When I became disabled the first time, in early 1996, I was completely at a loss. I had had insidious onset of sensory neurological symptoms associated with autonomic and vascular instability, as well as anxiety and symptoms of PTSD for a year. I thought I might have MS, but whatever the diagnosis of my then mystery illness, I knew enough to know that conventional medicine had nothing to offer me. Instead I turned to biofeedback. I went to a conference in ?, can’t even remember where anymore, but I met Sue and Siegfried Othmer in an auditorium, after hearing them lecture. I gave Sue a little history and she hooked me up. I did maybe 20 minutes on her machine, went back to my hotel room and had the first good night’s sleep I’d had in years. I bought a system the next morning, then $14,000 (they are much less now). I took their training course, trained myself, then a few friends and was so impressed with the results that I went into practice with it, still in recovery myself. I used their system for 8 years in practice. Their new system and training protocol seem even stronger to me so far this time around, space age compared to my old system. Sue Othmer is a master clinician and anyone within shouting distance should certainly consider training with her. Siegfried has been a mentor to me for many years now. I am excited to introduce him to you. There is too little cross-pollination between the ME/CFS group and other communities. Please note: caregivers can benefit as much as patients. Neurofeedback is peak performance training, starting from wherever you are. So, without further ado, here’s Siegfried…
|The question has been asked on this blog: “What is Neurofeedback?” And Jamie has asked me to answer it with reference to neuroimmune diseases. Neurofeedback is basically a biofeedback technique that utilizes the EEG as an index to our internal states. Biofeedback commonly uses measures of peripheral physiology, such as hand temperature, sweat gland activity, muscle tension, and heart rate. The objective is the same: it is to train the central nervous system toward better regulation of its internal states. Using the EEG, we get a little closer to the central processor, although we get a bit further away from what we can readily relate to.
Neurofeedback has been explored over the last forty years in connection with conditions such as epilepsy and Attention Deficit Hyperactivity Disorder. But over the last twenty years, it has come to cover the whole domain of mental function. So it has potential relevance to the management of CFS, fibromyalgia and Lyme disease as well. The argument goes as follows: With the emergence of brain imaging over the last fifteen years we have discovered that the quality of brain function depends upon the organization of the brain in its resting condition. Now this resting state is in fact a very active state, but still it can be readily distinguished from states in which the brain is externally engaged. Further we have found that the common mental dysfunctions are associated with disruptions in the functioning of these resting state networks.
Consider the example of a severe emotional trauma, one that results in persistent PTSD. There has been no blow to the head; no loss of neural integrity; no physical injury to the central nervous system. And yet the resulting dysfunction can be profound and lasting, as we well know from the experience of our veterans. What has changed in these nervous systems? In our new model, one would say that the nervous system lives perpetually in such an agitated state that it has lost access to its resting states. Or in slightly different language, resting state activity is now disturbed, perhaps permanently in the absence of intervention. The same occurs when the stressors to which the CNS is subjected are internal rather than external. That’s where CFS and Lyme disease comes into the story. Just as in the case of emotional trauma there is no need for ongoing insults to maintain the state of dysfunction, the same holds true for organic insults to the system. Once brain regulation has been profoundly disturbed even by a single event, the brain may not find its way back to wholesome organization. And if the insult is ongoing, then of course matters are all the worse. If the neuroimmune disease had a direct impact on the integrity of our neural systems, then again matters are all the worse. But they are not without recourse.
Before we go on, the take-home message from the above is that even if no disease marker survives, the brain dysfunction may nevertheless persist. This is the downside of brain plasticity! The brain can consolidate dysfunction just as readily as it can consolidate function. This brain dysfunction must be targeted directly because effectively it lives a life of its own. And neurofeedback is the best means to do that. What is involved in the neurofeedback as it has evolved at our hands is that we simply allow the nervous system to see itself in action. That is literally all there is to it. We do have to be quite selective in what we show the brain, but in view of what I have already told you, it wouldn’t be hard for you to figure out what that is: We have to focus the brain’s attention on its own resting state activity! Once we ‘shine a light’ on that activity, the brain can find its way back toward better-organized resting states. Progressively, step by careful step, we get the brain functioning better again.
The journey may not be smooth if the trainee is coming with a raft of symptoms. So a knowledgeable clinician has to steer the journey in a way that maximizes the person’s functional status at every moment. The rule is simple: if the person feels better as the training goes forward, then we are doing the right thing. If the person starts feeling worse in any way, we need to change course. So the brain itself is telling us what it needs by way of information about itself—figuratively it is telling us where to point the flashlight in the dark.
The metaphor has its limits. We are the only ones who are in the dark with respect to the signal on the screen. The brain is not in the dark. In fact the whole process only works because the brain recognizes its relationship to that signal. And once it realizes the connection, it ‘takes responsibility’ for that signal. That is what our brains do. This is no different from your brain taking charge of the steering wheel of the car while you have decided to think about other things than keeping the car properly in the lane. The signal on the screen is part of a control loop that the brain must manage… because that is just what brains are organized to do.
The implications of the above are that anyone with a neuroimmune illness dealing with persistent symptoms is well-advised to try neurofeedback to see how much function can be restored. This works even if there are serious ongoing organic issues. We are up against the same problem with the autistic spectrum, where there are lots of ongoing organic issues but we can still substantially enhance the level of function with neurofeedback. But if there are ongoing organic insults to the system, then one may well need to keep the training going at some level in order to maintain function.
There are other kinds of neurofeedback besides what I have discussed. The brain will react to all kinds of information about itself. But ours is presently the only neurofeedback method that trains the brain’s resting state activity so directly, and that appears to be the most efficient training method for a variety of very challenging conditions, including PTSD, the autism spectrum, and the other conditions where resting state functional organization is so profoundly compromised.
Siegfried Othmer, Ph.D.
Thanks for this Dr. Jamie! Even though I am continuing to get excellent results with neurofeedback I am still saying, “What is neurofeedback?”
This is a clear and concise answer. In my treatment of people who’ve had strokes, I’ve always appreciated brain plasticity as a positive, I’ve never heard there was a downside! I’m still very excited about this treatment technique and the possibility of re-training in the practice of it.
what does a Neurofeedback machine cost these days? I have often thought about giving it a go but being housebound means it’s not possible, unless I could buy a machine myself …. hmmm ….
Clinical neurofeedback systems cost in the neighborhood of $5000. Less expensive systems are available for the growing “brain hacker” community. All these systems can be deployed in a variety of ways, and the more one is dealing with complex symptom presentations, the more critical is the decision-making with regard to training protocols. Those who are most impacted by neuroimmune dysfunctions are therefore the most in need of competent guidance in their use of this technology. Home training is likely going to be a part of this picture, but it should be under ongoing clinical direction.
The explicit training of resting state network organization is presently unique to us, the originators of this method. This work utilizes an instrument that we have helped to develop over the last six years. It is called Cygnet—-for fledgling swan, because we see it as the beginning of something even greater as our understanding of brain function enlarges.
I only get the gist of the treatment. (I think I understand the problem pretty well, alas.) Anyone doing it here in S. Fe? You? And: “resting state;” does that have anything at all to do with what is supposed to happen when meditating? Thanks.
The training process involves witnessing the ebb and flow of brain activity as seen in the EEG at extremely low frequencies. Under these conditions, the signal changes only slowly, which makes it all the more surprising that the brain recognizes its connection with that signal. Since it is not a very lively signal, it is also does not hold much interest for the observer. We therefore imbed the signal in the visual and auditory presentation pf more interesting fare, such as a video game or a movie. The brain still manages to detect the signal despite all of the visual distractions. So the trainee is being entertained while the brain is being trained.
For the location of practitioners in your area, go to http://www.eegdirectory.com and enter your zip code.
As for the connection with meditation, the signal characteristic of our resting state networks is that the brain is not externally engaged. Under those conditions, the brain moves toward internal focus. And that is also the characteristic of meditative states. So meditation certainly tends in that same direction. But meditation is also rather inefficient, by and large, if altering brain function is the objective.
WiFi overwhelms all biological signalling 24/7 , neuorfeedback as a weapon of mass destruction
Current medical research which includes wireless technologies overwhelming biological processes > http://www.youtube.com/watch?v=pzW5Kb8u0Og
I am not sure what connection might possibly be made between the kind of neurofeedback I am talking about here and weapons of mass destruction.
In our approach to neurofeedback, the individual is in ultimate control. If the brain does not want to play along, nothing happens! And if for any reason the person harbors misgivings about the process, then the brain will just not engage with the signal as it would have to do for the work to proceed. So the individual always retains the final control in this process.
A second key item is that the entirety of information on which the process is based is derived from the person’s own physiology. It is just information. No added chemistry. No added stimulation. Just information. And this information is meaningful only to the brain that is producing it, and it is meaningful only in the moment that it is being produced.
In a sense, this is the ultimate in compartmented information. The information always remains in code, first of all. The code is never translated into the vernacular. Secondly, it is only interpretable by its author; and thirdly it is highly perishable. It has no time value. Outside influences can only disrupt this process; they cannot control it or shape it to their own ends.
I fail to see how this has anything at all to do with the weaponization of our society and of our world. This technique hands the power of change back to the individual. This is in sharp contrast to the trend in our society of power becoming more and more concentrated at the top.
In any weapon system a distinction can be made between an aggressor, the holder of the weapon, and the potential target. No such distinction is possible in neurofeedback.
how does this differ from LENS neurobiofeedback…that is what our integrative doc uses and recommends?
LENS uses electromagnetic stimulation to alter brain function. What I am talking about is what is classically regarded as neurofeedback, namely that the brain merely witnesses information about its own function and reacts to that. There are many differences between the two approaches, but the most important one may be that our method is currently the only one that addresses itself to the low-frequency regime so specifically. In our 27 years of developmental involvement with this field, this new approach is by far the most effective that we have experienced.
Another difference is that our method lends itself more toward home use. There is not going to be a quick answer here for people suffering from neuroimmune diseases. Chances are that they will benefit from regular training sessions at some interval over the longer term, and that means transitioning to remote use. Trainees will come to know themselves in relationship to this method, and they will then become more involved in the process of optimizing the training for themselves. With the LENS, by contrast, further training must be guided by measurements made in the clinic.
Both methods are likely to improve the functional status of people suffering from neuroimmune disease. The decision about which to pursue may end up being made on the basis of what is more accessible and practical in a particular situation. We have thousands of practitioners presently using our method around the world. Many of these list their practices at http://www.eegdirectory.com, where you can just enter your Zip code to find out if there is anyone in your vicinity.
The neurofeedback we now use, and which Dr. Jamie also now offers, does have similarities to NeurOptimal, but other aspects set it apart. What is common to both systems is that they involve nothing more that the brain’s observation of its own activity. No bias is applied by the instrument that nudges the brain in a particular direction. This feature distinguishes these two approaches from all others in neurofeedback. The rest employ more activist interventions, where the brain is rewarded for movement in a particular direction in EEG terms. These techniques work as well. We used them successfully for many years.
The difference between the two systems lies principally in the information we choose to make available to the brain to act upon. NeurOptimal gives information back to the person on those moments when the brain is moving toward disregulated states. In our approach, which uses the Cygnet system, we provide additional information on the brainwaves at extremely low frequencies.
What drove us to do this is quite simply the fact that over many years we found it to be more helpful clinically to provide information on ever lower frequencies—to where we are now. This makes a difference particularly for those clinical populations where the brain disregulation is pervasive—e.g., the autism spectrum, PTSD and traumatic brain injury, and of course what we are dealing with on this list, the neuroimmune diseases.
This sounds a bit like NeurOptimal? Can the neurofeedback still work efficiently if a patient is on drugs that impact the CNS, like benzos or other sleep drugs? Thank you.
Thank you Jamie and Siegfried.
It seems pretty expensive to me, such a machine.
You’re right. The instrumentation is expensive in the perspective of the individual user. Of course it was designed for professional use, where the cost largely disappears in a busy practice. As volume goes up, the price will come down, possibly substantially. In the meantime, individual users in a particular geographic area could combine their resources and obtain a unit that can be shared among them. That can address some of the cost problem.
The bigger issue is that in the complex cases we are dealing with here, trainees should by all means have clinical guidance as they go through the process. And that isn’t going to get much cheaper over time.
In the more distant future, an enlightened society would see to it that resources such as this would be made accessible to people who need them, irrespective of their ability to afford them. But right now such a state of enlightenment is appears to be a ways off.
I would think this would not work well for those with light sensitivity and/or those who have problems looking at TV or computer screens. A significant portion of people with neuro-immune disease have these issues.
Neurofeedback can work very well to address issues of sensory sensitivities.
This is quite often an issue in the autism spectrum, with visual, auditory, or tactile sensitivities. All these can be readily resolved with neurofeedback, and in particular with our Infra-Low Frequency (ILF) Neurofeedback.
As for autonomic nervous system instabilities, this has been the focus of biofeedback since the beginning. Now with ILF Neurofeedback we have even greater possibilities of training autonomic regulation. This is a key issue in PTSD, where the neurofeedback has been very effective.
Anon 10:01pm, there is a choice of video displays from very activating to not. The graphic can be changed to suit the patient. There is also auditory and tactile feedback. Each type of feedback can be adjusted or not used. Blind, deaf and severely developmentally delayed people can be helped with this modality.
Thank you for that information.