dishes.

Even sadder is the likelhood that we often know more about our illness and what helps it, hinders it, or sets us back badly than the Drs we go to, who immediately dismiss us as head cases, and in an apparent effort to prove their point, try to get us on as many psych meds as possible.

An atty friend once explained this to me patiently, in relation to a mutual friend who was in pretty bad shape after about 2 or 3 years of being bombarded with Z-drugs, benzos anti-whatevrs, as tho talking to a relatively bright 5 year old, "It's one of the oldest medical dodges in the book. It's called pre-impeaching the witness, so that if for some reason you try to sue him or her, they can immediatly call your reason and mental capacity into question and trot out all the prescriptions written for anti-aniety drugs, anti-d's, sleep meds, anti-psycjotics, whatever they've thrown at you,...". When he saw the stunned look on my face, he almost patted me on the head, and said "It's a dirty game. They have a lot to defend, and they'll defend it the same way the Mafia would. I'm gonna grab a burger, can I bring you one?"

 

[YippeeKi YOW !!]

Im not formally studying anything, of course, due to how sick I am.

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 think this is where I got the incorrect impression that you were studying pharmacology.

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

Sarcasm emoji???

Some of it is a little off-base. Not wrong just not totally right. None of us are perfect. Is perfect? Am perfect? Be perfect?

Whatever ....

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

Yeah, that shite used to knock me on my butt, badly. I lost track of how many scans I'd had, but I alwys knew that they'd be followed by some very very bad times.

If you're allergic to shellfish, seafood generally, or iodine, it has a truly, deeply, sincerely horrific effect.

I'm guessing that you know this, but I never assume, so ..... drink A LOT of water. It seemed to help move me thru the worst of it a little faster....

And yes, we are mostly agreeing. I just have a bad habit of needing to put my 2 cents in when I feel that something is not entirely inaccurate, and could be misleading to others reading this thread later .... I remember vividly how vulnerable I was as a newcomer here, and how eager to accept the wisdom in these threads as absolute gospel ....

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.

Which bona fide physical diseases do they treat? I'm drawing a blank, and my brain stopped working about an hour ago .... I'm going to have to take a time out shortly ....

EDIT ... again, for clarity, typos, general bad syntax ....

 

[YippeeKi YOW !!]

They posit an immaterial mind that can influence a material body through the power of thoughts.

That shot me straight down the rabbit hole.

The calisthenics involved in wrapping my head around it are beyond me, but that just proves that I need their course / treatment / training / exercises / instruction / direction / whatever / more than I know. Or dont know. Or unknowingly know without materially knowing it.

I think dual aspect monism is the way to go, myself.

Isn't that an oxymoron? Or tautology? Or something? Cause I cant get my head around dual monism either.

This is not a good day ....

 

[YippeeKi YOW !!]

Our illness is clearly just fake, so fake therapies work for us (sarcasm).

Well DAMN !!! Finally !!! A clear and concise answer ... I've totally seen the light ....

If we would only realize we are faking, everything would be fine!

Awesome !!! I'm sold !!! Where do I sign up????

We REALLY need a sarcasm emoji ... theere's always this one , but I think it's too ... subtle ....

 

[wabi-sabi]

I've totally seen the light ....

Now that I have cured myself through the power of magic thoughts I will go jogging, possibly run a marathon tomorrow. I can think myself fit you know!

 

[wabi-sabi]

Isn't that an oxymoron? Or tautology? Or something? Cause I cant get my head around dual monism either.

No, I'm just throwing around the big words to make myself feel like I still have a brain.

There's a neuropsych guy called Mark Solms that i really like. You can find his talks on youtube. He explains the whole mind-body thing and I think he's got it right.

Monism means that there is really just one thing here. The mind is just a piece of meat in our skull called the brain.

But, at least when you have a functioning brain, it sure feels like the mind is an immaterial and transcendent thing, but that's just a feeling. That's the dual aspect part. It feels like it's two things (a mind and a brain), but it isn't.

That's been the experience of this illness for me. As I become more brain damaged, I can feel my self, my personality changing. I'm really afraid I am so brain damaged I am no longer me. It took this much brain damage to make me see that what I felt was my mind was really just my brain. I felt like I had two different things, my lovely mind independent of the state of my body, (dual aspect) that turned out to be one thing, a body that was breaking and destroying my self (monism). Solms works with people who are brain damaged too, so that's probably why his explanation fits so well for me.

 

[frozenborderline]

Which bona fide physical diseases do they treat? I'm drawing a blank, and my brain stopped working about an hour ago .... I'm going to have to take a time out shortly ....

If we're including short term physical problems, they treat seizures, which are physical. Of course i agree they're not the best treatment long term bc of their dependence forming, there are better anticonvulsant, but in emergencies they stop seizures.

They also have been found to help.some me/cfs patients a lot , probably bc of glutamate activity and they're used by some mcas doctors. Whether or not they have awful side effects long term isn't the point I was trying to make , just that psych med is a meaningless category, meds can treat psych issues and also physical problems.

Benzos are used to treat muscle spasms post surgery. This is not a disease so much as a symptom but it is very much a physical symptom, there is not a psychological reason for the muscle spasms.

I believe they can also treat tremors and dystonia and nystagmus, all usually physically caused symptoms.

Fluvoxamine is a psych med that has some antiviral activity in vitro i believe and has been used in acute covid.

Amitryptiline is a psych med, a tricyclic antidepressant, used for neuropathic pain too.

And the other way around there are many meds that were primarily used for physiological things that end up working for psychiatric diseases. For 3xample, buprenorphine has helped in some case studies of treatment resistant extreme depression . Minocycline has helped with schizophrenia.

 

[Wishful]

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.

It's easy to get mislead by what drugs are supposed to do. Just because drug x binds to receptor y doesn't mean that it will do absolutely nothing else in a body. Maybe cuminaldehyde worked for me because one of my miRNAs is just the right configuration to temporarily bind with cuminaldehyde, and another RNA molecule just happens to fit into that combination, which affects the rate of production of some protein that affects my ME symptoms. That's not a specific theory anyone is likely to come up with (way too many possible combinations), but it is something that is at least possible.

So, just because a drug is supposed to treat depression or whatever, doesn't mean that it's using that mechanism when it helps someone with ME. Abilify might work to varying degrees on a dozen or so PWME (out of how many millions?). Some drug that is completely unrelated to Abilify might also help a similar number of PWME, just because if you have enough people with this wacky disease, someone is likely to have some unique factors that will allow the drug to do something useful for them.

Unless a drug helps a significant fraction of PWME, it's probably just working via some random combination of factors in those few people that it does help. It's probably also working via some upstream or downstream factors that affect the symptoms, rather than the core dysfunction.

 

[frozenborderline]

If you're allergic to shellfish, seafood generally, or iodine, it has a truly, deeply, sincerely horrific effect.

Unfortunately it's not that type of contrast, it's gadolinium. The iodine based ones can cause nasty allergic reactions and thyroid problems, but I've heard stay in your body less long thwn gadolinium. I'm giving myself a break from researching it but I want to find stuff to help with gadolinium eventually. I'm hoping it's not long term permanent damage but this is a situation with no good choices, if i didn't get the scan with contrast I could've missed something about my neuro and vision problems that is extremely serious. No good choices.

 

[frozenborderline]

Sarcasm emoji???

Some of it is a little off-base. Not wrong just not totally right. None of us are perfect. Is perfect? Am perfect? Be perfect?

Whatever ....

No sarcasm, genuine apology. I feel deeply bad about my growing stupidity. I used to have pride about how much I was learning about etiology, and biology and metabolism and immunology and pharmacology from scratch, earlier in my illness, but my brain has been a lot fuzzier lately and I forget basics I used to know, i feel genuinely deeply ashamed at my stupidity. There's no sarcasm there. I'm sorry, not just to propagatse anything wrong but I pity myself and am sorry for myself with my own stupidity

I used to think my grasp of pharmacology was good but I've had lots of cognitive issues in the past year worsen even beyond normal mecfs levels. I'm hoping it's temporary and I can undo it but even if it was it sucks

 

[frozenborderline]

This is the weird part (OK, one of the weird parts) of all these pseudo therapies. They posit an immaterial mind that can influence a material body through the power of thoughts.

I think dual aspect monism is the way to go, myself.

Sort of agree. Buddhism has it right which is different from dual monism , but non dualism is ineffable , so describing the differences is hard, and I definitely think the point is that the mind isn't totally immaterial or some ghost in the machine (as interesting and cool as the cyberpunk ghost in the shell anime is , the actual idea by descartes is a terrible model of the human mind and body). The subtle differences between non dualism, pantheism, panentheism, Russian cosmism, and spinozist monism? , all elude me to an extent but I certainly don't believe in whatever the Cartesian nonsense about a totally separate mind that just acts on matter with no restrictions

 

[frozenborderline]

eah, that shite used to knock me on my butt, badly. I lost track of how many scans I'd had, but I alwys knew that they'd be followed by some very very bad times.

If you're allergic to shellfish, seafood generally, or iodine, it has a truly, deeply, sincerely horrific effect.

I'm guessing that you know this, but I never assume, so ..... drink A LOT of water. It seemed to help move me thru the worst of it a little faster

I'm hoping it's temporary. It's hard to prepare bc I wish there was a treatment beyond hydration and flushing it out, and I wish there was info in between really scary anecdotes that aren't universal and mainstream docs saying it has absolutely no effect

 

[frozenborderline]

easy to get mislead by what drugs are supposed to do. Just because drug x binds to receptor y doesn't mean that it will do absolutely nothing else in a body. M

Right , almost no drugs only act on a single receptor or even act only in the brain. They're They're finding that the action of ssris and their subtle effect on depression may be from hippocampal neurogenesis unrelated to their effects on serotonin , despite the low serotonin theory of depression being primary one for awhile almost solely based on ssris working (somewhat) and thus recursive

 

[Artemisia]

I'm a little bewildered by this discussion. @mbunke states that she doesn't think the program is necessary (earlier she said she didn't think it even helped her), but that certain ideas and techniques have helped her, and she updated the thread as several people had asked her to. This is not the same as peddling a program, nor does it seem disingenuous to me. I agree that implying that you only need motivation to heal is upsetting and should be challenged, but for those of us quite a bit older than 27, did you ever have a misguided idea at that age? I know I sure did. And maybe it worked for her. Maybe stress management is enough to push some pwME into an upward trajectory. This doesn't mean she didn't have me/cfs or that she's trying to convert people or sell something.

 

[kangaSue]

descartes was wrong though... or maybe im not missing your sarcasm

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.

I was maybe wrongly reading a more literal meaning into the phrase, and requiring the addition of a couple of other words in the mix - I think I'm well, therefore I am.
Maybe that was another philosopher - Placebo!

 

[wabi-sabi]

I agree that implying that you only need motivation to heal is upsetting and should be challenged, but for those of us quite a bit older than 27, did you ever have a misguided idea at that age?

Thanks for reminding us to be compassionate. Clearly, we can't diagnose what condition OP has and I sometimes think there's too much "You can't have ME/CFS because you don't have the exact symptoms I do" in our community.

The issue you bring up about a misguided idea is quite valid. DNRS and its ilk are a misguided idea. They are a form of praying on vulnerable patients who are frightened, desperate, and cognitively disabled. I think ideas like this should be debunked, the better to get up real treatments that work. OP has been sold a bill of goods. That doesn't ultimately help her or us. If she does have ME/CFS (and I'm not meaning to hint she doesn't here) she will be hurt by continuing to attempt the program. We can warn her (and anyone else confused about DNRS) away from the program as a treatment for ME/CFS the same as we would warn someone with diabetes not to eat the whole bag of oreos at once. If we're less than diplomatic about it, it speaks to how much we've been hurt by ideas like DNRS. But, you're right. We can do better/kinder about it.

The symptoms of this condition fluctuate so much sometimes it's hard to know what triggered a worsening or a lessening. But what we do know is that ideas like what OP was told in DNRS (more motivation, pushing past your envelope, going beyond comfort zone) will ultimately hurt someone with ME/CFS. They should not be proposed as treatment. The theoretical underpinning of those ideas (predictive coding) has been taken out of its proper neuro context and twisted to mean something it doesn't. Misrepresenting the science behind a treatment also should not be done.

So is DNRS a treatment for ME/CFS? No.
Is it probably harmful for someone with ME/CFS? Yes
Is passing off pseudoscience as real harmful? YES!