Brain retraining Patient Views

Brain retraining did help with my fragrance sensitivity, not so much with other things. But the impact on that was profound. As in it pretty much disappeared after a week and it's something I've had an issue with for over 20 years.

I had a similar recovery (mostly) story to yours. Recognized that it was my brain that really took the hit. The rest of my body did its thing to heal everything else, but my brain desperately needed to be retrained from the ground up. Some days are more difficult than others, but ever since I recognized that my brain was the issue I started to gradually get better. I'm different now because of it, but I believe it changed me for the better honestly.

From my own experience, I think "brain retraining" is only one piece of the puzzle. It can help with some symptoms and with your subjective perception of the stimuli AND your symptoms, but it's def. not a cure.

I’m finally in a LC ME/CFS clinic with specialist docs and they’re talking about brain retraining. Too early for me to weigh in, but the fact that it’s part of a recovery protocol says something.

I can speak from experience, as I have done a brain retaining program, as recommended by my specialist. While it was no cure, it did really help my mindset and coping. This is in tandem with medications, nervous system regulation, and pacing. For me, it was one pillar in many that moved me from 5% to 25%.

I’ve never seen a double-blinded placebo controlled trial that showed that brain ‘retraining’ worked. I’ve seen many that have shown the opposite. I’d also add that several brain retraining programs and health coaches only allow certain people to take their programmes, so i strongly suspect pre-selection bias. On the other hand chronic illness comes with its own set of challenges and a highly stressed-out nervous system. Personally, working on improving vagal tone has been an important ingredient for improvement.

With so many options for brain retraining out there - does anyone have personal experience with a successful brain retraining program for fatigue and more importantly brain dysfunction/fog? I feel disconnected from reality mentally and find it difficult to read. TIA

I worked with a physiotherapist who did brain retraining and it made me a lot worse. I still like the approach of frequent meditations and trying to stay positive but I don’t do the rest anymore.

Curious if you noticed the flag added to your question. Brain retraining has been a really divisive topic. It’s seemed a small portion of people have found some improvement (then seem to get very vocal about it) and the rest of us have not or have found it to be harmful for various reasons. I tried something locally here in Chicago years ago and it was largely unhelpful.

He states that he essentially used brain retraining to recover by teaching his brain that activities that it viewed as threatening were not actually harmful. A quick search about that shows that many people are claiming that they also recovered using brain retraining by focusing on being well rather than on being sick, and that conditions like Long Covid are literally functional neurological disorders. I don’t know what to think about all that.