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Speaking to a neurofeedback clinician / researcher tomorrow. What questions should I ask?

Jesse2233

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Hey everyone,

I'm speaking with a neurofeedback therapy (NFBT) clinician / researcher who runs a well regarded clinic in Los Angeles.

I'm interested in neurofeedback because I understand it's benefited some with ME/CFS, and that qEEG scans can sometimes pick up characteristic abnormalities in ME/CFS patients. I've seen both positive, neutral and negative results from NFBT reported on PR. Cort also had a story a while back on someone who used NFBT (along with other treatments) to achieve full remission.

My hope is that NFBT can rebalance any limbic / autonomic dysfunction that has occurred and in turn correct downstream hormonal and metabolic aberrations. My more modest hope is that NFBT can ameliorate some of the anxiety and depression I've been experiencing as a result of this condition. I also have some concern that NFBT might cause further systemic dysfunction.

Questions I have so far. Let me know if there's anything else that would be useful.
  1. Given the fluctuating nature of ME/CFS is a single qEEG reliable as an ongoing treatment guide?

  2. Dr Byron Hyde uses SPECT scans to diagnose ME/CFS. His findings show hypoperfusion similar to SPECT scans of children with autism (as seen in the work of Dr. Michael Goldberg).

    Given NFBT's effectiveness in the treatment of autism, might a SPECT scan be helpful to guide treatment? And can the results of a SPECT be compared against those of a qEEG?

  3. Is it possible that abnormalities in my brain are a protective response to a systemic derangement, and that trying to correct them could cause further problems?

  4. I understand that NFBT actively trains the brain, and thus requires the depletion cellular energy. Given that I likely have mitochondrial impairment, are there any special adjustments the practitioner should make to my protocol?

  5. Can NFBT treat the limbic system? Specifically the pituitary and amygdala?
Thanks!
 

Jesse2233

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Thought this was particularly interesting:

Starcycle's 4 CFS Remission

"I also know this neuro connection is true for me (for pre-virus CFS, maybe not viral CFS) because about a year after the initial crash, I got an EEG neurofeedback amp, and did some neurofeedback. After one of the early sessions, something "clicked," and I had complete and total CFS remission, 100 percent gone, energy back to normal for about 4 days. I was completely stunned. Just smooth, unlimited "normal" energy all day, it was really remarkable. The NF practitioner I was working with didn't have a lot of experience with CFS, and recommended I continue with more training to consolidate the gains, etc. (their model consists usually of the idea of long-term training with small incremental gains), but that whacked something out and I went back into the CFS state. Placebo effect? Maybe. But no matter how I "tested" it, the fatigue was totally gone. And you really can't fake that, even to yourself."
Tagging @Nielk @acer2000 @jeffrez for feedback
 
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Nielk

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Hi @Jesse2233 -

I had some positive experience with neuro feedback a few years ago.

It helped me with specific symptoms like sleep problems and the "brain on fire" feeling and headaches.

I used to go once or at times, twice a week. For me personally, it worked as long as I kept going for treatment. When I would stop because either it became too expensive or I was too sick to get to my appointments, those symptoms would get worse again.

Then, I would go back again and after three or four treatments, I would find relief again, but the same scenario repeated itself.

My neuro feedback practitioner was surprised (and frustrated) with my inability to retain the positive effects. He said it was unusual.

I have not returned for the past two years. But, I have to say that neuro feedback was the only treatment that have me temporary relief of some symptoms.
 

acer2000

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The problem with neuro feedback is that outside of a few well-defined conditions it really is the wild wild West. Practitioners have varying levels of experience ranging from a weekend course to years of experience. Even the ones that have a lot of experience don't really agree on which method is most effective for which person. I'd be a little cautious doing it because you don't really know what's wrong with you and you don't know how it would interact with the training. I'd also be very cautious of any practitioner that says that neuro feedback cannot cause harm. Anything that can persistently shift your brain in a way that is perceived as helpful can also do the opposite.