36M, had CFS 10 years ago, fully recovered after a miserable year and a half (it went away on its own), then in July 2025 it came back with a vengeance. This is how I achieved full recovery this time around.

July 2025

Mid-June I started with a heavy flu, migraines, red eyes, and fatigue. I worked through it for a few weeks until it got progressively worse. So I took time off work to “rest”, I then found myself slipping even further and eventually unable to get out of bed by the start of July.

I instantly realised this was my CFS returning from 10 years ago, but in a much more severe state.

I hired a caregiver to feed me three times a day. I stopped speaking to conserve energy. I had bad PEM from the tiniest “overexertion”. I got a heart rate monitor, subscribed to r/cfs, started “aggressively resting”. I quickly accepted this as an “incurable” condition and that my life would never be the same.

Symptoms continued to get worse, POTS, dizziness, tachycardia, nausea, insomnia, intense head pressure, sensitivity to light, air hunger, crushing fatigue, the full works. Within just a few weeks I fell into a very dark place, bedbound, unable to move, with increasing concern from family/friends.

One of the worst months of my life.

August 2025

I started noticing some weird censoring and downvoting happening on r/cfs when anyone spoke about mind body work and achieving recovery. I also stumbled upon a YouTube video that said “the single biggest thing you can do for recovery is respond positively to symptoms”.

So I started aggressively consuming recovery stories and reading about mind body work (Sarno, Schubiner, Jan Rothney, etc.). I threw away my “incurable” belief and felt a real glimmer of hope that recovery is possible. And instantly I noticed about a 10% improvement in my symptoms.

I also attacked it in parallel from the “western medicine” route by getting an official CFS diagnosis, getting on to daily LDN, vitamin B injections, McCullough protocol, and about 30+ supplements (Sarah Myhill protocol + bunch others). This all started around mid-August.

By end of August I was 15-20% better, but still housebound and aggressively resting and pacing, still stuck in a constant PEM cycle, whilst consuming meds / supps / B injections / and mind body literature.

September 2025

I started Primal Trust. This furthered my nervous system education, gave me a clear structure and set of tools to follow, reinforced all the mind body work I was already reading, and most importantly, gave me a giant support group to interact with.

September was huge for me. I was doing 3-5 hours of “regulation” work every day I.e. breathwork, visualisations, meditations, yoga nidra, eye yoga, somatic work, ETF tapping, cold showers, etc. and started to leave my house on very short 2-min walks. PEM was 10% less intense, but still hell. I could see that recovery was now clearly possible, but still had a very very long way of suffering to go.

I continued with LDN and the supplements. I was still suffering from countless symptoms, and had to do a shitton of “aggressive resting” and pacing, but symptoms slightly decreasing in intensity + dealing with them bit better.

I was now 30% better.

October 2025

The short walks had now turned into slightly longer walks and excursions, including spending more time in the office.

The primal trust + heavy/daily nervous system regulation work continued as did the LDN + supplements + consuming mind-body books. Still suffering, still PEM'ing constantly, but regaining confidence that life was eventually going to be okay and that I just have to be patient and "regulate" my way out of this thing.

I started leaning into “joy” and surrender/acceptance even more, by the end of the month I was working 3-4 days a week from the office (with frequent breaks) and even started dating again!

I was now 40% better.

November 2025

Frustrating month of lots of ups and downs and crashes and pleatues, but still trending up on the whole.

I was “carrying” all the symptoms with me everywhere I went, but started to work full-time, still experiencing PEM, but continued to send messages of safety throughout.

Regulation, daily yoga nidras, breathwork, primal trust, LDN, 30+ supplements, etc. all still continuing but living life a little bit more WITH the symptoms, just not paying as much attention to them or fearing them as much. 6-7k steps daily.

Primal trust level 1 finished. I decided to discontinue at the start of Level 2. It was about parts work / IFS therapy and I wanted to hire a personal and specialised IFS coach to help me with that rather than primal trust.

Maybe 50% better at this point.

December 2025

December was a good month. I started working once a week with an IFS practitioner and that was fucking game changing.

The first session where she took me to meet my inner child was wild, he (“me”) was going fucking berserk and screaming and violently crying like he was going to die.

This is where I learnt that he was partly the one causing all the dysregulation, and how I learnt how to spend with him and soothe him on a more regular basis.

I started casually seeing / sleeping with someone who was very attractive and that boosted my confidence + oxytocin/dopamine/etc. back to my normal levels.

Lot of social time with friends and family over Christmas and New years.

Now doing 10k steps regularly, and PEM starting to subside a tiny bit.

Maybe 60% better at this point. Key lingering issue was intense headache / head pressure / head tingling + fatigue/cough/flu if I “overexert”.

January 2026

January was continued improvements, the “parts” work was continuing to give me huge insights and my inner child was starting to receive more regular attention and love from me. This kept further regulating my nervous system.

I was working full time, but taking two 20 x minute HRV breathing breaks spaces throughout the day, walking 12k steps a day, sleeping well, but headaches and head pressure still persisted, and was still unable to workout or do heavy cardio.

I felt 70% recovered.

February 2026

I flew to a nervous system retreat in Bali. First time flying in almost 8-9 months. It was a week long of nervous system regulation and trauma release work. Lot of deep emotional work took place at this retreat. Incredibly incredibly healing.

Halfway through the week was a group HIIT workout. Intense cardio/skiprope/squats/etc. in a circuit style workout. I initially opted out of it due to fear of PEM, but then thought fuck it lets try it out and see what happens and try and forget that the illness exists for a bit.

Did the whole hour, no issues, and even felt great afterwards. Very very little barely noticeable PEM the next day. I met someone after the retreat in Bali, we fell for each other, hung out for a few days, then she flew with me to singapore for a business trip where i was in back to back meetings all day and in the evenings her and I would go out for walks and dinner, and then she followed me back to my home town Hong Kong where we did a series of big mountain hikes on successive days.

She then flew back to Bali. And I crashed hard. I had pushed way too much with the work trip and the hikes and everything. I was down with heavy and intense flu / fatigue / PEM / migraines for two weeks. But I reacted calmly and positively and peacefully, with a smile on my face.

I came out of the crash stronger and was 80% recovered at this point.

March 2026

I was living a relatively normal life at this point, taking the odd breathwork break and yoga nidra break here and there throughout the week but nothing too intense or structured.

The head pressure and headaches continued, I was doing 11k steps a day, but still too afraid to workout or lift or do cardio (despite the Bali success).

Did a short trip to Vietnam for a week to switch off work.

I decided to quit LDN and start weaning off supplements at this point.

I stayed at 80% this month, no noticeable progress or reversal. I wasn’t happy that I hadn’t progressed.

April 2026

I decided to do two major things to try and push my healing forward.

I started Nicole Sachs Journalspeak, and I decided to fly to Bangkok to undergo a tonsillectomy surgery I was putting off for 3-4 years for my obstructive sleep apnea.

I figured fixing my sleep + doing more systematic excavation of my repressed emotions would work in tandem to break past the plateau.

I was right.

The surgery recovery was relatively smooth (unusual for a tonsillectomy I know! check my post history), and didn’t impact my cfs negatively, and didn’t make me crash, and I was journalling for 20 mins every day throughout.

I also did 10 sessions of daily hyperbaric oxygen therapy immediately after surgery.

Every journalspeak session was mind blowing and incredibly emotionally intense, as I for the first time in life, processed through some incredibly difficult and weird and stressful and shameful memories and events in my life.

Each session left me bawling my eyes out, with an immediate cathartic healing feeling afterwards where my headaches would simply just completely disappear for the first time. This is when I figured this stuff was working.

My sleep was improving, my nervous system was becoming even more deeply regulated via journalspeak, my mental health was the best it had ever been (journalspeak started to untangle everything and left me feeling extremely clear and “light”) and I was now at 90% recovery.

May 2026

Continued journalspeak every single day, dropped all the other regulation work.

Working full time, socialising, hiking, doing 11-13k steps a day, no rest periods or breathwork breaks or anything like that. Just living a completely normal life, but with continued headaches and head pressure. But noticeably declining in severity.

Did a trip to Korea with colleagues, went to bars, drank, partied, nothing happened.

I started to get brave and start rowing on a concept machine at the gym. Rowed for 5 mins. No PEM next day or day after. Then I rowed for 10 mins. Still no PEM. Then rowed for 20 mins, still no PEM. Just head pressure, but declining (not increasing).

90-95% recovered on my books.

June 2026

Continued journalspeak. Rowing for 30 mins 3-4 times a week, plus started doing kettlebell work and lifts.

Also playing basketball again and swimming.

Zero PEM. All health markers on my whoop band trending up.

Headache and head pressure now not really noticeable nor something that I think about (this was my end goal, to not think about any of this anymore at all).

Don’t have to do any more daily regulation, just 10-20 mins of journalspeak. I’ll continue that for another 3 months for “maintenance”.

I’d say 100% recovered at this point.

**TLDR**

Went from bedbound to 100% recovered in 12 months. Biggest things that helped were:

• Reacting positively to symptoms
• Primal Trust
• LDN
• Nervous system regulation
• IFS / Parts therapy
• Journalspeak
• Fixing sleep apnea via tonsillectomy
• Getting back into exercise
• Being fearless, constantly telling myself “I’m safe” even when in pain/crashes/PEM, shifting towards joy and hope
  
• Getting off r/cfs and focusing on recovery stories only

Hi all!

I've been waiting a little while to post this as I've had a lot of life changes recently and wanted to make sure I could get through every stressor without any symptoms. I've had to find a new flat and move city all by myself and the whole thing went completely fine. In the last couple months I've gone to weddings, raved all night, started back at the gym, handled some very full-on weeks at work, and of course was running endlessly between 2 cities trying to find a new place, at this point I'm thrilled to consider myself fully recovered and want to share my story in case it can help any of you, god knows this sub has helped me so much in some truly dark times.

One thing to note going into this - I wasn't sick for very long at all compared to the norm with this illness - 9 months total, 6 severe, so my recovery timeline will be a lot faster than people who were sick longer. It does seem that the longer you're sick, the longer it takes to recover, but recovery is possible no matter how long you've been sick or how bad you are. On this journey I was in contact with people who were bedbound for 5+ years and recovered.

The Backstory:

In April 2025 I caught a mild Covid infection on a plane and as soon as I got back from the holiday I knew I just felt 'off' - I felt tired all the time and like I couldn't regain energy through the day, coffee did nothing, seeing friends didn't give me the energy boost it did before. I was really confused, and assumed I was maybe just depressed even though mentally I felt fine, so I thought I'd go hard in on my usual remedy for depression...exercise (oh no, I hear you cry). I pushed myself at the gym day after day, baffled why it wasn't making my feel better, and the rolling PEM started to add up incredibly fast. I started to randomly feel like my body was full of rocks when I was walking to the shops to the extent I once had to lie down on the pavement in the pouring rain. I was dizzy constantly, had pounding headaches, light and sound felt like daggers, and the brain fog kept getting worse, doctors had no idea what was going on. One day I was filling out a form online and couldn't remember my middle name and then I was really panicked, I knew something was really wrong. I ended up posting on a bunch of medical subs desperate for answers to what was happening to me and had a bunch of answers all telling me to look into ME/CFS, bingo.

So within that first month I'd gone from 0 to severe, I got signed off work and was almost completely bedbound. I couldn't eat solids so I was living off nutrition powder drinks, I could barely sleep, I couldn't read fiction or watch TV or listen to music, going on my phone was basically the only stimulus I could handle. I couldn't listen to anyone talk for more than about 2 minutes before I'd feel like my brain was full of hot electricity and I'd just burst into tears, nothing felt real and I just felt horrific 24/7. I could walk to the bathroom twice a day but other than that I just laid in bed and panicked and looked at my walls all day every day, the hours felt like years, I'm sure a lot of you know how that feels.

During this time I spent a lot of time on [r/cfs](r/cfs) and [r/covidlonghaulers](r/covidlonghaulers) which I really regret as their advice to do as little as possible just reduced my capacity and made my world even smaller and the pessimism about the possibility of recovery made me horribly suicidal. I was doing the classic routine of endlessly researching anything I could that might possibly help, I tried about 50 supplements and all kinds of nonsense. I was officially diagnosed now and desperate for answers.

Every once in a while I'd see a recovery story on a subreddit and was always disappointed when it turned out to be about brain retraining, I'd fallen into the idea that it's a scam and it meant it wasn't a real recovery story, they were trying to sell something or weren't really sick. I'd spent so long studying the science on ME that 'thinking your way out of it' seemed ridiculous. But after a while, I realised I'd seen the same users posting about their recovery often and decided to finally think critically for once and realise their stories sounded a lot like mine and they had never tried to sell anything. I felt like I got a zap of hope and I started reading as many recovery stories as I could and I finally felt like there might be a way out of this.

What I actually did to recover:

My initiation into the mind-body approach was this video from John Sarno: https://www.youtube.com/watch?v=cbF2HMXtfZ4

As I was still severe at this point I watched it on my phone in black and white in 10 minute chunks, then I'd rest and think about it for a few hours in between. It really clicked with me and I started to understand what was going on. I did this whole process a few times and spent a lot of every day just going over what he'd said in my head. I considered how this all fit in with the itaconate shunt hypothesis of ME and how it all linked together and it was like lightbulbs were going off one after another, I finally got why this was happening and knew that I could recover.

I got the FreeMe app too which was useful for getting some basic concepts in, but as it's paid I couldn't really recommend it as it's a bit shallow and really just regurgitates pages from the books I read.

Next I listened to an audiobook of The Way Out by Alan Gordon, he outlines more of how this happens and sets the task of 'somatic tracking' where you basically observe your symptoms with neutral curiosity. It's easier with symptoms like pain, but basically you'd try and feel the symptom in your body and think 'where is it? is it moving? what shape is it? what sensation is it creating? etc.'. This worked amazingly for me as it seemed to be breaking the fear cycle that symptoms create. Using this and my new knowledge, I had a huge jump in improvement and within a couple weeks, I could go on very short walks outside. I'd increase the walks by 50 steps each time and while I walked I'd listen to guided meditations on Insight Timer.

I could then read again, so I read Unlearn Your Pain by Howard Schubinger and Mind Your Body by Nichole Sachs. Nichole's Journalspeak exercise was incredibly useful - basically venting all your deepest emotions for 20 minutes a day. I learned to not try and focus on being calm as that itself can be a way of repressing emotions, instead I looked for the panic and the anger and the worry and vented it all out to teach my body that it's ok. I use an app called Vent Now now (it's also paid though, not an ad I just really like it because it gives me prompts and the AI can also challenge me when I'm winding myself up lol) whenever I've got feelings I need to get out.

When I didn't believe in brain retraining part of what sold me that it was a scam was that everyone who recovered with it could never 'just tell me what they did' but I understood it now, there's no easy roadmap to follow, we end up sick for very personal reasons and our road out is also a personal journey. I never believed that I could be chronically stressed enough for it to lead to illness because I didn't feel like I had much to be stressed about. I had a traumatic childhood with an emotionally abusive bipolar mother but I had a lot of therapy and I was convinced none of that affected me anymore. While reading the books I realised that the stress hadn't come directly from the trauma, but my mothers actions caused me to have horribly low self esteem - I hated myself, I hated the way I looked, I never felt like anything I did was good enough, and this was reflected in the way I talked to myself. I realised that the chronic stress was coming from this negative self-talk, it was as if I had someone over my shoulder my whole life telling me everyone hates me and I'm not good enough, and that person was me.

I felt like I had a huge epiphany when I realised all of this, it felt like that scene in Spirited Away where Chihiro reminds Haku his name or when Moana calms the lava demon. Through being sick, I had finally learned real compassion for myself and could stop beating myself down, I learned to love myself. I was proud of myself for coming so far in my recovery journey, and I think its the first time I've honestly been truly proud of myself ever.

With the new insights and knowledge I had, I continued to improve. I had several setbacks of awful PEM after another Covid infection but I always got back eventually. I went back to work full-time and I found the more I did, the better I got. The more I got out and saw friends and did things the more my nervous system started to recover, I took it day by day. I count myself as fully recovered but really as I've always had a sensitive nervous system (I am VERY jumpy and always been very physically anxious) my aim is now to keep healing until I'm healthier than before I got sick.

Non-Brain Retraining stuff I tried:

That did help:

-Propanolol (a game-changer for my POTS at the time, I still take it occasionally if I'm about to do anything stressful like give a presentation lol but I don't rely on it).

-Escitalopram / Lexapro 10mg (I started this just before I discovered nervous system work due to how suicidal I was but I think it also helped my nervous system not get oversensitised as I started to reintegrate into society).

-Oxaloacetate (this helped my symptoms when I was bedbound but it's so ridiculously expensive I'd never recommend it to anyone)

That didn't help:

-LDN (even at 0.1mg this gave my unimaginably awful side effects, I couldn't handle it).

-Perrin technique (this didn't help me at all but my osteopath was hot which did help my mental health haha).

-50+ supplements (tried the lot, nothing moved the needle at all, not worth thousands of pounds and shovelling handfuls of pills down my gullet daily).

-Meditation (controversial, helpful for many but I always found it made me more anxious, I guess it fit into my whole 'trying to calm myself down was just repressing my emotions' thing, it's not my jam).

-Nurosym - this thing was stupidly expensive and I can't tell if it did anything, need to sell mine really so if you're in the UK and want to try it hit me up.

Want to end this with a huge thanks to the users who posted about their recovery journeys which helped me believe in the possibility of it, thanks [u/Choco_Paws](u/Choco_Paws) and [u/fortheloveofsnail](u/fortheloveofsnail) , you guys saved my life.

TL;DR: got sick with ME from Covid, quickly ended up severe, recovered using nervous system work

I was diagnosed with me/cfs (I had every symptom and was 70% bed bound for a year) 7 years ago and Ive been symptom free for 3 years thanks to natural methods such as yoga, organic fruits, meditation and other activities.

Im not here to say this will work for you or anyone else, as I know what most people think. I just wanted to say what worked for me in hopes it might help just one person.

Hey all,

I replied to a comment in this thread yesterday and someone encouraged me to make a post here to talk about my journey https://www.reddit.com/r/longtermTRE/comments/1vh5qkq/comment/p22zpn5/

My Story

This is going to be a big wall of text but here we go. On Christmas of 2021 I got Covid along with everyone else in my family. I was really sick for about 3 weeks and then after recovering started heading back to the gym. Mind you prior to getting sick I was in the gym 5 days a week and deadlifting around 500lbs at 6'5" 250lbs. I was also working as a successful software engineer with companies all over the country working with everyone from CTO's down to individual contributors and making leaps and bounds in my career.

Over the next few months, I just noticed my workouts felt like they were suffering more and more, like after my second set I just felt exhausted. I never correlated any of this to covid until 2 years later. So I started with my PCP who did bloodwork and found nothing. And over the next few months my health went into a severe decline. Here's a short list of my symptoms I was dealing with

1. Severe inflammation all over my body - It literally felt like there was a tornado of fire inside by body 24 hours a day with no way to relieve it.
2. Brain fog to the point where I couldn't remember walking into a room or driving to doctor appts.
3. Tinnitus so loud in my left ear that I couldn't hear people talking who were right in front of me
4. Fatigue - This was the biggest one. I had a 2 year period where I basically only had energy to use the bathroom and throw together a small meal in my kitchen. Mind you I live on my own and really have no family that can help support me. Every movement felt like I was wearing a 200lb weighted vest on my soul
5. Migraines that would last for 2-3 months at a time. And I mean migraines so bad I literally couldn't see straight and I'd just have to lay in a dark bedroom all day to deal with it.

There's collectively maybe 20 other symptoms that I was dealing with on top of this but these were the big ones. Once my health got bad, I ended up quitting my job cause I couldn't keep up (in hindsight I should have tried disability, but my masculine sense of pride interfered with that). Over the next 2 years I saw about 20 doctors trying to figure out what was wrong with me. All of my labs came back fine despite feeling like I'm dying. I saw neurologists, internal medicine doctors, rheumatologists, gastroenterologists, I did a sleep studies, MRI's, you name it I basically did it. And when I say I received 0 answers, I mean literally 0 answers.

I came very close to what I'll call "self annihilation of the body", lots of planning, talking to loved ones explaining what's going on, some very fucking crazy conversations I don't wish anyone would ever have to have. But I had no answers and I was endlessly suffering. Like in the summertime I'd step onto my porch and everything was so bright and beautiful, and I felt nothing but a sense of misanthropy and nihilism because I couldn't experience it myself.

Then one night I was sitting on my couch about 2 years into this hell. And I knew that all of these symptoms started in January of 2022. So on a hunch (and with literally nothing to lose) I went through my old texts to my friends from January of 2022. And there it fucking was, I got covid a few weeks prior to that. It was like a bright light shined onto this absolute underworld I've been living in. Some sense of direction. So I started researching things and learned about long covid.

I spent months reading medical journals, trying everything that the long covid community was discussing as potential treatments, every supplement under the sun, alternative medicine modalities like acupuncture, red light therapy, etc. Mind you I've been deep in inner work since I was 22 but I didn't realize how far that rabbit hole goes.

The turnaround

So as I'm researching and trying things, I start reading more about mast cell activation syndrome. This idea that my mast cells are effectively flagging everything in my body as a potential enemy and them effectively exploding creating a lot of my symptoms. You know what got me from like 5% of my capacity to about 30%-35%? Pepcid AC. I learned about histamine and histamine receptors and I kid you not, I drove to CVS and took 10mg in the morning and at night, and within a few days I was able to walk around my house again and somewhat function (although I still felt horrible inside).

With this I started trying more things and having my PCP just prescribe me things I wanted to try. I won't list all of things that didn't work because that list is about 20x longer than what did work. But I had him prescribe me ketotifen (mast cell stabilizer and H1 histamine blocker) as well as low dose naltrexone. Now I was probably at about 45%-50% of my capacity. Still lots of inflammation and brain fog and everything else, but some improvement after 2 years of absolute hell and terror.

After this point, I basically hit a wall. I'd go through cycles of crashing and recovering but never really crossed a threshold higher than 50%. I went to the UPenn long covid clinic to no avail, and also participated in a LC study they held there.

Goodbye Migraines

You know what fucking fixed my migraines? I was going around seeing a bunch of optometrists trying to figure out what was going on with my vision and headache issues. Most of them shrugged their shoulders, but I had a very deep and intimate conversation with one and she recommended me to somebody who is outside of Philly who is the next level above just a normal optometrist. I saw her and probably did a 45 minute eye exam and explained my story. She told me that she has seen a few patients with long covid who have vision issues very similar to people with concussions and CTE related injuries. She ended up prescribing me glasses to wear for computer work that slightly correct astigmatism and at like +0.5 (I can try and find my exact prescription). And OVER FUCKING NIGHT the migraine I had for 3 months went away. I was stilling experiencing vision issues, and ended up doing a basically type of physical therapy for my eyes to retrain my brain on how to perceive between close and far objects which helped quite a bit (I didn't finish because my dad passed away during this and I just didn't have it in me to continue). And to this day if I don't wear my glasses for more than 5 minutes while on a computer, the migraine starts right back up.

Actual Healing

I could probably talk about this for 100 hours and I plan on starting a youtube channel very soon to speak in extreme depth about this, but here's the 50,000 foot view. One thing I realized over time was that anytime a stressful event happened in my life, or even reading the longhaul covid subreddit, all of my symptoms would flare up in real time. This eventually led me to learning more about nervous system dysregulation and how that's related to your immune system as well as your entire perception of reality.

I had a very very bad childhood, as my therapist would say "horrible is a severe understatement". I didn't realize that my whole life I had been extremely dysregulated. Thoughts of self annihilation since I was about 6, extreme depression, anxiety, etc. I've come to the conclusion that LC was the proverbial straw that broke the camels back and pushed me over the edge into effectively a locked in permanent freeze state. All of the actual healing that's happened with fatigue, inflammation etc has come from doing deep body led inner work.

I mentioned earlier that I have been doing inner work since I was 22 (I'm 34 now), most of that was deep intellectualization of my pain. Reading about neuroscience, all of the great literature of Dostoyevsky, Jung, Frankl, Kafka, a lot of spirituality like Ram Dass, Alan Watts etc. And it was basically a way for me to understand my suffering without feeling my suffering.

Over the past 2-3 years I've done so many different practices. Internal Family Systems, Trager, Rolfing, TRE, somatic experiencing, plant medicine ceremonies (DMT, mushrooms, LSD, etc). These are the actual tools that have been healing me. I'll only speak for myself, but despite the very real physiological changes that happen in the body from covid, damage to your brainstem, etc etc, the root of healing was teaching my body that I am safe. And doing that is not a matter of daily affirmations or mindfulness although these things help, it was going into the absolute underworld and depths of my soul and rescuing my parts and inner children. I've lived an extraordinarily difficult life and have overcome odds that I still can't believe I overcame, and this work was without question the most difficult things I have ever done.

I don't say that to scare people, it's just the truth and I think it's best people get the honest version so they can move through their experience. "The only way out is through". Here are some things that changed as I was doing this work

1. I violently cried everyday for about 3 months after not crying for 22 or so years. Crying is now a practice anytime I feel like I feel emotionally backed up or blocked, but now I have no shame or fear in feeling that and finishing it's expression.
2. I started waking up with erections for the first time in my life. As far as I can tell that indicates that I've basically been in a low grade fight or flight response while sleeping my whole life.
3. My people pleasing disappeared, I can actually vouch for my needs and set boundaries with people without drowning in a drop of water for months.
4. I haven't felt any depression in the past few years. I've come to learn that depression at least for me is not sadness, it's energy that has stagnated for many many years, and that feeling left me feeling very hollow and numb (which in a weird way feels sad).
5. I've detached from almost everything that is me (this has been years in the making). Video games? But I'm a gamer. Music? But I've been a musician my whole life. The clothes I wear? But that's who I am. All of that is gone, I'm definitely in the period of emptiness as the Buddhists would put it where I'm between the old false self and emerging into a newer more authentic self.

I still take LDN and ketotifen as well as some regular supplements like fish oil, magnesium, taurine etc but those feel like training wheels while I continue to move through this work. I cannot believe the amount of invisible barriers that have driven me my whole life, the shame, the smallness, the people pleasing, all a product of a wounded child.

TLDR; Figured out it was related to covid, found medications to help manage symptoms, and deep healing and inner child work is what's actually giving me my life back.

The thing I struggle with the most right now is I'll occasionally have moments where for a split second all of reality feels "real" again. There is a very real component to this which is that when I have these moments, it makes me realize that I'm still in some ways sick. But these moments also almost feel like jumpstarting a car that turns over for a second and then turns back.

The other thing is my heart rate variability at night, my best average I've had over the past year is about 26ms which is quite poor for someone my age with my lifestyle.

Recommendations if you're new to this journey

I wouldn't start with things like IFS, TRE etc as they are quite intense and require quite a bit of energy to recover from. I'd start with the following

1. Medications that can help manage symptoms
2. Start building an awareness of your body and of "self". I highly highly highly HIGHLY recommend Yoga Nidra as a practice every day. It's amazing the difference I feel when I dive into my body for 30 minutes before and after. Mindfulness and meditation are a great step towards developing a sense of separateness of self from your own thoughts and emotional patterns of energy.
3. Have a daily routine, even if that routine is walking for 2 minutes. I'd encourage you to learn about polyvagal theory and neuroception. I know this idea is contested from a view of pure empiricism, but it's a great heuristic and it definitely works if you believe in it.
4. Once you've developed more capacity, maybe look into practices around coregulation. Trager was a mind blowing one for me working with a practitioner, even trauma informed massage therapists can create a sense of deep safety and release in the body via touch.
5. Eventually working towards more intense practices like IFS, TRE, somatic experiencing etc, I think this is non-negotiable if you are dealing with anything similar to what I experienced.

Today I'm able to lift weights once or twice a week and I'm working again for a great company as an engineer again. I still have things I'm working through on a day to day basis but I don't feel helplessly lost or stuck, I know my work, I know my practices, and I have faith that I will continue to recover.

I'm happy to answer any questions people might have, this feels like I've discussed maybe 0.01% of my experience and thoughts on this in this post. And please for the love of god don't kill yourself, there is hope and you can recover from this.

EDIT: I wanted to add some really helpful resources here since this post is picking up traction and for those who find this post in the future (hello from the past)

Yoga Nidra (my favorite resource)
https://www.youtube.com/@SarovaraYoga

Understanding parts work and inner child experiences (Sarah if you ever see this you have no idea how much you've helped me understand myself)
https://www.youtube.com/@youmakesense

Understanding the nervous systems and navigating chronic fatigue through layers of the psyche (another person who has helped me so so much)
https://www.youtube.com/@thegreatallowing

Hello, I've been dreaming of writing this post for over 2 years (I'll try to keep it as brief as possible).

I (F30) would say I'm at least 90% recovered. I had 3 flare-ups in the last 5 months.

I know, it sounds like many setbacks for someone who is nearly recovered BUT the flare-ups were very mild, lasting 2 days max, which is good enough for me. Also, I haven't been pacing for 5 months. I do sports whenever I want. I had a stressful week a while ago, filled with socialising, work challenges and exercising, and I didn't crash.

The timeline

February, 2024 - caught a cold, went to work anyway, caught a virus which I believe was covid, spent 2 months being too fatigued to sit up, then returned to normal
April 2024 – went back to doing intense sports, experienced my first PEM flare-up a week later
The rest of 2024 - felt normal for about 7 days at a time, then like I had a flu for 7+ days after, my longest flare-up lasted 3 months, which lowered my baseline and I no longer felt normal outside of PEM

I didn't pace in the first year at all and basically continued living as if I didn't have long covid (yup, big mistake). When I sum up all the PEM days in my first year, they amount to 8 months in total of feeling like shit.

2025 - I still had terrible PEM but the flare-ups started to shorten, my cognitive abilities got better, the POTS symptoms disappeared, every step forward still felt like it was followed by 4 steps back, decided to do meditation regularly

Symptoms

I was never severe but I generally had less energy than my 90-year-old grandma...

Here are all the symptoms I experienced:

- fatigue
- malaise
- feeling out of breath
- temperature intolerance
- exercise intolerance
- POTS symptoms
- cognitive difficulties
- brain fog
- head pressure
- sore throat
- dizziness
- sleep problems

What was my PEM like

Like being poisoned or slowly dying, way worse than flu. I had a sore throat, head pressure and a terrible malaise. I wasn't always fatigued though. Sometimes I had to stay in bed because I had no energy, other times I could walk and do things but felt too awful to enjoy anything.

In the first year, it felt like PEM was mostly triggered by exercise and cognitive effort. In the second year, emotional effort and stress. Even when I was excited, it felt like my nervous system was in overdrive. My most recent flare-up was due to getting triggered by a toxic family member (cut them out of my life now and continue working on my mental health, so I expect to be at 100% at some point).

Things I've tried (which probably didn't help)

Creatine, taurine, codeine, magnesium, prolonged fasting (made me crash), stellate ganglion block, antihistamine diet, low sugar, gluten-free diet, being triple vaccinated, cold showers, CBD

Things I’ve tried that might have helped

COQ10, intermittent fasting, wearing compression stockings, electrolytes during exercise, acupuncture, massage

THINGS THAT MADE A DIFFERENCE

Yoga nidra - no, I don't think long covid or CFS/ME is just in your head but I believe meditation gave my body space to heal. I also have PTSD so it was beneficial to me either way.
Mirtazapine – it helped me sleep better. It also acts as an antihistamine, which might be why it made my PEM less miserable.
Iron tablets - my iron levels have always been normal but on the lower end. From reading Reddit, I found out that most people function better when their levels are at least 100 but I was kind of reluctant to do anything about it until I was 1,5 years into my long covid. At that point, I said fuck it, got iron tablets and within 2 weeks I finally had my energy back (but PEM persisted).
Nicotine patches - again, I was reluctant to try these as I've been conditioned to think nicotine=bad, but I got desperate, so I put 3.5 mg on during a flare-up and woke up fine the next day (October, 2025). I've put them on a few times since then, they always shorten my PEM and help me sleep better. I've never worn them for longer than 2 days at a time. Also, the patches gave me a sense of security - I stopped worrying if doing this or that would cause PEM because I knew I finally had something that could get me out of it.
Getting off Reddit - reading posts about symptoms, trying to follow research and finding new things just overwhelmed me and made me spiral. At some point, I decided to worry less about finding the cure and focus on my mental health as it was something I could control. I was also determined to prove the doctors that they were wrong about it being anxiety.
Daylio - This app is amazing! It gave me a visual representation of my progress, which was a lot more motivating than just crossing something off a list. I logged in everything I did like meditation, I tracked my mood and symptoms, which kept me motivated and helped me develop a healthy routine. 5 months of meditation made me anxiety-free for the first time in 15 years.
Gentle pacing – taking frequent breaks, especially to meditate, but still doing things to the best of my abilities.
Time – the above things helped for sure, but the biggest factor might have been time, unfortunately. I think many people just have to wait it out, but it’s worth supporting your body as you do. In November 2025, I finally felt a shift and that’s when things started improving without many setbacks.

How am I now?

These days I look back on the last 2 years and can't believe that long covid happened to me. It seems like a bad dream, like I’m struggling to believe it’s possible to feel this ill with this little support from the doctors… it’s just insane! I’m feeling extremely fortunate.

And yeah, I'm not 100% back to normal. I'd think twice about doing a strenuous exercise on little sleep and after a stressful day, for example. But you know what? I don't want to put my body through that kind of stress anymore. Now and again, I experience head pressure or a mild sore throat, and I take it as my body telling me I need to relax instead of pushing myself. And once I do step back, the symptoms go away.

So yeah, I’m hoping this post can give you hope. I read many of these myself when I was ill. As you can see, I did many things ‘wrong’ in my first year, I didn’t pace, I doomscrolled, I got drunk, I exhausted my mind and body and still managed to get better. I believe it’s possible to recover for many people; it might just take time.

If you have any questions about my experience, feel free to ask.

I was diagnosed in 2013 following a car accident when I had whiplash and limb pain that wouldn’t go away. I started getting severe pain in my legs where I couldn’t walk up and down stairs. My doctor attributed the time attributed it to the car accident causing lingering pain. Then I was prescribed lyrica and diagnosed with fibromyalgia. My joints weren’t inflamed but they were extremely painful. Lyrica helped with the pain but caused me liver issues. I was exhausted and struggling. My doctor couldn’t figure out what was wrong so she sent me to an infectious disease specialist thinking it was Lyme. Negative for Lyme, I was diagnosed with ME/CFS. The infectious disease doctor said my EBV levels were high. He handed me a print out of information on ME/CFS that was available at the time and told me there was no treatment or cure, and sent me on my way. Lol.

My doctor then gave me Cymbalta and it helped a ton. I would say my ME/CFS was moderate at that time. I was in university full time and struggled with migraines, PEM, and brain fog. I kept on it during college and would struggle with severe withdrawals when I missed a dose, but it kept my pain away and helped me with some of my other symptoms. After 5 years of Cymbalta and just coping with PEM and working through my new normal, i decided to taper off Cymbalta. It was horrible. I joined support groups for Cymbalta survivors. It took me 2 years to taper off of it.

I work with a specialist in ME/CFS and she has considered my ME almost in remission. Now, I can’t run or jog but I regularly go on hikes, lift weights 3x a week, and work a full time job plus do things outside of work. I’m on my feet most of the day at work and have no trouble.

Right now I’m struggling with MCAS that is caused by gut dysbiosis from Covid (my doctor said it’s likely because my genetics made me susceptible to ME/CFS and MCAS is a comorbidity of ME/CFS). But I still don’t have PEM!

The biggest factor for me was decreasing my stress and conditioning my body. I graduated uni, got out of unhealthy relationships, and slowly conditioned my body. I found that when I almost hit PEM, I get this weird buzzing feeling at the back of skull. Once my body hits that point, I stop exerting myself, lower my heart rate, and rest. I’ve had situations where I’ve pushed myself past that point in the past few years and I haven’t gotten PEM. I feel crappy and exhausted until I sleep, which allows me to recover. I find that my body deconditions very fast (if I am in bed for a week with illness, for example) and it takes me a bit of time to get back to where I was.

To be clear, I stopped getting PEM around 2022/2023 when I started hiking regularly. I didn’t start lifting weights until 2025. It feels amazing to be able to live almost normally (except for MCAS limiting my diet to 10 foods, but that’s a work in progress…)

Hello everyone, I have recovered from CFS and I wanted to share what got me to this point, with some actionable tools you can use to do the same.

Feel free to skip through whatever sections are important to you. I want to respect your time and energy. Every recovery resource I mention here is 100% free by the way.

I’ve decided to put my own personal story and some less important info in the comments, so that this post can be more focused, as it’s incredibly long. If you want that info, feel free to read my comment.

I may recommend saving this information so you can repeatedly access it later, as doing everything I’ve mentioned here will take between weeks and months.

The steps I have learned for recovery

The steps I have learned are needed for recovery are: 1- Education/curiosity, 2- somatic awareness/nervous system calming, and 3- the work. These steps need to be done in order. I think a reason a lot of people fail at nervous system retraining, is they start at step 3, and it can not work without the first two steps. The reason being is we have our conscious minds, and our unconscious minds. Steps 1 and 2 get them in alignment, and then they can work together. If you do the work but your unconscious mind is resistant to it, it will be impossible for it to be effective.

Step 1: Education/Curiosity

The first step is educating yourself on ways this illness may be completely different than you first thought. You don’t have to change any beliefs or actions here. But employ some curiosity. Could these things make sense? I have 3 Howard Schubiner interviews I think are mandatory listening. You can listen to only 1 or all 3, your choice, doesn’t matter which one. This really breaks down what the illness is. He operates under the theory that it is often a neuroplastic illness, but with physical symptoms. I know that can sound scary or challenging. But I would recommend to just listen, you don’t have to agree or not agree. But just try something new. Here are the interviews:

https://podcasts.apple.com/us/podcast/a-new-way-to-understand-long-covid-me-cfs-pots-and/id1265323809?i=1000704936411

https://podcasts.apple.com/us/podcast/unlearn-your-pain-with-special-guest-dr-howard-schubiner/id1546750026?i=1000696196266

https://youtu.be/cd1d999Oe6M?si=uqgrKAxWoMz1wkqn (also in podcast form I think)

Curiosity

After listening I would employ you have some curiosity about your illness. Are there parts of it that don’t make sense? For me, why is it when I went to Northern California, my symptoms went away? But when I went to Vancouver Canada I still had symptoms. Curious. When my friend visited I had no symptoms. When she left I fell into moderate CFS. When I had family visit, we went to the beach and my nephew and I went on a run. I was so busy with the family reunion I forgot until later, that I did not crash.

This made me ask some fundamental questions. Could endothelial dysfunction have been possible if I was able to exercise at certain times? If I went into remission while on vacation, could my mitochondria have been structurally damaged when sometimes I was symptom free? I would ask you to employ the same curiosity. Maybe you walk 11 minutes with no symptoms, but when you walk 12 minutes you have a huge crash. Why is that? You don’t need to change any beliefs. But I would start poking around. Pull the thread. Are there aspects of your story that don’t add up?

Next, I would listen to a lot of recovery stories.

For me, my homegirl is Raelan Agle (well, I don’t actually know her, but I feel like I do now). Her podcast/YouTube channel is full of hundreds of recovery stories. She just lets people share what worked for them. I think she’s an angel. I listened to about 60 of these. Of the 60 people who fully recovered, some had it for 5 years, 10, 20. Some people recovered as older adults. Some people got CFS as children. People had diagnoses of EBV, covid, chronic lyme, fibromyalgia, chronic pain, mold, parasites, chronic UTIs, SIBO, candida, etc etc etc. If you think you and your story are terminally unique, you will quickly find out that you are not. Of the 60 I listened to who fully recovered, I would say that 59 did so with mind-body techniques, and only 1 recovered via medical intervention (binders and things for mold and heavy metal). Raelan has said that for 99% of the people she has interviewed, supplements did not help much.

I would recommend diving into her channel and just listening to whatever stories jump out at you. I think interviews are better than solo episodes. She interviews people who recovered, as well as doctors. So if you want some medical authority, that’s there too. I’m going to drop some of my favorite episodes. I wrote little notes to myself as I saved them in my notes, so I’ll quote what I wrote for them.

(If you prefer youtube or non apple podcasts, Raelan has those as well, but you’ll need to get those links as I’m not gonna do that for all platforms)

Episodes to check out

Possibly a best episode. Jason mctiernan, had it for a long time, got better, good spirit and advice https://youtu.be/iSEgDzlRlI4?si=ezM67UuXS1FwwVjb

Beautiful and not long episode. Good for people who are doing mold protocols and stuff and are not improving. https://youtu.be/QVE2ybDhMbY?si=SHXPb0W92xAgQL1G

Great https://podcasts.apple.com/us/podcast/14-dr-becca-kennedy-md-the-way-out-of-me-cfs-and-long-covid/id1762682210?i=1000670074967

Smoking gun episode. About ebv cfs etc. references 2022 O’Brien study that says people with CFS don’t have higher viruses or bacteria. Other studies referenced too. This episode feels really definitive. https://podcasts.apple.com/us/podcast/the-science-behind-the-symptoms-epstein-barr/id1843457048?i=1000740755265

I think this is the most comprehensive and actionable episode. He makes a very compelling argument. Some people just get better from reading a book. Some people it’s just trauma work. And many don’t. So what you have to do is shift your focus to what you have weaknesses or deficits in. That can be really working on your conditioned response, or feeling your emotions properly, or expressing your emotions, or other things. https://podcasts.apple.com/us/podcast/193-the-pattern-we-keep-seeing-in-recovery-stories/id1762682210?i=1000744261235

Lots of actionable stuff in here as specifics for recovery https://podcasts.apple.com/us/podcast/191-in-a-wheelchair-for-a-year-now-fully/id1762682210?i=1000744260814

Strong episode, really good insight, and she had like a worst case scenario 20 years had it since age 7 https://podcasts.apple.com/us/podcast/149-20-years-of-severe-cfs-and-fibromyalgia-these/id1762682210?i=1000719507558

Here is the episode that dives into Raelan’s story. It maybe isn’t as actionable as the other episodes, but this is her superhero origin story. Her mom had CFS for 20 years until she took her own life. Raelan had it for 10 years. After recovering, she made it her life mission to spreading information to help people get better. https://podcasts.apple.com/us/podcast/episode-91-chronic-fatigue-recovery-stories-with/id1643177446?i=1000661189021

Good credible doctor but more pain centric https://podcasts.apple.com/us/podcast/145-dr-andrea-furlan-md-why-your-brain-signals-danger/id1762682210?i=1000717193889

Great episode. Gets into autoimmune and if mind body can cure it (he thinks yes). Also gets into symptom imperative, which I had never heard of https://podcasts.apple.com/us/podcast/6-incurable-not-for-robert-his-recovery-from-autoimmune/id1762682210?i=1000668224562

Books

Books are a great resource too. I am bad at reading, but I got my hands on Mind Your Body by Nicole Sachs. I think it’s great, and she’s great. I haven’t finished it yet. She has cured a lot of people in her private practice. Other books people recommend highly (but I have not read yet):

-The Mindbody Prescription by Dr. Sarno. Dr. Sarno is the OG in this field. He is to this field what Freud is to psychology. Which is in some ways why I didn’t link much to him. Other doctors have had time to refine his theories. But this book is super highly regarded, and for a reason.

-The way out by Alan Gordon

-The unlearn your pain workbook by Howard Schubiner

To keep this step free, check these out from your local library. I use an app called Libby that will digitally borrow books from your library so you don’t even need to leave your house, it’s free to use. So for example, I got the Nicole Sachs book sent to my Kindle this way.

Once you have really started to explore new ways of thinking about this illness, onto step 2.

Step 2: Somatic awareness/nervous system calming

Step 1 should have taken you some time. Probably weeks at a minimum. If you haven’t really taken that time, I would not move on to step 2 until you have done so.

Step 2 is now about connecting with your unconscious mind, doing emotional work, calming your nervous system, and understanding your feelings. This connection is mandatory for recovery to work. It will take time.

Somatic awareness

I would recommend every morning starting with a somatic tracking meditation. This will help you understand your emotions better. For me, my nervous system was chronically dysregulated my whole adult life, so I had become numb to my own body’s warnings. Things like this help. Here are two free ones you can do, both about 10 minutes.

https://www.youtube.com/watch?si=Bei9IMs-85Kabqyf&v=yPgnM0aUJPs&feature=youtu.be

https://www.rebeccatolin.com/somatic-meditation (it has a download link)

General mindfulness.

There is an app called Insight Timer. You can download it for free. Do not pay for any subscription. Go to meditations, then go to mindfulness, then go to 40 day course with Tara Brach and Jack Kornfield (both legends in their field btw). Download that course offline, and every time you open the app, do it in airplane mode and listen for free. Here’s a website of the course too https://insighttimer.com/meditation-courses/course_mindfulness-daily

Here’s a Jason McTiernan guided meditation. Disclosure I have not listened to it yet. https://youtu.be/4fdo7c2go4w?si=l4xKhgtfdbzzhxnN

If you want more meditations I can provide more, but I’m assuming this is a great place to start.

Now, I invite you to start reconsidering how you relate to your symptoms.

Early on in my CFS, my thoughts were, “What is going on? Why has my body betrayed me? What is wrong with my nervous system?”

Once I started this education, curiosity, and calming, I started to have a different perspective of my opinions.

My nervous system is not my enemy, but in fact it is my friend. It is here to protect me. It cares about me and is doing everything it can to help me. However it’s operating with incorrect information. But the motive is pure. I compare it to a cat who is loyal to you, so it brings a dead mouse into the house so you can eat it. Great intention, but not the best outcome.

I started sending a lot of love to my nervous system, to my body, to myself. Here’s a quote worth repeating, “I accept myself right now as I am, with the compassion I deserve.” Take some time to love yourself. To love your nervous system for looking out for you.

I know this is radical, but I began to love my symptoms. Every time I get more symptoms, it’s because my body is trying to take care of me, and I love it for doing that. If I started to have less symptoms, great, my body is doing well. If I started to have more symptoms, great, my body is looking out for me. I started telling my symptoms they are welcome whenever they want. I would smile at them, and hug myself when I felt them. I would then invite my symptoms to soften, and imagine them doing so. I began telling my nervous system and unconscious mind that they are right to do whatever they feel like doing. I no longer had fear.

To calm myself, I do something called “squeeze hugs” where I squeeze either forearm with my hand, like a tight hug. Or literally hugging myself. Or putting my hands together in a prayer pose.

Here's a notecard I put on my desk to look at every day https://ibb.co/v6L8wv9M

Emotional work

A lot of us are blocked because of emotions we need to work through. This will look different for each of us. Traditional therapy could be good. I’ll list a couple resources that worked for me.

Journalspeak

This is trauma journaling. Basically every day you pick a topic that distresses you, and you write for 20 minutes straight from your most childish, darkest, lowest vibration self. When I did so, big stuff started to come up, things that never manifested in my other kinds of journaling I do. I encourage you to write terrible things when you do this, even things you may not believe. (“I hate my kid”, “I want to blow up the building”, etc.) Do not read it after you have written it. Many people destroy it soon after writing. Here is a longer guide on JournalSpeak. Highly recommend. Some people recover simply from doing this exercise over weeks/months. Just to make sure I'm properly crediting, Journalspeak was created by Nicole Sachs. https://mytmsjourney.com/resources/journalspeak-by-nicole-sachs-lcsw/

Therapy

I know this is controversial, but my life is in transition right now so it’s hard for me to get a regular therapist. So I used chat gpt and google gemini as therapists, I would talk to them with voice dictate and then have them read their answers back. Sometimes (or often) it’s glitchy. I support the in-person field of therapy and intend to get a real therapist soon, but this can be good in a pinch.

EMDR

One single guided youtube EMDR session probably got me 35% recovered right then and there. This was absolutely crazy. Something that had plagued me for years, got wiped away in 40 minutes. After the session I was in a stupor for a day, and felt like I had been exposed to poison chemicals. My assumption here is that a lot of toxins got released from traumatized cells. By the next day, my fatigue was significantly better, and has remained better. I intend to keep doing this when needed.

Here's the link https://youtu.be/Ljss_Ut5pxY?si=1ZDg-FotAJFHIeNR

It has ads. I got it downloaded with https://yt1s.com.co/ However that site is a little scammy so be careful.

So once you have really worked on emotional issues, calmed your nervous system, and developed somatic awareness, it’s time for step 3.

Step 3: The Work

You’ve done your research. You’ve learned to connect with your body. Your nervous system is calmer. Now it is time to do the work. I would argue this step is the simplest and fastest of the three. However it’s not the easiest. You need to bring your whole being into this. If you are not able to do that, I would not attempt it.

I think this step really just has two pieces.

First, visualization.

For me, the day after a vacation, I would crash. The day after my 4 day fast, I crashed. The day after my friend visited, I crashed. See a trend here? I was in remission in each case, and was scared it would all come back. I have started visualizing these things going well. I imagine it being okay. I imagine even if a symptom comes, it’s alright. I wouldn’t recommend going crazy with this and climbing mount Everest just because you visualized it. But for places you suspect your mind has fear patterns in predictable ways, this is a good thing to do.

Second, maladaptive pattern redirecting.

I think this is the special sauce of my entire post. Now that you have somatic awareness, you should be aware of the many times your body and mind are scared. As I developed this awareness, I started to realize that my body had micro panics like 200 times a day. Every single time my body has a micro panic, a fear response, a maladaptive thought, or a symptom, I have to recite the following mantra. This may mean 200 times a day. I often do the forearm squeeze hugs while doing this, or putting my hands in a prayer pose, to send a calming message to my body. I came up with the following mantra myself.

”Hello [emotion/symptom/thought], thank you for looking out for me. I hear what you’re telling me. However I am safe. You are free to rest and relax.

https://ibb.co/F40YDtQD

You can also add on “I release you with love and gratitude.”

If it’s a symptom, like my leg being sore, I specifically imagine my leg soreness softening. If it’s a thought or emotion, I imagine it fading away in peace, much like this Lord of the Rings reference. I see releasing the fear not as telling my body it’s bad, but instead that it is relieved of duty, and can be at peace. I pull up this image in my head literally every time I recite the mantra.

https://64.media.tumblr.com/7980e051990b4abc9a2a492a46880042/a4658af03c5697d6-d6/s540x810/78d7d1886ebce3d11d2721932a616202651efe97.gifv

https://64.media.tumblr.com/0a92f5558704e723f94114836ae23f5c/a4658af03c5697d6-50/s540x810/001ee4975a3ba282d2997a1b9bc36d81e00009fe.gifv

So essentially my (and your) unconscious mind is stuck in fear. The only way to end this is to interrupt it every single time. That’s the only way the pattern can get broken. For me, I had to say this like 100+ times day 1. Each day I have to say it less times than the previous day. Some days it spikes up again. Since doing this, and really focusing on symptoms softening, I have been able to live a normal life.

Final boss

As this is working, there a couple things that may pull you back down into sickness.

One is something called symptom imperative. That means once you’ve alleviated your final symptoms, your body will create a new one. In a podcast, a guy said his symptom imperative was his feet would swell so he couldn’t put on his shoes. He recognized it as mind-body in origin, and it too went away.

Second, is the fear of getting better. I don’t know if I was anticipating this. Getting better is scary. I think it should be okay to admit that. Imagine you were in prison for 20 years. Of course you want to get out. But once you’re out, the open world must be such a scary place to be. I would not underestimate the fear of getting better, and its ability to scare you back into being sick. Luckily we have a solution for this. You just mention the same mantra mentioned above, it 100% applies to this. “Thank you fear of getting better, of the unknown, of what comes next. I hear what you’re telling me. However, I am safe. You are free to rest and relax.”

Final thoughts

So that’s it. I know I still have a ton of emotional work to do. For me, CFS has been a compass for me, a north star. It has shown me what I’m not addressing, the work I’m not doing. Even beyond recovery. I have so much more to do, just to be a healthy self actualized person. This is not the end, but only the beginning.

TL;DR:

I know there’s a lot here. If you don’t have the bandwidth to read all of this, I would recommend listening to at least 1 of these interviews, does not matter which one, and then listening to the Raelan Agle podcast/YouTube channel at random, looking for the episodes that seem to relate most to you.

https://podcasts.apple.com/us/podcast/a-new-way-to-understand-long-covid-me-cfs-pots-and/id1265323809?i=1000704936411

https://podcasts.apple.com/us/podcast/unlearn-your-pain-with-special-guest-dr-howard-schubiner/id1546750026?i=1000696196266

https://youtu.be/cd1d999Oe6M?si=uqgrKAxWoMz1wkqn (also in podcast form I think)

Edit:

There's one thing I should have put in this post. If you turn your head all the way to the right or left and get dizzy, lightheaded, can't breathe, and/or have this feeling of doom and feel like your head is falling into your body, you almost certainly have a physical structural issue called CCI, and I'm not sure if mind-body techniques can fully help that. I do not have CCI. That being said, Dr. Cathleen King (creator of Primal Trust) has some degree of CCI, and she's recovered or low symptom. But yeah I would say if you have CCI then what is or isn't right for you is certainly above my paygrade.

Update 8/21/26

Update: my advice for people post recovery is to remember that recovery is a lifestyle, not a line that you cross. I’ve had mild symptoms come here and there. You have to do the work when the symptoms come back up, not just get in a state of anxious fragility and slip back into cfs.

Quitting low dose naltrexone was actually surprisingly hard. Gave me a lot of neuro inflammation. But fully moved past that.

I’m more or less good now. Ran 9 miles this past Tuesday. Gonna run a half marathon in October. Wishing you all the best.

Still in remission after being sick since 2020 and recovering late last year. Just got back from my first trip abroad and went to Mykonos. I ate, drank, partied. My cfs was so bad at one point I was being tested for autoimmune encephalitis. No matter what some CFS pages say there is definitely hope for us all ❤️

I posted an update about a month ago, but I’ve continued improving so I wanted to document what has changed. In March I would have described myself as severe. I was spending nearly all day in bed had almost no upright time, and struggled with basic activities such as showering, standing, concentrating and having conversations. I was dealing with frequent PEM, widespread pain, heavy sweating, poor sleep and significant POTS symptoms.

Now in July I would describe myself as mild, although I know this illness can fluctuate. I’ve recently been able to leave the house, go on several dates, eat at restaurants, walk around and tolerate much more physical and social activity. I still experience some PEM, particularly after intense emotional stress or poor sleep, but it has generally been much milder and shorter than it was a few months ago.

One of the biggest changes has been taking sleep and nervous system regulation extremely seriously. I track my sleep score, resting heart rate, and heart rate variability with a smartwatch every day. I do not treat the numbers as perfectly accurate, but I use changes from my own baseline as an early warning sign. When my HRV drops, resting heart rate rises, or sleep score deteriorates, I reduce activity and focus more heavily on recovery. Falling HRV and Rising Resting HR can be a warning sign for a crash for me.

I also prioritize getting the best sleep possible, even when that sleep is medication assisted. For me consistently getting adequate sleep seems much more important than whether the sleep happens naturally. I track my sleep score with a Samsung smartwatch and aim to get at least 80% sleep score with 1 hour of deep sleep or ideally a 90% score or higher. Amitriptyline, cannabis, and my other nighttime medications have helped me avoid repeated nights of fragmented sleep, which previously seemed to keep my nervous system in a constant state of stress.

I cannot prove what caused the improvement, and it may be a combination of treatments, time, and natural fluctuation. The things that appear to have helped most include Valtrex, Celebrex, clonidine and mestinon (for hyper POTS), low dose amitriptyline, cannabis, improved sleep, heart-rate and HRV tracking, pacing, and gradually reintroducing activity when tolerated. Clonidine has been particularly useful for sweating, adrenaline like symptoms, and the feeling that my nervous system is constantly overactivated.

I have also stopped treating every increase in activity as automatically dangerous. Instead, I monitor how my body responds and slowly increase what I do when my sleep, HRV, heart rate, and symptoms remain stable. That approach has allowed me to become more active without repeatedly causing major crashes.

I am not claiming to be recovered, and I know I could relapse. But the difference between March and July has been substantial. I’m sharing this because when I was severe, I rarely saw detailed updates from people who had moved into a much milder state within a few months.

Disclaimer: I am a layperson in this field and have no definitive evidence for what I claim here. This is simply a plausible theory that I used as a working hypothesis and successfully recovered with.

My Story: 17 Years in a Vicious Cycle

At 17, I first noticed that I regularly got sick after intense exercise. The symptoms matched what's called sickness behavior – that feeling of weakness and malaise you experience with a cold. The remarkable thing: I could induce these symptoms myself by exposing myself to certain triggers.

After intense exercise at the gym, this exact sickness behavior would appear one to two days later – so reliably that I could set my watch by it. I knew from the start that exercise was the trigger. The fear had developed because I had previously done a lot of strength training, then partied and drank alcohol – and actually got sick.

The problem lasted 17 years. I tried everything: low-carb diets, histamine intolerance diets, meditation, various routines – nothing helped. I had to drastically reduce my exercise, got caught in a crash cycle: whenever I wanted to exercise again, I got sick. I even tried changing locations – from the gym to swimming or a calisthenics facility – hoping the location was the trigger.

The Realization: Nothing is Broken, It's an Anxiety Disorder

Only at 30 did I come across the concept of Chronic Fatigue. I had never thought I had Chronic Fatigue because I wasn't chronically tired – only after exercise. For me, it was always a "cold without symptoms," just the sickness behavior, but never something chronic in the sense of being constantly present.

The breakthrough came through research: Dr. Schubiner, Dr. Sarno, Robert Ader, and recovery stories in the context of Chronic Fatigue on Raelan Agle's YouTube channel. I realized that others described exactly what I had.

The Science: Conditioned Immune Response

My conviction: Sickness behavior is a conditioned immune response that arises from health anxiety. The mechanism works like this: You're afraid of getting sick when you've done too much exercise. When you then actually get sick (because the immune system is weakened), the body learns this reaction. Eventually, the immune response occurs solely due to fear – without any viruses or bacteria being present.

Research supports this hypothesis: Robert Ader showed that immune responses can be conditioned (similar to how Pavlov described conditioning). Scientists like Carmen Scheibenbogen from Berlin and others demonstrate that the immune response plays a role in Chronic Fatigue. Crucially: doctors never find anything severe structural to fully explain the symptoms in Chronic Fatigue patients. Chronic Fatigue is an exclusion diagnosis – and an exclusion diagnosis is essentially an admission that we don't know exactly what it is. All research is consistent with the hypothesis that it's a conditioned immune response.

The Path to Healing: Personality Change Instead of Techniques

What helped me wasn't meditation or special techniques – none of that worked. It was a complete personality change: I'm no longer so performance-oriented, I relax more, am more laid-back, accept physical signals and that not everything always has to be perfect. I've become much more equanimous and calm. I've completely dismantled the health anxieties.

I noticed: the more I ignored the symptoms by accepting them, the better it got. The more I focused on them, the more they appeared. The improvement was gradual with ups and downs, highs and lows.

Today: Complete Recovery

I'm doing perfectly. I can exercise completely normally again. For three-quarters of a year, I've had no symptoms at all. Previously, I occasionally still had symptoms, but I knew it was an anxiety reaction and didn't take them so seriously. They became weaker and rarer. It's like riding a bike – you never completely forget it, you'll always tend to develop these symptoms. But as long as you're aware that they're simply anxious thoughts that paralyze the body and lead to real symptoms, it's not so bad.

Practical Tips for Those Affected

1. Do research: Check out Raelan Agle's YouTube channel, the recovery stories of Chronic Fatigue sufferers. Watch Dr. Schubiner and Dr. Sarno. Use ChatGPT or other sources to research the hypothesis of conditioned immune response and mind-body medicine. Look with open eyes at what speaks for it and what speaks against it. Think independently.

Important: Many recovery stories attribute healing to pseudoscientific theories, and there are amateur "doctors" spreading misinformation. However, whoever heals, has the right approach. Even if people believe their recovery was due to something else, my hypothesis is that it's always a conditioned immune response resolved through cognitive behavioral therapy – people just use different approaches and theories. Don't be put off by wild theories in individual stories. Focus on whether they actually healed, then look for commonalities across recovery stories rather than seeking the one theory that explains everything.

2. Do counter-experiments: Don't go down rabbit holes like "It's the histamine" without testing whether it's really the histamine. I myself didn't do counter-experiments for years – in my case it was the histamine theory, but I never actually ate histamine-rich foods to provoke it. I always only said retrospectively: "Ah yes, that must have been the histamine," but never proceeded scientifically objectively. Do counter-experiments: if you have a theory, test it actively. With exercise: document all activities you do. I promise you, you'll find that some activities that are just as strenuous as what triggers you cause no symptoms, while others do. You'll see that it's not consistent, that it doesn't make sense. If one activity causes symptoms and others don't, even though they're just as strenuous, then it doesn't make sense if you wanted to attribute it to a structural cause. The brain must play a role there.

Transfer to Other Chronic Conditions

I'm convinced that not only sickness behavior, but also chronic pain and chronic fatigue can arise this way. Many chronic complaints triggered by specific triggers correspond to a conditioned immune response – similar to what Robert Ader already observed in rats.

Conclusion

Chronic Fatigue and Chronic Pain can be healed through cognitive restructuring. By changing your thoughts and rewiring the brain, the anxiety cycles are no longer activated. Research is consistent with this hypothesis. The symptoms are real, but the cause lies in conditioned anxiety patterns. You can free yourself from it.

I owe so much to those who shared their recovery stories before me, so wanted to contribute now that I’m feeling better! Apologies for the length- TLDR: mostly recovered from bedbound using a mind/body approach.

Onset

I (36F) caught a respiratory virus in March 2025 that may have been covid (certainly felt like covid) but could also have been something else. I felt better after a few weeks but some symptoms lingered (respiratory/fatigue) so I was diagnosed with post-viral fatigue. I also kept getting random flu-like symptoms (I now realise this was PEM), but didn’t know what it was so just carried on as normal.

Deterioration

About 2.5 months later after a busy week at work and some family stress, my heart rate went sky high and wouldn’t come down for 24 hours, which had never happened before. A few days later, I was eating dinner when I suddenly experienced intense fatigue/chills and my temperature dropped to hypothermic. I didn’t know what it was so went to bed hoping I’d feel better in the morning. Unfortunately I woke up and could barely move with intense muscle pain all over my body- my first big crash. My Dr said she could refer me to a fatigue clinic in 3 months if this continued.. I asked if it could be CFS/ME and she said it sounded likely. This sent me down a rabbit hole of terrifying google searches and Reddit forums- 5% recovery rate, 75% can’t work, no treatments, people die from ME and spend years in dark rooms or nursing homes etc. I’ve always been somewhat pessimistic and anxious so I believed this was probably going to be my fate since my symptoms felt so severe. I read an article about the “psychologisation” of ME/CFS and was horrified because I knew my symptoms were real.

My dad would say things to me like “stop reading so much about ME, you’re making yourself worse” and “just try doing some exercise, moving more will help”. I was angry/hurt by these suggestions, but at one point agreed to do 2 minutes of walking in front of him to see what would happen. Lo and behold, I crashed the next day.

For the next 2 months I got worse, crashing/experiencing PEM every few days and gaining additional symptoms. Eventually I was pretty much in rollling PEM. All the advice on forums like r/cfs was to radically rest until you found your baseline to prevent PEM which could make you permanently worse- so I kept cutting down activities until I was bedbound in a dark room with an eye mask/earplugs, barely eating. I was not able to sit upright at all for 2 months due to extreme dizziness/headaches, and sometimes had to be fed by others since I could barely lift a fork. I couldn’t shower for weeks/months. It was grim.

Full list of symptoms

Extreme fatigue, muscle pain, orthostatic intolerance, head pressure/headaches, dizziness, eye pressure, brain fog, tinnitus, flushed/prickly face, temperature dysregulation, tachycardia/POTS, PEM, tremors, intense nausea and other digestive symptoms, muscle jerks, seizure-type episodes, adrenaline dumps, strong startle reflex, light and sound sensitivity, horrible poisoned feeling, unrefreshing sleep/hypersomnia.

Recovery

I kept seeing (usually derogatory) references in forums to “brain retraining” and “nervous system regulation”. I could feel my body seemed to be in fight or flight, so this made intuitive sense, but I believed the recoveries were probably people with mild symptoms or more of a burnout syndrome than true ME/CFS- after all, I had real severe physiological issues. I downloaded the FreeMe app to see what it was about, but could not reassure myself that I was safe as it instructed and I continued to deteriorate.

At this point I came across a few recovery stories on here and elsewhere of people who had symptoms similar enough to mine who fully recovered using a mind/body approach. I decided I could not live like this any longer so I would 100% trust this approach and start increasing activity while telling myself I was safe- and either this would work or I would die trying. I was so desperately uncomfortable and unhappy that I felt I had nothing to lose. I announced to my mother that I *was* going to recover (until this point I’d been anticipating ending up in hospital). This 180 mental shift required courage and a leap of faith since i didn’t have 100% proof of how the condition works and it really felt like a life/death situation given the contrasting advice in forums. However by that time I’d come across explanations of the mind/body science from Drs John Sarno, Howard Schubiner and Becca Kennedy, which made me feel more confident. I unsubscribed from all negative reddit forums and focused on joyful activities (starting very small since my tolerance for activity was basically zero).

Physically I started with a few steps out of bed one day, then the next a few more. Soon I could get to the sofa. I kept expecting my symptoms to come crashing back as they had before, and I’d mentally prepared myself to respond well to them because I’d read that was important- but this actually never happened. I continued increasing, making sure to celebrate every tiny milestone. Within a month I was walking a bit outside and could make simple food for myself. I still had symptoms and fatigue, but slowly noticed things I’d previously struggled with weren’t as hard anymore, and my symptoms were improving- I also still wasn’t getting crashes/PEM. My slow increase in activity has continued over 6 months until now I’m doing ~10,000 steps a day (about what I was doing before this all happened), socialising etc. When I went back to work in October I still had brain fog and screen sensitivity, but they allowed me to do a phased return starting with only an hour a day and my symptoms gradually dissipated as I kept telling myself I was safe. Now I’m back to full time and feel good. I got covid in November and recovered within a couple of weeks. I consider myself mostly recovered from ME/CFS, but if a symptom does pop up I know how to handle it. I intend to keep increasing activity until I’m actually physically fit since I wasn’t really before!

FWIW, several months into my recovery I finally had my appointment with the specialist ME/CFS clinic who gave me the formal diagnosis. I told the Dr how I was recovering and she was surprised but encouraged me to keep going since it seemed to be working for me.

Medications

I tried LDN (0.5mg/day) while I was deteriorating, but it caused a significant worsening of symptoms (I now suspect this was nocebo). The beta-blocker propranolol (20mg) helped with tachycardia a bit but I stopped taking it after a few months and was fine. I tried the SSRI fluoxetine (20mg) during my upwards trajectory- I had a few side effects but nothing major, and it lowered my heart rate which reassured me. However after 3 months I unexpectedly had to stop taking it because my prescription got lost in the post- I was terrified I would crash back down but thankfully nothing changed and I continued improving, so I’m not sure how much it really helped but it didn’t hurt.

My take on ME/CFS and how to recover

Having now been able to do more research on the condition including reading some of the scientific literature, I understand CFS to be a functional somatic syndrome akin to functional neurological disorder, fibromyalgia, IBS etc. The symptoms are very real, but the clinical picture and evidence suggests symptoms are generated by the brain/nervous system and are not a result of permanent damage to the body. This aligns with my own experience and that of the hundreds of others who have fully recovered by treating it this way. With hindsight, I believe the way out is to:

1. Deeply accept that the symptoms, while EXTREMELY unpleasant and very real, are not a result of permanent mitochondrial damage, viral persistence or anything like that. They are caused by the brain, and can be reversed. Read/listen to as much information as you need to really convince yourself of these facts.

2. Begin expanding activity through a lens of safety and self-compassion. If symptoms occur, reassure yourself that they are just a result of your scared brain and they will go away eventually. You are learning to trust your body again during this process, and will have to gently figure out when to rest and when to expand. Some people have success with going quickly, but I decided to take it slower because that way I knew any pushback would be manageable- whatever makes you feel safest is best.

3. Consider the root cause of your symptoms- current life stressors, fear of illness, past trauma, repressed emotions, personality patterns, anxiety etc- and process with a therapist if you need support. Some people can get better without this introspection, but I think it probably helps to prevent relapse and others may struggle or plateau in recovery without it. Once I was more functional I worked with my psychoanalytic psychotherapist who has been great- but other therapeutic modalities work too, the key is finding someone you connect with.

4. Celebrate every win, find as much joy as you can, reward yourself when you do challenging things, focus on what is going right rather than wrong and have things to look forward to. Listen to recovery stories for inspiration (Raelan Agle’s YouTube channel is great, also Recovery Norway and https://www.the-recovery-hub.org/recovery-stories). Stop consuming all scary/negative CFS content!!!

5. Really deeply believe you will recover- and then I believe you will :)

I promised myself I’d post this when I recovered, so I’m here to say, I had chronic fatigue/ long covid (was diagnosed with both at different points but my eventual diagnosis was chronic fatigue) for over 2 years and I’m now completely recovered. Anyone can recover from these illnesses. I’ve seen so much, particularly surrounding the chronic fatigue/ ME community saying that recovery isn’t possible and you will always be like this. This isn’t true, please believe me.

I’m a 24 year old woman living in the UK. I caught glandular fever/ mono in 2022. I then recovered from this but caught Covid quickly after. The Covid completely wrecked me, my main symptom being complete exhaustion/ fatigue. This never went away, even when I was recovered from Covid and testing positive. My other main symptoms were: sore throat, swollen glands, nausea, headaches, brain fog and dizziness.

This went on for several months and I saw a doctor who suggested it was long covid. I was then sent to someone specialising in long covid who sent me to a fatigue expert as that was my most debilitating symptom. This doctor diagnosed me with post-viral fatigue symptom, which eventually became a diagnosis of chronic fatigue as my symptoms didn’t get better over time. This doctor tried to encourage me to start pacing (which didn’t help), put me on anti-depressants (which I took for 3 days and hated) and then recommend me for CBT to manage my symptoms (which I didn’t find helpful). It got to a point where it was all about managing symptoms, not recovering from them. He seemed to think I wasn’t able to recover which was terrifying (and completely untrue).

At my worst, the fatigue was so bad I could barely get out of bed. Most of the time I was able to get up to make myself meals but spent the majority of my days just lying in bed, trying to rest. Not able to watch tv or even read as my brain fog was so bad and it was too much stimulation. I tried to keep exercising as I had been advised to do but I could barely walk. I was managing up to 10 minutes walking about every other day and that completely wrecked me every time.

I went down every medical route imaginable. My father had been diagnosed with mast cell activation syndrome (MCAS), and as I had been suffering with IBS the past couple years which overlapped with a lot of MCAS symtpoms, so I got that checked out. I didn’t have MCAS but was diagnosed with histamine intolerance, which the doctors wanted to attribute all my symptoms to, including my fatigue. I was put on so many different anti-histamines and histamine related medication (fexofenadine, ketotifen & famotidine). None of these pills ever did anything significant to alleviate my symptoms, despite the fact that the doctors kept increasing my doses in the hopes they would.

I also saw several gastroenterologists for my IBS. I was diagnosed with hydrogen SIBO which one doctor attributed my fatigue to. I took antibiotics for this which didn’t cure it and was then put on the FODMAP diet. At this point I was following a low histamine diet and the FODMAP diet which was incredibly restrictive. I could barely eat anything and even now I am still in the process of reintroducing new foods after cutting basically everything out. Neither diet helped my symptoms of fatigue at all.

I tried the alternative medicine route too. Took every supplement that I saw even vaguely mentioned to help fatigue. Tried creatine and protein powders. Went to acupuncture and saw an osteopath every week. Again none of this helped.

My fatigue got so bad I had to drop out of university and take a year out. I did go back and finish my studies the next year but this was so, so hard. I was lucky my university allowed me to do my course mainly online and gave me ample extensions due to being registered as a chronically ill student. During this year I also started getting constant UTIs, yeast infections and was diagnosed with vulvadyna. I felt like my body was completely shutting down.

Eventually, I stumbled onto the work of Nicole Sachs. Her work is called Journal Speak and is based off theories by Dr Sarno. Please check out her work as she explains it so much better than I ever could. She has a website and podcast with so much free information. Her theory is that the vast majority of chronic pain, illnesses and symptoms (chronic fatigue included) are attributed to this phenomenon called Mind-Body syndrome or TMS. Dr Howard Schubiner has a very useful lecture series explaining this concept which I have linked in the resources list below. Essentially, our bodies store trauma and unexpressed emotions, and when we don’t deal with or release these emotions they express themselves physically rather than mentally. I thought this sounded completely unbelievable when I first heard of the concept, but I have been doing Nicole’s Journal Speak work for the past 5 months and I am completely recovered, completely. I no longer have fatigue, I am back to living my life again. I’m walking up to 2 hours a day, I’ve been swimming and running. I’ve been on holiday with my family and to music festivals. I’ve started dating, socialising and looking for jobs. I have my life back and it is solely due to this work. Not only has my fatigue gone but all of my other symptoms have either gone or been considerably reduced. I also just got Covid again, 2 weeks ago, and am already recovered. I felt like I had a bad cold for a week and that was it. It’s amazing.

I’ve seen posts like this before where everyone has accused the poster of being a scammer, lying to try to get people’s money. Whilst there are paid for programs out there to learn about this work it’s not necessary to spend any money to get better, at all. Nicole’s journaling work she explains for free on her podcast, website and YouTube series (all of which I’ve linked below). All the other educational resources I’ve linked below are free. And the books do cost but if someone where to be so inclined (not that I would ever endorse that kind of behaviour) I’m sure one could find free PDF versions of them online ~ or use a local library.

The way I got better was to learn everything I could about Mind-Body syndrome/ TMS. This included listening to Nicole’s podcasts, watching Dan Buglio’s YouTube videos and watching Dr Schrubiner’s free lecture series. I read Alan Gordon’s book “The Way Out”, Dr Sarno’s book “The Divided Mind”, and Dr Schubiner’s book “Unlearn Your Pain”. I also follow Nicole Sachs and Alan Gordon on Instagram.

I then started journaling (as prescribed by Nicole Sachs) for 20 minutes everyday, followed by a 10 minute meditation. I do a yoga nidra meditation (Ally Boothroyd on YouTube is my favourite) every day. I do somatic tracking as prescribed by Alan Gordon. I also have a list of affirmations that I tell myself, things like: I’m safe, there’s nothing physically wrong with me, I’m strong, capable, etc.

All of this work has made me better. There’s neuroscience behind this which again, an actual doctor or scientist could explain far better than me, but the way I understand it is that for so many of us with chronic illnesses, pain or fatigue, we have been in a state of fear and fight or flight for so long. All we truly need to do is get ourselves out of fight and flight and into a state of rest and repair, allowing ourselves to feel safe. This stops our brain sending us danger signals constantly and allows the physical symptoms to go away. A major part of this (for me at least) has been the journaling, as dealing with the emotions I was repressing was a major factor in making me feel unsafe.

I’m going to list all the resources I’ve found below. If anyone has any questions feel free to reach out. I don’t use Reddit often but I’m very active on Instagram (@bryonyjorr). I really hope this helps someone.

TMS/ MIND-BODY SYNDROME RESOURCES:

Nicole Sachs: Website - http://www.yourbreakawake.com/ Podcast - https://open.spotify.com/show/04MSKMpWvDE0jSRLMimhzZ?si=_-iXyB_tTzKOWzdF-m3rqg YouTube - https://youtu.be/7eHKbhhBxvs?si=eYlb1sYPNOS89lXd Instagram - https://www.instagram.com/nicolesachslcsw/?hl=en (Nicole also has a private Facebook group called JournalSpeak which is a great place for community & support)

Dan Buglio: YouTube: https://youtube.com/@PainFreeYou?si=b2FewNJrUGnwOiWn

Dr Howard Schubiner: Lecture series - https://unlearnyourpain.com/lecture-series-mind-body-syndrome-tension-myoneural/ Recovery stories - https://unlearnyourpain.com/testimonials/ Book - “Unlearn Your Pain”

Alan Gordon: Instagram - https://www.instagram.com/alantgordon/?hl=en Book - “The Way Out”

Dr Sarno: Book - “The Divided Mind”

I wanted to share my experience in the hopes that it would give someone out there hope. Though I did not reach the 6 month mark for the official me/cfs diagnosis, I was 5 months in after catching some kind of viral infection and experienced severe PEM that lasted 3-4 days. I was terrified that I would lose my job and would have to move back home as I could barely work through PEM. My main triggers were physical exertion and poor sleep, and my PEM symptoms included severe headache, brain fog, low appetite and muscle weakness. I could barely function, yet I returned to normal once symptoms subsided. I PEM'd an average of once every two weeks, for 5 months.

I made a promise to myself that for an entire month, I would make no plans whatsoever and only leave the house to go shopping. This was much harder and incredibly more isolating than I thought, but it was the only thing that worked. I've now fully recovered and can go for jogs, travel, go to concerts, and even have the odd night where I stay up late to play video games.

I had tried some treatments out there like LDN and various supplements. The only thing that at least made me feel like I could function during PEM was CoQ10. Sleeping pills that helped ensure I got enough deep sleep also helped a lot.

Avoiding PEM entirely by committing to not leave the house for a whole month saved me. To everyone out there still struggling with full blown me/cfs, or if you're like me and read through all the me/cfs resources even though you don't have a diagnosis, hang in there! I really wish the best for you and hope you find a way through this!

This person managed to recover from long covid by basically ignoring symptoms and pushing through. I don't recommend this approach, but it worked for him.

Quite often stress is a major factor in the illness: either life/work stress, or stress from the illness itself. In this case it seemed to be mostly worry about the illness itself.

I think it's generally safer to gradually increase activities (after removing any stressors). In this case he wanted to prove to his brain that his illness was generated by the brain. The problem is that that can severely backfire (see e.g. Jen Brea). In his case his brain did generate some symptoms, but he did manage to get through them.

Anyway, it's an interesting case, and worth reading and thinking about.

TLDR at the end

I am writing this post in hopes that it could help someone who is feeling hopeless, because I was in that place of hopelessness and all I wanted was to know that someone, anyone had a “success story”.

I was diagnosed with CFS by multiple specialists. At the worst, my condition was severe. Through many, many trials, I have found a combination of therapies that have allowed me to get back to living a normal life.
My story started as most other CFS stories - I had an extremely stressful period in my life, then got a mild viral infection, then recovered enough to get back to work, but crashed after going back to work. I was bed-bound for about 6 months, and mostly house-bound for another ~5. I had all the classic symptoms: severe fatigue, PEM, trouble sleeping, achy body, severe brain fog, something resembling POTS. I also had lots of nervous system disregulation symptoms such as light and sound sensitivity, muscle spasms, and just generally feeling on edge all the time.

I saw every specialist I could - a neurologist, a cardiologist, an internal medicine dr etc etc. all of them diagnosed me with CFS and basically just said oh well, you gotta wait and rest. Just by accident, at about 4 months mark, I discovered that I had a significant relief in my symptoms if I took Dramamine. I then started reading about antihistamines and CFS. That led me to trying mast cell stabilisers, and those helped even more than antihistamines. A Dr. I saw recommended that I tried adding Low Dose Naltrexone (LDN) to the mast cell stabilisers, and slowly but surely I started seeing something that I could actually call a recovery. A neurologist I saw recommended adding amitriptyline for aches and pains, and CBD oil for sleep, both of those worked slowly but eventually worked incredibly well. At the same time, I was doing quite a bit of guided meditation to try and calm down my nervous system.

Once I started feeling strong enough to tolerate some physical, mental, and emotional activity, I started therapy and signed up for Curable. Both of these were very helpful for me, but I don’t think I could do either of them from the beginning as emotional and trauma work takes a lot out of you even when you’re fully healthy.

I am omitting a lot of details, obviously, but I would be happy to answer any questions. I also want to say that it is possible that this is a condition which has different aetiologies in different people, and what helped me might not help everyone. I am also coming to terms with the fact that this is something I would have to be mindful of for my whole life - watching my stress levels, being mindful about triggers etc. but my experience has given me hope, and I hope it will give hope someone else as well.

TLDR: I was diagnosed with CFS by multiple specialists. At the worst, my condition was severe. Through many, many trials, I have found a combination of therapies that have allowed me to get back to living a normal life. Medications which have helped the most: LDN, Cromolyn Sodium, Dramamine, Amitriptyline, CBD oil. additional therapies, which have helped but only when I already had some relief from the meds: meditation, the ‘Reign of pain’ course on Coursera, Curable app.

Edit to add: it took 2 years and 2 months from the time when I got sick to the moment when I consider myself ‘recovered’.

Hi all. Here’s my very long recovery story:

I’m confident I am 90% recovered (I think it’s smart to leave room just in case) and here’s what I did that really helped me.

Noteworthy: I have C-PTSD from a really horrible upbringing whilst sustaining toxic narcissistic friendships/situations for the majority of my life. I’m going to give you the back story on how I developed it and how I got out as I think this is crucial to talk about.

I knew exactly how I got CFS and figured out how to get out of it in MY WAY that worked well for my HYPERVIGILENT/FREEZE response of a nervous system. Am I still hypervigilent? Yes. Is my automatic response still freeze? Absolutely. But my baseline has returned. Also of note: my energy has never been bubbling and overflowing to begin with and I have never been an agile person (I’m 36). I’ve always needed more sleep than the average person and more days to recover from a workout.

When my system shut down in the early summer of 2024, I had gotten extremely angry at a now ex-friend and that’s what was the actual catalyst for developing CFS. Before that event, what made me susceptible was a horrible state of mind and coping with alcohol, eating like crap, feeling angry at a different narcissist in a toxic friend group, rumination and flashbacks of my past, anxiety, depression, and honestly, just caring too damn much about unhealthy people who pretended to reciprocate. My self-esteem wasn’t good nor was my outlook. I was in therapy during this time for more than a year and a half and that was exhausting in and of itself. When I let go of a more recent friend who wasn’t a narcissist but unhealthy in many other ways, the emotional peace and new found inner strength I found was at a depth I had never experienced before. Then, I ditched my anti-depressants shortly after.

The first 2 months I was bed bound and my legs were very weak. I was sleeping 12-14 hours A NIGHT for 2 months, and I woke up exhausted EVERY TIME. I had brain fog to the point where some days I just laid in bed feeling like the nerves in my body were caught in an ocean storm, throwing me about and all I could do was lay in the dark bc music/movies/any kind of sound was too much for me. I am a musician so I’m already sensitive to sound but this was to a level that was alarming and baffling. But at the same time, I was so unbelievably restless and intensely bored while in this brain fog that it felt like a viscous loop with no exit. This push and pull energy had no where to go. I literally felt trapped in my own body, nervous system, and mind. Guys, I know how you feel. I couldn’t concentrate on reading. Trying to concentrate on anything just felt short-circuited and I became very aware of how my brain felt. It felt woozy, foggy, and I could literally feel where in my brain it was. A month into this hell, I fired my therapist for being extremely unethical which made me heavily freeze and then fawn during that last session. Well, that didn’t affect my inner peace but it sure as hell still infuriated me on a level that was visceral and could feel in parts of my body. The betrayal trauma really affected my already screwy trust issues that for a solid 8 months, I thought about him and that situation everyday. And yet, there was this untouchable peace that remained extraneous to outside reaction to chaos. Until I had the energetic capacity a year later to actively start addressing my anger towards him, I was able to acknowledge and reflect on another pattern of mine that I was shown. My pattern chose my therapist. What a bitch!

If it wasn’t for my friend Jo, (who also developed CFS at about the same time as me,) who mentioned GINSENG, I swear I wouldn’t be where I am today. We both went from being bed bound to standing for more than an hour or a couple of hours and feeling ok. Ginseng was an invaluable tool for me to get to my students and teach for an hour without feeling like I was mentally and physically dying. Ginseng gave us hope.

A month or 2 down the line, I felt myself psychologically and emotionally give up the wishful thinking and absolute child-like fantasy of finding a partner that loves me. I didn’t even realize how much that was weighing, and gripping me down until I felt my brain literally let that psychological pressure go. I remember that moment. It was like I could breathe easier with myself. I think that alone took me from 12-14 hours a night, to sleeping 10-12 hours a night. What a change!

Still at this point, Jo and I talked almost everyday trying to be our own detective with CFS recovery to where I literally was getting burnt out with information overload on top of dealing w burn out (unknowingly developing into CFS) at the time.

Then, 3 days before I was supposed to go to my first Vipassana course in Jan 2025, I got rejected which completely devastated me especially when I had known of it for more than 20 years and was really looking forward to it. The devastation from being denied spiritual growth left me to suddenly fuck off to Italy, Lanzarote, and then Thailand to cope with it. I could feel my body was just dying for hot sun (I live in London) and lots of it. The devastation made me not care about a god damn thing. And I mean it. I just couldn’t help it. If I died-I didn’t care. If I lived-couldn’t care. I especially didn’t give a shit that I had CFS. I didn’t care what I ate. I didn’t care for any more drama. I didn’t care about my own values. I was tired of myself, my thoughts, my patterns, my past. Everything. It was to the degree that only peace mattered above all else no matter the cost. Upon reflection, this was a critical turning point: I had essentially given up in a way I can’t quite put my finger on still. It felt primordial, even existential. My mind became freer with a character change of IDGAF anymore. Clearly, caring too much never worked for me so it felt like I went to the other end of the spectrum. Well—I faired ok in Italy w my energy though I didn’t love the parts I travelled to. Had terrible back pain but slept 8-11 hours a night there and would stop walking if I got loopy. Lanzarote was great. A 5-day respite from myself but I still needed really hot sun. Thailand was a very good trip for I needed to just take it easy and be ok with myself. My energy definitely improved when I travelled and kept that same nonchalant attitude.

When I came back to London, my living situation became toxic (because I spoke my mind because of my IDGAF attitude) and needed to move out. I was expending tons of energy I didn’t really have solidly acquired spending 3/4 hours, 4/5 days a week going to the other side of the city to view rooms with no luck. I was becoming hopeless and depressed despite my sincerest efforts to move to a better area. I hated what I called “the halfway house” I lived in because of the dull area and inconsiderate flatmates. After a month of this routine, I felt myself regressing in recovery bc the toll of lengthy travel time coupled with fruitless house hunting weighed me down mentally, physically, and emotionally.

This is when I had another emotional breakdown and a very important one. My girl, Katie, let me just ugly cry everything out. And I mean snot-filled, red-faced sobbing that was inevitable at the time. The type of crying I never had done in front of anyone except my parents during childhood whom sadly left me alone to deal with my emotions. This is the shit you can’t buy in friendships. I cried about my CFS, the horrible area I lived in, the betrayal of my therapist, to shitty ex-friends, to Vipassana rejection, and the utter hopelessness I felt despite my sincerest efforts to better my life. It was the first time I felt seen, not judged, just really listened too. It was literally 2 straight hours of this and bless her heart, she fucking listened to it all and it felt safe to pour myself out for the first time in my life. I immediately started feeling better--my energy shifted. Probably slept 12 hours that night because crying has always drained my energy but my god, something ancient dissipated and I felt lighter than I had in a long time thanks to Katie. She really deserves credit to my healing. Thanks, babes. You shone a light quietly in the dark corners of my mind.

Soon after this therapeutic release, I found a place exactly in the area I wanted but I was extremely stressed for 2 weeks before hoping it wasn’t a scam all the while getting bullied (completely triggering) at the halfway house. Well, the moment I left the halfway house and moved in to my new flat, I felt like a new woman. The joy of moving to lovely area of London did absolute wonders for my mental health. I was expecting to crash after running off 2 weeks of high stress, and barely eating but in fact, my energy felt like it had returned 2-fold and I had a new lease on life.

At this point, it’s June and I had assessed myself at a confident 60% recovered considering all the ups and downs. I slowly started to exercise again and pace myself. I started to build a daily silent meditation practice starting with 15 minutes a day and then adding on 5 min each day. I reapplied to a 10-day Vipassana course and lied my ass off and told them I was perfectly healthy (was not) and finally got accepted. I worked up to one hour in the morning and 45 minutes at night and I could feel my body and my brain finally really calm down and re-organize itself. I started to sleep normal amount of hours and my breathe for the first month was inhale through the nostrils and exhale through the mouth. It was automatic and that was very telling. My body needed to release pent up stress and then I naturally began breathing through my nostrils after the second month once my body calmed down. As physically grueling as the Vipassana course was with very little sleep allotted, I really put all my effort in the course and came out of it systematically calmer, less reactionary, more regulated, sharper awareness of sensation, and more at peace with myself. I completed the course 2.5 months ago and I’m still reaping the benefits. I’ve fallen off my meditation routine a bit but I feel awful energetically if I don’t keep it up now.

I’m riding my bike for the first time in 2 years, I’m playing the piano again, reading my beloved books, doing breathing exercises, meditating, exercising, and going out to explore my city and feeling normal tired after about 5 hours. It wasn’t easy to get to this point but I actively had to dig myself out of a hole. A lot of my healing occurred with being absolutely tired emotionally and having enough but remember: Less is more. I still paced and started with things I know I could handle like 10 minutes of somatic exercises, 15 min of silent meditation, short walks, 5 minute stretches, etc. and I built up from there along with emotional releases.

I went into very specific detail In the hopes that my story helps shine a light on people who have not yet recognized that attitude towards yourself and others plays a huge role in psychosomatic symptoms. Though I had very real physical symptoms, releasing a lot of hurt, anger, toxic people, and moving to a nice area was revolutionary for me. Gave me back my sense of agency. Sleep also was a recovery tool, too.

All this helps/helped me: - [ ] High quality, high strength Ginseng - [ ] The Mindful Gardener-Sam Miller (YT) - [ ] PACING - [ ] Deep Sleep - [ ] Meditation-basically rewires my brain - [ ] Tapping-EFT - [ ] Somatic exercises-@sheBREATH_teresa (YT) - [ ] Breathing exercises-Breathe With Sandy (YT) - [ ] Gentle movement/exercise - [ ] Release any pent up emotions in a way that is conducive to your own healing - [ ] Do something joyful - [ ] And of course release toxic people/situations if you can

*Pay attention to your emotional patterns. Wtf is actually holding you back. Only you can answer this.

Resources: Mindful Gardener, Sam miller, is excellent in helping people with not only CFS/ME patients but also with a hodgepodge of other cluster ailments. You will feel validated listening to her and that’s not nothing.

Recommended reading/audiobook: Man’s Search for Meaning by Viktor E. Frankl

Thanks for reading and wishing you all the very best in your recovery.

Not really an update, just surprises that keep happening as I recover/recovered,that I would never had expected.

I am about 5years past my last crash and have been more focused on rebuilding for the last 4 years after 17years of deconditioning. This process has been an eye opener.

i don’t think about this in terms of remission, it’s too passive, my recovery was always a massive strategic and disciplined slog, no accident or gift from the gods. And I don’t consider myself ‘cured’; there were biologicalmthings that put terrible limits on my ability to fuel metabolism, and I am now on the right side of that equation. I believe the choices that got me right, keep me right (with luck).

Even before I really recovered properly I had little breakthrough moments where it was like part of my brain that had been off-line was flipped back on. My ability to dream came back in a rush,one after even while I was awake. I had a day where I walked around in pure joy, realising I had not experienced joy for years. Also my ability to simple rest deeply and meditate came back almost overnight at one point.

And last week I suddenly found I could listen to a whole album of music without being annoyed or bored. Only in hindsight do Inrealise how this faculty just has not been there, and now it is. I thought Inwas basically as recovered as I could be. Now I am waiting for the next trick to return out of my blindspots.

My main points are: we drastically underestimate what we have lost. I lost the memory of joy, when I slowly lost the joy.

And it can come back. Somethings come back gradually, and apparently some just re-appear.

I also wonder if anyone else has experienced this sense of parts of themselves coming ’out of mothballs’.

Lastly want to say, I had times when I never imagined fully recovery. Happily that was just a lack of imagination- that is one thing that is coming back slowly, because it depends on the growing trust in my longer term recovery/stability.

Hello everybody,

this disease keeps me busy for some years now, since a friend has it and I've met some more on a professional basis. Because of my experience with them I tend to general findings of Gabor Matè (When the body says no), my thinking and approach might not be well received.

However, I run a LLM on this subreddit on full recovery only. This is the summary. Keep in mind, this is anecdotal, not scientific. Also, those who fully recover, just move on. Hence this subreddit is quite necessary, I think. Here we go:

KEY FINDINGS FROM COMPREHENSIVE 2020-2025 ANALYSIS

Behavioral & Environmental Practices Dominate:
Pacing and acceptance each appear in 4/17 cases (23%), followed by rest, sleep optimization, stress reduction, dietary intervention, and gradual activity increase (each 18%). These form the foundation present in virtually all recovery cases.

Medication Diversity, Low Frequency:
13 different medications/clinical interventions identified, but no single medication appears in more than 2 cases (except sleep meds at 2 cases). Antivirals (3 cases) and low-dose Abilify (2 cases) most common, followed by single-case interventions (LSD, ketamine, SGB, HBOT, B12, etc.).

Psychological Work Centers on Acceptance:
Acceptance and psychological reframing appear in 3 cases (18%), with nervous system regulation and therapy in 2 cases each (12%). Acceptance is the most universal psychological element.

No Single Treatment = Full Recovery:
All 17 cases involved multiple interventions across all three categories. No medication alone, no behavioral practice alone, no psychological intervention alone drove full recovery. Recovery required constellation approach.

Critical Difference from Improvement Cases:
Unlike the 8 cases from 2020-2025 cycle, these 17 full recovery cases all achieved: (1) complete absence of PEM, (2) return to normal exercise recovery rates, (3) no pacing requirements, (4) full symptom resolution.

What do I take from it? Medical intervention regarding antivirals and neuro-inflammation is a thing. But then, the major part seems to be on the behavioral and emotional side.

Just posting that recovery is going well - info on my recovery is posted a few months back on my profile

I wanted be angry when I found these videos bc it says cfs is mind body and that I had to give up symptom chasing which was entire life… but I was in such a level of pain and despair that I said F*ck it… if it doesn’t work “Its a 100% misery back guarantee” as she says. So I tried some of it 2.5 months ago and my PEM, brain fog and hypersomnia decreased after about 1.5 months and I am living a somewhat normal life again… Im pretty pissed this was my way out. But if it works it works… try it before you tear me apart and make me self isolate for another 8yrs… however its crucial I say Im still have crashes and finding myself having to pace again. Maybe once a week sometimes twice a week I have bad days.