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Neurofeedback

Discussion in 'Alternative Therapies' started by Nielk, Oct 28, 2009.

  1. Phil

    Phil

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    Hi Mr. Kite
    I'm taken aback. I wasn't expecting another such negative report. You and Acer certainly make a strong and informative one, two punch against neurofeedback. Even though my experiences were strongly positive I would suggest that anyone considering neurofeedback pay close attention to your experiences.

    I guess we would all be most critical of that which hurt us and which we had difficulty recovering from. If this were a thread on colon cleansing or primal type therapies I would certainly be writing some serious warnings. I did eventually find a helpful therapist so I wouldn't toss out all psychotherapies but I never found a way to recover from the damage brought on by colon cleansing so my warnings would probably be more universally dire in that area.

    Switching gears slightly, perhaps there is still some ready remedy for the damage that has befallen you and Acer. Maybe the right neurofeedback person with more experience and maturity might be able to help? Also did you try to contact Sue Othmer directly. She was direct and honest when her approach was going awry for me. I would like to think she would want to hear from those who were harmed by the methods she and her husband developed.

    I would not presume to know enough to recommend this neurofeedback technique or that but I would recommend two people because of the experiences I had with them personally and the lengthy conversations we had. That would be Len Ochs the creator of the LENS method and Les Fehmi who developed multi-synchronous brain wave training and Open Focus attention training. Open Focus by the way is a non-machine approach to working with attention that leads to very balanced states of mind and eeg readings and is easy to learn and inexpensive. It's been one of the most helpful things I've ever used.

    Whatever you do I wish you (and all of us) luck in getting out of those damaged states.
    Phil
  2. rebecca1995

    rebecca1995 Apple, anyone?

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    Sure, Mr. Kite! That would be great, if it's not too much trouble.

    Phil, I really like the Open Focus stuff, too. I listen to one of those tapes every night before bed in lieu of a regular relaxation tape. It's supposed to be effective at generating alpha--which I need right now since my neurofeedback equipment's been in the shop for weeks! :Retro mad::Retro mad::Retro mad:

    It's been eye-opening to read people's negative experiences. I guess I was lucky to find a decent practitioner.
  3. Phil

    Phil

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    Hey Rebecca
    Great to hear from someone who uses Open Focus! I've never met anyone else who does outside of a Les Fehmi workshop. It was very useful for me years ago in learning to fall asleep more easily. Despite severe afternoon fatigue I couldn't take naps prior to Open Focus. I think it's great that this approach to working with attention can be used as a very easy relaxation technique (just pop in a tape or cd) and if you like it can be a path by which you can change your moment to moment experience of yourself and the world. Not to many techniques offer that kind of range. I'm a fan as you can see. Anyway glad to "meet" someone else using it.
    Cheers
    Phil
  4. Rrrr

    Rrrr Senior Member

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    I recently started the LENS method of neurofeedback (Len Ochs is the creator of the LENS method). Can anyone tell me how this compares to the Othmer method?

    Also, I'm confused as to WHAT is actually being zapped into my brain. Is it electromagnetic pulses or radio waves? I thought I read both at different times.

    Rrrr
  5. Rrrr

    Rrrr Senior Member

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    LENS neurofeedback

    I have mixed feelings about the LENS neurofeedback I'm doing.

    First I should say that I am going super slow with it, as I am worried both about my already-messed up CFS brain *and* a vestibular injury i got last year in my head/brain/ear/eye area that resulted in me having permanently jumpy vision because my brain has not "compensated" (re-wired around the injury -- and top neurologists in my area are not sure why it has not re-wired. Personally, I assume it is because I have a CFS damaged brain.)

    I started the neurofeedback treatment in large part to see if it would help my vestibular injury and jumpy vision. And because a pal of mine with CFS experienced great results in terms of her brain fog lifting for a full few days after just one treatment.

    My experience actually mirrors the first person on this thread who said it hurt him, AND yet it also mirrors the experiences of those who say it helped.

    On the good side, I feel the treatment helped get me out of a near-bedridden relapse of 2 months. And it did that by making me feel hyper. Like I was on coffee. That was certainly better than being bedridden! But a few times, the hyper feeling was too hyper and I got the shakes for a night. And my joints started to hurt. Like all of my joints. That freaked me out.

    We dropped the dose to 1 "zap" at a time and to the lowest possible strength; to the "hum exposure" strength -- which means all I'm getting is the hum of the machine, not even a real zap.

    (By the way, this type of neurofeedback is nothing like the "training" others have talked about here. The type I get is just a reading of where my brain is at and then a zap back into my brain, reflecting or mirroring the wave patterns it originally read. Or so I have been told. So there is no training going on. I take no active role in this. I just sit there. It takes about 1/100th of a second and it is over.)

    When we lessened the zap to just one zap and to just the hum exposure, I began to not get the joint pains as much and not get hyper feeling, and instead get consistent help in terms of increased energy and improved mood and less anxiety. All this was noticeable immediately after I left the office, or at least by the next morning. At first the improved feeling only lasted a few hours after a treatment. Then it started to last a few days. But it could be that as we progressed along, zapping the points that the map sequence had indicated were most "in need," I was getting the most improvement. (The theory is to start with the parts of the brain that are in best shape and progress to the points that are in the worst shape. I got the most help from zapping the ones in the worst shape.)

    However, the down side to this treatment is that it does make my vision more jumpy. Less so since we lessened the zapping treatment to just one zap and to the tiny hum exposure. But still, my vision is not improved from the treatment and is made worse. So this bothers me. The worsening of my jumpy vision goes away after about 1 wk.

    I am not sure where I stand on this now. I still fear hurting my brain with this unknown therapy.

    And I am really not sure WHAT I'm zapping into my head. Is it an electromagnetic pulse? If so, will this make me sensitive to all electrical things (EMF), as so many I know experience as part of their MCS (multiple chemical sensitivities). I have MCS. I don't want to get EMF sensitivities, too!

    But two weeks ago when I was sick and anxious, the zap treatment helped a lot. In fact, both treatments that week helped a lot.

    However, THIS week, the last two treatments seemed to make me feel worse. (I'm getting two treatments per week of one zap each.) And I do feel some of the disassociation feeling that was mentioned earlier on this thread. It is hard to explain. It is like I do something but I don't acknowledge that there are consequences to doing it. Like taking the cup away before I have finished pouring the tea from the teapot into the cup. I take the cup away, but I keep pouring at the same time, thus spilling tea all over the table. I have never done things like this before, and I seem to be doing things like this a bit now. And I did not link that to the neurofeedback until I read the other post about the disassociation feelings. So thank you for sharing that!

    So I am confused. And nervous about hurting the one brain I have.

    After reading the posts here, I have to think about if I'm going to continue.

    Rrrr
  6. jeffrez

    jeffrez Senior Member

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    Exactly. LENS is totally different. And no offense -- I understand how desperate we all are -- but you have to ask yourself if it really makes sense to be zapping your brain with electricity when you have CFS/MCS. Like things aren't bad enough, right? LENS and all this other neurofeedback crap (sorry) hasn't even been proven in HEALTHY people. Oh sure, they have their "studies" and all the clinical anecdotal evidence they always tout to get new suckers... sorry, I mean clients... yes, of course... clients... but let's be real: super-informed people like Dr. Cheney and others who have actual medical degrees and who have studied CFS practically their entire professional lives don't really know what CFS is or definitively how to fix it - we're going to trust some "neurofeedback practitioner" to zap electricity into our brains on the weak and probably not even directly applicable claims of some "clinicians" who are pushing this thing to make money to begin with? It sounds a little crazy, doesn't it? Of all the other legitimate things to try, we're going to zap electricity into our brains?

    I'll tell you another story - maybe applicable, maybe not - which relates to when I first got carpal tunnel syndrome a few years ago from the thyroid problems. If you've never gone through this, the neurologists have a test they do to diagnose it, one part of which involves zapping the nerves in your arm with extremely small amounts of electricity to measure the potential, flow, etc. and another part in which they inject some kind of rather thick needle into your arm at various places for some reason that I don't even remember. Most people are completely freaked out and feel excruciating pain from the needles, but are usually perfectly fine with the electrical zapping, which they don't even really notice that much.

    For me, however, with CFS and MCS, the electrical zapping was excruciatingly intolerable. It was literally like torture. The zaps were just turning my entire nervous system to a burnt and frazzled mess. I pleaded to stop a few times, he said of course that he couldn't force me to continue obviously, but that he had never seen anyone react that way before, maybe I'm making too much of it, just try to get through it, etc. He thought I was a total nutcase. I gathered and steeled myself and despite multiple stops managed to make it through, but then when it came to the needle part, I had no problem whatsoever, which completely nonplussed the guy. Thinking I was an anxiety nutcase, he thought that part was going to be 100 times worse, but I could have done that all day long, no problem at all. It was obvious to me what he never would have gotten in a million years, that the electrical zapping was really severely messing with the CFS/MCS brain, which in most cases is probably skewed to overarousal and excitatory neurotoxicity to begin with. And he was a neurologist (which actually might work against him in this regard instead of being of benefit, with all the incomplete and dogmatic info they typically have).

    So the moral of the story is that I would seriously question the cost/benefit ratio with something like LENS that is zapping electricity into your head. You have to ask: is there nothing else that might give equal or even more benefit? Is it really so hopeless that you are forced to having no alternative but to turn to this unproven, potentially dangerous (imo) with CFS/MCS "treatment?" Have you really exhausted every other possibility, angle, every possible nutritional, metabolic aspect? Even standard NF, as risky as it is, at least doesn't zap electricity into your brain. And even that I would call close to if not a last resort. From my point of view, it just doesn't make sense to risk it. But everyone has to conclude for themselves what they want to pursue, what they feel is acceptable risk, and so on. If it were me, I would just ask what I expected to really gain from this, whether it was likely I was even going to get that outcome, and whether I had tried every other thing first before messing with a "therapy" that is at best unproven, on a brain that we don't even really understand the workings of when it is normal, and not CFS/MCS impaired.
  7. Rrrr

    Rrrr Senior Member

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    mr kite,

    thanks for taking the time to comment on my post and on LENS. you make a convincing case. (of course it is something i was already considering/thinking/feeling.) the trouble is, when i am feeling super sick, and bedridden, and when the anxiety is gripping me (anxiety is a new symptom of mine that started with some new hell i'm experiencing due to MCS and mold and housing issues), and then the zapping helps relieve all that!.... well, it is hard to resist doing it.

    but i really fear the EMF issues arising. so i think i will stop. or drop down to once every other week of just one zap. or maybe i'll stop. or or or or or...

    regarding trying other things: i try so many things, all the time, like the rest of us. and this is one of the rare few things that has helped. right now i'm doing homeopathy and serotonin neutralizing drops, just to mention 2 things i'm experimenting with, and both things -- all things i try! -- make me sicker. like make me bedridden for days or weeks or months at a time after trying them.

    sometimes i envy my CFS friend in calif (who shall remain nameless). he gave up on trying anything new. partly due to no cash flow. and in truth, he is no better or worse off than me in terms of how much time he spends bedridden and housebound. but he saved the $9000 i spent last year on medical expenses, and did not waste tons of energy going to countless doctor's visits that yield nothing substantive, and he did not have to experience the (false) hope and the dashed hopes.

    xxoo
    R
  8. jeffrez

    jeffrez Senior Member

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    If it helps, it helps! Ultimately only you can decide, however, if you think it is an actual help, improving the root causes, or just a symptomatic relief. The way you described some of the benefits actually sounded more like it was just providing symptom relief by stimming you even more, which, as counterintuitive as it may seem, is often the reverse direction we need to go in with CFS/MCS, as often there is already overarousal. And TBH, I don't really know what the claims are of the LENS system, what it supposedly addresses, how it allegedly works, etc., only that it involves zapping electricity into your body, which in general doesn't sound like a good idea to me. Several people with whom I've consulted about NF have cautioned me against it - not necessarily because they know it to be dangerous, but just on cautionary grounds because of what it involves.

    There's a lot be said for just "doing nothing," like your friend apparently has found out. That's hard for Type-A people like me (and maybe you) to accept or do, so I completely empathize with your situation. The part about everything seeming to make it worse I can also totally relate to ("nothing I do don't seem to work, it only seems to make matters worse," as the Rolling Stones put it ;)). One thing I've started asking myself when doubtful about whether to do something that might give some symptomatic relief but could have bad consequences (i.e., things that are risky) is, "have I ever heard of anyone getting cured of CFS/MCS from this treatment?" In most cases, the answer is "no," which then helps me to get over my fixation on doing it (and then just go onto the next thing, lol). But it sometimes helps to come back into a "be patient" mode, and then I can start exploring higher percentage treatments again, or clarify my direction of what I think makes sense to pursue. And it doesn't hurt to save the money, either. But again, ultimately only you can decide if something is right for you to do. Often that comes down to a "gut level" decision or feeling. So I'm just presenting my own point of view, to be taken with whatever grains of salt you feel are necessary.
  9. Rrrr

    Rrrr Senior Member

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    well, thank you for yr point of view. very helpful to discuss it all! the comment about things that "stim us out" is a good point. that can indeed backfire, can't it? -- R
  10. Rrrr

    Rrrr Senior Member

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    by the way, someone sent this to me a few months back...

    http://www.nytimes.com/2001/05/01/health/01HEAD.html?searchpv=nytToday

    New York Times May 1, 2001

    BOOKS ON HEALTH

    Making the Case for Brain-Training Therapy By JOHN LANGONE

    "A Symphony in the Brain: The Evolution of the New Brain Wave Biofeedback,"
    by Jim Robbins, Atlantic Monthly Press, $24.


    When the author of this book first heard of a technique known variously as
    brain-wave biofeedback, neurofeedback and neuro therapy, he was battling
    chronic fatigue syndrome and had exhausted traditional therapies.

    Though it "had a New Age whiff about it," he nonetheless traveled to a
    weekend symposium, got his scalp hooked up to a computer display via
    electroencephalogram sensors and began a session of brain-training.

    "After a half hour," he recalls, "my mind was tired, my thoughts muddled.
    But an hour or so after I finished, I experienced what is known as the clean
    windshield effect. The world looked sharp and crystalline, and I had a
    quiet, energetic feeling that lasted a couple of hours. It was the first
    time I had felt that way in years."

    Biofeedback, which has been around for some 30 years, harnesses the body's
    natural rhythms — brain waves and autonomic functions — to monitors that
    allow one to see, for example, amplified electrical frequencies of the brain
    or usually unconscious occurrences like blood pressure and heart and lung
    action.

    By watching these events on a computer screen, participants are able to
    influence their physical and mental well-being. In neurofeedback, patients
    can be trained to operate in brain frequencies they do not generally use, an
    exercise designed to enable one to strengthen the brain.

    Mr. Robbins, a journalist whose articles occasionally appear in The New York
    Times, focuses on the brain-strengthening aspects of the technique, making a
    decent case through interviews with clinicians, researchers and patients for
    its value in a variety of disorders, including autism, epilepsy, attention
    deficit disorder, learning disabilities, head injuries, post traumatic
    stress disorder, addictions and depression.

    He argues that though the medical profession is generally dismissive of the
    therapy, the effects of neurofeedback are "not subtle but extremely robust."

    It may not be either miracle or panacea, he writes, but it is science,
    albeit science that is still young and relatively unknown. The big question
    about neurofeedback, he concludes, is not whether it works, but "why it is
    as effective as it is, for whom, precisely, and how it can be made more
    powerful."

    here are some excerpts of the book

    http://books.google.com/books?id=uc...&resnum=1&ved=0CAoQ6AEwAA#v=onepage&q&f=false
  11. jeffrez

    jeffrez Senior Member

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    Those sales brochures or literature, like "Symphony of the Brain," rarely if ever mention the adverse effects neurofeedback can cause, often severe, and often more or less permanent. They also don't mention that if you are harmed by neurofeedback, the person who harmed you (or whose protocol harmed you) typically won't know what to do about it, because all they know is what they know, i.e., the protocol that harmed you, or some variation.

    That's why when someone is harmed, the best most of these people usually have to offer is *more of the same thing that harmed you!* Typically that will take the form of, "you just haven't done it long enough yet," "it takes many sessions," "sometimes you get worse before you get better," etc.

    So then you search around for another "clinician," but they only know their protocols. Maybe those protocols will work, maybe they won't. Maybe they'll make you worse, too. Then on to the next person, and the next.

    The point is that none of these people really understand the complexities of the brain and how it is working, especially in CFS. All they know is their own limited "protocols," based usually if not always on some incomplete understanding of the brain. In reality, they just don't fully know what they're messing with. That's one reason why it can be so risky. Caveat emptor.
  12. Rrrr

    Rrrr Senior Member

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    you raise some good points, yet again, mr. kite. -- best, R
  13. acer2000

    acer2000 Senior Member

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    Not to discount the adverse effect you are reporting here, but dissociation (as I experienced it - which mirrors closely the definition) is a bit different than what you describe. What you describe seems more like general confusion and absent mindedness, but perhaps I am just misunderstanding your reporting of the symptoms though.

    Dissociation is defined as:

    depersonalization, derealization and psychogenic amnesia

    Depersonalization is the sense of loss of "self" - essentially feeling emotionally and logically disconnected from experiences that define who you are. Derealization is a feeling of detachment from what is going on around you - like you are sitting outside a window watching yourself. Amnesia is memory problems - since most true dissociation is a result of trauma - they call it "psychogenic" but in this case its probably neurological as a result of the neurofeedback shifting something. The specific type of memory problems aren't just "forgetting" things short term or long term, its an actual absence of life experiences having any influence on your behavior. So for instance, if you experienced learning a lesson about something in your life you will not only not be able to remember the event very clearly, but the subconscious reaction conditioned by that event won't be factored into your reaction to future similar events. Its as if portions of your life are "walled off" from consciousness - even if you are intellectually aware of them occurring. The net result is feeling very numb.

    Its actually normal to dissociate briefly as a way of temporarily coping with an emotionally charged issue or stressor - but its not normal to feel like that all the time (or even some of the time).

    Sounds like the LENS is causing you problems - what does the practitioner have to say? Does he/she have any experience with people like us? or a situation like you report? What is *supposed* to happen?
  14. acer2000

    acer2000 Senior Member

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    Oh and Mr. Kite - you are 1000% "on" with this. I have had an incredibly difficult time finding someone to explain to me what the neurofeedback I had (I have all the records) was *supposed* to do - let alone what it *did* in me to cause the symptoms I now experience. The very suggestion of going over the past treatments and brainmaps to see what has changed along with my symptoms seems like kryptonite to some of these people I have consulted with. They just can't see why its necessary to understand what protocol caused the problem and why before offering to sell me more or different neurofeedback to attempt to rectify it. Whats the old proverb - "pay attention to history, or it has a good chance of repeating itself". /shrug

    This is just my speculation based on my experience, but I suspect that in reality that even the best practitioners of Neurofeedback really can't 100% predict how someone will respond to a particular protocol. Doubly so for someone with a serious illness that effects the CNS like CFS. So like the psych docs who prescribe meds - they advocate "trying" a protocol to see how it makes you feel and as some sort of diagnostic heuristic. Some of them attempt to narrow it down before you start by the symptoms you present with - but some just seem to "try stuff" until they get a reaction - favorable or not - which tells them what "protocol" to pursue with you. The problem with this approach is if you are in a fragile state, things may shift much quicker or in greater magnitude than they are expecting or in a way not necessarily predicted by the empirical model - and then the effect might not wear off like they expect from a "normal" person. You don't have the "room to play" to safely undergo the diagnostic sessions (and have them wear off) - so the whole model kind of blows up. Actually I suspect that some "normal" people are more sensitive than others - so you might not even have to be sick with something like CFS for this to happen.
  15. muffin

    muffin Senior Member

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    LENS and Qeeg --- Thank you all for the alert to be on guard

    I and my husand have been having our weekly sessions of LENS. I was quite sick with a virus and a bacterial infection (and three antibiotics) so the LENS treatments and their effectiveness were clouded by my illness. However, I MAY have felt a loss of "drive" NOT associated with lack of energy and/or illness. I noted this to my therapist and we used only one electrode given that I am super sensitive to everything. That seemed to be helpful as the next day my "drive" was back but without the usual "wired/tired" hyper feeling that I get when I do have a bit of energy and burn it up quickly trying to do all that I should have been doing when sleeping. I did accomplish a fair amount but without that hyper stuff going on. I also passed out at 6pm since I guess I had not been able to be somewhat "normal" and active in a long time.
    I will continue to watch for any negative signs with the LENS treatment. My husband seems to have benifted from it in that he doesn't feel so emotionally fragile and stressed (his second major complaint after severe sleep disorder). So, LENS may be helping his brain re-wire and reduce his anxiety levels. He has been sick with what I believe is a subset of CFIDS/ME for five years while I have been sick and disabled (bed ridden really) for 15 years. I also had a personality that was too agitated, hyper and also had severe sleep issues going back to very early childhood. Then, bam! the virus that took me down 15 years ago. So, I have reservations that this will help me given the long-standing damage (pre-CFIDS really) but have to give it a shot.

    Thank you all for the warnings of the negative aspects of LENS. It is experimenting and the therapist told me that flat out. Fine, but I can NOT lose what little I have left. So, as with ALL medical interventions I will be on guard. I will also report my trip with LENS.

    The head doctor at the clinic I go to is working with Dr. Cheney using brain wave results from people like me with CFIDS. Again, I know nothing more about this study as it was just a quick "toss" by this doctor to me for whatever his reasons were.
  16. Rrrr

    Rrrr Senior Member

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    thanks for the clarification on the term disassociation, Acer2000.

    in terms of me talking with my practitioner, i have been telling her all my results from the treatments, of course. the good and not good. but by and large, the results have been good. i did not make the link between the tea pouring type of incidents and the LENS until reading this thread. so i emailed the practitioner with my new thoughts on that.

    i think i'll stop for now and see what happens.
  17. Phil

    Phil

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    Baby with the bathwater?

    This thread started off with some positive reports followed by some reports of harm but of late their seems to be an overriding negative and fearful tone. While the bad experiences reported here are as valuable to this thread as the positive I do feel it's important not to paint the entire field and idea of neurofeedback as dangerous, incompetent and money grubbing because of those bad experiences. Many of the complaints against neurofeedback in this thread could be applied to any number of standard medical practices as well as almost all alternative practices. Doctors give drugs constantly that they cannot explain the biochemical processes for nor do they necessarily know how to undo any damage that may be done by those drugs. I do not see neurofeedback as any worse in this regard.

    I do agree with the negative side here that possible negative consequences of neurofeedback should have been revealed to them before beginning treatment. It's infuriating to do something presented as effective and safe to improve your health only to have that greatly worsen your condition or add new problems.
    That said, almost no area of health treatment, standard medical stuff or alternative does a good job of this. We could have a whole thread, no a whole forum devoted to this, but why single out neurofeedback in this regard? The proper warnings and complexities involved were omitted from virtually every physical or psychological health approach I've encountered in 40 years of searching. I always have to dig for this stuff myself.

    As to the incompetent and only interested in money etc complaints. Well I have been a client of and had great conversations with 3 neurofeedback pioneers, Len Ochs (LENS creator), Les Fehmi (multi-channel synchronicity eeg and Open Focus creator), and Sue Othmer. I'm convinced all of them are motivated to a large extent by the power of their ideas to help others. And they have helped others a very great deal. I wish I could have done so much. Would I expect most neurofeedback practitioners to impress me so favorably - no of course not, but the same would be true in any field.

    Oh yes, to characterize LENS as zapping your brain with electricity is an unfortunate misrepresentation of what's occurring. I don't remember all the details but what's amazing about LENS is what an amazing (and usually positive) effect such an incredibly minute electromagnetic impulse applied for such an incredibly short duration can have. Len Ochs the creator of LENS spoke to me in detail about this and the importance of not being heavy handed with applying input to our bodies. He was concerned that others might take his ideas build their own devices and create their own approaches using strong powerful electromagnetic fields as he thought that was entirely the wrong direction to go. When I saw him in maybe 2003 he also used an LED device called the Photonic Stimulator for pain problems and balancing the sympathetic-parasympathetic systems. With that device he expressed the same philosophy - do the work with the minimum amount of applied energy. He said it was amazing how little energy input was required to make changes. And of course he had some great theories about why his approach could help restore flexibility to a brain that had become rigid and stuck in hurtful patterns.

    So, I submit that to speak of LENS as "zapping the brain" the brain is not a very useful way to think about it. As to the question could it cause EMF sensitivity, I would venture not likely. Certainly there are many obvious steps to avoiding incredibly stronger EMF fields that I would suggest as a priority if you have fears in this area. I finally bought a emf meter (TriField brand)
    after years of thinking about it and found it quite useful for reducing emf exposure both at home and at work. I cannot report feeling any different because of the reduced exposures but with a meter you can make things the fears concrete and you can take actions based on what the meter reveals.

    So lets continue with both negative and positive reports but l for one would suggest keeping the baby and only getting rid of the bath water.
    Phil
  18. Nielk

    Nielk

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    As I said in the beginning of this thread, Neurofeedback has been the most successful therapy for me so far.
    "Symphony In The Brain" is not a pamphlet, it's a very well documented book delving into the history and avtivity of Neurofeedback.
    I think it is very important to go to a weel experienced practitioner.
    Preferably one that has experience with CFS patients.
    My practitioner knows to go very slow with me since I'm very sensitive.
    He initially took a qeeg brainmap so he was able to see where my difficulties are and target only those areas.
    I have seen an improvement and when he repeated the brainmap a year later, he was able to show me on a chart
    how my brain has improved in the problem areas.
  19. jeffrez

    jeffrez Senior Member

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    That's actually not entirely correct, at least not all the time, because in the vast majority of cases we do know the biochemical effects of drugs. If we didn't, it would be almost impossible to develop that drug, because of course the biochemists are studying what the drug does when they create it.

    Furthermore, most adverse effects from drugs will tend to be linear. Too much of something, wait for it to wear off, too much of another thing, give the antidote, etc. Sometimes we do have to intervene, but again, we usually do that based on knowing what the effects are and then how to counter or remedy it.

    That is completely not the case with neurofeedback, which tends not to be linear, but more global. You could be training site X with protocol Y, and when something goes wrong, the answer isn't always to train site X again with protocol anti-Y. There is no linearity, and many if most of these "clinicians" don't know enough about the brain to know what to do to fix things when they go wrong. If they did, no one would be here complaining about adverse effects that no one was able to fix.

    Because the neurofeedback field is not doing an effective job of telling people about the risks. In fact, they are more usually trying to silence anybody who is reporting harm so they can keep gaining new customers.

    When I started talking about my bad experiences with NF and warning prospective customers on their biofeedback list about the potential dangers, I was savagely attacked, called a "schizophrenic" and worse -- one guy actually even called me a "criminal" -- and they banned me from their yahoo biofeedback group. Before that, the social worker "practitioner" who first messed me up also started releasing my confidential counseling information on the internet to try to discredit me and my reports of being harmed by the Othmer protocol.

    I encourage anyone to go find those posts if they haven't deleted them, and then ask yourself if those are the kinds of people you want to be dealing with, especially if or when something goes wrong. The bottom line is that they are all selling something (NF), and they are very vicious when it comes to marginalizing anyone who has been harmed by NF and who discusses it where there are potential customers around. They want to pretend it's the safest thing in the world, when actually it's potentially extremely harmful.

    When I had a "conference call" with Sue Othmer and the practitioner who messed me up with the Othmer protocol, they argued with me for 15-20 minutes until finally admitting that the software they had recommended using didn't actually measure the frequencies they claimed it did. They kept trying to say that if the T3-T4 ultra-low frequency protocol made me worse, then I should just change the electrodes to some other site. But as I kept telling them, the software doesn't measure those frequencies. They just kept saying things like, "let Sue talk!" Well, she already talked and said something that was wrong. So of course it's impossible to proceed when you are proceeding on faulty assertions.

    First she (Othmer) blatantly lied and kept maintaining that the software did measure those frequencies. Then when I gave them proof from the manufacturer, and didn't let them bully me as they were trying to do, she finally relented and admitted that the Bioexplorer software they had recommended didn't in fact measure below 0.1Hz. Then she said, "well, then I guess you'll just have to wait until the software maker upgrades the software." Then they turned around and wrote in to the biofeedback list how I had been "wasting Sue Othmer's time," etc. and all kinds of ridiculous things, again to try to discredit me after they had screwed me up. It was truly surreal - awful, awful people.
    And imo very intellectually dishonest. It appears they will say/do anything to keep their business going and the money coming in. They are brilliant marketers and have marketed themselves as really "benevolent" folks "who are in it for all the right reasons," etc. - right, sure. Who release your confidential counseling information on the internet in violation of just about every known ethics law in existence when their protocol screws you up and they can't/won't fix it. CAVEAT EMPTOR.

    Small amounts of anything can affect MCS/CFS patients. The amount isn't even really important, what's more important is the individual and their tolerances, which can be extremely low with these disorders. What amount of peanuts can you eat without dying? Someone with an allergy can't even eat or breathe in one tiny speck. And it's also frequently the case with CFS/MCS that everything appears to be going along fine, and then BAM, you are suddenly pushed over the edge without having realized how close you were to it. In CFS, the analogy would be to the post-exertional malaise phenomenon; with MCS, it's often called "the straw that broke the camel's back," where one second you are "normal," a regular person, and the next, with the exposure that pushes you over the edge, you now have chemical sensitivities for the rest of your life.

    I would always and in every instance urge the utmost of caution to any person with CFS/ME or MCS when considering any form of neurofeedback, and to only undertake it as a last resort. The absolute truth is that no NF practitioner completely understands the brain, so you are always taking a huge gamble every time you paste those electrodes to your head. In most cases perhaps it is largely benign, or even beneficial, but imo the risk of harm is greater than the NF people are wanting the public to know, especially in regard to people with CFS and chemical/electrical sensitivities, etc.


    Btw, regarding "Symphony of the Brain," it's a fluff piece written mostly to promote neurofeedback. It's just part of the whole marketing of NF. Most people don't tend to have really acute critical faculties, but will accept whatever "alternative" person tells them, especially if it's in a book, lol. They figure that if it is "alternative" it must have some credibility since the mainstream people are so clueless. But that isn't always the case. You have to scrutinize everything equally. The "alternative" people aren't always some saints sent here from the angels above to heal everybody, as they often like to promote themselves. They're just as interested in making a buck as anyone else is - often even moreso, in fact, especially when they start getting a taste of the kind of money they can make promoting NF, all their software and devices, their "seminars," and so on. They are making huge money, believe me. And that's what tends to motivate the vast majority of them in my experience. None of them ever helped me, at least, after all the harm. Just the opposite, in fact - they tried to marginalize me because they didn't want reports of harm to be spread (and I tend to be very vocal and unafraid of speaking my truth). And that includes the people who caused the harm, who basically just dumped me by the side of the road and sped off into the night. Be very careful.
  20. jeffrez

    jeffrez Senior Member

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    Another thing I just briefly want to add is that I find it absolutely unconscionable that they do this technique on children, who by definition aren't able to give informed consent. Not even to mention the cases of special needs children, with down's syndrome, autism, etc. who might not be capable of vocalizing or verbalizing negative cognitive or emotional effects they might experience. Sometimes, even though a bad effect might be quite pronounced to the person who has received it, those negative effects often can be subtle and hard to detect even for an experienced onlooker, requiring neuropsychiatric examination to bring to light fully. And that is for adults. How much moreso would it apply to say, a down's syndrome child who gets a bad result, feels very anxious, depressed, has even further decreased cognitive function, and can't express that adequately to have it remedied (if it even could be).

    The parents I suppose have the "right" as the guardians to expose their child to the "treatment" - at least under current laws - but just because someone has the right to do something doesn't necessarily mean it is right. Frankly, the way these NF practitioners operate, with their largely unproven techniques, reminds me a little bit of nazi germany and the "experiments" the "doctors" in the death camps used to do on people and children. I'm not trying to be inflammatory or hyperbolic in the least. That thought definitely has crossed my mind more than once, especially in the case of children and the special needs children I mentioned. Without hard data and scientific rigor backing a sanctioned method for any particular disorder, in my opinion the NF practitioners are in reality doing very little else than experimenting on them. And personally I think it's way over the line ethically, if not morally.

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