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.