My recovery from ME/CFS - part two: Writings on the wall

My PI wall - at least some of it will make sense to you after you’ve read this post.

After successfully establishing that my condition, as severe as it was, was most likely psychosomatic and therefore at least theoretically reversible, I started my work. What that entailed can be established from the photo - over the course of the next few weeks and in short sessions, often hunched over on the floor because sitting upright was more exhausting, I started to gather information from different sources. Raelan Agle‘s YouTube channel and the interviews with people who have recovered were obviously only one piece of the puzzle and I certainly didn‘t resonate with all that‘s being said there by every single person, but it was a powerful starting point. I wrote little notes of phrases, concepts and therapy approaches that seemed promising and then went to the source to figure out what they were about. Before I share a non-comprehensive list of experts and what I took away from them, here’s a short description of the underlying idea that all of them share. Once again, this is how I understand the illness now - it’s not medical advice (even though it’s being supported by medical professionals) or denial of sickness through structural/bio-chemical influences.

ME/CFS, like many other chronic conditions, is a cluster of symptoms that arise because of nervous system dysregulation. As I learned in my psychology degree, the nervous system consists of different parts, most notably the Central Nervous System with the brain and the spinal cord and the Peripheral Nervous System which contains all other nerves in our body. The Peripheral Nervous System is in charge of pretty much everything our body is doing and contains, amongst others, the Sympathetic and the Parasympathetic Nervous System. The former activates what we know as fight-or-flight, the latter puts us into a rest-and-digest state. (It’s more complex than that but for our purpose, this will do.)

From trauma work we also know that prolonged states of fight-or-flight, which cost a lot of energy to maintain, can result in the body ‘shutting down’ in various forms. This is called a ‘freeze’ response in most mind-body contexts - one of the possible responses to a threat in the world. We can run away, fight back, try to appease the attacker (fawn) or - freeze and pretend we’re dead. The idea behind nervous system dysregulation is that due to extended periods of fight-or-flight, which the body is not adapted to, the nervous system puts us into freeze to conserve energy. It will become hypervigilant for potential threats and start seeing benign occurrences as danger, to the point that things like talking to someone or sitting upright become ‘unsafe’. Because the Autonomous Nervous System has no way of communicating with our consciousness directly, these dangers will show up as symptoms which eventually turn chronic (see below). And since the Autonomic Nervous System controls everything we have no active control over in our body, symptoms can be anything - and as severe as things like POTS (orthostatic intolerance) or cognitive impairment. I have watched countless interviews of people who had been bedbound with Long Covid and completely recovered.

That’s the general gist of it. Most of these things are being discussed in the field of psychotherapy and not medicine - which is not surprising, given that major breakthroughs like Pain Reprocessing Therapy (again, see below) barely make it into mainstream pain medicine yet, although the Boulder Back Pain Study is widely respected and showed immense success with mind-body approaches in chronic back pain. Given how prevalent pain conditions are, doctors are taught very little about them in formal training.

But luckily, there are a few well-trained people out there who dedicate their work to mind-body conditions, so here’s a little list of some of my most influential sources for my own recovery journey. They can be a great starting point for further investigation. It doesn’t necessarily mean that I stand behind every single thing they have ever said but I learned a great deal from them.

• Alan Gordon/Pain Reprocessing Therapy (as detailed in ‘The Way Out’)
  Main Takeaway: Chronic pain without structural cause (i.e. neuroplastic pain) is kept alive through the fear-pain-cycle - we become afraid of our symptoms and thereby signal the nervous system that symptoms are in fact dangerous, which creates a vicious cycle.

• Dr. Howard Schubiner
  Main Takeaway: Unresolved ACEs (adverse childhood experiences) heavily influence the development of chronic conditions and trauma/emotional work can resolve those conditions.

• The Curable app
  Main Takeaway: Developed by neuroscientists, doctors and other experts, this is a comprehensive approach to chronic pain conditions (and explicitly also for ME/CFS patients). I found basically every other approach I mentioned here integrated into it so this is the number one recommendation. Plus, you can try it for free for several weeks and if you can’t afford it later, they will give you a huge discount. The idea is this: You are not responsible for developing your chronic pain/ME/CFS. But you can get out of it by yourself if you have the right tools.

• Nicole Sachs/Journalspeak (as detailed in ‘Mind Your Body’)
  Main Takeaway: Bottled-up emotions, often dating back to childhood, play a huge role in nervous-system dysregulation. Techniques like expressive writing or journalspeak can actively release and explore these emotions. It certainly works for me.

• Tanner Murtagh/Pain Psychotherapy
  Main Takeaway: Signals of safety for your body are key in all stages of recovery to get your nervous system out of prolongued fight-or-flight and freeze responses. That being said, safety doesn’t mean you have to be calm all the time. Challenging experiences and emotions are absolutely part of that - the point is that you and your nervous system have to learn to trust that you can handle them.

With this background, which I gradually built over a few weeks, I started working on my recovery. Again, I was still at my worst, so mostly in my recliner chair. I usually watched one recovery interview per day to motivate me, parts of it often with my eyes closed when it became too exhausting. Other than that, I still spent a lot of time just sitting in the semi-dark and watching time pass because my brain burn (TM) was too strong. I texted with some of my friends in small doses sometimes and ate with my parents who provided my meals. That was pretty much my life.

But mentally, I was finally starting to see some hope through the things I was learning. Working with the Curable app changed things profoundly and I tried to do one exercise per day, along with three sessions of therapeutic humming, which I’ve found very helpful in calming my nervous system and stopping thought spirals. It also doubles as a breathing exercise (long exhales) and is used in psychotherapy in various contexts as well.

Depending on my energy level, I also did an additional meditation or set time aside to train my brain in the techniques I learned on the app. The rest of my time I tried to dedicate on integrating as much joy into my life as possible, despite the symptoms. Depression is a natural consequence of severe illness so on top of your physical symptoms, you also deal with that. It was therefore vital I did as many things as I safely could to make me feel good. Looking at an old coffee-table book for a few minutes. Smelling good food. Short cat videos, if all else failed. (The one time social media actually made sense.) Music, social activities and gaming were still not possible so I stuck with the little I had.

In addition to that, I reminded myself of the following things whenever I could - because no matter how much sense all of the above makes when you hear it, the severity of your symptoms will soon convince you that something must indeed be very broken in your body for you to feel this way. So here are my mantras:

If this is mind-body, then my symptoms don‘t cause permanent damage.

A huge relief was knowing that even though it felt like my head was burning up and I was losing all my cognitive function, this was not brain damage (which got confirmed in my MRI which was absolutely fine). And even if some lab findings are abnormal, well, symptoms are in the body so they will present in a certain bio-chemical way. But knowing what I now knew about the power of the nervous system, I also knew that these things were most likely reversible. That also meant:

I don‘t have to fear my symptoms.

Of course they are horrible and I don‘t want them. But fearing them sends a signal of danger to my nervous system and will label them, as well as any activity I‘m doing while dreading symptoms, as ‘unsafe’. That doesn‘t mean that not fearing them instantly cured me. But over time it reduced symptoms and PEM and increased range of motion and activity. A very helpful practice I’ve used almost daily is Somatic Tracking.

There is a reason why my nervous system is acting this way.

The nervous system is dysregulated because of ongoing stress. This can be all sorts of stress, and as I learned along the way, I was practically ticking all the boxes. Childhood and youth adverse experiences (aka trauma), type A personality (‘go, go, go’ mentality, perfectionist), recent major life change, past infections, history of psychosomatic illness that had been unresolved, neurodiversity, etc. This was a long list and it didn‘t mean I had to resolve all of that to make progress, but I had to acknowledge my issues and struggles honestly. It‘s been a long road since but I did see improvement almost immediately. As you can see in the image above, sometimes there were big jumps, like with a long reading session all of a sudden. Sometimes that still proved to be too much and I had to backtrack quite a bit. I’ll probably talk more about that in a future post.

If I’m stuck, I’m likely supposed to give my emotions space.

Might sound weird but it‘s true for me and for many, many others people who have recovered. Unresolved emotions are a huge deal in trauma and beyond and the more I started to work on that, the better I got. I often used guided meditations for that purpose or techniques like journalspeak or expressive writing. By now I‘m pretty good at spotting when something is lingering below the surface and I have to address it. And no, it‘s often not just the obvious every day stuff. Lots of trips to your childhood will ensue.

The expectation to recover will not get me anywhere.

Like I said, one of the most frequently used techniques for me is Somatic Tracking which helps you change your relationship to ongoing symptoms. Alan Gordon specifically says, ‘It won‘t work if you expect it to lessen your symptoms‘, although it often does exactly this - but only if you don‘t force it. The reason is simple. If you build pressure, your stressed nervous system is going to react a certain way. Whenever I tried to force recovery or became impatient, it backfired. It‘s going to take as long as it takes. For some, that‘s just weeks. For most, it‘s months. For others, it‘s years. After all, the circumstances are very different for everyone. Some have support, some don‘t. Some already have other healthy habits, some don‘t. I found that I didn’t have to believe at all times that I was on the right track but I had to be open to the idea.

This sucks, but it‘s the biggest chance I am likely ever going to get to resolve my issues.

In 2024, I felt like I was already building a new life when ME/CFS hit, so it seemed deeply unfair that this was all taken from me. But despite it all, I learned to be grateful. Because I was carrying decades of emotional stress, my new life would not have worked out either. So now, rid of all my work and social life, with practically nothing left, I could take the break I needed. Of course we would like to enjoy our breaks with full health and a lush background of active friendships and fun activities. But let‘s be honest - who is going to take a radical break from life if they are not sick? I certainly wouldn’t have.

In those first few weeks, every little thing was showered with gratefulness. I was able to make my own breakfast? Hooray! I could lie in bed in the morning and not feel brain burn? Awesome! And when my symptoms inevitably did come back or make me quit what I was doing, I was trying to thank the body for the message instead of going into panic mode. It takes practice. We grow up in a medical system which often promises immediate results, like with pain killers. (Which never worked for my brain burn, not even the strong ones.) We‘re not used to repeated effort without visible outcome that we have to keep up for days or weeks to see a difference. But that‘s exactly what this work is. Every day, especially on the hard ones, I told myself: trust the process.

I started to track progress instead of symptoms. My stamina and my confidence were so low that initially, one minute of standing upright sometimes felt like a challenge, so I set a timer. Gradually, I got up to three, then five, then seven minutes. One thing that always helped me was knowing that symptoms could appear. The nervous system knew I was probing the waters. But over time, it wasn‘t perceived as dangerous anymore so one minute was considered ‘safe’, and then two minutes, and so forth. I had to do this with pretty much everything in the beginning. Talking to someone. Reading. Gaming. Household. But it worked.

There are different areas of activity in life and not all of them were equally improving, which I now know is very common. Building physical strength was the most important piece for me initially, so I could sit outside more, for instance. Social activities like conversations were much harder to build up and are still the first to crumble when I‘m weaker. I’ve come to accept that.

But I‘m getting ahead of myself. It‘s hard to cut all of this up into individual posts but I don‘t want this to be too long so I‘ll share more next time. As is hopefully clear, I‘m still learning and I‘m not fully recovered yet but I’m so much better already and judging by everyone else‘s story, I have the best chances of making a full recovery. More soon.