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

[SueJohnPat]

@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.

Great post ! You articulate this Process so well. I did Dnrs and did not become “ cured “ but now able to sleep indoors and I tailored it in a very personal way. Letting go of stressful events . Changing your reactions to stressful people and events. I just hike in the woods alone and have long “ conversations “ with my subconscious and my nervous system. I had trauma and drama in childhood and I am reparenting myself.

 

[Sargent]

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.

@mbunke, thank you for sharing your experience and all this valuable information!

Could you please clarify something for me. I am confused as to what should be the primary focus of brain retraining for CFS:

1) feeling of tiredness itself OR

2) stress reactions to various things that cause that tiredness

From one of your posts I got impression that you are focusing mostly on retraining your brain not to feel tired. Is it correct? It seems to me that tiredness itself is a natural reaction of the body to the stress, the way body recovers from the stress, and telling it to stop recovering (not feel tired) seems counter intuitive.

As I understand from reading Neuffer, DNRS and other related sites, people with CFS are constantly stressing themselves unconsciously, which is the source of their fatigue. Some studies support this (I included few below, but you are probably already aware of them). Also Neuffer in one interview said that at some point of his illness he realized that he was unconsciously getting tense and holding his breath when walking, talking etc. Then he retrained himself to not to, which (with other things) led to his recovery.

So, my understanding so far (and my self-treatment) has been: 1) retrain the brain not to do stress reaction 2) when feeling tired, get as much deep rest as possible, i.e. don't try to prevent the body from feeling tired.

Can you please share your opinion on this, what is the right way to go about it?

May I also ask, do you notice yourself doing these unconscious stress reactions, like getting tense or holding breath, when walking, talking, eating, etc? If so, to what extent were you able to retrain your brain not to do it?

Thank you!

Few relevant studies:

https://www.sciencedaily.com/releases/2012/11/121115133806.htm
"Even when [people with CFS] sleep, their stress-responsive neural systems are on high alert, signalling that it is not safe to relax. I think this condition may be understood by analogy to post-traumatic stress disorder, just that in CFS the original trauma is most likely a physiological, internal one, such as a severe infection."

https://www.sciencedaily.com/releases/2016/05/160517101527.htm
"Chronic fatigue syndrome patients report they are more anxious and distressed than people who don't have the condition, and they are also more likely to suppress those emotions."
"Patients with chronic fatigue syndrome often tell us that stress worsens their symptoms, but this study demonstrates a possible biological mechanism underlying this effect"

 

[Sargent]

I saw little to no progress in my physical symptoms from taking a purely brain retraining approach this past year.

May I ask, do you do meditation and get enough sleep?
If you do do meditation, do you feel bliss and deep relaxation while doing it?

I'm asking because I don't remember you mentioning these things in your posts, while people who recovered using brain retraining (in Neuffer interviews and other places) often say that sleep and meditation were crucial in their recovery. Also personally, I saw substantial improvements after I started going to sleep early (at ~7pm, using earplugs) and doing 1 hour deep relaxation meditation before and after sleep. (But my "brain retraining", if I can call it that, haven't produced substantial results yet, only relaxed me a little)

Did you talk to Dan about slowness of progress in your recovery? If so, what did he say?

 

[Sargent]

@mbunke
Is there any chance you could share that DNRS transcript or other interesting neuroplasticity stuff with me?
I would be grateful to you forever

 

[mbunke]

@Sargent Thanks for you response! I'll try to answer everything as best I can.

The idea is to "retrain" both the symptom itself and any distressing emotional response to the symptom. For instance when I feel either fatigue or a stressful reaction to the fatigue, I try to say to myself, "This is an outdated nervous system response that no longer needs to happen. I'm safe, I do not need fatigue to protect me anymore." Etc. I agree that fatigue is the body's natural response to stress, but the body should not need to sleep for 3 days after running a couple errands--that's why CFS is a pathology, specifically of neuroplasticity.

For example, I pushed myself and had a terribly unhealthy lifestyle for years, causing me to (appropriately) crash in July of 2017 (CFS onset). My body was appropriately stressed, and did need rest. It was appropriate and adaptive for my brain to cause me to crash from simple tasks like making myself a sandwich because I needed to learn how to rest.

But now, it has been over 3 years of resting constantly (I'm bed-bound and/or house-bound), I am no longer living that unhealthy lifestyle, and my brain still thinks making a sandwich is a "dangerous amount of exertion" because it believes it doesn't have the resources for it. I do have the resources for it now, I've had plenty of rest, but my brain was structurally changed from so much stress to believe this is the appropriate way to respond to these kinds of tasks, just like the quote about PTSD you posted. I LOVE this analogy, I use it all the time. It's the best and quickest way to describe CFS. It's a physiological form of PTSD. Rather than psychological trauma and symptoms, you're dealing primarily with physiological ones (virus, mold, structural issues, etc.)

However, I tried the approach of pushing myself even when I felt fatigued because it was just a "brain mistake." DON'T DO THIS, PEOPLE! You have to continue to stay inside your envelope, wait for the envelope to expand, and then start doing more. So I would say continue to get all the rest your body thinks it needs, but don't let your body convince you that it's appropriate to sleep all evening simply because you went on a short walk. That doesn't have to be a significant stressor. Okay, but this is where it gets really complex...

IF your brain is still responding by throwing you into dysfunction after the slightest stressor and brain retraining is not getting you anywhere, I believe that's because your brain is still being exposed to traumatic stress, so it appropriately doesn't feel safe yet. I'll share my own situation as an example of this. I had a stressful adolescence that led my brain to interpret many events traumatically, causing my survival brain to believe that any expression of my emotions was absolutely dangerous to my well-being (loved the research you shared on that!! I'd never seen that study!). Now, I've been in plenty of therapy for this, and my "thinking brain" knows that it's no longer dangerous to express myself, but no matter how many times I tell myself, "It's fine, I'm safe now!" my survival brain doesn't get the message because you can't always reach the survival brain through conscious thinking. If I handed you a raw egg and said, "Eat this!" You wouldn't be able to just "override" your disgust by "thinking it was delicious."

This is why simple brain training techniques usually aren't enough. You need more to access the unconscious brain. This is my next venture, right now I'm looking into: EMDR, Rapid Resolution Therapy, Accelerated Resolution Therapy, and hypnotism. I'll keep this thread posted. I'm also trying to remove any other stressors including mold and gut issues (think I have SIBO). So anyway, this is why I think my brain isn't catching on yet, because the trauma from my childhood is still being stored as trauma in my brain, and expressing my emotions still sends me into fight or flight, (I can feel it) and so therefore, it's not safe yet. I need to first find a way to resolve that trauma in my brain, which can be done, and is done all the time. Does that make sense?

Yes, I notice myself getting tense constantly, holding my breath a bit, etc. I haven't been able to unwire it, because of the reasons I explained above. I get a ton of sleep, and I was doing meditation quite a bit but have fallen out of habit recently. It's very difficult for me to do, I did not notice a big difference, but I plan to pick it up again once I've addressed some of these trauma things. I talked to Dan briefly about it and he wasn't much help. He's more of a science guy than a coach. But there are tons of other coaches.

I'm really glad you're seeing improvement! Please continue to keep me posted on your progress, and I LOVED the research you shared, please send me any interesting research like that you find!

 

[mbunke]

@mbunke
Is there any chance you could share that DNRS transcript or other interesting neuroplasticity stuff with me?
I would be grateful to you forever

I just tried looking up that transcript and looks like the website gives an error, if you're (or anyone) is interesting in seeing some of the DNRS program, send me your email! @Sargent I'll send you a resource dump too

 

[Mesurfer]

Nah

 

[Sargent]

@mbunke
Thank you for very thorough answer! It all makes sense, but I still have question in my mind: when we do small tasks that cause us crash later,
- is it primarily because of our brain misinterpretation, (in this case body's reaction of being tired is unnatural and needs to be re-programmed), or
- is it because when we do things, we tense ourselves (without realizing it), and since we habituated this stress reaction so much, even this small stress drains lot of energy (in this case body reaction of being tired is natural and what needs to be re-programmed is stop doing stress reactions to everyday activities).

Probably like you said, both are the culprits. I just wonder if one of them is much more significant than the other and needs more attention.
You wrote "don't let your body convince you that it's appropriate to sleep all evening simply because you went on a short walk" - but wouldn't not letting body do what it wants (rest) be just more of "pushing" that got us into this? I don't know.

I like that Neuffer emphasizes in his approach removing all stress from your life, including energy-draining thoughts and information: internet, TV etc. Also Dr. Poesneker, who specialized in treating CFS all his life since 1960s, and had a clinic in PA specifically for PwME, came to conclusion that to recover from CFS patient must remove all stress from his life for ~6-12 months, incl emotional, mental (including TV/internet), physical.

Btw, my situation is similar to yours (and probably to most PwME), I had rough adolescence, then I was constantly pushing myself til I came down with fatigue. I'm also perfectionist, nerd workaholic without good sense of boundaries. It is interesting that many of PwME have same character traits. I read on some psychology forum one experienced psychologist said he noticed that most of his patients who suffer from fatigue, dysautonomia, panic attacks, have 2 things in common: unreleased anger and lack of sense of boundaries.

 

[Sargent]

I was doing meditation quite a bit but have fallen out of habit recently. It's very difficult for me to do, I did not notice a big difference

I want to share some advice on meditation, if I may.
If silent mindful meditation doesn't do it for you, look up on YouTube or InsightTimer app guided meditations with smooth voice that you like, that doesn't feel intrusive. (personally, I found ~90% of meditations on YT not relaxing (often irritating), the ones that work for me are from YT channel Mindful Movement, also content/voices of Honest Guys and Michael Sealy are good). Also setting volume low makes me more receptive to them. I download meditations and play them wearing headphones with volume / equalizer / playback speed settings as easy on my ears and mind as possible. ~90% of the time I feel bliss / deep relax, while with silent meditation it happens only 20-30% of the time.
I found advice of Claudia Goodell (you probably saw her interview by Dan, she had CFS for a long time and recovered in 3 months) to be extremly helpful: when doing meditation, concentrate on your breathing and keep trying to relax deeper during whole session, i.e. dont stop at certain level of relaxation. I actually have body jolts and sensations during this deep relaxation, just like Claudia said she had.
As Claudia said, meditation needs practice.

 

[Sargent]

@mbunke

What helped me to deal with my childhood trauma was a specific type of journaling: first you write about emotions of the stressful event, let it all out with a strong language, but (important) dont write about event itself, only about emotions you experienced at that moment. Second, you try to make peace with that event, write a logical conclusion, like "it was a lesson, its time to forgive.. some people are in much deeper trouble than me, ..its going to be alright .. etc".
Everyday write about one of 3 topics: 1. Past emotions 2. Present emotions 3. What traits of your character excabarate your stressful reactions and how to change them, for people like us with CFS/FM its usually: perfectionism, desire to please others, not feeling/not enforcing personal boundaries.
Journaling for 20min a day helped me more than psychotherapy or a punching bag. Maybe it can help you too.

 

[Sargent]

Btw, in regard to journaling and psychotherapy: remembering trauma must always be concluded with some sort of reconciliation, because as Karim Nader experiments showed, we can change our memories every time we access them! New "old" memories = new brain maps = neuroplasticity at work.
Here is excerpt from Peter Levine book, where he summarize it well:

"In a revolutionary experiment, Nader taught a number of rats to associate a specific (neutral) sound with a subsequent painful electric shock. After reinforcing this fear conditioning for some weeks, Nader then exposed the rats to the sound without subsequently administering the shock. The rats still froze in fear of the shock, exhibiting the same physiological arousal responses Nader had conditioned in them. In itself, this “run of the mill” Pavlovian conditioned reflex was not surprising. But Nader again repeated the conditioned stimulus (the sound exposure alone), this time after having injected a specific chemical that inhibits protein synthesis directly into the rats’ amygdalae (the fear center in the “emotional” brain). 43 Neither he nor his staid mentor could believe what happened when he played the sound this time. In Nader’s words, “The fear memory was gone; the rats had forgotten everything.” The emphasis LeDoux (and Kandel) put on the memory paradigm of fixed anatomical structures and static biochemistry was overturned by Nader’s clear demonstration of the mutable re-creation of memory in the process of recall. Contrary to what the embarrassed LeDoux had predicted, the relative absence of fear in response to the sound remained stable long after the injection had worn off. Nader had, indeed, fully and permanently erased a fear memory! The crucial ingredient in Nader’s remarkable outcome was the precisely coordinated timing between the injection of the protein inhibitor and the evocation of a memory. In addition, the rats forgot only the unique memory (the specific sound), the one they had been forced to remember during the time interval when they were “under the influence” of the protein inhibitor. Fear that was conditioned to other sounds was unaffected, as were other unrelated memories. The erasure was indeed very specific to that particular tone. Simply put, if new proteins could not be created during the act of remembering, then the original memory ceased to exist! The stunning implication of Nader’s breakthrough research is that memories are not formed and then pristinely maintained, as was previously assumed. Rather, memories are formed and then rebuilt anew every time they are accessed, i.e. remembered. In a 2012 article on Nader’s research, Jonah Lehrer writes, “Every time we reflect upon the past, we are delicately transforming its cellular representation in the brain, changing its underlying neural circuitry.” 44 Nader’s newly converted mentor, LeDoux, humbly chimed in with this apt statement: “The brain isn’t interested in having a set of perfect memories about the past … instead, memory comes with a natural updating mechanism, which is how we make sure that the information taking up valuable space inside our head is still useful. This might make our memories less accurate, but it certainly makes them more relevant to the present and future [i.e., makes them adaptive].” 45 The takeaway message from this exciting line of research is that the purpose of the very act of recall is to provide the molecular opportunity to update a memory based upon new information."

 

[niccon]

Hello all, and thanks for the great info.

"This is why simple brain training techniques usually aren't enough. You need more to access the unconscious brain. This is my next venture, right now I'm looking into: EMDR, Rapid Resolution Therapy, Accelerated Resolution Therapy, and hypnotism...."

@mbunke
I've had MECFS for 2 years now, and it started after a period of prolonged stress. I tried EMDR for 6 months, once a week, since I suspect I have childhood traumas, but it was not efficient. Not many memories came up. My therapist used 2 little vibrating handles instead of the fingers that go left to right. I have done 2 long psychotherapies in the past. No much results. My emotions have been raw for a long time, and I believe they finally brewed up this disease.

Did you started EMDR yet? Where could i send you a private message to please? I don't find it in the settings...

 

[mbunke]

Hello all, and thanks for the great info.

"This is why simple brain training techniques usually aren't enough. You need more to access the unconscious brain. This is my next venture, right now I'm looking into: EMDR, Rapid Resolution Therapy, Accelerated Resolution Therapy, and hypnotism...."

@mbunke
I've had MECFS for 2 years now, and it started after a period of prolonged stress. I tried EMDR for 6 months, once a week, since I suspect I have childhood traumas, but it was not efficient. Not many memories came up. My therapist used 2 little vibrating handles instead of the fingers that go left to right. I have done 2 long psychotherapies in the past. No much results. My emotions have been raw for a long time, and I believe they finally brewed up this disease.

Did you started EMDR yet? Where could i send you a private message to please? I don't find it in the settings...

Hey! You can send a private message by clicking Inbox at the top of the page and "Start a new conversation" and then search my name.

 

[Aerose91]

Hello all, and thanks for the great info.

"This is why simple brain training techniques usually aren't enough. You need more to access the unconscious brain. This is my next venture, right now I'm looking into: EMDR, Rapid Resolution Therapy, Accelerated Resolution Therapy, and hypnotism...."

@mbunke
I've had MECFS for 2 years now, and it started after a period of prolonged stress. I tried EMDR for 6 months, once a week, since I suspect I have childhood traumas, but it was not efficient. Not many memories came up. My therapist used 2 little vibrating handles instead of the fingers that go left to right. I have done 2 long psychotherapies in the past. No much results. My emotions have been raw for a long time, and I believe they finally brewed up this disease.

Did you started EMDR yet? Where could i send you a private message to please? I don't find it in the settings...

"This is why simple brain training techniques usually aren't enough. You need more to access the unconscious brain. This is my next venture, right now I'm looking into: EMDR, Rapid Resolution Therapy, Accelerated Resolution Therapy, and hypnotism"

This is somethung that really interests me. Ive been doing DNRS for a while but my emotions are extremely blunted. That makes ug hard as hell to do much of the program. I feel like there is a deeper layer in me that I need to access but can't. A purge, almost. It feels like both toxins and emotions but the thing is, I dont know what they are. I need to find out what they are!

 

[mbunke]

@Aerose91 I am the same way! Here's how I would describe my experience: I couldn't do DNRS because it's based around using happy memories to rewire your brain, but none of my memories made me feel safe, just the opposite. Every memory--even the "happy" ones--were colored with trauma and stress. My life has been complex enough that the trauma I experienced seeped into everything. I tried and tried to do DNRS and also ANS Rewire for months, not getting anywhere, which, as several people have pointed out in this thread, actually hurts your mental state because you become so angry and discouraged. So I made a deal with myself, that I would trust my instincts, listen to what my body and brain were telling me, and not push them to do something they were resisting. (Sometimes resistance should be challenged, but this didn't feel like that.)

I knew that my past was heavy enough that simple neurolinguistic programming wasn't going to do the trick, and forcing that only enraged me further and exacerbated negative emotions. Out of all the things I researched that help unwire trauma, EMDR sounded like the right approach for me. I've been doing that for a couple months now, and am slowly but surely starting to see results. The beliefs I've lived with my whole life that exacerbate my pain/fatigue are starting to unlock and then disappear. I can feel the darkness lifting and joy returning, I am more open and less irritable and guarded around those who were part of those unpleasant memories. I have a looooong way to go, but I'm not rushing it (I wish I could, but I know that's not possible), I'm going at my body and brain's pace, letting them lead me where they need to go.

Important point! Spending one hour per week with my therapist doing EMDR is about 10% as effective as doing that PLUS spending designated time every day to tend to my mental/emotional needs. For me, this has looked like: writing affirmations every day (something that has always sounded so stupid to me, but now I love), spiritual practices like scripture reading and prayer, spending time outside, being open about all of this with my friends and explicitly asking for their support when I need it, and journaling. It seems that stream of consciousness journaling doesn't help me as much, but rather writing a sort of "letter" to myself--telling myself what I need to hear. Reminding myself of what's true, despite what feels true ("Michaela--your friends love and support you, they are not laughing at you behind your back," etc.)

I have trouble like you do @Aerose91 accessing my feelings. They've been buried for so long and I'm a cerebral person, not a "feeler" by nature. I want to try psilocybin to see if this opens me up, there are studies that show incredible results using it for depression, PTSD, etc. Maybe marijuana could help too? Something that's been helpful is doing practices daily that get me out of my head, so instead of doing what I'd normally do like listening to a nonfiction audiobook, I'll listen to music, or read/write poetry, play my guitar, enjoy nature, etc. Try to cultivate the feeling part of me and get in touch with it more. (I can't believe how hippie I've become!) I'm also trying to integrate gentle yoga to see how movement feels.

 

[5vforest]

My emotions have been raw for a long time, and I believe they finally brewed up this disease.

I don’t usually jump in to give unsolicited advice, but I would be very careful with these types of thoughts.

ME/CFS is a real, biomedical disease for which there is no evidence that it can be caused by negative emotions or trauma, despite the fact that some unscrupulous practitioners may say so.

Nobody should blame themselves for coming down with this illness. Just living with it is difficult enough.

 

[Azayliah]

ME/CFS is a real, biomedical disease for which there is no evidence that it can be caused by negative emotions or trauma, despite the fact that some unscrupulous practitioners may say so.

Nobody should blame themselves for coming down with this illness.

Yes, we shouldn't blame ourselves. But it's not blaming yourself to say you went through trauma and that is affecting your body. The brain has amazing capability, and when things go wrong there it certainly affects the body. There is some growing evidence on the effects of childhood trauma and also indications that detrimental effects from physical/emotional trauma/stress carry generationally. None of this is the fault of the person experiencing the effects.

I disagree that we should be skeptical of a possible a cause simply because of a lack of biomedical evidence. Or rather, I think it's beside the point. Believing that trauma led to ME/CFS when addressing that trauma brings relief is the same as believing that if supplements helped then ME/CFS came from nutritional deficiencies, or that if balancing gut flora helped then an imbalance is to blame. We don't have solid evidence that ME is caused by a disease, internal imbalance, or physical injury, and there seems to be plenty of quackery among physicians, nutritionists, therapists, etc. So, I think the point is more, that regardless of how scientific something seems, we should be open to exploring many avenues, wary of believing that if something helps us it must then correlate to a cause, and skeptical of any "professionals" who promote simple or expensive cures.

---

As to my own experiences with DNRS...

Curable has never worked for my PEM or other fatigues. A detrimental thing I have found with focusing is that if I do this too much on an area it seems to cause the muscles there to jerk or spasm with increasing intensity. (On the other hand, focusing on areas of my body also make me aware of pain and fatigue intensity for that area so I can avoid pushing too hard, so some focusing seems like a good idea.)

However, I found Curable helpful for the pain of fibromyalgia and migraines. I shortened a meditation exercise where you are supposed to notice pain and try to identify the emotions underlying it. Instead of meditating, I just ask my body to release the full set of emotions held where the pain is occurring and then take a moment to fully feel and try to identify the emotions. It seems to work fully about 75% of the time, and results in at least some pain reduction the other 25%.

Breathing exercises help my muscles relax. This is significant because there are times where they lock up and I cannot "will" them to ease, and also because there is often tension in my body that I was unaware of; conscious breathing can help with both. Breathing also helps me with some of those annoying skin sensations like itching, stinging, or burning, and sometimes calms down my heart when it's racing.

I tried EFT a while. It helps with emotional upsets but is tiring to use, so I haven't applied it enough to know if it's useful for other issues. I've considered EMDR, but everything I read about it says to go to a professional and that it's not something you can do on your own... so I'm reluctant.

I'm not sure it's entirely related, but I really want to try lucid dreaming, consciously. I have had dreams where I realized I was dreaming a few times in my life, so I do at least know it's possible, but I've never done it at will or with a high level of consciousness. There are some... interesting stories about lucid dreamers healing themselves, having deeper meditations, and talking to subconscious aspects of themselves to overcome long-held issues. I don't know that I believe all of that but I figure it's worth a shot, and if nothing else I would at least be able to enjoy walking outside or doing something artistic in my dreams.

 

[Martin aka paused||M.E.]

I hesitate to say but a friend of mine came out of bed with DNRS. And I saw her lab results. Much worse than mine (ATP, inflammation etc)

 

[Jyoti]

The paths to healing are likely as many and as diverse as the paths to Maslow's peak experience, or to God. We--and many others--are dealing with something that so far has defied science's capacity to unlock. And science may not have the all the necessary tools.

@5vforest makes a point that we all can bear in mind, though--which is that we have to think carefully about how we approach the (currently--remember that science often lags behind lived experience) paths that lie outside of the medical 'box' since these very possibilities are the things that have been turned into cudgels by the medical profession and used against us. It feels wrong--a betrayal of all we know and each other-- in some ways to give any credence to the 'its all in your head' story.

But...scientific geniuses (and geniuses in any discipline) are the ones who think and explore beyond the accepted parameters. We know that

ME/CFS is a real, biomedical disease

and yet that does not -- in a space where we don't have to defend against that cudgel--preclude the possibility that some healing potential lies in the mind, which we know is intimately connected with everything else.

 

[YippeeKi YOW !!]

I don’t usually jump in to give unsolicited advice, but I would be very careful with these types of thoughts.

ME/CFS is a real, biomedical disease for which there is no evidence that it can be caused by negative emotions or trauma, despite the fact that some unscrupulous practitioners may say so.

Let me jump right in here with you in agreement, since two targets are harder to hit then just the one. At least that's my theory.

And also, let me say that I'm a strong proponent of the belief that so little is actually known about this baffling little finger trap of an illness -- not hypothesized, not theorized, not 'believed', not 'researched', but actually known for an absolute fact, including its genesis and treatment -- that there are probably multiple experimental ways to improve its impact, reduce its effect on our lives, and maybe even inch a little closer to the Holy Grail of 'normal', so I'm about as far from a staunch supporter of hard-core allopathic, prescription-based medicine as you can get, without becoing a Luddite.

I've heard many many MANY stories about someone whose cousin's wife's sister's hairdresser has a friend whose brother's wife was totally healed of (fill in the disease of your choice) by things like the Lightening Process, NLP, and The Gupta Program.

I'm not saying they don't work, or that they can't possibly smooth the way, but I'll withhold final determination til I hear from someone I know personally who experiences any benefit from those programs. Or even gets the much-vaunted and promised TOTAL refund if the programs should fail to help.

So far, nada.

What I object to is not the absolute right to self-experimentation of any nature we each individually chose, in the absence of any real treatment beyond small, scattered experimental programs with varying doses of anti-psychotics, antihelminthics, anti-depressants, anti-anxiety drugs, antibiotics, antifungals, bipolar meds, etc, but rather the incredibly punitive tax that the cost of these programs can impose on desperately ill patients who can ill-afford them, and can even less afford the loss of hope that follows any failure. A failure which, in many cases, is blamed on the patient, not the treatment, deepening the sense of hopelessness and despair.

And now, I'll quietly see myself out while I still can ....