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

[wabi-sabi]

Maybe that was another philosopher - Placebo!

Ooh, that's my favorite philosopher!

 

[hapl808]

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.

I think that's a good summary. I try to be non-judgmental, even about things that have actively made me worse. We all have to make our own decisions. I think I tend to push back when anyone pushes too much confidence and certainty in our ME/CFS world of zero certainty. The disorder itself is a vague outline that different people and institutions define in different ways. When someone explains a theory, then we can debate it from different angles. But when it's presented as 'how things work', then it may make those of us that have spent decades struggling feel a bit discarded.

We can always do better and be kinder, though. It can be harder to do that when we feel something is being pushed that is both misguided, and has a great potential to do harm.

 

[mbunke]

Hello all,

I'll admit I have not read every post on this thread since my last response since there were many, but I'd like to clarify and apologize for a few things:

I'm very sorry that my post came off sounding like pwME are just not motivated enough. That was a big mistake on my part, and I'm grateful for the backlash because I'm learning how to communicate these ideas better every time I express them and do it badly. I mean this with all my heart, I am overwhelmed and heartbroken that we have all suffered so much. I believe SO strongly that we suffer enough physically, emotionally, and then socially at the hands of so many who gaslight us and don't believe us (please remember I've been through all of this too and am still in it), that for us to hurt each other is just an utter tragedy. So I'm very sorry again to have implied (accidentally--this was NOT my intention) that someone with ME is not getting better because they just haven't had enough motivation. Ouch is right, that would be a horrible thing to tell someone in our positions. I believe beyond a shadow of a doubt that every one of you is trying to the absolute best of their ability to get better. Ugh, I'm just so sorry to have been numbered among those who would gaslight like that, truly.

Here is what I think I was trying to say, and I'm not an expert!!! Just trying to share my model of what helped me. In MY experience, the thing that got me better was gradually increasing my activity. Listen, I was and am the most motivated person I know. Literally, I have always been this way, it's why I got sick. I push too hard. When I have a goal, I will crush everything in my path to get it. So I was more motivated than anything for the past 5 years to get better. This was all INTERNAL motivation--maybe this is better language for this. It wasn't until something came along (for me it was meeting my now boyfriend) that was an EXTERNAL motivation that something in me changed. I no longer had to motivate myself (which is something I'm sure every one of you has in abundance). I had something externally to drive me forward to more activity. I am now thinking about gradually starting to take classes in a graduate program that I'm extremely passionate about--this too is much more propelling for me than my internal motivation ever was.

So I guess what I'm suggesting to those who are willing try is to find an external motivator, because as we all know, it is utterly exhausting to keep trying to motivate yourself day in and day out. I'm sure many of you have already done this, but I truly think this might be the key, I've heard the same story from many others as well that this was what got them better.

@mbunke

In further discovering the unusual, I've found (with real data from my monitor), that a shower and dressing looks like a marathon, but I can teach a low impact exercise class 3x/week and it barely registers. But many of the people in my class have tremendous physical challenges and they continue to report how much they are helped by the class.

I think there's just something to finding meaningful purpose.

This is what I'm talking about ^. There are certain CONTEXTS where my body does not crash like it usually does, and it's almost always contexts where there's a strong external motivator, something that grabs my interest and passion so strongly that my body simply says, "This thing seems to be more important than inducing symptoms."

I believe ME/CFS is a physical illness, not a psychological one. I believe there is mitochondrial dysfunction, severe ATP issues, circulation issues, real pain, real everything. None of it is caused by "thinking yourself into" the symptoms. That is silly, and *&!# people who say that.

Maybe this is a semi-useful example of what I'm kind of getting at: the mother of average strength who is suddenly able to lift a car several inches off the ground because her child is trapped underneath it. External motivators can unlock elements of biology that aren't typically possible or present.

I'm very happy that mold avoidance has worked for some of you as well! I will add that there is no research for that either. There is research for the concepts I'm talking about for things like chronic pain and other chronic problems, but very little for ME/CFS at this point unfortunately, although there is some.

Lastly, I'm not a big fan of "brain training" programs. I think there is a ton to be learned from them, but most are by people claiming to be experts in something they're not experts in and are lacking in a lot, and they sometimes even do imply that if it doesn't work for you it's cause you're not trying hard enough or not motivated enough. I agree that's bull.

 

[hapl808]

This is what I'm talking about ^. There are certain CONTEXTS where my body does not crash like it usually does, and it's almost always contexts where there's a strong external motivator, something that grabs my interest and passion so strongly that my body simply says, "This thing seems to be more important than inducing symptoms."

That was my experience when I was more moderate. As I slipped toward severe, eventually there was never a context where I didn't crash. It just made it more painful when there was some external context that I cared about (a person, an activity, etc).

Even things that were really enjoyable and brief and where I thought I avoided the crash, I learned over time that I could just push it off to 36-48 hours after the activity instead of 12-24 hours. I keep thinking I've found a method or context where I'll be okay and start improving, but I've been relatively severe for five years and unable to find any physical or mental activity where I don't pay a price. And aggressive rest just stops my worst symptoms, but I don't seem to improve my baseline.

Just trying to share my model of what helped me. In MY experience, the thing that got me better was gradually increasing my activity

I think this is the most accessible and thoughtful way to approach things. We're mostly not researchers running double blind trials, so that's all any of us can do. Any pushback you received was likely just us misreading that the strategy that helped you was being presented as a proven theory.

I'm glad you're finding methods and strategies to improve your situation and I hope it continues!

 

[mbunke]

@hapl808 I'm so sad to hear you've been severe for so long. I think I would agree with that, that this approach might only work for those who are moderate. The Optimum Health Clinic (highly recommend) would call it "Stage 3." Stage 1 (or severe) rest is most important and pushing it is dangerous. The way I was pulled out of severe was through low dose naltrexone and bio-identical hormone replacement therapy (progesterone and T3/T4 thyroid). I wish those worked for everyone, and I wish it was available in all countries, but sadly it's not.

 

[wabi-sabi]

That was my experience when I was more moderate. As I slipped toward severe, eventually there was never a context where I didn't crash. It just made it more painful when there was some external context that I cared about (a person, an activity, etc).

This has been my experience as well. No motivation makes me better, even when I am losing things I desparately wish to keep. If I had a nice boyfriend I wouldn't even be able to see him.

I am glad to hear your clarification @mbunke . Your experience as been very different from mine. I'm not getting LDN or hormone help and that probably matters a lot. Without the right meds, this program would really harm me. My interpretation, and feel free to correct me, is that when we have the right medication support we are able to do more. Without the med support... nothing has been possible for me.

The complexity of our stories makes it hard to figure out what working and how.

 

[mbunke]

@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.

 

[wabi-sabi]

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.

Sadly no. I am passionate about lots of stuff and the more I do them the sicker I get. This is part of the grief of the illness.

What makes me better is the exact opposite: holding back from the things I want to do and resting instead. Then I can store a tiny amount of energy. But there is always a hard stop to how much I can do, no matter how much I long to do more. Pushing our limits isn't what makes us better. As we get better (from treatments) we are naturally able to push more.

Think about it like having a broken leg. The leg will only heal if you put it in a cast and rest it. After it's healed you can do PT to build up our strength so you can walk. If you don't do your PT, you won't be able to walk so well. But if you skip the cast and rest part, and try to walk or do PT on a broken leg.... well more and bad things will happen. Since my leg will never heal (metaphorically speaking) PT will only injure me further.

That's the fundamental thing that everyone with ME/CFS needs to deal with. We all have a different size energy envelope, so some of us are able to do more, but for all of us too much is too much and makes us worse. At this point in my illness my envelope is very tiny. It sounds like your envelope has gotten bigger with treatment, and that's what we all hope for. But I bet you still have an envelope you can't escape?

 

[hapl808]

Sadly no. I am passionate about lots of stuff and the more I do them the sicker I get. This is part of the grief of the illness.

Same here. Unfortunately LDN didn't do much for me other than maybe give me more vivid dreams? I experimented from around 1.5mg to 4.5mg but didn't seem to help my main symptoms. Maybe I'll revisit it.

I wish I could do small amounts. I've spent the last 5+ years doing that. Maybe I can 'build up' from talking on the phone, or working on the computer. But I've found it's mostly the opposite. The more I rest, the better I feel physically. But I go stir crazy if I can't read or talk on the phone or watch YouTube or something. And even when I force myself to do nothing but rest, I just hit a plateau very quickly.

I keep thinking something will help me 'turn the corner' as I had brief periods of being more severe in the past, but I was younger then. Now it's been relentless, despite trying TCM, acupuncture, herbs, supplements, hormones, peptides, diets, fasting, and on and on.

 

[wabi-sabi]

I wish I could do small amounts. I've spent the last 5+ years doing that. Maybe I can 'build up' from talking on the phone, or working on the computer. But I've found it's mostly the opposite. The more I rest, the better I feel physically.

Yes, that's the sad hallmark of our illness. The more you do, the worse you get. No matter how much we wish it were otherwise.

I always think it's like diabetes2. No matter how much you want that chocolate cake, you can't have it because you will get sicker. (Must be close to lunchtime if I'm thinking about cake!) No matter how much we want to live our lives and expand our activities, we get worse if we do. It's the nature of the beast. That's my fundamental issue with DNRS. Seems like it tries to obscure that fundamental truth.

 

[Wishful]

Unfortunately LDN didn't do much for me other than maybe give me more vivid dreams? I experimented from around 1.5mg to 4.5mg but didn't seem to help my main symptoms. Maybe I'll revisit it.

Retrying things is valid, since our responses change over time. My experience with LDN was that it was absolutely wonderful for blocking the perceived aches I suffered, but that it did nothing else for my other ME symptoms. Hmmm, now that I think about it, I don't recall any treatment, even the 'works a couple of times' ones that provided a general reduction in my ME symptoms. No, T2 did seem to help in general, although I thought of it as preventing a general increase in my baseline symptoms. It's a matter of which baseline was the 'normal' one.

 

[YippeeKi YOW !!]

If we're including short term physical problems, they treat seizures, which are physical.

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.

They also have been found to help.some me/cfs patients a lot , probably bc of glutamate activity

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.

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.

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

And again, the effects of CNS / brain activity are the cause of tremors, dystonia, and nystagmus, at least as far as I know ...

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

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.

 

[YippeeKi YOW !!]

Maybe that was another philosopher - Placebo!

Ah, yes !!! The famed Placebius ....

 

[YippeeKi YOW !!]

I wish there was info in between really scary anecdotes that aren't universal and mainstream docs saying it has absolutely no effect

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 ...

 

[YippeeKi YOW !!]

Unfortunately it's not that type of contrast, it's gadolinium.

Yeah, in its way it was worse than the gastrograffin and iodine contrast which only screws you up for a week or three.

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.

 

[wabi-sabi]

Neuropathic pain, is by its very name, a neuro issue, not a physical one, altho the pain is physical.

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.

 

[YippeeKi YOW !!]

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

ABSOLUTELY !!!

This is what makes me see red whenever I come across more posts about this bogus crap, and that happens more than we can dismiss as coincidental.

We're a captive audience of desperate, suffering souls, frantically looking for help. Those who prey on this are unforgivably callous, vile, and generally sociopathic and I can't bring myself to apologize for reacting to that.

Fortunately, you did it forme ..... gracefully but with gentle adamantinance (probably not a word, but I cant find another ....) ....

But, you're right. We can do better/kinder about it.

Nope. Nyuh-uh. I did that for a long time, and then as each perpetrator disappeared for a while, and then came back again, spewing the same bullshite, I finally lost patience and any ability to be gentle and diplomatic.

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.

It wont just hurt them. For some, it can cause severe, and sometimes irreversible, damage.

And as I stated before, it steals hope, and often just kills hope outright, and without that, I don't know how many of us would slowly wither and die, but I'm guessing the number isn't small ....

EDIT ... for better syntax. And typos. But mostly syntax ....

 

[YippeeKi YOW !!]

the brain and nerves are just hunks of meat.

If that's true, then they're highly specialized hunks of meat and should probably be treated with great care and some degree of respect.

Otherwise our spleen would be able to do advanced mathematics when our brain got too tired to continue, and our pancreas would know how to sew that shirt collar.

While I understand where you're coming from, materialistically, I think that it's too reductive to be entirely comfortable for me .... but that's just me .... and DB, who always refers to human ailments as problems in the "meat sack" ....

 

[YippeeKi YOW !!]

I think it's useful to be able to draw a line (however dim) between psych issues like depression and neuro issues like dementia.

PS .... dementia is a neuro issue?

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

 

[Judee]

I am now thinking about gradually starting to take classes in a graduate program that I'm extremely passionate about

So what will you be studying if you do manage to go back to school? Will it be something ME related as you said,

There is research for the concepts I'm talking about for things like chronic pain and other chronic problems, but very little for ME/CFS at this point unfortunately, although there is some.