Hi! Okay, this is a lot, so please take care and pace yourself as needed.
Here's an overview of what brain retraining is and how it works:
https://neurolaunch.com/brain-retraining/
Oh, one more caveat: I know CBT has been used harmfully towards people with ME, and I totally get any resistance to the concept of it being involved here. But the people who created these brain retraining programs did take *some* ideas from CBT and adapt them to use them in their programs, in ways that are actually helpful. So, just try not to focus on that if you find it triggering--it's not really important. ;-) Just focus on what YOU find helpful, and do that.
By helpful, I mean, does it make you feel relaxed and comfortable? Do you feel supported and cared for? Those are the kinds of mental states we want to encourage.
So, the basis of all these programs is the idea of neuroplasticity--the brain's ability to change. Trying to change your brain on purpose is called self-directed neuroplasticity, and that means we are trying to fix the way ME has (theoretically) messed up our brains and made them really bad at regulating our bodies: insomnia, light and noise sensitivity, headaches, flu symptoms, not being able to manufacture energy even with constant rest, feeling sicker when something stressful happens, poor immunity (like persistent viral infections), etc.
You don't have to believe that any of these symptoms are caused by a brain impairment. I didn't!! If it's going to work for you, it will just work by *consistently* (and gently) applying whatever program you develop or follow. It takes a lot of repetition for the brain to learn a new way of functioning. But it's not totally new! Most of us had a time in our lives when we were pretty healthy, so it's really just reminding our brains how to get back to that.
Here is a Cleveland clinic overview of EFT Tapping.
https://health.clevelandclinic.org/eft-tapping
The interesting thing about tapping is that a lot of studies have been done about it! I haven't read them--I still don't really have the brain power for reading studies.
Self-havening is another method for calming down your nervous system. This video shows you how. I personally absolutely love this video and all the affirmations, and I usually find affirmations annoying! Haha so this may or may not be your cup of tea, but it will teach you the (very simple!) technique anyway.
https://www.dr-eva.com/affirmational-havening
Here is a very simple overview of polyvagal theory:
https://sacredpathholistictherapy.com/what-the-polyvagal-theory-is-and-how-it-works/
In the case of ME, the main "trauma" may be whatever caused the brain malfunction in the first place, in my case a very bad flu that kept relapsing until I ended up with ME. So it doesn't have to be emotional trauma. (But it can be! And it can be a collection of different kinds of traumas, like now I definitely can see how being bedbound for decades had also been pretty traumatic for me, even though I adapted well...)
The parts work/Internal Family Systems aspect of all of this is what I would consider more "advanced" brain retraining. I would suggest revisiting that later, after maybe a year or so? But here is an overview:
https://www.psychologytoday.com/us/...how-parts-work-helps-us-get-to-know-ourselves
So, I know this is a lot to take in, and may seem vague. But I hope it gives you somewhere to start.
You can look back at my first post and remind yourself what the main parts are of most programs: happy bubble, staying calm and relaxed, self care (emotional and physical), tracking your progress with doing the program (like progress means you worked on it on a given day, not necessarily that you have improvements. you change your behaviour first, and then your brain changes over more time), not pushing yourself too hard, noticing unpleasant emotional states and bringing yourself back to your happy bubble as well as you can. Gentleness, self compassion! Self encouragement, and encouragement from anyone you think might support you...like that!
Other potential resources:
I have heard, but do not know for sure, that some libraries have the instructional DVDs from DNRS or Gupta, so that may be another free resource, if you have access to your library. Mine has an online catalogue now, and I think there are volunteers who can bring materials to housebound people? Or maybe you know someone who would be willing to make a library run for you.
Oh! And if you are into Facebook, I think there are also Facebook groups on brain retaining (in general, no specific program), where you can join for free and discuss these topics with people who are also interested in them! That might be a good resource. If you're interested, let me know and I will ask around to see if I can find one. I believe on those kinds of groups sometimes people give away DVDs that they don't need anymore.
Good luck! It's fine to ask more questions. I'm sorry my posts are so long, but there is just so much to cover.
Sending you my best wishes!
, but I know a lot of people besides me who have been helped.
