Monday, June 30, 2008

I am off to Oxford on Thursday

I am going to the Oxford conference which is held from Thursday to Sunday. I will present a poster on logical fallacies when trying to assign a cause to the onset of stuttering in children, and I will give a talk on viewing stuttering as a disorder coming in two phases and acting on two levels.

Other interesting (:-)) speakers will include: Per Alm who talks about Fluency disorders: a discussion of possible causes and mechanisms, from a neuroscience perspective (I hope he will tell us something new as I heard talks with similar titles before) and on Temperament and Stuttering (where he will hopefully debug the current obsession with temperament as a/the major factor) Jerry Maguire has a poster on the results from the Pagaclone study. He told me that he cannot attend due to his father's 80th birthday (Happy Birthday! I met his father in October in LA) but his colleague Dave Franklin will be there. Jerry gave a workshop at the NSA conference this week where he talked about the results. I will report on the poster after the Oxford conference.

The conference program feels an adulation for the Lidcombe program. There are at least 10 talks, and of course they all talk about the "evidence" which I still cannot see clearly. That's probably because my statistical and critical thinking pain threshold is much lower! So I am still uncomfortable with the adulations.Even with positive evidence (which would be good news for kids) they of course forget that possibly any other treatment might very well give similar results, because only Lidcombe was tested. But the key sucess factor of Lidcombe is in my view that there are well-defined rituals for therapy; have you ever seen a religion without rituals? Humans need guidance and are habit aninals, and so do therapists. They love rituals even if the reasons behind the rituals are not so clear or well proven.

Here are a list of talks I will probably go to either because I like the topic, like the speaker, or have a low opinion of the topic or the speaker and see whether I can resist asking a critical question. Remember this is therapist land, the land of consensus, so everyone is nice to everyone else even if they have another opinion or the research "findings" are obviously flawed! Actually, to be fair, most don't realize that the methodology is flawed. So here they are (see program here):

Angela Morgan & Sheena Reilly, Murdoch Childrens Research Institute Functional brain activation differences for motor versus language regions in adults with and without stuttering: An fMRI study

Lesley Kuhn, University of Western Sydney & Ann Packman, The University of Sydney Looking at Stuttering Through the Lens of Complexity Theory Nicole Spindler, University of Goettingen Altered lateralization of cortical control of movement timing in persons who stutter

Sharon Millard,The Michael Palin Centre for Stammering Children & The University of Reading, Susan Edwards, The University of Reading & Frances Cook, The Michael Palin Centre for Stammering Children PCIT: Adding to the evidence Rosalee Shenker, Montreal Fluency Centre The Lidcombe Program 10 years later; what have we learned - One clinic's experience

Ann Smith, Purdue University New Windows on the Onset of Stuttering in Young Children
Hans Månsson, University College Copenhagen Early Childhood Stuttering: A Systematic Framework of Predictive Factors for Persistence and Recovery

Naomi Sakai, Mejiro University, Japan Brain activation in adults who stutter under delayed auditory feedback: a fMRI study

Gerald A. Maguire, University of California, Irvine Medical Center Pagoclone, A Novel Nonbenzodiazepine, GABA-A Partial Agonist, Reduces Objective and subjective symptoms of stuttering

Tricia Zebrowski, University of Iowa Why Stuttering Therapy Works: The “Common Factors” Susan Block, La Trobe University, Melbourne Significant issues in stuttering: Managing stuttering in the next decade

Mark Onslow, Australian Stuttering Research Centre, The University of Sydney Treatment of Early Stuttering in the Real World: Lidcombe population research unveiled

Per Alm, Danish Information Centre for Stuttering & Uppsala University, Sweden Stuttering and Temperament, a review


Anonymous said...

So what were the pagoclone results like?. Will they be moving to FDA Phase III trials and will any announcement be happening soon?

When Dr Maguire gace his results to the NSA conference what were they?

ig88sir said...

I met Dr Maguire at the recent NSA conference in Parsippany, NJ. He told me that pagaclone trial III will happen. BTW I was on trial II, for roughly around one year, and it had no perceivable effect on me. Just want to let you know it doesn’t work for us all!

Anonymous said...

Is there any indication that the drug only works on certain types or sub-types of stutterer?

Tom Weidig said...

Thanks for your comments!

Yes, there seem to be sub-types in medication drugs and *real* drugs! But it is unclear why and impossible to know beforehand.

So Phase III seems to go ahead.

Anonymous said...

I've been experimenting with phenibut, which is similar to pagaclone in that's its also a GABA-A partial agonist. This has been used since the late sixties in Russia for the treatment of PTSD and Stuttering.
its a way to get a sense I think if pagoclone will help your particular subtype(if such things genuinely exist) without having to wait another decade for all the pharmaceutical beurocracy to get over with.
you can pick it up onlne as a nutritional supplement.

You develop tolerance very quickly, in as little as 4-5 days depending on the dose, but it may prove a good tool to help assist with getting thru a job interview or a first date.

I'd really like to get a few more people to try it along side be and report their results as well.