Most ME/CFS sufferers, as well as those with conditions like long covid and fibromyalgia, will be all too familiar with becoming test subjects in their own less-than-scientific recovery experiments.
I know that was the case for me, as I described in my previous blog. After eventually receiving a diagnosis of ME/CFS – following more than a year of tests and visits to specialists – I was left to it, told to try to manage my symptoms, and cut off from further investigation or medical care.
It was soon apparent that I was going to have to find my own way out of this maze of illness, with no map and no guarantee that it was even possible to escape – indeed I was told by doctors multiple times that it wasn’t a possibility.
Taking charge of my own recovery
So I did what most people with Chronic Fatigue Syndrome end up doing: embarking on a long and painful journey of trial and error (after error…) trying to find the elixir, that one thing, that might help me get my life back.
Between 2016 and 2019, I tried what felt like just about everything to heal myself. Certainly any method, technique, or therapy that was supported by anecdotal evidence or positive results in even the smallest of medical studies.
I ended up spending thousands of pounds of my own savings, as well as significant amounts from my parents, on treatments, supplements and therapies. I also spent most of my time and limited energy pursuing ways to get better.
Every time I felt that I had found the answer, I would experience a crash again.
I left no stone unturned: I tried acupuncture, restrictive diets, lymphatic massage therapies, antidepressants, a head-scratching number of different vitamins and supplements, careful pacing, graded exercise, counselling, and chiropractors, to name just a few.
All of these efforts failed.
Every time I felt that I had found the answer, or part of it, I would experience a crash again – often much worse than before, sometimes taking weeks to get back to a baseline of being manageably ill.
My illness eventually became a prison, completely isolating me. I would struggle to walk to the bathroom that was only a few steps away from my bed. I used to use a wheelchair to leave my parent’s house to try and maintain some normality, but even that became too much at some points.
I had once told myself that I would never stop trying to get better, but the well of optimism and hope that I once thought was bottomless, quickly dried up.
I only re-found that feeling of hope when I discovered a series of ME/CFS recovery videos online.
My turning point
The videos were featured on the website cfsunravelled.com. These days there are a lot of great recovery videos on YouTube (check out Raelan Agle’s channel), but they were more difficult to find back then.
The people that were interviewed in the videos all described very similar journeys of pain, suffering, and lost hope – they sounded a lot like my story. Most had tried the same techniques and methods that I had, without luck.
Except now these people said they were fully recovered and leading normal lives – in some instances very active and demanding ones.
I had to find out more.
The interviewer was Dan Neuffer – an former physicist who had recovered from ME/CFS himself. He had a book out about the condition (CFS Unravelled), a website full of recovery interviews and, as I would later find out, an ME/CFS recovery program that was apparently already helping a lot of people.
Learning to trust again
Before I could sign up to this recovery program, I needed to trust that this was the real deal. In my case, the building of that trust was a slow process, after being promised so much so many times before – and then feeling crushed when I didn’t get any better.
I gradually came to the conclusion, though, that there was something to what this man was saying. He seemed to really care about helping people and was confident that he had found the answers from his own research and subsequent recovery.
The recovery stories that Dan Neuffer featured on his site were from all sorts of people – young, old, men, women, and all from different backgrounds. They were telling stories of recovery using a range of different methods and techniques (however with some important similarities).
Most importantly for me, he featured people who had recovered using his own program, as well as other online programs, and others who had just stumbled across what worked for them. In other words, he wasn’t just trying to sell his own product – he was genuinely interested in how people found their way to recovery.
I started researching his program ANS Rewire. It apparently had backing from some doctors and experts, as well as many positive reviews from people who had recovered using it.
The final persuasion I needed was that the course came with the promise of a full refund if I failed to see significant improvement in my condition within six months (now listed as a 30-day guarantee).
So I signed up, promising myself that I would follow the program to the letter.
ANS Rewire – the program
ANS Rewire is an online course that delivers daily lessons, with one becoming available each day via the course website. This was a struggle for me at first. Even if I had the cognitive function or physical energy to do more on a particular day, I couldn’t skip ahead.
I wanted to get better and so naturally wanted all the answers immediately to supercharge my recovery. But looking back, it was important that I slowly consolidated my understanding about the underlying cause of the condition, before gradually adding in the interventions to tackle it.
I won’t give too many details about the specifics of the ANS Rewire program, as the course is behind a paywall and is Dan Neuffer’s protected work. But I can hopefully divulge enough information to describe how it helped me.
The important initial thing that the course teaches is that all physical symptoms stem from the same underlying dysfunction. The autonomic nervous system, Dan argues, has become dysregulated in ME/CFS (the trigger for this may vary from person to person).
The ANS swings between the ‘rest and digest’ state of the parasympathetic nervous system to the ‘fight or flight’ mode of the sympathetic nervous system. It then gets stuck in these extreme states, instead of returning to balance as it would in a healthy person (homeostasis).
This dysregulated ‘stuck’ ANS state then goes on to cause all sorts of symptoms in different parts of the body and within cells – as our internal systems are all connected by the central nervous system.
The symptoms are real, not just in the brain. This is very important information to understand for many people with ‘invisible’ health conditions in general.
Hitting ME/CFS from every direction
The course encourages a holistic route to recovery, with the aim of gradually retraining the autonomic nervous system to function as it should. Diet, supplements, sleep, counselling, breathing and movement are some of the topics covered throughout.
However, the first thing that really made a difference to me was consistent and lengthy sitting meditation.
I started by doing two or three 20-minute meditations everyday (Dan recommends slightly different times, but this is what worked for me). Even though I’d dabbled in meditation before, it was tough in the beginning to sit still for so long, just focussing on thoughts, emotions, and physical sensations – which were often very painful.
But I knew within a few days that this intervention was truly working, more-so than anything I’d ever tried before. After a week of sticking to the regime, the intensity of my symptoms significantly reduced, and I was generally much calmer about any symptoms that did come up.
I couldn’t quite believe it, that something so simple could bring about such huge changes.
I started meditating more and more, and when I felt okay I began adding some very gentle yoga into my routine.
I began to have some control over my symptoms for the first time in years.
Compounding benefits
Meditation and yoga led to other knock-on benefits that improved my overall wellbeing and ANS function, such as better sleep. I was no longer waking up in the middle of the night in cold sweats or having panic attacks.
Alongside the daily meditation, Dan Neuffer introduced his brain training technique which was, in my opinion, the other key part of the program.
While I can’t talk about the exact technique, it involves consistently interrupting negative thought patterns and emotions, as well as any focus on the symptoms themselves, and replacing with them with positive thoughts and language.
You are encouraged to go through this brain training process as many times a day as is necessary. When I started, I was probably going through the REWIRE process upwards of 50 times a day.
I had previously tried CBT therapies and interventions many times before, without success. While this brain training technique does include elements of CBT, the process also involves interventions and techniques from other therapy models (such as NLP). Importantly, REWIRE gives a framework for consistent and continued use and application, which CBT therapies failed to do for me before.
Getting stuck
Personally, I was much more sold on the meditation to start with. I could see the effect it was having on my body and mind and believed that if I kept on doing it consistently that I could recover fully.
I was much less consistent with the brain training side of things. I tended to do it well for a few days and then I would completely forget about it for weeks, before picking it up again temporarily.
I would say that meditation, yoga, and inconsistent use of the ANS Rewire technique did get me to around 60-80% recovery over the course of a year. My level of wellness, I viewed, was dependent on how well I kept up with meditating multiple times a day.
Unfortunately I got stuck at the 60-80% recovery mark for a long period. While I had got most of my life back – I had a part-time job, I was playing tennis again, and socialising – I could still be struck down by a setback from time to time.
My mind was still telling me to be very careful, not to do too much or risk a setback, especially when I hadn’t meditated for the ‘correct’ amount of time or consistently enough. So I was still living in fear and meditation – or lack of it – had become a source of stress.
I believed – perhaps more accurately, my body and nervous system believed -that I could only keep symptoms at bay if I was vigilant and did at least 30 minutes of meditation everyday.
If I fell off for a few days or couldn’t meditate for long enough, I became stressed that symptoms were going to come back . And because of this they often did.
I eventually came to the conclusion that I’d only be able to fully recover if I incorporated some kind of consistent brain training into the mix.
I had spent a long time unable to believe that positive thinking, affirmations, and self compassion could make an actual impact on my very serious feeling physical health problem. It seemed to me like bringing a butter knife to a fight with a dinosaur – less than effective.
But I was wrong.
Adapting and personalising the program to suit me
I eventually reached full recovery by adapting and personalising the ANS Rewire program, using my own imagery and visualisations, my own recovery language, and adapting the brain training process to suit different problems.
I plan to cover some of my own specific strategies that helped me recover in future blogs.
I want to make it clear that I have no affiliation with the ANS Rewire program or its author. These are my honest views about the program that significantly contributed to me getting better from ME/CFS.
I can’t promise that the course will help anyone else – all I know is that it helped me. From rock bottom, feeling that there was no hope of actual recovery, it gave me the tools and strategies I needed to get my life back.