A review of the recovery programmes that helped me heal from ME/CFS
The chronic symptoms of M.E/CFS were present in my life for 18 years with varying degrees of severity. At some points, I was able to work and lead a relatively normal life with few symptoms. At my most severe, I was unable to leave my bed for nearly 3 years other than to go to the toilet. I moved into a new house at the start of my most severe relapse and couldn’t go downstairs for 2.5 years. I had an electric bath lift to help me into the bath, before that my mum washed my hair in bed. I know what it’s like to go through the worst with this illness and I am now recovered, climbing mountains, I’ve spent 6 months living in Thailand and I have my life back. Recovery is possible.
I tried all of the things to heal. Pacing, activity diaries, gut health, diets (from keto to paleo, low sugar to gluten-free, dairy-free, celery juice, Terry Wahls’ MS diet), supplements, seed cycling, castor oil packs, probiotics, meditation, homoeopathic remedies. It wasn’t until I found mindbody approaches and brain training that I began to see lasting, sustainable progress and healing.
To give you hope and empower you on your own self-healing journey, I've put together this review of the M.E/CFS recovery programmes I did that got me to where I am today. This includes reviews of ANS Rewire, Mickel Therapy, Curable Health App and CFS School. I’ve also included all the aspects I believe are important for healing. (For a brilliant review of many more healing programmes, check out Heal with Liz).
You can also check out the recovery interview I did with Heal with Liz on YouTube.
It can be overwhelming researching and choosing recovery programmes when you’re ill and scared. Use this information to help you on your journey, feel what’s right for you and know that you’re not alone. If you’re looking for more personal support, I’d love to hold space for you in my Health Recovery Coaching or Return to Self Coaching.
ANS Rewire review
The nitty gritty stuff (logistics)
A video-based programme of around 40 lessons. There’s a new one each day with a little action step you can take at the end of each video. I did the programme at my own pace as I wasn’t well enough to watch a daily video. I also took a pause for a few weeks in the middle so the option is completely there for you to go at your own pace if you need to.
There’s a forum-type response system for each video where you can ask questions and Dan, the creator, will reply. It’s really helpful to read other people’s questions, I learned a lot from this.
The REWIRE technique itself doesn’t involve any visualisations.
A 1:1 with Dan is available. He was very generous with his time and I spoke to him via video call for around 1 hour. At the time, this was free of charge.
The aspects I liked
As Dan is a physicist, his explanation of what’s going on in the nervous system and brain was concrete. An important element of our recovery is understanding and education around what’s causing symptoms (you can read more why in this blog post, Why chronic illness, and therefore healing, is so different for everyone).
Repeatedly writing down affirmations or positive statements to cement some of the approaches were some of the daily actions. I took this idea and used it in my journal, creating my own statements to keep motivation and change my beliefs. I found this really helpful.
His belief and the motivation he got across in the videos for you to keep going and recover.
The videos go into stress and stressful thought patterns. They invite you to look at your life and try to understand why you got ill in the first place and how your life is creating the illness, and therefore, what you need to change as part of your recovery.
Dan was big at getting you to celebrate your progress which is key in showing evidence to your brain of what you’re capable of - really important for brain training - and it gives you faith that what you’re doing is working . This is a really important part of recovery, I wrote down every week what I was celebrating and it’s something I still do to keep my brain focused on what I do have, rather than on what’s lacking (our brains love a negativity bias so anything we can do to redirect that is helpful).
There were lessons on the importance of stress postures and how we might hold our bodies in a stressful way, i.e. bracing for symptoms. Although it doesn’t go deep into reading the body and WHY we might be doing these postures, it taught me to notice them and change them.
The recorded meditations and visualisations were helpful.
Lying outside for the first time in over 2 years and celebrating my progress after every time I went out during brain training.
The aspects that could be improved
There was no connection with other people doing the course so I was doing it totally alone. The forum helped in answering questions but there was no collective, no support with others who could understand what I was going through. Co-regulation is an important aspect of nervous system regulation and the emotional support we need in doing this work wasn’t really there, other than the 1:1.
There is some mention of how personality traits, like perfectionism or a helper personality, can create stress in the body, however, I felt this was a bit of an afterthought mentioned in the later stages of the programme. There isn’t much depth to this or the trauma work and inner child work necessary for healing.
The delivery is quite ‘straight up’ and ‘academic’. If you resonate with the more spiritual or deeper connection side of healing, you probably won’t find this here.
How it felt
I didn’t feel overwhelmed with information straight away. It was actually 12 or so videos (don’t quote me on that - from memory!) into the programme before you learnt the brain training technique. I remember feeling a bit frustrated and wanting to learn it straight away, but the education prior to the technique was very important so I understand why.
I loved Dan’s mantra ‘Dare to dream’ in the programme. He gave me permission to think about a future that I had cut from the possibility of my mind. I remember the opening up this made me feel, an expansion into hope that had been dwindling for me. His motivation and enthusiasm helped me.
I found it difficult to ‘Wind Down’ nervous system activation because I held so much fear in my body. There wasn’t any inclusion of somatics or polyvagal theory in this programme which would’ve really helped me at the time.
The ‘STOP’ technique I eventually found to be a bit forceful. I’ve come to realise my system didn’t like this which was more down to the fact I was probably saying it with some fear. This is easily altered, you could use the word ‘thank you’ instead, the most important thing is the pattern interrupt and feeling compassion and a softness in your system.
I did a lot of perfectionism at first, worrying I was doing it right. This hindered me at first and I did actually get some PEM in the beginning because of this.
How it improved my symptoms
Within 3 weeks of starting the REWIRE technique, I no longer had light or noise sensitivity and I was able to stop using my eye mask or needing to have the curtains closed.
After I released the perfectionism a couple of months into the videos, I very quickly began going outside in my wheelchair using the brain training technique. My partner would lift me from my bed into my wheelchair outside or the car. I went outside 3 days in a row to the park after not leaving my bedroom for over 2 years. A few days later, I made it to my best friend's wedding just for her ceremony (there were a lot of tears!) I did all this without any PEM.
I began going out every week in my wheelchair, I was able to shower and dry my own hair, I could have more social visits, including going out and seeing people not just at home. I was able to sit up in another room on the sofa, do activities like colouring and lots of reading, and walk around between the rooms upstairs more. This was a huge improvement but I could only get myself to this point, which I believe is due to the level of fear I still had.
Summary
ANS rewire helped me in changing my mindset and gave me faith in CFS as nervous system dysregulation.
It changed my belief that it wasn’t about managing energy and pacing until my body recovered magically, it wasn’t about managing or maintaining and just being completely a prisoner to when my body decided it was ready to recover.
It helped me understand how fear and focus was perpetuating symptoms.
It allowed me to dream again and think about a future and feel excitement for a future. It introduced me to brain retraining and the rewire process (STOP) so that I could begin rewiring my thoughts. I used the technique A LOT and still do sometimes with negative or fear-based thoughts.
For me, the missed step was a real embodiment of safety and somatic work as well as deeper trauma work. I wasn’t able to fully rewire my fear which meant I plateaued.
Mickel Therapy review
The nitty gritty stuff (logistics)
I met with a Mickel therapist online via video call every week to begin with whilst I was learning and understanding the approach. We then moved sessions to fortnightly and then every 3 weeks.
There were little aspects of homework from each session.
Mickel therapy is all about the mindbody connection and learning how our emotions and unmet needs are showing themselves in symptoms. In essence, it addresses nervous system dysregulation, but with a slightly different approach than the brain training programmes I’ve experienced.
The aspects I liked
It taught me about my needs and began to connect me with myself again, what brought me joy, what I wanted to do, it opened up my life.
It taught me to think about my needs in relation to other people, how I felt and what my needs and wants were in my relationships. I also explored boundaries and how to stand up for myself.
It brought my focus to present day situations and how I was behaving and responding in ways that were or weren’t serving me.
It brought to light my emotions and brought awareness to how I was actually feeling and what emotions were there to process.
It gave me confidence and hope.
It taught me to balance what I was doing and how to think about my needs and ensure all of them were being met in what I filled my days with - through connection, fun, creativity, mental challenge.
The approach really resonated with where I was in my life - I felt disconnected from myself, my needs, my desires, my opinions, my creativity - in essence, disconnected from my true self.
The 1:1 approach, having someone you could directly speak with based on what you were specifically experiencing. The advice was tailored to your needs, your life in the same way that talk therapy would be. This felt really supportive.
How it felt
It felt like freedom. It allowed me to completely disconnect from the pacing aspect of recovery I’d been held to for years and years.
It was very exploratory, I really felt like I explored who I was and what I wanted in life.
It allowed me to move further past fear. It felt like someone gave me permission to go and live my life.
Something just clicked with it and, in combination with brain training, it catapulted my recovery. I’m not sure this would have happened without having done ANS Rewire first.
A key thing it addressed was boredom, which was obviously very present in my life being fully bedbound. Understanding how this was affecting the body allowed me to move away from the dysregulating effect of boredom.
It still feels a bit like magic how this worked for me so quickly! When I look at it from a nervous system perspective, without fully realising it at the time, I was mixing up my days in a way that was regulating my nervous system. Learning to express myself more, to express my needs and connect with my true self meant my inner child felt more heard and brought a sense of safety to my nervous system. It also allowed me to calm down the fear response.
How it improved my symptoms
Within 3 weeks of starting it (combined with the brain training from ANS Rewire), I walked down the stairs for the first time in 2 years.
Once I was downstairs, the world was my oyster! I quickly started doing lots more little tasks around the house - making a cup of tea, a bit of washing up, eating downstairs (and not in my bed!!).
It enabled me to stop pacing in the traditional sense. This does NOT mean I stopped resting when I needed to but it took me away from the pattern of activity/lie-down full rest/activity/lie-down full rest which I was very rigidly stuck in (with a lot of fear).
I began spending more time downstairs, more time outside, more time socially. The levels of fatigue really improved and I stopped experiencing PEM.
I began walking more and, within 3 months, stopped using my wheelchair.
Summary
Mickel taught me all about the mindbody connection. Through its approach, it helped me to explore life, who I was, what I enjoyed - I really connected with my true self. My world expanded.
It taught me about my needs and about boundaries and how I could respond differently in situations in a way that I stood up for myself.
It made me look at my emotions in a different way and how to read symptoms.
It distracted me from the fear-based negative thought patterns my brain was stuck in by mixing up my pattern of activity and routines.
It helped me with the fear response that I struggled with a lot.
I believe it was the combination of this and brain training that really catapulted my recovery.
Curable Health app review
The nitty gritty stuff (logistics)
A phone-based app that focuses on chronic pain but can also be applied to other chronic symptoms, like fatigue. It’s another mindbody approach and sees symptoms from the theory of TMS (Tension Myositis Syndrome or The MindBody Syndrome), based on John Sarno’s work.
Encompasses brain training, education, writing and journaling exercises, and meditations and visualisations.
You go completely at your own pace and engage with the app as much or as little as you wish.
There’s a panic button on the app for when you’re struggling with symptoms, which offers some supportive breathing patterns and reminders for help with this.
A relatively cheap option to other recovery programmes.
They offer a group programme option (more expensive) to offer the support and encouragement of a personal, small-group container with other self-healers.
The aspects I liked
There’s a really supportive Facebook group which encourages positivity and support. I learnt a lot through other people’s questions/answers. There’s also a podcast called Like Mind, Like Body, with lots of motivating recovery stories, advice and education.
Engaging through the app was really intuitive. You choose which activities you do and you can focus on the ones that resonate with you and your situation.
The writing exercises were particularly helpful in inviting you to look at the causes of stress in your life and what traumatic experiences you may have gone through. It taught me the impact of this in chronic symptoms.
It taught me how to connect with my body and look at underlying emotions. There is a somatic element to the work, which you can then process through the journaling exercises. The solo nature of this wouldn’t be for everyone, especially if you have been through deep trauma and would benefit from some trauma-informed support (there are TMS therapists available for this).
This approach is being backed by research in America and there are a group of pain neuroscientists and psychologists backing this work - Howard Schubiner and Alan Gordon are two in particular. This gave me a lot of confidence and faith in the work.
How it felt
This was the part of my recovery that encouraged me to focus on past trauma and unprocessed emotions. It made me look at coping mechanisms like perfectionism and people-pleasing. It’s the painful but very necessary aspect of healing.
It was difficult at times and there were lots of tears as I connected with younger parts of me who went through painful emotions, but it felt empowering to have tools to do this. Journaling helped me A LOT (I’ve created some Journaling Guides available on my shop for help with this).
The meditations and visualisations were varied so it felt good to have the one’s I really connected with available to me whenever I needed them, the safe place visualisation helped me regulate my nervous system a lot.
It felt really good to have something to dip in and out of. It was really exploratory and allowed me to understand myself a lot more, connecting the dots with all the points in my life that relapses had showed up and symptoms had worsened.
It felt like being a detective of my own life, it was a lot of work, but something that is SO worth it isn’t going to be easy.
How it improved my symptoms
The meditations and visualisations helped me regulate my nervous system, I used them to calm down nervous system activation when I needed it.
I was doing this work in conjunction with ANS Rewire and Mickel Therapy so it’s hard to separate out what was doing what! The brain training in it wasn’t enough of a technique on its own for me.
It mostly helped me to understand my emotions and understand how illness had been triggered at various points in my life.
Summary
A really intuitive, accessible app that empowers you with tools to understand your symptoms, your illness and your emotions.
This mainly helped me with understanding stress and past trauma in my life.
I deepened my understanding and education a lot around nervous system dysregulation and the mindbody connection.
I used this as supplementary support to ANS Rewire and Mickel Therapy. If you deal with chronic pain in particular, I think this could be a really helpful tool for you.
CFS School review*
*I engaged with this programme AFTER my recovery to deepen my healing. I felt like I hadn’t fully dealt with the fear, especially as a felt sense in my body. I wanted to deepen the somatic element further to really embody a sense of safety.
The nitty gritty stuff (logistics)
An online programme with various levels of study options from Self-Study to a Live Group option with the programme founders. I did the Self-Study option so I can only comment on that version.
There’s 12 modules released weekly, including SPACE, their brain retraining technique, polyvagal theory and somatic work, trauma resolution tools and inner child work, and their future manifestation practice.
There’s a Facebook group for support for self-healers doing the Self-Study option.
Support from the founders is available in 1:1s at an extra cost, as well as, support from the CFS School assistants who’re recovered graduates who have been through the programme themselves.
The aspects I liked
I feel the programme covers most of the aspects I learned about through the 3 above programmes all in one place with the added important element of somatic work.
Demos of all the techniques/practices.
The live recorded coaching calls were really helpful to listen to. I felt support through this and learnt more through the questions that were asked.
Although the modules are released weekly, because I was doing the Self-Study option, I could go at my own pace and engage as I wanted to.
The visualisations as part of the SPACE technique help you to embody the state shift more than the REWIRE technique I did with ANS Rewire. Embodiment is really important.
The Parts Work is an important aspect, it allowed me to further connect with the things I had learnt through my recovery using the above 3 programmes, especially how to soothe parts showing up in my body.
I loved the focus on true self as this is something that’s been elemental in my own recovery. However, without my work through Mickel Therapy, I’m not sure I would’ve fully been able to connect with a true self in a strong enough way with how it was presented in the programme.
I really enjoyed their manifestation practice and focus on your future. The mindset shift to focus on your true self and how you want to live your life was really inspiring and motivational, like I felt from ANS Rewire.
How it felt
I really feel like this programme encompasses all the key aspects required for recovery. It brought together most of the things I learned from doing various programmes. It’s very insightful and there’s a lot of wisdom in the programme.
It felt supportive and inclusive being able to listen to the recorded live calls.
I felt like there were a couple of missing gaps in the information presented as part of the Self-Study option. Sometimes, the recorded live calls referenced things that had been discussed in their private forum that you don’t have access to. There were a few times I had to discern for myself what it meant which was a bit frustrating.
How it improved my symptoms
As I’d already recovered when I did the programme, I was engaging with it in a slightly different way and there weren’t the same symptoms I was trying to heal, i.e. fatigue, PEM, light sensitivity, brain fog etc aren’t present in my life anymore.
For me, the main thing I did the programme for was to deepen the sense of safety in my body. After 18 years of chronic illness, and I also believe because of the quickness of my recovery, I still have fear to work on, particularly in my body. I’ve been able to access that more with these tools and am continuing to work on that.
I’ve also been able to deepen my understanding of coping mechanisms, like perfectionism, and engage in deeper healing with my inner child as a result of the work.
Summary
A really comprehensive programme which covers all the aspects of healing with some really knowledgeable founders who have been through the work themselves.
I was engaging with the programme from a slightly different perspective as I had already recovered but it has still benefitted me massively, especially in terms of the somatic work, connecting more deeply with my body and with my inner child.
I feel the Self-Study option is really viable, especially if the more expensive live option isn’t available to you.
Living out my dream on The Beach in Thailand (basically saw Leo).
Overall Summary
As I’m sure you can tell from all of the above, the approach I took to my own healing was consistent with the mindbody approach. My belief is that ME/CFS (and many other illnesses) is a mindbody illness that can be healed. This DOES NOT mean it’s all in your head, that it’s your fault or that you are to blame.
The important aspects of recovery for me from the various programmes were:
Rewiring the brain and unhelpful thought patterns
Reconnecting with my true self
Developing a compassionate relationship with myself where I have nurtured self-love, self-forgiveness and self-belief
Learning about my needs, particularly in relation to others, and about setting boundaries
Understanding how to shift the state of my nervous system
Alleviating boredom and mixing up activities to distract my brain from doing it’s unhelpful negative patterns
Having awareness of and unlearning coping mechanisms, like perfectionism and people-pleasing
Bringing a felt sense of safety to the body
Understanding and processing my emotions
Understanding past childhood trauma and how this shows up in the present day
Connecting to and reparenting my younger wounded parts
Understanding the ways illness has served me, i.e. it allowed me to stay small, hidden, it gave a reason for people to save me as I identified with a victim consciousness
Cultivating my capable, powerful, strong sense of self that can be the adult in the driving seat of my life (rather than the scared, sad, shamed, victimised child)
Viewing life and my future with a different mindset
We’re all at different points along our journeys. Just as we experience these illnesses in different ways with different symptoms, so do we experience healing differently. I wrote more about this in a blog post on Why healing looks different for everyone.
I feel my breadth of understanding from doing various different programmes has benefitted me. However, when I was recovering, CFS School didn’t exist and I do feel it encompasses most of the aspects I learned separately. Although I haven’t done it myself, I understand Primal Trust encompasses a lot of it as well. The concept of cultivating and growing your sense of adult self (Adult Main Personality in Primal Trust) is hugely important.
Where do you go from here?
When it comes to choosing a recovery programme, my advice would be to feel into your body.
What does your intuition tell you? What do you feel towards the programme? Do you have an inkling that it’s the right thing for you? If so, I would do it. Of course you will feel scared, uncertain, apprehensive, doubtful. I invite you to question: What would your life be like if you didn’t make a choice? What could your life be like if you did?
There’s so many options out there, which in itself is something that inspires hope, but we all resonate with things in different ways, which is especially dependent on where you are in your journey and what you feel you need. We’ll also resonate with different people so consider that in your choosing and which programme leader you feel a connection to.
What are the gaps in your healing? What do you feel you need?
When I was in the depths of my own healing, I felt very isolated which is why I’m now doing the work of Health Recovery Coaching. I don’t want you to go through it alone and, with all the knowledge and experience I’ve gained along the way, I want to support you wherever you might feel stuck or in need of support with your own journey. If you want to find more about this, read about my coaching services or feel free to contact me.
If you have any questions about any of the above, please leave them in the comments section below and I’ll answer them there so that it’s visible to anyone else. I’d love to build a supportive community in this space so please help me to do that here.
If you take anything away from this, please know that recovery is possible. I am proof of that and, if it can happen for me, it can happen for you. Healing happens, it may take work, but it is SO worth it to start living a rich, fulfilling life, connected to your true self. You are worthy of that, you are capable of that and you are meant for that.
Sending much love and healing,
Suzi xx
P.S. For more blog posts on healing, you might like, Why healing chronic illness looks different for everyone, or, 21 things to reconnect with my true self.
