Monday, February 23, 2009

Is TheStutteringBrain or StutterTalk not reputable?

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.

 NSA’s Research Symposium for our Membership, Thursday, July 9, 2009 (10:00am – 12:30), Westin Kierland Resort & Spa, Scottsdale, Arizona.  The NSA is excited to announce that in response to our members’ request for more information regarding research about stuttering, we have expanded our annual conference to include an annual NSA Research Symposium, at no additional cost to our members. The focus of this session will be to get scientific information on the treatment of stuttering directly to our membership, not from the internet or other less reputable sources.

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.

[from Jerry Maguire: For clarification for your blog, Tom. The industry payments from Teva and Indevus for our stuttering work are given directly to my University and are used to support our stuttering clinical and research programs. Also, the majority of my income comes from my role as the Senior Associate Dean of the medical school where Ioversee the educational program for our school. I receive relatively little income from clinical revenue for our stuttering program. My salary is supplemented by my endowed chair received through a philanthropic gift which supports my time to conduct our stuttering program. A significant percentage of our patients seen via tele medicine and in person do not pay for their visits. Those with the ability to pay or who have health insurance do receive billings, but for individuals without such coverage, we provide care at no cost. The support from Eli Lilly and Bristol Myers Squibb is also given to my University for my work in schizophrenia research and education and after percentages are removed to support our school, the remaining funds to go toward my salary. I was the one who voluntarily listed these as potential conflicts in a matter of disclosure so the stuttering community is aware.]


Anonymous said...

Tom, what about you? How would you critique yourself?

To be more blunt. You couldn't hack it in Science research in your area??? (not good enough to be faculty or Scientist?)

You have a PhD in Physics, and what are you doing now?

What have you published, RECENTLY?

It is only can talk crap about others, but what are your motivations? Why not goggle Vivian Sisskin? She is clearly not a Scientist, but does some work on stuttering and Asperger's....

Anonymous said...

The NSA professionals group is run by the Yaruss/Reardon faction of the SID #4 professionals. Sisskin is a Yaruss/Reardon "want to join your club" professional. Lee Reeves is a Animal Veterarian who stutters and advertises himself as a leading expert in the field of stuttering.

Go figure who the "experts" are...

I figure if a dog doctor can claim to be an expert in stuttering, a physicist can as well...

The NSA was a good self-help organization at one time for adults who stutter... Now -at the national level - it's a SID #4 professional group silently opposed to FRIENDS and the SFA organizations because of freakin' professional ego's and undermining by the SID #4 professionals runnin' the NSA nationally. You know... Lawsuits and such... Ask the "professional" board...

Tom - Keep doing what you want to do. I don't think all your stuff is "crap". Some, perhaps, but we all appear to have some ruffage, do we not?

Tom Weidig said...

Wait. I am not the one who wrote in the name of a national association and says that the people I invite are the experts in treatments and that the internet is not reputable. I am countering this assertion and put in nuances. I am sure they all have interesting things to say but they are not Gods but most are just average scientists.

I just speak for myself, and give my thoughts. You can do with them whatever you want.

I simply dispute that you can claim expertise in treatments and research, because it is such a vague area.

And regarding my PhD in physics, I am a trained scientist unlike most others who have trained as a clinician and now do research. I grow up with science and did nothing else than the most intellectually challenging stuff in challenging environments until 27 or so. You can never reach the same level by starting later in life.

That's like learning to play the piano at 25-30. It is too late.

Anyway, the importance is the strength of the argument and not who you are. I am listening to everyone...

And it is not up to me to critize myself, but for you the reader. But please do it intelligently with counterarguments and not by saying I just have a PhD in physics.

Tom Weidig said...

>>> You couldn't hack it in Science research in your area??? (not good enough to be faculty or Scientist?)

I decided to move after my post-doc into finance and worked for a big investment bank. And yes one of the reasons was that I felt that I could never be one of the top theoretical physicists. I was technically (mathematically that is) and in terms of focus not as good as the best of my generation. And that's not the easy undergrad maths but the really tough abstract stuff. But conceptually or intellectually I was up to anyone I ever met and I met many of the top names including Hawking and Brian Greene.

There is no more difficult area in whole science, except maybe abstract mathematics. Everything else is easy in comparison. And I could well have continued a career in science but most likely in a more applied area.

Anonymous said...

Tom, can you recount the story when a stuttering professor told you "what do you know with a PhD in Physics?"

True story? How did you reply?

(and what do you know "with a PhD in SLP")

Also....why so few female Nobel prize winners, less than 10 I think. Obviously, there is sexism. But just sexism and sexism only....

Women SLP scientists/professors = are they contributing to the problem....???

Anonymous said...

You said: "Lee Reeves is a Animal Veterarian who stutters and advertises himself as a leading expert in the field of stuttering."

Need explanation. Lee Reeves has selfish interests (married to Nina Reardon private SLP and stuttering expert). Lee Reeves is basically the King of the NSA....politics!!!

Greg said...

Tom-watching Big Bang Theory as I type. In any event, I wish you'd kill this anonymous option; it seems to bring out the worst in people.

I don't see what the big deal is, to be honest. The NSA is a non-profit organization, so they can't pay any speaking fees. Further, they're not looking for hard-core researchers, pe-se; they're looking for people who can report the data to the general masses. Finally, they're trying to get some producers of research, rather than consumer/critique-ers of research.

I'm tempted to go through these people one at a time, but I'll pass on that. This is a self-help organization, not a true research symposium... so perhaps a little perspective may be warranted here... I feel quite certain that if you called Tammy and told her of your attendance, she could squeeze you on the panel as well; I just wouldn't read too much into this.


A Long Time NSA Member said...

Must agree with the Anonymous II poster above.

The agenda of the NSA has changed since John Ahlbach was forced out. The Reeves/Reardon/Yaruss group has taken over, and politics & $$$ are the focus of the organization.

To be an "expert" in the view of the NSA, a professional must have the Reeves/Yaruss/Reardon seal of approval. Only the SFA has had the nads to "push back" at these people.

Rumors of ethics violations and lawsuits were whispered of at one time... Any truth? Tell us!!!

To me, at the national level, they have made the NSA professional board "researcher approved" a farce. You gotta K the A of those three to get on the "approved" list.

Tom's comments regarding Sisskin, Molt, & Manning are well taken. All are "NSA Seal Approved"...

That said, nothing will change the NSA leadership.

The good stuff - the local chapters - still rule!!!

Anonymous said...

Lets say that a Speech Language Pathologist has pure motives for becoming a therapist, trained in the sciences and in therapeutic applications of what is known at the time. They specialize because of an interest in a particular area and get their Ph.D. and begin gathering data on a larger number or individuals, rather than just those in their caseload. (All teachers, therapists need to gather data on individuals they serve, baseline data, and effect of treatments-during sessions and through carryover strategies, etc...) Now say this therapist becomes recognized because of success. The money they need to continue to investigate the therapeutic techniques they use will not come from veterinary medicine, seismology etc... it will come from within their own field and associated areas like Dr. Maguire's pharmaceutical companies. What is needed is an FDA-like review of the research. It is unrealistic to think that their is a monetary comparison re: physicists with government funding with therapeutic interventions. I do not think there is the same level of interest outside the field itself. Perhaps it is different in countries with a nationalized health care system. The lack of rigorous review of therapeutic interventions is not always a result of sinister motives hiding real results. How would you fund research?

Anonymous said...

From first hand knowledge I know that 1) the information that Dr. Drayna shares with us is not 2 - 3 years old. He is sharing current information, he just won't be telling us the full details of story (i.e. they have found some variants, but won't tell us what gene(s) they are in). True it can take a bit of time to conduct research and analyze data, and there are journals that have a very long lag time from when an article is accepted until when it comes out in print. I know that for the most part it takes on the order of a couple of months to get an article published (often depending on the quality of work and any additional work reviewers want to see).

Second, Larry Molt has some interesting data regarding long term efficacy of SpeechEasy. There are many reasons why it takes time to publish research. Very often they (scientists, not just Molt) get interns to do some of the data coding and/or number crunching. It does happen that sometimes they make mistakes and those mistakes need to be fixed. His long term study that has taken several years and is still not published, actually does not give the SpeechEasy the best representation. (He presented his findings at ASHA Nov. 2008) One of the issues may also be the number of participants that dropped out over the course of 4 years. Participants do this for a number of reasons that do not reflect on the quality of the research.

Lastly, the manufacturer of SpeechEasy (Janus) recognizes that there has been a lot of heavily biased and hotly contented research published on the device. Janus now has a scientific research board that is beginning to fund better quality research to develop a better device. They seem to be doing their part to make the SpeechEasy better and also to produce more and better unbiased research of the device.

I think there are some good things that you mention in your blog Tom, but from someone who has spent a number of years pursuing an education and career based on the etiology and treatment of stuttering, I feel like you consistently miss the mark in a number of places, and it frustrates me. I keep trying to like your blog. I really want to. I really want to give you the benefit of the doubt. I keep wanting to not disagree with at least one thing in every post I've read. But I can't. I apologize. I really don't like to be critical in this way, but I couldn't sleep...

Tom Weidig said...

Greg, I dont really have an issue with the meeting. In fact,I myself organised a similar one!!

It is a great idea...

However, my twist was on presenting science rather than science of treatments which is far more controversial. And claiming expertise is much more problematic.


Greg said...

Point well taken, Tom.


James said...

Greg, how come you are not at the panel. You should! So why don't you contact Tammy and try to get on. If you are serious stuttering researcher (what would you have to report to the public). Aren't you whistle blower like Tom???


Greg said...

Hi James,

Tammy actually emailed me about it, but I couldn't reply in time. They've got a good panel though, and I'm sure a good time (and education) will be had by all...