Is TheStutteringBrain or StutterTalk not reputable?
Posted Feb 23 2009 12:00am
If you are interested in research and a member of the National Stuttering Association (you don't even have to be a member, I guess), they have an interesting research symposium at their annual meeting in July: see the details .
I sincerely hope that the NSA is not implying that all information on the Internet, especially blogs and podcasts, are not reputable. I beg to differ, and NSA should remove this sentence. StutterTalk and Judy Kuster for example do a very good job. In fact, we are more reputable in the sense that we have far far fewer conflict of interests as you will soon see.
To show how we add value. Here are a few issues you should be aware of, and you might even want to ask them questions about in case you attend.
1) Do not let yourself be blinded by someone writing that they have invited one of the nation's leading experts. Who decides who is the leading expert and who decides who is an expert? If we were to name those clinicians as experts who have a high sucess rate in turning us into fluent people, the number of experts would be very low indeed. In fact, the McGuire program is probably not less effective, but no-one would call the instructors as experts, right? Why not? You need to be especially carefull with clinicians. It is difficult to judge the quality of research, and good networking, presentational, political and lobbying skills carry you a very long way.
2) Denis Drayna is in my view the leading geneticist in stuttering (and as far as I know the only full-time geneticist working on the topic with a research team) and the only real professional scientist on the panel. But he has little to say about treatment of stuttering and I am sure he would admit this readily. I tend to believe that he is on purpose not trying to delve too deep, because he works within the paradigm: give me a disorder, I run the genetics algorithm, and lets see what genetics tells me. In fact, the only thing he would say is that genetics will not help us at all in treating stuttering. Or, he starts spinning (I guess on his research grant applications!), and you might hear him say that one day we have the possibility of gene therapy, and if we know which genes are responsible we know what causes stuttering. Maybe in 20 years. You also need to be aware that he is not telling you all he knows. His goal is most likely (and so would mine be if I were him) to find the stuttering genes, and get famous with a Science or Nature article. So he cannot talk about new research before the article is public, and that often takes many months if not years. So when he talks to you, it's like stepping into a time machine and talking to him 2-3 years ago. But you can catch the occasional glimpse into his mind on my blog: see this piece of news made public by Greg who Denis Drayna had to inform by law. So if you attend the talk, it's the news from 2-3 years ago!
3) Jerry Maguire is the most active and influental player in pharmaceutical treatments, but note that his biography includes "As a matter of disclosure, Dr. Maguire receives research grants, consulting fees and/or honoraria paid to his university from Indevus, Teva, Eli Lilly and Bristol-Myers Squibb." Moreover, his biggest source of income is his practice where he and a colleague prescribes medication for treating stuttering and relating conditions receiving patients from all over the US, and from telemedecine consultancy where he has patients via the net but the medication is prescribed by local doctors registered in that state. He is also heavily involved in the Pagoclone trials. So he has a unique experience, but there are plenty of conflict of interests. Because of all his involvements, he cannot be seen as an independent reviewer of the field. Like Drayna, talking to Jerry is also a bit like stepping into a time machine, because again he cannot divulge the current state of research. And, it is also worth mentioning that he is a medical doctor and lecturer first, and a researcher second. [see a clarification by Jerry Maguire below]
4) Walt Manning. I was sitting next to him at a dinner, but I cannot really say much about him. He seems mostly to be a clinician who also does research.
5) Larry Molt. I am not sure what to think: He has given SpeechEasy a cover for their close-to-fraudulent marketing campaign, unintentionatilly or not. He holds a heavy responsibility, because he has accepted money from the SpeechEasy company and after 4 years has not published any outcome study (as far as I know). In fact, I can only find one unrelated paper where he is a co-author. Moreover, he has not forced Janus Development to update their outcome studies on their website. He has also not replied to an email I sent him some time ago, for more information. So if you are at the meeting, you need to ask him these questions: Why not published article? Is he happy with SpeechEasy mentioning him on the website without final outcome results? How much money did they give his research group? Has he any other connection with them? Does he agree that they use his name as a cover for very weak outcome literature?
6) Vivian Sisskin. I never met her before, and never heard of any research findings.