I had chronic fatigue syndrome (ME/CFS) for 3 years. Before ME/CFS, I was in reasonably good shape; most of my favorite things to do were active, like hiking and volleyball. I was most of the way through my PhD in Physics in January 2022 when I contracted Epstein-Barr virus and mono. The fatigue just never left, and when I exerted myself too much, I would crash for weeks. The fear of the crash was almost as bad as the crashes themselves, but not quite. During my worst crashes, I would be aware of people talking around me, and I just couldn’t process anything they said. It was terrifying, isolating, and soul-crushing. That brain fog, fatigue, and post-exertional malaise were the worst of my symptoms, but I also had IBS and mild headaches.
Fortunately for me, my CFS was mild (if you’re not familiar with ME/CFS, that tells you a little about how bad moderate and severe cases can get). I was able to do things for a couple of hours a day, so I managed to eventually finish my dissertation (link here, if you’re interested) and graduate. At that point, my focus shifted to my health (and however much part-time care of my baby daughter I could manage). I had a few advantages in this pursuit. In addition to a solid foundation of family support, I had a close friend who had already tried more established medical routes and found no solutions, even while working with a specialist. That helped eliminate that particular path for me early on. The second advantage was my training in scientific research, which helped me approach recovery strategies pragmatically. My training gave me an appreciation for not only all we know in science, but also for how much we still don't know and have yet to learn. In research, you live in a space of "maybe this will work, maybe it won't; let's test it out." Therefore, I approached my recovery with the same attitude I would a research project, being realistic about what is known and not known, but believing that I could learn something. I was not willing to wait for peer-reviewed studies to come out that guaranteed a solution, I would carefully test various methods. However, just as the medical establishment could claim no solution (as of the time of this writing), many different sources claimed to be the solution, and so I wanted to select what seemed to have the most promise with the least risk to my well-being. I started about as adjacent to traditional medicine as you can get, working with a functional medicine doctor. We did a bunch of tests, found out that my cortisol levels were low and that I had some parasitic gut infections (bacterial and fungal). Taking low-dosage hydrocortisone seemed to help, and treating the gut infections helped at first, but I continued to experience crashes. It felt like, if the gut infection was the problem and we treated it, why did I crash again? Am I just going to keep chasing every peripheral problem forever? At that point, I started looking for other approaches and ways people had recovered, and I discovered Raelan Agle’s YouTube channel where I heard about brain retraining for the first time.
I was skeptical, but enough people mentioned it as critical to their recovery for me to investigate further. After looking into it, it didn’t seem too preposterous; it made sense that learning how to better manage and reduce stress could be helpful. It seemed like it could give me some good tools for the personal growth I wanted anyway, and if it also had a chance of helping me recover, then it was worth a shot.
This isn’t the case for everyone, but I noticed an almost immediate impact. The brain retraining exercises were effective at helping me let go of stress and relax. And as I continued practicing, I started to notice greater mental clarity and less fatigue. It was a slow process, but I started to hit milestones, doing things I hadn’t been able to do in years, like moderate hikes. Figuring out how to pace myself with my expanding capacity was tricky, but I tried to take it a step at a time. Eventually, I was able to play competitive volleyball for hours at a time, and backpack in the mountains. At that point, I couldn’t honestly say I had ME/CFS anymore; I had no post-exertional malaise after these activities, no headaches or brain fog, and even my IBS was mostly gone. I feel immensely grateful for my recovery.
For those who recover, the time it takes varies widely. From starting brain retraining to the time I considered myself fully recovered, it was about six months. According to my knowledge, that’s on the faster side, though definitely not unheard of. Each person’s experience with this illness is different, and so it's rarely productive to expect a certain timeline.
I want to note that I tried a lot of different things before trying brain retraining, with varying degrees of helpfulness, including the things I mentioned above. Other things I tried included improving my diet (e.g., less processed foods, dairy, and simple carbs like sugar, and more whole grains and vegetables), which was helpful, and taking a wide variety of supplements, which had little noticeable effect. I never tried brain retraining without doing these things first, so I can’t say with total confidence whether they were necessary to my recovery or not. What I know is that brain retraining was the turning point for me and the impetus for my full recovery.
It’s because of this and reports from others who recovered that I made this site. I hope it helps you find your path to improved health, and even recovery. When that day comes for you, I would love to hear about it!