This is an old post and thread, but I also read through it with interest and appreciated your relating your story.

I found it through finding it very odd that I couldn't Google up negatives and bad issues with neurofeedback. I was looking at Heart Math and the emWave & PTSD. Google brought up a few scattered posts which referenced neurofeedback & PTSD.

I'm sorry about what you have gone through, and I hope you are well.

...

It makes me sad that medical treatments and thoughts are often presented from one, homogenous perspective, and that this is accepted as some sort of norm. I tend to think about things that might make us reliant upon artificially induced states as definitely containing inherent risk, even if it is rare, or risk and negative effects (perhaps long-term, rather than acute ones) haven't been reported or seen yet.

I also worry about neurofeedback being based upon "correcting"/"optimizing" toward what's normative or common, which isn't at all necessarily optimal, but potentially rather 'bleh' or mediocre.

Others - a very few - have expressed this concern, too.

It's a similar concern as that of how health systems currently determine what is "in range" for specific biomarkers.

If you have a population that's skewed towards being quite unhealthy in certain ways, and you equate "normative" with "in range" and equate that with "fine and healthy" (as far too often happens), there's no actual objective standard or understanding in the goals that you try to normalize others towards.

I certainly worry about normalizing people towards mediocre or mal-adaptive brain patterns, just because those brain patterns happen to be 'normative'.

It is frustrating as someone who cares deeply about biology, the world, and human health to see "absence of negative effects that we have been made aware of/perceived, in our specific and limited circumstances" equated to "There are no negative effects in existence or possible."

All data is only guaranteed accurate specific to all of the myriad specific details of the situation under which it was gathered, and the extrapolation of statements out to conclusions about more general situations is never guaranteed to be accurate.

Given that people are not capable of observing all possible relevant factors, our data and studies tend only to monitor the factors we think to be, and it rarely communicates that blind spot or mis-step in lab work, or the difference in testing environment from one similar test to the next, that the person disseminating the conclusion didn't think of as relevant.

The way that human societies interpret data, not just in health and medicine but with everything we perceive and conclude about reality, is constantly evolving and imperfect in varying degrees.

And by definition, some portion of those imperfections and mistakes will occur in areas that we don't see at present.

...that really seems self-evident, but it still seems kosher culturally to sell ideas (particularly those related to medicine or human health) with a blind confidence and certainty, rather than encouraging multi-faceted conversation and understanding, inclusive of the existence of unseen, unconceived of risks.

I'm not sure why it seems especially common for blind confidence and certainty to occur repeatedly with new, promising developments.

(Perhaps because at points in time where there hasn't been a lot of bandying of potential costs and potential benefits back and forth, there is less nuanced discussion, and it's easier to ignore the existence of unexplored issues before exploration makes them seem more concrete?)

This is all--in case it's somehow unclear--not at all to ignore the complexities and cost/benefit analysis in undertaking something with [x]% of uncertainty vs. the costs and benefits of continuing one's life as is.

At times - many times, perhaps - it may be worth it to leap into noticeable unknowns given that cost/benefit, and the cost/benefit of how one's life might go otherwise.

Nor to ignore the potentially previously unavailable benefits of new developments.

Rather, what I find frustrating is that there is not enough nuanced discussion of costs and benefits, and a reluctance toward calling a spade a spade (or calling uncertainty uncertainty in this case), and a lot of ... black-and-white thinking underlying a lot of how options in human health and biology are communicated.

...that's actually somewhat ironic, here, in a field connected to psychology.

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I'd been wondering since the beginnings of neurofeedback becoming a "thing" used to mediate one's psychology and brain function whether the knowledge or skill exists to reverse an unwanted effect of neurofeedback if someone engaging in it decides they are uncomfortable or dislike the result.

I hope more research emerges exploring or documenting the potential risks/negatives of neurofeedback in various situations, and discussing/exploring ways to mitigate or prepare for them. More nuanced stories and personal experiences, too; it's very difficult to communicate the details of individual experience through the common generalized descriptions of treatments.


...

Thank you again for your post.

It was a really good reminder to this reader.

It's an art that I'm having to learn in my own health journey not to assume or jump on a perceived opportunity without honestly (and as thoroughly as possible given cost/benefit) personally considering a situation and spending at least a bit of time researching after I've considered where the costs/risks are, and what to search for. And being honest with myself about the degree to which I don't have the time, mental clarity, skill, resource, or data -- given cost/benefit or availability -- to, and the degree to which I'm uncertain in choosing and making decisions.

We all always act and choose in uncertainty anyway, or otherwise will get stuck not living or choosing (although that's also a choice itself), but earnestly doing it with eyes open is much closer to 'informed consent' than anything else I've found.

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I hope that things are in some way better for you now, three years later.

If you still keep up with this thread and are comfortable answering, how are you doing? I'm interested.

I also have this thought percolating through my head of wondering whether new, positive experiences or other things known to normalize or 'reset' disordered brain function or major hormonal-neurological pathways, or generate new neural patterns/pathways, might help.

Either way, I genuinely hope you're well.

I've struggled through a lot of severe anxiety (in a number of areas and forms) and strange symptoms myself and watched the severe impediments on every aspect of my life compared to periods when far less bound by that.

I can't imagine what it must be like to feel like that as something imposed upon you biologically/neurologically, without even really understanding what went wrong, or what the cause was, and without any initial direction for healing or remedying it. ...especially given that you were doing quite well, and fairly satisfied with your life and day-to-day functioning beforehand.

Your posts really struck me.

Their relative rarity and one-offness of bad experiences with neurofeedback being talked about in 2015, other than yours and the original poster's, too.

I felt a bit compelled to respond.

Well wishes,

-DuguXin