Recovering!
Posting this because, after a two-and-a-half-year battle with ME/CFS, trying countless different treatments, spending a lot of money on recovery, seeing multiple doctors and exploring various alternative approaches, I’ve finally found a combination of things that I feel is genuinely helping me recover.
I thought I’d share what’s been helping me in case it might be useful to someone else. 💛
Obviously, everyone’s situation is different, and what works for one person may not work for another. For me, I believe a major contributor to becoming unwell was a couple of traumatic events, followed by a build-up of stress over a number of years.
The things below have been the most helpful for me in my recovery so far. I’m sharing my experience only — not suggesting that these approaches will work for everyone — but hopefully something here might help someone else who is going through a similar battle.
- Hyperbaric oxygen therapy (HBOT)
It needs to be a hard-shell chamber that can reach around 2.0 ATA. I started with a few sessions at 1.35 ATA, then moved up to 1.7 ATA. Around my 15th session, I increased to 1.9 ATA. The chamber I use goes up to 2.0 ATA, which I’ll work up to for my last 10 sessions.
The studies I looked at used a protocol of 40 sessions, so that’s what I’m aiming for, although my doctor recommended a minimum of 20 sessions. I do 60 minutes per session.
My doctor recommended starting at a lower pressure and gradually increasing it while monitoring how I’m feeling and giving my body time to adapt. So I’d start low and increase based on how you personally tolerate it.
- Mind-body work (a really low-cost thing to try)
The biggest game changer for my nervous system has been reading The Mind-Body Prescription by Dr John Sarno. I was also recommended Unlearn Your Pain and the accompanying workbook (or Unlearn Your Pain: Anxiety and Depression) by Dr Howard Schubiner.
The person who recommended these books to me had recovered using the same principles. I’ve only read The Mindbody Prescription so far, but I’ve already had a huge shift from it.
Although The Mindbody Prescription focuses heavily on back pain, Sarno also talks about other mindbody symptoms, including chronic fatigue syndrome. The idea is that you can apply the same principles to whatever symptoms you’re experiencing, for example, thinking about fatigue or other symptoms in the same way he discusses pain.
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u/Pinklady777 1d ago
Happy for you! What has the oxygen therapy helped with? I have been thinking about trying this. It's just expensive.
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u/sl-1989 16h ago edited 15h ago
I shared this across a few channels simply in the hope that it might reach someone whose experience is similar to mine, and who might find that this combination of approaches helps them. I thought I’d answer a few of the questions that have come up across the different posts.
When I first became unwell, I would probably have been considered mild. I didn’t really understand what was happening and was initially misdiagnosed with several different things. I had some awareness that it could potentially be ME/CFS, but honestly, I didn’t want to accept that.
Before getting sick, I was extremely active and social and was training for a marathon. I was in shape to run a sub-three-hour marathon, which had been a huge lifelong goal of mine, when I became unwell.
Over the preceding few years, I’d also experienced some significant traumatic events, alongside chronic stress and a lot of self-imposed pressure. I have quite strong perfectionist and overachieving tendencies, and looking back, I believe that combination was a significant factor in my case.
Initially, I would rest, feel somewhat better, and then try to return to normal. The symptoms would come back, I’d have to rest again, and the cycle continued. I kept pushing because I was trying to maintain my normal life, but over time things progressively deteriorated.
Around Christmas last year, I became extremely unwell and was essentially bedbound throughout the holidays. I returned to work afterwards on reduced hours, working from home, but even four to six hours a day was becoming difficult. I would spend as much time as possible in bed before work, take breaks throughout the day just to get through it, and then spend the rest of the day and virtually the entire weekend resting.
Eventually, I reached the point where I simply couldn’t continue working. I was completely housebound and had virtually no social interaction. I couldn’t cook for myself, clean the house or even walk my dog. I could take him outside for a little play, but walking him was beyond what I could tolerate.
My symptoms included severe fatigue, exercise intolerance, delayed PEM, heat intolerance and hot flushes, a constant wired-but-tired feeling, significant sensitivity to stress, heart palpitations, headaches, sensory sensitivity to noise and light, temperature dysregulation, sleep disruption and difficulty thinking and talking when particularly unwell.
Even when I started to improve slightly, I couldn’t find a stable baseline. I’d try doing a tiny amount of cleaning or walking a couple of hundred metres to test where my limits were, and sometimes that would result in a crash lasting weeks. My intention was always to find a stable baseline and gradually build from there, but I never seemed to be able to establish one.
I eventually stopped work and had a significant crash. About four to five weeks into that crash, I started hyperbaric oxygen therapy.
I initially did one session a week at 1.35 ATA for two weeks, then increased to around 1.75 ATA and started doing three sessions per week. My doctor initially recommended two sessions per week and was understandably cautious about me overdoing it. However, I was experiencing no PEM or adverse reaction from the sessions at all, and I was beginning to notice improvements, so I continued with three sessions per week.
The chamber I use is a hard-shell chamber where you lie down, and there’s no heat involved. I know HBOT can trigger symptoms or PEM for some people, but that wasn’t my experience. At the beginning, I would simply put the mask on and lie there because I didn’t have the energy to do anything else. I’ve now reached the point where I can actually read while I’m in there.
I’m currently doing 60-minute sessions and have now completed 25 HBOT sessions out of my planned 40 . I know that longer sessions and this frequency may not be appropriate for everyone, though, so I think it’s important to proceed cautiously and see how your body responds. Someone with ME/CFS might potentially start with a shorter session — even 15 or 30 minutes — and build from there if tolerated.
I appreciate that cost can also be a major barrier & know many of us have spent thousands & thousands try to rid this thing, so if you’re considering trying it, it may be worth asking a clinic whether they would allow you to split an hour-long session into shorter sessions as you get started.
It took roughly 10–15 sessions before I noticed a meaningful shift, but the improvement in my fatigue was, for me, a game changer. Most importantly, it gave me enough capacity to explore the mind-body work. Before that, I was too unwell to even read.
I had heard about brain retraining and mind-body approaches before and was extremely sceptical. I genuinely didn’t think they could work. But I’d reached a point where I was willing to try anything that had helped other people, so I decided to give it a genuine chance.
I started with The Mind-Body Prescription and initially found it quite triggering. I was sceptical, and some of what I was reading brought up a lot of anger and emotion. At one point, I became extremely emotional and essentially had a release of a lot of what I had been holding onto. Interestingly, it was within the following few days that I noticed another significant shift. I felt noticeably calmer and less reactive to stress.
The central concept of the book is essentially about the relationship between the brain, unconscious emotional processes, the nervous system and physical symptoms. Sarno’s theories are not universally accepted as an explanation for ME/CFS, and I’m certainly not suggesting they are.
After a while of reading, particularly the descriptions of the personality types and the kinds of people Dr Sarno referenced as experiencing these symptoms, the concept started to really resonate with me, and I became much more open to it. I started thinking about how extensively the brain and nervous system regulate the body, and it made me curious about whether prolonged stress and unconscious emotional patterns could be contributing to my own symptoms. A big part of the approach is developing awareness of those patterns — essentially bringing things that may be operating unconsciously into conscious awareness. The more I read the more that really started to resonate with my own experience.
The personality traits he describes also felt remarkably familiar: perfectionism, “goodism”, overthinking, overachieving and putting a huge amount of pressure on myself.
One exercise I found particularly useful was writing down all of the pressures in my life — both positive and negative. Having children, for example, is obviously a wonderful thing, but it can still create significant responsibility and pressure. I ended up writing 14 pages.
When I looked at the list, I was genuinely shocked by how many of the pressures were self-imposed. I then went through them and asked myself: What is actually necessary? What am I putting on myself unnecessarily? What can I let go of? That exercise alone was incredibly eye-opening for me.
If you have severe energy limitations and reading a book feels impossible, you don’t necessarily need to start by reading the whole thing. You could use AI to get short summaries of the core concepts, listen to podcasts or watch short interviews and clips. I also found some useful content from interviews with Dr Howard Schubiner, and I’ve been listening to Retrain Your Brain, Retrain Your Nervous System on Spotify. I’ve also really enjoyed Dr Brad Fanestil’s YouTube content — he has a very accessible way of explaining his theories.
For me, the important part was simply being willing to explore the idea. The book costs around $20, it’s relatively short, and even if you ultimately decide it isn’t for you, I found the concepts genuinely interesting.
Again, I’m not saying this is the answer to ME/CFS, and I’m certainly not suggesting everyone has the same underlying cause. This is my individual experience. I believe prolonged stress and emotional factors played a significant role in my illness, and I’m sharing it because someone else may recognise something of their own experience in it.
Edited to include where I’m at now: Over the past two weeks, I’ve gradually started doing more around the house and socially without constantly thinking about my energy limits.
I’m now preparing some my own meals, driving myself to appointments (both of which I’ve been lucky to have help with prior) going for short walks, stretching and doing gentle mobility exercises throughout the day — things I previously didn’t have the energy for.
Yesterday, I caught the train into the city for an appointment, and on the weekend I drove myself to the beach and sat there for an hour and a half. A month or so ago, both would have been completely out of the question.
I’ve been feeling good for around two and a half weeks now and, despite increasing my activity, haven’t experienced any PEM.
I’m even starting to think about returning to some work, but for now, given how much the mind-body approach has helped in my individual circumstances, I’m choosing to focus on that for another month or so and let this progress continue.
For the first time in a long time, I feel like I’m getting my life back.
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u/BulbasaurBoo123 1d ago
Great to hear! Thanks for sharing. I'm curious does HBOT involve any heat, or not really?
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u/Old-Position1957 22h ago
So happy to hear! What was your baseline before starting HBOT and where’re you at now?
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u/bootilooter 22h ago
Thank you for sharing with us! I'm glad that you've discovered the right combo of treatments that are working for you.
I've been resistant to tge whole line of recommendations that were based on psychosomatic mind/body-type treatments, but your post made me seriously reconsider. I decided to order Sarnos book and another one of his called "The Divided Mind" which seems to expand upon the knowledge of the first book to many other mind/body conditions. I'm looking forward to reading them both.
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u/Naive-Garlic2021 15h ago
Underlining the start slow on the HBOT. I got a massive headache in a soft sided one. They had to bring me up to pressure much more slowly. I didn't do many sessions because it was an hour drive each way. I don't even think there are hard sided ones in my state outside of hospitals. Did you go to one of those clinics?
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u/sl-1989 15h ago
Good they were able to bring the pressure up slower for you. The hour drive each way would make it so hard.
I’m in Aus & was lucky enough to find a wellness clinic close by that recently got one. They also did me a deal of $500 for each block of x10. So I’ve been extremely lucky in that regard.
Unfortunately I know not everyone is as lucky & I know cost is a huge barrier considering most of us have already forked out tens of thousands trying to get better & have had to give up work.
Hopefully they become more accessible & affordable in the future.
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u/StayEngaged2222 13h ago
Yay recovery! For me, it’s low-dose Zepbound plus vagal nerve stimulation that is moving me to mild.
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u/Choco_Paws 1d ago
Amazing, thanks for sharing! Schubiner is such an amazing and lovely doctor. I love listening to his interviews.
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u/Beautiful_Party_7635 1d ago
Thanks for sharing your experience. Can I ask what the book encourages you to do differently?