Monday, May 31, 2010

Why would I send a child to treatment?

Why would I send a child to early childhood intervention?

1) to check that the child doesn't have any other issues.

2) to avoid that the child tells me 20 years later: Why didn't you do something when I was young?

3) because the worst case scenario is nothing happens.

4) to hope that a therapist can reduce severity of symptoms.

5) to give the child tool to deal with stuttering events.


But Is it effective? Here are my conclusions:


Sunday, May 30, 2010

StutterTalk Interview

I should have published this months ago. So let's see whether stuff has changed.

Jerry Maguire, chief investigator of the Pagoclone trial, was on StutterTalk.com. As I speculated, most patients from the Phase IIb trial have completed the trial period. In two months' time, all will have completed. So that would take us to the end of the year. I forgot the fact of the data being locked and the blinds only being removed once all results are in. That definitely makes sense. In a double blind trial, neither the patient nor the reseacher know which pills are placebo, i.e. a sugar pill, and which contain the to-be-tested compound. So they do not know more internally than we do. However, from the outcome measurements, they can already take averages across all participants (from high dosis to no dosis placebo). You should be able to look at the time evolution. I would predict that the outcome went positive after the first testing and then slowly declined.

Jerry expects the results in late winter. That sounds reasonable. However, do not expect a serious debate at that moment, because they will mostly likely only release a statement but not a scientific paper or the raw data (unless there is a FDA requirement to do so). Jerry also announced that the Phase IIa has now been accepted for scientific publication. The publication has taken far too long for a serious debate. Who cares about these

Saturday, May 29, 2010

Where is the brain Anne-Marie Simon?

A reader sent me a link to an interview with Anne-Marie Simon by the French magazine L'Express:
A quoi le bégaiement est-il dû?
Le bégaiement est un trouble de la communication affectant la parole. Personne ne connaît précisément son étiologie. Que ce soit en France, au Japon ou aux Etats-Unis. On peut parler seulement de causes par la preuve. Il existe ce que l'on appelle les facteurs 3P. Pour Prédispose l'enfant, Précipite le trouble et le troisième, le Pérennise. Lors d'une consultation, ce n'est qu'après avoir rencontré famille et enfant que l'on pourra essayer de comprendre quel facteur a agi. Ce peut être les trois comme un seul. La maladie touche des domaines comme l'endocrinologie, la psychiatrie, ou encore la neurologie. La génétique a permis de voir qu'il existe des familles de bègues, qu'un parent bègue a trois fois plus de risques d'avoir un enfant qui bégaiera, que les vrais jumeaux ont six fois plus de risques que les deux soient bègues que pour des jumeaux normaux.
Here is the translation:
What is causing stuttering?

Stuttering is a communication disorder affecting speech. No-one knows exactly its etiology. Be it in France, Japan, or the US. Only evidence let's us speak of causes. There are three factors: predisposing, triggering, and perpetuating the disorder. Only after having met the family and the child can one try to understand which factor was relevant. It could be all three acting as one. The illness touches on fields like endocrinology, psychiatry, and also neurology. Genetics shows that stuttering families exist, that a stuttering parent increases the risk of having a stuttering child by three, and that true twins (with identical DNA) are six times more likely to develop stuttering than normal twins.
I am amazed that she does not mention the very clear findings in brain imaging on structural and functional abnormalities in the neurology of the stuttering brain. How does she think that genes are making families stutter, increasing the risk for kids to start stuttering, and give true twins a six times greater chance that both stutter? If not by neurology? Saying that the disorder "touches" neurology is like explaining babies to your young children by saying that daddy's penis is touching mummy's vagina and then a baby grows in mummy's belly. I wonder why she is so reluctant to tell the truth. I have two ideas: first, the French psyche and establishment is just too much focused on the psycho-analytical causes so anything more than touching would be a scandal! Second, she cannot explain how people who stutter can be fluent and still have a dysfunctional neurology, and therefore the brain findings must be wrong or her brain hides them from her. In the same sentences she says that stuttering touches psychiatry. I have never heard anyone say that. And endocrinology is also a wild guess.

Catherine Montgomery died

I do not know her personally, but a reader does
I don't know whether you've heard that Catherine Montgomery died last night. I knew her particularly in the course of a three-week intensive speech therapy program in 1998 and a one-week refresher program a couple of years ago. Did you ever meet her? She was a very special person and touched a lot of people's lives... her work and the work of her institute was much broader than improvement of people's speech as narrowly defined. There is a big benefit in making people feel better about themselves and their lives, and she certainly did that.

Friday, May 28, 2010

A sane reader

At last a reader who is realistic about what NLP can offer and what stuttering is about:
I've never tried NLP for my stuttering (but would love to find a sensible specialist who has worked with stuttering in my city and give it a try!) but I believe stuttering to be caused by genetic/physiological factors as well as psychological.

I don't think it's completely pointless to approach stuttering through the door of what's considered "the mind" vs. "the body", because in reality there's no such division as individuals. We are Mind & Body beings, intrinsically entwined. Even our smallest thought is backed up by a number of chemical and physiological processes, so why not stuttering? The evidence of an organic reason for stuttering doesn't overrule a psychological component (as the machine to measure "the mind" hasn't been invented yet)

I say give NPL a try, if you find a reliable specialist. even if it doesn't cure you (highly unlikely) but provides some help, perhaps in some situations, it's worth the try. Why? Because up to this point there's not a cure, not even a cohesive explanation of what causes stuttering, so why not be open to whatever options there might be? Even if they work for some people only, you might be among the fortunate ones who experience some improvement in your speech, for whatever reason.
What if NPL doesn't hep you? Well, again, there's no known cure, so it's just reality.

Thursday, May 27, 2010

A bad speech situation: a symptom or trigger for a bad period?

I recently had a speech situation where I was more dysfluent. I am wondering whether this means the beginning of a bad fluency period or is it just a one-off?

My speech might have been worse, because I am entering a bad period and this situation marks the beginning of that period. So there is nothing I can do about this.

Or, maybe it was just a one-off because the situation was especially stressful. Again, there is not much I can do...

Or, maybe this one-off could well lead to a bad period, because I am more fearful of speech situations and I expect to stutter more... So I need to work on re-gaining my confidence with practicing?

Wednesday, May 26, 2010

Reply from author of stats paper.

Some time ago, I reported about a statistical analysis of stuttering risk factors: see here. They found no overwhelming risk factor, which is not surprising if genes and a specific brain insult plays a role. The lead author, Dr Vladeta Ajdacic-Gross, was so kind to answer my questions. Here they are:

1) How much of the variance can you explain with the found risk factors? (Incl. gender)
The Nagelkerke's R2 is 0.04, what was no surprise after excluding malingerers and SCL-high-scorers from the sample. Moreover, we found no strong risk factors in the analysis.
2) Did you look at other developmental disorders? I would be interested to know whether Tourette for example has similar risk factors.
We have used all potentially relevant variables which were available. Unforunately, information about Tourette's syndrome and several other issues of interest was lacking. We will have some space for a replication of this analysis under hopefully better conditions in a new large scale project we are preparing in psychiatric epidemiology.
3) How do you control for over-fitting issues due to the many variables? How many do you have?
Over-fitting is supposed to be a minor problem since the results are smoothed after sacrificing a great deal of variance (see point 1 above). Moreover, the frequencies in many cross-tabs (see

Tuesday, May 25, 2010

Pseudoscience 70 years ago and now


Here is a cure for stammering 100 years ago, spread by Dr Travis, a professor in pseudo-science at the University of Southern California. And here is pseudo-science and a cure for stammering today spread by Dr Rosemary Hayhow in this article's abstract:
The Lidcombe Program is a parent-based behavioural treatment for early stuttering. Quantitative studies have shown it is an efficacious treatment for eliminating stuttering in children of 6 years and younger. This study explores parents' experiences in order to understand more about the process of implementing the Lidcombe Program. Twenty-one in-depth qualitative interviews took place with parents of 14 children who showed a range of responses to treatment. Six parents were interviewed twice so that changes over time could provide further insights. The data was analysed using an inductive approach supported by NVivo qualitative software. This interview data suggests that parents' experiences of the Lidcombe Program are influenced by their ways of making sense of the principles and procedures of the programme and how these fit with their understanding of stuttering, parenting and their children who stutter. Parents experience the Lidcombe Program as satisfying and relatively simple when therapy proceeds straightforwardly. When progress is slower or erratic parents perceive the treatment as more complex and confusing. Failure to adequately address difficulties with the Lidcombe Program can reduce its therapeutic impact and lead to parental distress. These parents' perspectives provide knowledge about the Lidcombe Program that is not recorded in the published quantitative studies.
I simply cannot believe that she wrote "Quantitative studies have shown it is an efficacious treatment for eliminating stuttering in children of 6 years and younger." First of all, she has not understood the

Monday, May 24, 2010

I like Cavtat conference format

The Cavtat conference is on at present. I like the format of the conference. There is a great emphasis on discussions, and not on monologues by the presenters. The talks are restricted to 20 or 25 minutes followed by a discussion and formal exchange with another 45 minutes or so. Such a format encourages a real debate, but its success depends very strongly on the willingness and ability of the conference participants to engage in real debates. And that's where I see an obstacle; most clinicians and researchers are unwilling to speak their mind and tip toe around controversial issues. And many are too scared to speak in front of other people and willing to defend their ideas or ask probing questions, skills that they happily teach their stuttering patients! And many are unable to engage in scientific or intellectual debates because they have intellectually grown up in an clinical environment with a lack of role models, or are simply unable to have such debates without falling for fallacies. In any case, there is not more one can do but dance with the girls that are on the ball. The conference is a good initiative by Suzana Jelcic Jaksic and Mark Onslow.

Disclaimer: This praise does not extend to the content and quality of the presenters but only for the format as such!

Tuesday, May 11, 2010

Are we to be blamed for stuttering cure promises?

Check out Peter Reitzes' superb interview with Janus' Speech Easy CEO Alan Newton. Peter asked some very tough questions. That's how we should debate in stuttering. Of course, the worst thing in one's battle against a declared enemy is to actually get to know your enemy better. (It's far better to fight Adolf Hitler as the impersonation of evil rather than also thinking of him as a human being being the nice uncle children reportedly adored, the one who painted much better than I ever did, and the friendly and fair boss his secretaries talked about.) Having listened to Alan Newton, I got more and more the feeling that his perception, and he might be right, of him and Janus being a part of the whole system, and not actually the driving force behind the stuttering cure claims. I can't remember the exact words, but he said something along the lines: We actually need to calm our customers down and bring them back to reality, because they are so excited about the prospect of a cure. So actually the real driver of the cure industry is not really Speech Easy, Oprah Winfrey, or some dubious therapists, but ourselves! We want the cure, and we want it sooo badly. We want to do what everyone else can do: speak without thinking about speech fluency. This emotion is strong, and overrides every rational thinking. We fall for the stuttering cures, because we want to fall for them. We can only be exploited by others, because we let ourselves be exploited. Oprah, Janus, and others do nothing else that give us confirmation of what we always wanted: to find a cure for our stuttering.

Monday, May 10, 2010

How not to review outcome studies

Bert will probably hate me for undermining his review, but that's what a scientific debate is. On the mailing list STUTT-L, Bert Bast writes (in the name of the Dutch Stuttering Federation?):
I would like to jump in on the '80% spontaneous recovery' especially as a measure for the (lack of?) success of early intervention - e.g. by the Lidcombe approach.
... I got these data from literature:

· spontaneous recovery 50-74%;

Sunday, May 09, 2010

BSA and MPC behaving childishly

In two weeks time, there is a conference at Cavtat (Croatia), Stuttering: A Clinical Symposium 2010, focussing on treatment of stuttering. I have spoken about the conference here.

A lot of wrangling about attendance. The BSA (Norbert Lieckfeldt) and MPC (Sharon Millard) have cancelled their attendance (compare the list of my previous post to the current list), because rather childishly (or politically) they disagree with some speakers like Schwartz and Webster, and do not want to be seen as propping them up.

Let me be very clear: Not attending a conference because someone whose ideas you don't like is completely and totally unscientific. If you don't like what they are saying, then make your counter-arguments well known at their talk or the conference. What better opportunity to learn from other therapists, have a debate, or just to make your concerns known than at their talk? They can't run away, and them avoiding the question is hurting them not you. But no, it has to be done the covert way. Where is the debate?

Looking at some presenters, my blood is boiling again. I can see them repeating the mantra of "Lidcombe has been proven" without having ever seriously looked at the statistics or taking into account counter-arguments. Falling into every fallacy trap. So my plea again and again: CLINICIANS FOCUS ON YOUR THERAPY, DISCUSS PRO AND CONS OF METHODS, but don't talk stats or outcome studies because you have no clue what you are doing!

I also note that Per Alm is not on the list anymore as discussant. Maybe he is just too busy...

Tuesday, May 04, 2010

NSA conference on July 7th-11th


Check out the NSA conference in July 7-11th. I have never been to the US conference. Still waiting for being invited by someone... So I might never ever attend... ;-)

They also have a research symposium again. De Nil, Maguire, Yaruss, and Langevin are attending; my listing being in terms of scientific rigour...

Free articles on gene discovery

You can find the original article on the gene discovery here. And an editorial on the discovery by someone called Simon Fisher ending with the following questions:
Are mutations that affect this pathway present in independent cohorts of people who stutter? Why would dysfunction of a basic process found in many cell types selectively affect the neural circuits involved in speech fluency? Do other undiscovered genes associated with stuttering have roles in metabolic pathways? Can these data explain whether early stuttering will persist? Are there new prospects for treatment? As with other neurodevelopmental disorders that affect speech, the task of connecting the dots between genes and stuttering is just beginning.

Monday, May 03, 2010

ASHA candidate does not care about ethics!

Peter Reitzes rightly asks the candidates for the ASHA board for more enforcement of ethical behaviour of ASHA members but got turned by one of them, Neil Shepard, down. He responds
You wrote, “To actively monitor the language used in advertising services provided by members I do not feel is an appropriate use of the resources at the National Office.” Let’s take a closer look at ASHA’s resources. The 2008 ASHA Audited Financial Statement reported that the Program Expenses for “Ethics” was $347,956. The 2008 ASHA 990 Form reported that ASHA’s Executive Director, Arlene A. Pietranton, made in total compensation more than $450,000. It is striking that a single person’s total compensation at ASHA is about $100,000 greater than the reported Program Expenses for ethics. If one believes that the way an organization spends its money reflects its priorities, one may rightly or wrongly assume that currently, ethical standards are not a high priority for ASHA.

It is amazing to see the extent of ASHA CEO's compensation which pales in comparison to European salaries, and to see that it's higher than the total spending on ethics! And Neil Shepard reveals himself as totally ignorant of ASHA ressource allocations. I wonder whether other candidates to any better?