I have exchanged a several emails with Joseph LaMountain, Director of Grassroots Advocacy @ EFA and I'm not sure that he ever took the time to read/review the letter I wrote to the AAN. His last letter to me indicated that he didn't think he could be of much assistance. My last letter to him, sent January 14 at 3:59pm:
Hi Joe, |
Thank you for the feedback. I appreciate your candor.
I'm disappointed that the EFA Grassroots Advocacy cannot be of any assistance in asking the AAN what threshold criteria would be necessary to start considering EEG neurofeedback as a mainstream treatment option for epilepsy . It seems to me to be a simple and innocent enough request in line with the EFA's mission.
I hope that you might reconsider. The EFA speaks with a much stronger voice than a lone individual such as myself - even if it's just to ask a question.
I will continue to pursue the matter as best I can.
Last night, I joined in a chat room at blogtalkradio to ask Dr. Steven Schachter
, current President of the American Epilepsy Society
and former editor-in-chief of epilepsy.com
, some questions for his internet radio program on the topic of Complementary Therapies for Epilepsy
(you can listen to the hour long program directly on your media player via this link
). Here is a partial transcript of the show where he addressed my questions:
@ 23:37 -> Patty: OK, there is another question here, um... regarding ... this is from, I believe Bernard, uh... from Coping With Epilepsy. Ah. He says hello Dr. Schachter. He's wondering what criteria needs to be met before neurologists will consider EEG neurofeedback to be proven and accepted as a mainstream treatment option. |
@ 23:59 -> Dr. Schachter: Well, you know I can't speak for all neurologists, but for me, what um.. I evaluate with any therapy, including, you know, FDA approved products, is the balance between the potential benefits and the potential risks. And those ... you, you can read about those on a piece of paper, but you have to individualize that assessment for each and every individual patient ... and, umm.. I .. you know we generally look for evidence of risks and benefits from studies that are done in such a way that the results can generally be believed. In other words, that the study design was set up in a way that if there was an effect found, that it is very likely to have been the effect from the treatment - in this case neurofeedback. Um, in my own practice, if a form of treatment has been thoroughly studied and the associated risks seem to be minor or non-existant, then, you know the .. um, the benefit that would need to come from that is not necessarily as definitive as you would expect if you were doing a, you know, recommending a treatment that has significant risks. So, you know, in my own practice, I would, um, if a patient came, you know, requesting a particular form of therapy or a referral for that type of therapy, if as we looked at the known information about the risks and benefits, it appeared, for that person that the potential benefits outweighed the possible risks, then, in my opinion it's worth a try. But that assumes that the treatment has been studied well enough to have a clear understanding what the possible benefits are and the potential risks, and uh... I have not personally studied neurofeedback, nor am I that familiar with the studies that have been done, but as a general principle, that would be my approach and I think most neurologists probably would agree with that. There are some doctors who, um, may have a ... an inclination against CAM therapies because it's not mainstream medicine, but if the evidence .. .if the results of clinical trials are convincing enough to make this risk benefit assessment and to individualize it, then I think that it becomes a very important part of the physician recommending or agreeing that their patient should try it.
@ 26:52 -> Patty: I'd like to add in one other part, that many times therapies might first be studied for one condition and then someone might find that they might be helpful in seizures. So, not only do you need to do the research again and see that it is reproducable in seizures, but then the payors and insurance companies would need to be convinced that a therapy is effective enough as you said - so they would pay for it. So while you need the research to say it is helpful, you then need other people down the line to say that it could be, kind of mainstream and paid for - in order for people to use that.
@ 27:35 -> Dr. Schachter: Right. And, because, we're always on the lookout for potentially new, effective therapies, I encourage people that have experienced a very positive, or negative, effect from any kind of therapy that we're talking about tonight to somehow bring that to the attention of a neurologist or an epilepsy specialist. One of my goals with epilepsy.com, which unfortunately I didn't have time to do, is to set up a way for people to express, you know, on a one by one basis, if they found a particular treatment that is not mainstream - was unbelievably effective or, on the other hand, made things worse ... because that is how ... those types of obversations that become the seed for .. or become the basis for futher research being done. And, uh, it's so important to make these experiences known to researchers so that they can be further studied.
@ 28:39 -> Patty: Yeah. Don't assume that your doctor is not going to be interested. Sure.
@ 47:14 -> Patty: Here is a follow up comment on, uh ... on the neurofeedback. This person has said that there is no reports of harmful effects, but uh, my personal feeling is that until something is fully tested, you don't know what are the beneficial versus harmful effects. Um, the question is in order to get a large study to see how helpful neurofeedback is, how large a study would be necessary to prove this?
@ 47:47 -> Dr. Schachter: That's a great question and ... it depends on, uh ... how effective you estimate it's going to be. When a clinical study is being designed, the number of people that are projected to be needed to study, uh ... that number depends on what your estimate is of how effective it's going to be. You know, for example, if a therapy is extremely effective, then a relatively small number of people may be necessary. If the difference between a therapy and a placebo is very minimal, but yet definite, it may take hundreds of thousands of people. So, um ... you know, most um ... initial studies tend to be in the range of 50 to 100 patients just to get a sense of how effective it might be and then to plan a very large trial ... and, you know the Epilepsy Therapy Project is ... is dedicated to advancing new therapies for epilepsy, and ... and including therapies like we're talking about tonight, and ... if there was ... you know, uh ... a solidly written scientific proposal for a study evaluating the feasibility or ... develop some evidence for safety and benefit of an intervention like neurofeedback ... that's something that the Epilepsy Therapy Project would review in it's grant review process. The NIH, through it's ... what's called the national center for complementary and alternative medicine funds large scale studies of these types of therapies that we're talking about tonight. And so, there are ways for researchers to get this type of work funded, and, you know, I'm encouraging my colleagues every chance I get to pursue research in all these areas, as I can, and to help identify funding sources so that the work can be moved forward.
@ 49:57 -> Patty: Great. Well, so that's certainly some helpful hints here in terms of where people can go in looking for funding. ...
@ 55:15 -> Patty: What's your view of the work done on neurobehavioral therapy through the Andrews-Reiters clinic?
@ 55:21 -> Dr. Schachter: I'm sorry?
@ 55:23 -> Patty: Ah.. Your view of the work done at the Andrews-Reiter clinic with neurobehavioral therapy.
@ 55:30 -> Dr. Schachter: Um, you know, I've been very impressed by their work, and I've met both Diana Andrews and Joel Reiter, and ... it's a form of treatment that can be studied and ... in clinical research, and ... I think they've made excellent progress. There are a variety of behavioral therapies that are currently being studied. Um... a group in Sweden visited with me this past summer for a month or so and we exchanged information and decided how to move forward with research. So, you know, clearly, any and all cognitive based therapies or behavioral modification therapies are certainly worth exploring and trying to test, because, by virtue of the fact that they're, you know ... they don't involve drugs or chemicals ... uh the, you know the ... potential side effects would appear to be less than in the case of taking some sort of plant product or a chemical. But, uh ... either they're ... I'm aware of probably 5 or 10 different programs that have developed to try to teach individuals to recognize their state of mind or the warning signals that a seizure may be more likely to occur and then to put into place some intervention to lessen the risk of that, and ... I encourage research like that as much as I possibly can.
@ 57:10 -> Patty: Great. ...
The quest continues.