r/cfsnervoussystemwork

Voluntary attention regulates acute immune responses in humans | Nature Human Behaviour

Two groups of people had standardized histamine skin prick tests:

Group 1: Instructed to direct attention toward bodily sensations
Group 2: Instructed to watch a video

Group 1 perceived itching/burning sensations to be more noticeable, but interestingly, they had more regulated inflammatory responses, and returned to baseline more quickly. So they were simultaneously more aware of symptoms and had a milder immune response and quicker return to homeostasis.

Group 2 perceived milder symptoms, but had greater inflammatory responses.

Sympathetic activity was no different between groups, but Group 1 had increased HRV (proxy for parasympathetic activity)

Interestingly, applying topical lidocaine and repeating the experiment produced the same results -- people who were distracted still had greater inflammatory responses, and people who focused attention internally had milder inflammatory responses, even though they were less aware of the itching/burning.

This was FASCINATING to me!! It sounds so much like somatic tracking.

However, we can't say that:

x This applies to chronic inflammation
x This proves somatic tracking works
x Ruminating on symptoms is beneficial. We don't know the participants' mental states or attitudes toward symptoms.
x We know the exact neural pathways involved in this process

So there are major limitations on applying it to what we do here, BUT I think it's a really cool vote of confidence that what we choose to do with our attention and thoughts can have a measurable impact on the immune system.

Is it true that you “level up” after responding well to a dip?

I’m in a very spicy dip. What I mean by that is very low capacity and very loud symptoms. It’s day 5.

I was beginning to come out of it, because I went to fight or flight from shutdown.. but then I had a huuuuge fight with my boyfriend, where I screamed and cried a lot. Now I can feel it come back very intensely.

Do you think it ruined anything??? :(
How will you even know that… I just think I need some kind and reassuring words. I’m severe and bedbound, so not much capacity. Like 0 capacity in a dip.

So a quite traumatic thing happened to me recently after being in cfs recovery for 3 months. I had been making okay progress from somatic tracking, allowing body scans etc. But when this traumatic thing happened it really has thrown my nervous system off.

I thought to process these deep overwhelming emotions of grief and betrayal i should try journalling how i felt about the person who had wronged me. But for the last two evenings i have done this my nervous system is fully activated afterwards in a way i havent felt for months, and doesnt return to baseline (like it does for most other things now). This has made me struggle to sleep at night from the continued activation.

Should i avoid journalling until my ns is more settled again? Why could writing out these intense feelings cause this?

Hi,

I have been trying to do brain retraining for 2 weeks and barely nothing works

Background : moderate-severe ME, chronic anxiety / fight or flight, PTSD, mental OCD, depression, GAD, burnout, severe sleep issues. Meds works a bit for depression, but not for anxiety.

My success :

3 days ago i started playing ukulele again, everyday, and have few symptoms. However i don’t feel joy ( severe depression ).

Not over scanning symptoms, worry less about symptoms : I do more bc I don’t stop as quick, i am less anxious about symptoms but still anxious Especially of anxiety and the fact that I Struggle with brain retraining. Feeling despaired / hopeless,

Failures :

Daily non guided 30 min Yoda Nidra or mindfulness : not calm, always in fight or flight even with not anxious thoughts, makes my HR rise by 20 beats.

Guided meditation ( Joe Dispensa ) : after 15 min I have sound intolerance. No effects

Breathwork : hate it and no benefits at all. Only tried for 5 min max.

Visualization : I barely don’y do it, I hate it. Sometimes I can feel emotions but I don’t like feeling emotions. I feel like it’s too much mess for my brain.

Being outside, under the sun : makes me very anxious ( PTSD, I feel less secure )

Hugging my iner child, telling myself that I am safe ; no effects

Walking, seing friends, talking much.: I am too scared of getting worse for that

What should I do ?! Anyone recovered inspite on so many issues :/ ?

I’ve been reading about mind-body for a few days, and I feel hope again.
I’m having a severe relapse since one month after one year of «better », 2 years long hauling Long covid in total.

I lost my strength over the course of one week after pushing physically very hard in the heatwave and catching a good fever. Slowly, had trouble to walk and put one feet after the other. Had to be put on sick leave and got very panicked and devastated as I didnt think it was possible for me to relapse this low after improving.

My primary symptom is extreme weakness, especially in legs, pressure in muscle, shaking when standing. I feel like my legs are made of wood.
This is the only thing that stops me from believing it’s my brain and nervous system sending and doing this.
Medical exams are all good.

I’ve been bedbound before but different symptoms.

Has anyone recovered from muscle weakness ?

Summary: I feel like I’ve pushed my body far beyond what it could tolerate, and now I’m trapped in relentless crashes, severe autonomic overactivation, profound sleep dysfunction and malnutrition, with no ability to reach even a stable bedbound baseline.
I feel like I’ve caused too much damage.

My illness started 3 years ago. Instead of resting and pacing, I kept pushing myself. I kept working through crashes because I thought that if I just pushed a little more, eventually I would get to a place where I could rest and recover. I didn’t listen to my body and I didn’t pace properly, and I kept pushing until I completely broke down.

Before, it was mostly push-crash. Now I feel like I’m trapped in crash after crash after crash, and I can’t find my way out.

I’ve even fainted and had seizure-like episodes from stimulation. My nervous system feels completely overwhelmed by even very small amounts of stimulation.

I don’t even know how I’m supposed to pace anymore when I’m already in a crash and then immediately go into another crash. How am I supposed to pace when even lying down feels like exertion?

I’m not sleeping. I’m stuck in adrenaline. My heart is pounding, my brain is racing, and my whole body feels like it is permanently switched into fight-or-flight.
When I do manage to sleep, it’s fragmented into 3–3 hour periods with vivid dreams. I wake up feeling like I haven’t rested at all. There is NO rest-and-digest, no homeostasis, no feeling of my body ever switching off.

My body never calms down. Everything triggers it.
If I manage to sleep for a little while, I wake up feeling like I’m -10,000 below baseline. I don’t even want to move because the moment I move, the adrenaline starts again and my heart begins pounding.
I’m becoming malnourished. I’m losing my hair. I can’t even reach a stable bedbound state. I’m already lying down and resting, but my body still feels like it is exerting itself.

I feel like I’m getting weaker and weaker, and I don’t know how I’m supposed to recover when I can’t even get my body into a state where it can actually rest.
It has been almost one year of this severe state.
I haven’t seen anyone else who is this severe. I keep wondering if there is another way for the body to heal, because I genuinely don’t know what else I can do.
I know my body. I know myself. And I feel like this is severe ME/CFS, and that I have pushed myself far beyond what my body could tolerate.

I don’t know what to do anymore. I don’t even know what normal sleep feels like anymore. Benzos don’t help either — I’m starting to have paradoxical reactions to them.
I’m starting to give up because it is simply too much suffering.
Bedbound state would be a vacation for me! Without symptoms. Not survival.

And the worst part is that I keep blaming myself. I keep thinking that this is all my fault because I didn’t listen to my body earlier, I didn’t pace, and I kept pushing through crashes.
It feels like I did too much damage and that now it’s too late.

I feel like my body is going to give up, and I don’t know how I can keep fighting like this for years.

This is embarrassing to admit as a 29F but my “toolbox” is no longer working to help me self regulate and I don’t know what to do. I’m constantly on edge and feel like my skin is crawling no matter what I do to try and mange it. When I’m overstimulated the go to is to “get the jitters out” and I often dance/ run after work. And I feel like I never run enough. On really bad days I just sit in the shower in the dark and try deep breathing/ visualizing the bad day going down the drain. I give myself at least 10 minutes in the morning to meditate and often use a weighted blanket. When it’s really bad my SO will lay on me. The only real relief I get is when I smoke THC but I was doing great not using drugs of any sort for months. I’ve also had my back go out and have been in chronic pain for the last month and I feel that’s adding to my over stimulation. What could I add to help?

Today I’m in a really dark place and could use some hope.

I’ve been working on healing developmental trauma for many years, but over the last two years I’ve shifted into somatic approaches (Somatic Experiencing, nervous system work, self-parenting, etc.). In many ways I can see progress. My anxiety is much lower, I feel more connected to myself, and I’m slowly learning what safety feels like.

But emotionally it has become much harder.
Instead of anxiety, I’m now experiencing waves of deep grief, hopelessness and depression. About every two weeks I seem to have a massive emotional flashback that completely knocks me down for several days. During those periods I feel psychologically and physically crushed.
At the same time I’m also recovering from CFS/ME. I do think I’m making slow progress overall, but these emotional crashes seem to trigger physical crashes too, and in those moments I become convinced that my nervous system will never truly calm down because of CPTSD. It feels like I’m taking one step forward and then several steps back.

The frustrating part is that I’m doing “all the right things.” I’ve removed major stressors from my life, I have an amazing trauma therapist, a supportive partner and family, I practice self-parenting every day, and I constantly work on creating safety in my nervous system.

Yet every so often I completely lose hope and start wondering if I’ll ever get out of this cycle.
Has anyone here had both CPTSD (especially developmental trauma) and CFS/ME and eventually recovered—or at least reached a place where the emotional flashbacks stopped overwhelming your nervous system?

I don’t necessarily need advice today. I think I mostly need to hear that healing is possible, even if it takes a long time.

TL;DR: Working with a brain retraining coach helped me enormously. Also, working with a Mind Body Reconnect coach, daily mindfulness meditation and maintaining a low histamine diet.

Initial infection: January 2022

Start of LC: February 2022

Start of significant improvements: April 2025

My LC Symptoms:

Insomnia and panic attacks (improved early on, probably thanks to Sertraline and a low-histamine diet). Long-term symptoms – fatigue, PEM, depression, anxiety, gut dysbiosis, histamine intolerance, brain fog, headaches, tingling, sensation of vibrations, sensation of burning skin, night sweats.

What didn’t create or contribute to long-term, lasting improvements:

Gut treatments – nystatin, antibiotics, anti-fungals, etc.

Ivermectin

Keto diet

Hyperbaric Oxygen Treatment

Monitoring and avoiding blood sugar spikes

Nutritional therapy

Supplements

Rigid pacing/planning

What did contribute to lasting improvements:

Sertraline

Mindfulness meditation

Low-histamine diet

Anti-histamines (I think)

Working with a Gupta program coach

Parts work (to an extent)

Mind Body Reconnect (MBR)

Seeing friends

Change of environment

Being in nature

Finding joy

Self-compassion practice

CBT for Insomnia

What’s helped manage symptoms but didn’t necessarily lead to improvements:

Pamela Rose’s support group

Focusing (Eugene Gendlin’s technique)

Buddhist Dharma talks

Yoga nidra / stretching / breathwork

How bad was I?

My worst point was being bed-bound for three weeks unable to read, listen to music, or watch TV, waking up each night with heart palpitations and panic attacks. It was at this point that I seriously considered taking my life. I’m so glad I didn’t.

During the first year, I began to see improvements when I adopted a low-histamine diet and did CBT for insomnia. However, my condition worsened when I pursued gut treatments and a keto diet on the advice of a functional doctor.

For more than three years, the most I was able to walk continuously for was 15 minutes – I don’t remember how long this lasted. For most of the time, I was limited to 5/10 minutes.

For about a year and a half I couldn’t watch TV, read books or socialise with friends for more than 45 minutes without getting crippling headaches that could last for days.

How did I start to improve?

Early on, sertraline stabilised by mood and (when combined with CBT) slowly resolved my insomnia.

Adopting a low-histamine diet helped lessen most of my symptoms.

Regular mindfulness meditation helped calm my nervous system and, more importantly, cultivate compassionate awareness of body and mind. This awareness proved essential to the mind body techniques I practiced.

My brother’s wedding in the Caribbean. I was terrified that flying from the UK to the Caribbean would set me back, but it actually did the opposite. On the day, I was the most active I’d been in years and I didn’t experience a crash afterwards. Just regular tiredness.

At the time I was working with fatigue coach Pamela Rose, who suggested I look into brain retraining as I had experienced such a significant although temporary improvement while on holiday.

I researched the different programs and eventually settled on the Gupta Program, which resonated most with me. I worked through the GP for six months without seeing much in the way of improvement. It was only when I started working with a Gupta coach that I saw real gains.

I began working with Gupta coach Clare Gee at the end of March 2025. With Clare’s help, I was able to tailor the Gupta program to my needs. Clare helped me use brain retraining when it’s most effective – at the moment I was experiencing symptoms. Within a few weeks I was able to read as much as I wanted.

At the end of April 2025, I visited a friend in London. My friend pushed me to do more than I was used to – we went for walks, went to the pub, had coffee out, watched TV. I used it all as an opportunity to practice brain retraining and it worked. Suddenly I was able to watch films, go for walks, talk as much as I wanted.

I worked with Clare regularly for about 5-6 months. During this time I went from about 20% to 60% recovered.

Last autumn I felt like I’d hit a plateau, so I did some research and decided to try Mind Body Reconnect (MBR). I started MBR about in March 2026. So far I’ve seen modest improvements – I’m more aware of when my symptoms appear and am more open to what they’re trying to communicate.

I’ve noticed that the MBR framework is helpful in certain situations, while the Gupta brain retraining framework is helpful in others. But to be honest, I often feel unsure which approach would be better and don’t realise until afterwards.

In terms of concrete gains from MBR, I find myself able to use a computer for longer than before and to socialise with friends for as long as I want. I now feel confident making a day trip to see a friend, walking for miles around town and returning home, knowing that I won’t experience any PEM.

I continue to experience most symptoms, just to a much lesser extent than before. After pursuing a purely medical recovery, I’m now convinced that nervous system work is much more helpful – at least in my case. I’m not yet working but I hope to return to work later this year.

What I’m doing now:

Daily mindfulness meditation

Occasional afternoon nap

MBR coaching

Magnesium & B12 supplements

Sertraline

Anti-histamines

Low-histamine diet

Semi-regular Focusing sessions

Occasional brain retraining (when symptoms arise)

What still triggers an NS response:

Cardio exercise

Histamine foods

Emotionally draining experiences

Work – depends on the day and nature of work; I can usually work on a computer for 1-1.5 hours before symptoms

I need to cry it out. It being trauma from abuse before a court date. But I can't seem to really get it going today. Any tips? Songs? YouTube videos? Any experiences?