False negatives might be a big problem

I have just changed my view on trials after another email by Willme:

With [Correction Tom: Assuming] several possible (neurotransmitter) causes of stuttering identified, the test results for any one drug applied to a seemingly homogeneous group of stutterers will be diluted. The majority may not respond at all. Morever, even if heterogenity is recognized and a subgroup of stutterers is identified (say responding to BZ's) any one particular BZ, like ativan, may not work for all of them. So the test results could be even further diluted. What this means is that the likelihood of "false negative" test results may be more of a threat than "false positives." With false positives, you take the drug and if it is not efficacious you stop taking it. False negatives imply that a promising drug for a subpopulation of stutterers may fall by the wayside forever.
I hope that there are active research programs out there involving DNA studies to identify the cause(s) of stuttering. I'm quite convinced that genetic markers will need to be found for any substantial further progress.

He is completely right in that a medication that works for a small subgroup will be rejected in a standard random control trial. And everyone thinks it's not working. Different stutterers also react differently to real drugs. Per Alm wrote about this in his PhD thesis. So we need to be able to discriminate between different subgroups, and that's very very difficult because it means we understand stuttering!!! Our best hope is genetics, but we also know that not all stuttering is genetics. So this is not an easy avenue either.

I could even turn the argument around, and say that because no trial has been very successful so far, stuttering must have subtypes.

And then I could argue that drugs that do work, must be acting on secondary symptons and not on primary causes. And this might be the case with Pagaclone.

Check out this NY times story on "On the Horizon, Personalized Depression Drugs." for inspiration on what could happen for stuttering.

Guest-Blogger Willme on ativan (I)

Willme is my next guest blogger and talks about his experiences with legal drug prescriptions and their impact on his stuttering. Interesting thoughts, and he has a PhD in physics like me. :-)

I started stuttering in early childhood. My first experience with speech therapy occurred when I was 13 years old. The therapy involved voluntary repetitions of the first syllable of each word uttered and the application of this technique in a public context. This approach didn’t work for me. I basically refused to practice this technique in public—perhaps I was too embarrassed, self conscious, etc.
When I started puberty very late at the age of around 17 my fluency substantially improved. I joined the National Forensics Society and on the debate team and engaged in forensic speaking. By the time I entered the 12th grade, my disfluency had returned. Maybe temporary changes in brain chemistry at the start of puberty offered a temporary “cure?
My next speech therapy occurred in my later 20’s after I completed graduate school. It was a group therapy setting with four other males in their late teens and early 20’s. There did not seem to be any particular therapy techniques involved other than making eye contact and the admonition to “just stop it.” Well, strange as it seems, it worked for me. Within two weeks, I became, as far as I could tell, perfectly fluent within that group context. So I called it the “power of positive thinking” (POPT) or the “mind over matter” (MOM) approach. For the next couple of months before I left the group, the POPT/MOM approach did not work for the four other people.
I then started four years of psychotherapy (twice a week) and began teaching in a graduate program at a university. The POPT/MOM approach tided me over but I found that for anxiety inducing situations (speaking before a class or at a conference) I had to expend a huge amount of energy preparing myself, both content-wise and emotionally (psyching myself up?). Also, during psychotherapy, I found that I would be disfluent when discussing emotion laden subjects.
After years of teaching and research, I moved to a career in consulting. Public presentations were fewer than in the teaching career but the POPT/MOM approach still worked (still requiring a huge expenditure of energy). A few years into this period I began to take ativan (Lorazepam) for anxiety and eventually found that at a 2 mg dosage virtually eliminated disfluency. And there was no need for extensive content/mental preparation before presentations. I would merely engage in “normal” preparation, take 2 mg of ativan about a half hour before the presentation (on an empty stomach) and, miraculously, I was perfectly normal.
My last eight years I returned to a career in university teaching and continued with the ativan therapy. I would teach two graduate courses per term and present papers at approximately 4-5 conferences per year. The courses might be scheduled say for Monday and Thursday between 6pm-9pm and the 2 mg of ativan tided me over for the three hours. So my intake of ativan was sporadic rather than regular, which is important because ativan can be addictive, its effect lessens if used regularly, and, hence, you may require larger dosages. I would certainly not recommend the use of ativan to anyone who is an addictive personality.
...to be continued...

NOTE: PLEASE CONSULT WITH A DOCTOR BEFORE TAKING ANY MEDICATION TO TREAT STUTTERING!

Guest-Blogger Willme on why ativan might work for him (II)

Let’s try to understand what’s happening from the research perspective. Given that ativan 2mg has worked so well for me, I am puzzled that no one else among the estimated 3,000,000 stutterers in this country has discovered its efficacy. Am I the only one for whom this drug therapy works? If it works for other stutterers, for what fraction of them is ativan effective? Is what I’m experiencing a placebo effect whereby I go from some level of disfluency to virtually a zero score on the stuttering severity instrument?
Ativan (technically known as lorazepam) is a benzodiazepine (BZ), which binds to the BZ receptors in the brain. BZ receptors seem to be coupled to receptors for the inhibitory neurotransmitter gamma amino butyric acid (GABA), which is the most prevalent neurotransmitter in the brain. BZ and GABA receptors coexist together in an interactive complex known as GABA-BZ (Receptors, Restak, R.M., Bantam Books, 1994, pp 166-167). BZ’s (the most notorious of which is valium), inhibit anxiety just like GABA. So ativan is regarded as a GABA agonist since it binds to GABA-BZ receptors and when it does neurons are less likely to discharge. Correlates of anxiety involve excitation (more rapid firing of neurons) and BZ’s reduce this excitation. By the way, previous studies have shown the ineffectiveness of BZ’s with respect to improving fluency (The pharmacology of stuttering: a critical review, Am Journal Psychiatry. 1991 Oct; 148(10):1309-16.Brady JP). One of the studies cited in this review that I acquired used valium (diazepam) at 5 mg dosages. I don’t know what the conversion over to ativan dosages is.
Now most of you have heard of pagaclone, currently in phase III trials as a palliative for stuttering. Pagaclone is identified as a partial GABA agonist, the “partial” referring to its lack of sedative and withdrawal effects. It too binds to the BZ receptors. The most recent press release of Indevus Pharmaceuticals indicates that phase II trials have been a roaring success in reducing disfluency. The way that pagaclone was identified as a potential palliative for stuttering was that in previous trials testing it as an anti-anxiety agent there happened to be at least one stutterer in the test group and he (she, they) reported a marked improvement in fluency levels. So to answer one of my questions above, there are at least two of us who recognize that GABA agonists/partial agonists may greatly improve fluency. To my knowledge, pagaclone was never released as a prescription drug to treat anxiety (in spite of claimed success in the anti-anxiety trials), so the possibility does not exist for our buying it and using it off label for disfluency.
A second major research direction in the current pharmacological treatment of stuttering. involves basal ganglia/dopamine system (BG/DS) theories. This line of research seems to be mutually exclusive from the GABA/pagaclone efforts or, at least, researchers have not yet found any connection between them. The BG/DS theories revolve around malfunctions in the basal ganglia very deep in the brain and the presumed production of too much dopamine, which is another neurotransmitter. Dopamine is associated with addictive illegal drugs, Parkinson’s disease (a lack of dopamine), and reward systems. Risperidone is a dopamine antagonist and has been claimed to improve stuttering in clinical trials (for a good review,see Stuttering and the Basal Ganglia Circuits: A Critical Review of Possible Relations, Alm, P. in Journal of Communication Disorders 37, 2004, pp 325-369). This review article also cites studies in which stimulants were used to increase dopamine resulting in improved fluency. So the author of this article concludes that there may be two types of stutterers, ones who improve on dopamine antagonists and others who become more fluent on dopamine stimulants.
Incidentally, I’ve tried the antianxiety drug Buspar which binds to dopamine receptors ( a moderate affinity for D2-dopamine receptors) and reduces the influence of dopamine (a dopamine antagonist?). I found it has no effect on either my fluency or my anxiety. Fifteen minutes after ingesting the drug I get a buzz in the brain and feel spacey for about half an hour. And even more incidentally, I’ve tried a variety of antidepressants (serotonin uptake inhibitors only) and these have had no effect on me whatsoever.
So the question is: Are there indeed different subclasses of stutterers who respond to different treatments—those with not enough GABA, those with too much dopamine, those with not enough dopamine, etc. Having trained as a scientist, I would prefer to follow the “law of parsimony,” and try to explain a phenomenon with a single theory rather than a collection of theories. But nature may not be so neat. If the subclasses of stutterers multiply, then it may be very difficult to get positive results from clinical trials. For example, if only some fraction, F, of stutterers respond to pagaclone, and that fraction F is too small (say less than 10%), then the trials may not be able to identify significant differences between the group receiving the drug and the one receiving a placebo. In addition, if the fraction is too small, the drug company may feel it not worthwhile to market the drug.
To answer the question as to whether the fantastic results that I experience with ativan 2mg is a placebo effect, I have some anecdotal evidence to offer. Several times before teaching my 3 hour graduate class I had forgotten to take the ativan and found at the start of class that I was disfluent. After several minutes of this I realized what the problem was. The second bit of evidence occurred at a conference in Texas at which I was giving a presentation. The presentation was scheduled just after lunch and prior to the presentation I had a Tex-Mex meal which impeded the ingestion of the ativan that I did take after the meal but before the presentation. Once again—a lack of fluency. While this evidence isn’t as good as a controlled double blind experiment, at least I’m convinced that we don’t have a placebo effect in play here.
Given my experience, you can understand my enthusiasm for the pagaclone trials. Like most of you I’m impatient to try it, but I think it will be more than a year before it comes on market, if indeed it reaches market. Then we’ll have to worry about price gouging by the pharmaceutical industry.

NOTE: PLEASE CONSULT WITH A DOCTOR BEFORE TAKING ANY MEDICATION TO TREAT STUTTERING!

Pagaclone open-label release misleading??

Here is what Indevus wrote about the new open-label results for Pagaclone:

The open label data demonstrated an improvement in nearly all efficacy measures compared to baseline that was at least double the magnitude seen in the initial 8 weeks of double-blind treatment. During the 8-week, double-blind portion of the study, patients who were randomized to placebo experienced a mean reduction in the percentage of syllables stuttered of 5%. After three months in the open label portion of the study, these same patients experienced a 31% mean reduction. These open label gains lagged slightly the gains made by patients originally randomized to 8 weeks of active pagoclone (5 months total exposure). For those patients randomized to pagoclone in the double- blind phase, the mean reduction in percent syllables stuttered was 18%, while in the open label phase, the mean reduction was 40%.

Similarly, data for the Clinician's Global Impression of Improvement (CGI- I) showed considerable gains during the three months of open label treatment........

Superficially good results. But I am a bit suspicious due to this relevant quote later in the press release:

More than 70% of the 119 patients who entered the open label phase of the EXPRESS trial were included in the three month open label data being presented at NCDEU.

In effect, 30% of the people decided to discontinue the use of Pagaclone. I would not be surprised that only the people who had a positive effect continued, so it is not surprising at all that there was at "least double the magnitude seen in the initial 8 weeks of double-blind treatment"? And most importantly, should you not actually evaluate all the patients after the 3-month open label, even those that did not take part to see the overall efficacy of Pagaclone?? Their statement of improvements is a bit misleading, because they only mention much later that only 70% took the open-label invitation up.

New Pagaclone results are out!!

Indevus today announced some further results of the Phase II pagoclone trial, along with some results from the 3-month open label period (after the 8-week initial double-blind trial), see here. More later.

Be a guest blogger!

This is an invitation to all the readers of TheStutteringBrain to be a guest blogger. If you feel you have an interesting idea, want to raise an issue, discuss a research paper or had an interesting experience, please email me at tom DOT weidig AT gmail. I only require that the topic of your post is vaguely related to the science/research theme of my blog, namely to Sharing with you the on-going revolution in the understanding of Persistent Developmental Stuttering.

Sandra Merlo as guest blogger (I)

I am happy to present Sandra Merlo from Brasil as The Stuttering Brain's first guest blogger. It is her talk at the ISA conference on Personal and professional experiences:

My stuttering started between 3 and 4 years old. It was near when my brother was born, so my parents concluded “I was jealousy and I wanted attention”. Some years later, my brother and a cousin also started stuttering and my family concluded they were imitating me. The fact was that stuttering affected several members of my family. From this fact, I had my first wrong lesson: stuttering could be learnt from imitation.

I remember that when I was 6, I already had well established strategies of avoidance (speaking less, changing words, changing phrases, not speaking with some people and so on). Even so, I could not hide stuttering all the time no matter how hard I tried. But my mother repeatedly said I was not trying hard enough, because if I really wanted I would get it. The fact was that I could not control stuttering. From this fact, I had my second wrong lesson: I did not have enought will-power.

When I was a child, I also realized that my stuttering was better in some days, with some people and talking about some topics. The fact was that I realized my stuttering had an oscillation. From this fact, I had my third and fourth wrong lessons: stuttering should be psychological and if sometimes I was better, if I tried hard enough, I could always be better.

When I was a child, I also noticed my family, teachers and friends almost never talked about my stuttering. The fact was that there was a great silence about stuttering. From this fact, I had my fifth wrong lesson: stuttering should be a so shameful thing since no one talked about it.

When I was 10, my Portuguese teacher said I had to go to a “speech-language pathologist” (SLP). I had never heard this expression before. I did not know what a SLP did. I told my mother I would like to go to a SLP, but she remembered me my pediatrician has already explained that I just had to repeat fluently what I said stuttering. According to my pediatrician, if I did this, I would be cured from stuttering. The fact was that I had wrong professional advice. From this fact, I had my sixth wrong lesson: I did not need a therapy because I could overcome stuttering all by myself.

When I was 14, I was in a great suffering, suffering entirely alone, feeling very imcompetent and with absolutely no hope. So, I decided to commit suicide.

(To be continued…)

Sandra Merlo as guest blogger (II)

But then, my English teacher realized I needed help and, for one year, he constantly talked about my qualities and my future in our classes. So when I was 15, I decided to be a SLP, because I desperately needed to understand the world I was living in.

I was admited at University of São Paulo, one of the best universities in Brazil. For the first time in my life, I had a positive consequence from my stuttering: my personal experiences with stuttering provided me with a great background to understand scientific knowledge in my years of SLP School (1997-2001). Scientific knowledge quickly made sense. At the same time, I did speech and psychological therapies.

Afterwards, I was admited to State University of Campinas, also one of the best universities in Brazil. I got a Master’s Degree of Linguistics (2003-2006), studying periodic cycles of hesitation phenomena in non-stuttering subjects. At this moment, I am attending a Doctoral Degree of Linguistics at the same university and I am studying periodic cycles of pause and the relation between hesitation phenomena and pause in non-stuttering subjects.

I have also worked at the clinical division of a SLP company, giving assistance just to patients with stuttering. My patients displayed two major characteristics: they usually needed differential diagnosis (especially regarding to cluttering, motor and vocal tics, dystonia, obsessive-compulsive disorder and attention deficit hiperactivity disorder) and they have usually done several previous therapies without success.

Last year, I got involved in Brazilian Fluency Institute, a non-profit association devoted to fluency and its disorders (stuttering, tachylalia and cluttering). Some of our actions include: the organization of the Brazilian campaign of International Stuttering Awareness Day, a great participation in the media to talk about stuttering, information and advice about fluency and its disorders, legal advices about stuttering and supervision on research.

So, now, after SLP School, Linguistics School, clinical practice and Brazilian Fluency Institute, I think I have more reasonable answers for my childhood wrong lessons.

(To be continued…)

Sandra Mello as guest blogger (III)

When I was a child I used to think stuttering could be learnt from imitation, but scientific knowledge presents evidence that, instead, stuttering may be caused by an hereditary factor or by a brain lesion (Alm, 2004; Drayna et al, 1999; Ludlow & Loucks, 2003).

When I was a child I also used to think stuttering should be the result of psychological problems, but scientific knowledge offers evidence that stuttering may be the result of basal ganglia (BG) disfunction (Alm, 2004, 2005; Ludlow & Loucks, 2003; Molt, 1999). In this case, BG would sometimes fail to generate commands to finish some sounds or syllables. This is exactly what I feel in my speech: I feel I start saying a sound/syllable and get stuck on it. This is also the way my patients usually describe their stuttering.

When I was a child I realized stuttering level had an oscillation and I thought I could control this. I did not know waxing and waning periods are intrinsic to the BG disorders and that this cannot be controled. I used to think that if I tried hard enough, I could always be with a good fluency level.

When I was a child I also used to think I did not have enought will-power, because I could not always hide my suttering. Scientific knowledge offers evidence that BG functioning is not under voluntary control. So, as a consequence, stuttering is not under our voluntary control.

If psychological problems do not cause suttering, what is the role of emotions in stuttering? I think Per Alm (2004) hits the nail on the head when he says the level of freezing response can explain emotional influences on suttering. The freezing responde occurs when the person antecipates an unpleasant situation with regard to stuttering that is going to happen and he/she does not know the best way to act and he/she does not decide fight or flight.

When I was a child I also used to think stuttering should be a so shameful thing since no one talked about it. In Brazilian society, stuttering is understood as a minor problem of minor people. I think because of this very few people and very few professionals are interested on stuttering.

Finally, when I was a child I also used to think I did not need treatment because I should be able to overcome stuttering all by myself. But this is really not the case: according to my experiences as a PWS and as a SLP, professional help is amost always necessary. Nowadays, we have at least three ways of professional help: speech therapy, pharmacological therapy and/or psychological therapy.

I used to blame myself for my stuttering, I used to blame my parents for not conducting me to a specialized treatment when I was a child, I used to blame my pediatrician for wrong professional advice, I used to blame my destiny… But, when I was 15 and I decided to be a SLP, I realized this was not a good way. I realized I could try to do something useful from my experiences: I could try to understand stuttering, I could try to improve my speech and I could try to help other people. At least try.

What is a cure?

Here is my cure level ranking.

Cure Level 4: relatively fluent but massive avoidance.
Cure Level 3: noticeable but not severe disfluency with only minor avoidance.
Cure Level 2: relatively fluent and minor avoidance.
Cure Level 1: no stuttering signs and no avoidance.
Cure Level 0: fluent without thinking and no tendency for relapse.

My statements for the day:

1) I give preference to less avoidance at the cost of less fluency.
2) Nearly everyone can be at level 1, 2 and 3 after therapy.
3) Most slowly fall back to level 3 and 4 sometime after therapy.
4) No-one ever reaches Level 0 fully.
5) Level 2 is realistic with hard work, and patience.
6) Depending on the severity, some people can reach a higher level more easily.

New evidence for basal ganglia theory?

Here is a new article published in Brain & Language on new evidence that the basal ganglia is involved in stuttering. Giraud AL, Neumann K, et al. report:

This fMRI study reports a correlation between severity of stuttering and activity in the basal ganglia and shows that this activity is modified by fluency shaping therapy through long-term therapy effects that reflect speech production improvement. A model of dysfunction in stuttering and possible repair modes is proposed that accommodates the data presented here and observations previously made by us and by others.

I write more once I have a copy for the article.

Discussing the Lidcombe RCT

Ora writes:

I've just read your September 2005 letter to the BMJ "The statistical fluctuation in the natural recovery rate between control and treatment group dilutes their results. The statistical fluctuation in the natural recovery rate between control and treatment group dilutes their results" You wrote: I find a 10% probability that a "minimum worthwhile difference between the two arms set at 1.0% syllables stuttered" occurs due to statistical fluctuation and not due to treatment effect. The standard aims for a less than 5% chance that the observed results occur by chance (usually expressed as p<.05), whereas you're observing that this trial achieves only 10% (p<.10). Is that what you're saying? If so, 90% is obviously not as powerful a result as 95%, but it's not worthless either.

I show that two control groups (i.e. I assume no treatment effect) have a worthwhile difference in 10% of all cases, because the natural recovery rate causes the groups to start at a different baseline (they have a different percentage of natural recovers by chance) (This effect gets smaller with increasing sample size). Then I argue: If with no treatment effect, I have a 10% chance of seeing an effect, then something is wrong because I should expect that in 0% of the cases there is an effect because both groups receive no treatment. So their p-value (which they claim less than p<0.01) MUST BE wrong and higher, because the t-test assumes that they are the same. So their statistics is wrong, and they must re-do their stats. What exactly the value is is not easy to compute.

Possibly instead of choosing an effect size (1.0% difference in syllables stuttered) that allowed them to claim p<.10, they should have claimed a smaller effect size (for example, 0.5% difference in syllables stuttered) that would have supported the stronger claim of p<.05.

What you are doing is shifting the criteria to get a result! See my arguments above, we need a strong signal to be sure that no other systematic effect can destroy it.

Though I don't fully understand your argument in your Sept 2005 letter, I would agree if you're merely saying that their results may not be as strong as they're suggesting. But on the other hand it seems to me that your claim that "the random control trial did not show efficacy despite their claims" is also too strong; 90% may not be 95%, but a 90% number is still strongly suggestive.

I am saying that the p-value is much higher, but I do not know how much higher.

However, there is at least one more crucial flaw in the study that I haven't talked about in the letter but I did in my talk which supports my claim that they have not convincingly shown efficacy. They only observe the kids for 9 months. Let's assume that the only thing Lidcombe does is to accelerate the recovery of those kids that would have recovered anyway, then I see a treatment effect over the short-term. Here is how it works. Lets assume at the start 100% of the kids stutter, and after 2 years only 20% of the kids stutter, those that do not recover naturally. I also assume that 40% recover naturally per year, so I have 40% first year, 40% second year, and 20% don't recover. If I run the experiment for one year. Then in the control group only 40% recover, but in the treatment group 80% will recover (remember I assume that Lidcombe makes the kids who recover naturally recover faster). And so I have a 40% higher recovery in the treatment group!!! But if I wait for one more year, the control group will have the other 40% kids recover naturally, and then there is NO difference any more between the two groups!!! So they need a longer observation period to control for this effect! Another aspect might be to look for relapses of kids...

Mark Onslow and Lidcombe at ISA

At ISA, I attended Mark Onslow's workshop on the Lidcombe program. He didnt seem to be very pleased when I told him during the workshop that his random control trial is flawed. The day before, I had given a talk (which Mark did not attend, I think) on why the random control trial did not show efficacy despite their claims. Sue Block was not too pleased, and said that random control trials are widely used in all kinds of areas. Of course, this is the typical response without addressing my arguments. Why can no-one say: Tom, I have listened to your arguments. I don't agree with your argument on slide 10, because of X and Y. That's why you are wrong. No, everyone says but RCTs are widely used, or the RCT's statistics have been computed by a statistician. Which kind of scientific debate is this??? Anyway, I met Sue Block later at the B&withnoB, and we had a more constructive debate.

Several people approached me regarding my talk or even congratulated me for standing up against Lidcombe. I just want to emphasise that I am not really against Lidcombe, just against their claim that they have shown efficacy with an RCT. I am not an ideologue who feels a strong urge to defend his/her view of the world. Here are my thoughts:

1) I have been to the workshop, and overall the program seems to make sense and I dont think it will harm the children at the very least. In fact, it does encourage good parent-child interaction, which should be beneficial anyway. So it might well prevent greater behavioural, social and psychological effects from developing.

2) What I do criticise is that Mark Onslow claims that research has shown efficacy. However, as I said before, they have proven anything. In fact, during the workshop he himself showed some long-term data that suggests that only 84% of the children recover, which is close to natural recovery.

3) My guess is that Lidcombe might well help kids to recover faster that would have recovered anyway, might well ease tension between kid and parents (the therapist acting as supper-nanny), and for the non-recovers reduce some secondary effects, BUT I doubt very much that it makes the kids fluent that would not have recovered anyway. To do this, the program is not interventionist enough and one needs to do more active speech work.

4) If I had a stuttering child and the choice of doing nothing or doing Lidcombe, I would certainly do Lidcombe with them.

5) I get the feeling Mark does not really know how to handle my statistical arguments, but his statistician should have: Mark Jones. He has never properly addressed my issues I have raised by replying to my email or my rapid response in the British Medical Journal.

6) Lidcombe might well have an effect but on a behavioural (less severe secondary effects like grimaces or strong blocks) and psychological (avoidance and shame) level, which is much more difficult (if not impossible) to capture in a trial.

ISA: Too expensive at average quality

Despite the beautiful site, I found the congress quite expensive, especially as I had to pay it all by myself. And in general I found Cavtat and Dubrovnik quite expensive for the quality offered. I spent several holidays in Italy, and I have to say that the food in Italy is much better and similar prices. The people are far more friendly and you are less treated like a walking euro/dollar symbol.

For example, the gala dinner food was not very good. First of all, they only served champagne at the reception on the top terrace, not even water or orange juice. When I asked for orange juice, the waiter said: No. Everywhere else, they would have organised something, but not here. Big Minus. The buffet food was mass production. They even managed to have factory cakes as dessert: you know the one you can buy in the supermarket next door in boxes of 100 or 200! And the fish risotto was far too salted.

Next comes my hotel room. I booked through the conference organiser's recommended travel agent, because I assumed that they would make sure that the deals are fair. So I paid 70 Euros for a very very simple room in a flat complex 5 minutes from Hotel Croatia, and with breakfast at Hotel Croatia. As I stayed one day longer, I was curious how much the room in the neighbouring bed and breakfast would cost. I paid 20 Euros!!! So in fact they made at least 40 Euros per day. This was a complete rip-off, and I think it was irresponsible of the conference organisers not to check whether the deals offered by the agents were fair!!!

Then the day trip to Montenegro cost 90 Euro. I didn't go, because I was still upset by the way they "stole" 5 times 40 Euros from me. 90 Euro per person for a day trip is ridiculous. The bus costs at most 15 Euros per person, then lunch 20 Euros, and the guide 5 Euros, so in total 40 Euros at most! Again every single person was ripped off by 50 Euros!! Again, I blame the conference organisers for not making sure the deal very fair.

I did tell one of the organisers and someone from ISA that I found the price far too high for the services offered. And I think it is especially unfair for the many visitors from poorer countries. OK, I shut up now... :-)

A beautiful site for the ISA congress

ISA is the umbrella organisation of the national stuttering associations, and has a congress every four years. The last congress was is Perth (Australia). This year's congress was in Croatia in Cavtat near Dubrovnik. The conference itself was held in Hotel Croatia which is beautifully set on a hill next to the coast. The first picture shows the hotel's terrace where conference participants sat during breaks. The great thing was that they had a free wireless network! The next picture shows the nice hotel beach. I spent two days there. There was no sand, but it was OK. I also went swimming there.
The most useful room in the hotel was the disco/bar Posseidon in the cellar. The design is all Austin Power style, and a big dance floor in the middle. It was open every day, and often people from the conference would get together there. I even managed to convince Velda Osborne, Chair of the BSA and member of the Older Generation, to join in after the gala dinner. The next day she blamed me that I had been a bad corrupting influence on her, and that I "made her" stay at the bar until 3 o'clock in the morning. When she went up to the reception to get a taxi back to her hotel, the porter said "But Madam, it is 3 o'clock in morning, there are no taxi." And then I think he drove her back...Picture are from the net. If someone has better pictures, pls let me know!

Summary of ISA

Sorry I havent posted for a week. I needed to recover from the intense ISA conference in Dubrovnik! :-)

I really should have posted real-time from the conference, but unfortunately I didnt. As soon as I get too many different inputs, my focus gets hijacked.

Here are the topics that I will talk about:

0) A beautiful site for ISA

1) The high costs of the conference

2) Tom and Lidcombe.

3) AAF Devices and their usefulness.

4) Jaik at ISA.

5) People from all around the world.

Back from ISA / Live feeds

I am back from the ISA Congress from Dubrovnik (Croatia). I had a great time, and I will write more soon.

There is/was a live feed for the ISA Congress: here. I am not sure whether there are recordings of the key note speeches. If you know more, pls let me know.

Sorry, I wanted to post this information much earlier. By the way, the live feeds were done by Manfred. (I forgot his family name). Many thanks to him. This allowed people from around the world to be part of the ISA congress.

ISA(II)

Tim Saltuklaroglu spoke about the impact of stuttering on the physiological state of the listener. He showed that the listener has a lower heart rate and more blinking. Clearly, the listener reacts. There were many questions.

At the end, Illia and Natalia Rasskazova showed their software NEODIALOG that trains effective communication by measuring intonation.

More soon, my battery is nearly empty.

ISA live (I)

Right now, I am in a talk at the ISA conference. Already after the first slide, I fundamentally disagree with the lecturer! So let me talk about the research session that I chaired this morning.

Patrick Kelly talked about his experience as a therapist for a rural area in Ireland. He has worked there for more than 10 years and sent out a questionnaire to all his past children that he treated. He reports are very high recovery from stuttering; I think 44 out of 46.

Then Jelena Tadic showed evidence that many children who stutter also have articulatory problems. However, her sample was quite small, less than 20. So I am a bit skeptical.

Then Soster claimed that the voice of people who stutter shows difference to normal speaker's voice. I am a bit skeptical, and suggested that she should do the reverse test, i.e. is it possible to identify stutterers by only listening to their voices?

Off to the ISA conference

I am off to the ISA (International Stuttering Association) conference in Dubrovnik (Croatia). I might be blogging from there, depending on the availability of Internet Access.

Too much blogging..

Too much blogging about stuttering is bad for you. Here is what happened to The Stuttering Student. :-) Funnily enough, when I met him in San Diego, he came across as rather calm and a bit shy!!!

Competition from junior stuttering brains

Oh my god, the competition is getting younger: The Kids Speak Blog.

Monkeys, Hands, and speech

Have a look at this BBC science article: here:

They analysed the way two types of apes that are closely related to humans use hand and limb gestures to communicate. The scientists found that apes used gestures more flexibly than the way they used facial and vocal expressions. They say the findings support the theory that human language developed through the use of hand gestures.

The most appealing argument for me is that for most people the right hand is the dominant hand, which is controlled by the left-side brain. And speech and language is located only in the left-side brain. This is more than a coincidence.

I am talking about this connection, because people who stutter have subtle dual tasks defficiencies with hand or finger movements: see previous post. Maybe this is all related?

CNN talks about stuttering

Having CNN's Dr Gupta talking about stuttering is of course more authoritative than myself writing 100s of posts on my blog! So I don't want to hold back on the message, after all we learn that Jerry Maguire really wants to be Donald Duck: :-)

GERALD MAGUIRE, DR., UNIV. OF CALIFORNIA, IRVINE: I remember in kindergarten, first, second grade, I would imitate cartoon voices in class when I would be called upon. Hello, my name is Donald Duck or whatever. I haven't done them for a while, but...
GUPTA: Jerry Maguire grew up to be Dr. Maguire.
MAGUIRE:I likely stuttered the rest of my life.
GUPTA: A psychiatrist and researcher at UC Irvine, Dr. Maguire is one of the world's leading experts on stuttering. He's one of a growing number who believes stuttering is not caused by a psychological weakness, but by an anatomical problem in the brain.
MAGUIRE:We're learning that stuttering is actually a miscommunication of the brain speech centers with the mouth, throat, and tongue in getting the words out.
GUPTA:To better understand, let's take a tour through the brain. First off, this is the basil ganglea (ph), which controls speech. In people who stutter, it is believed the striatum is bombarded with too much dopamine.
MAGUIRE: We found that the medication was effective in reducing stuttering in over half, in over half the patients.
GUPTA: Pagaclone doesn't cure stuttering, but it does curb it.
MAGUIRE: I believe that the future of stuttering treatment will combine therapy and medications both.
PATIENT: Well, now, I have a free flow of thought that I've never experienced before. It's kind of weird. It's like a, kind of a revelation.

Dysfunctional stop signalling??

In a previous post, I talked about stop and go signal.

I have to clarify my message. It is not an inability to stop movement, but the inability to start because of an inability to produce stop signals that decay properly in-time, which is a different statement. So if people who stutter are at their final syllable, they send a stop signal and that's why they stop. BUT were they to attempt one more syllable, the start signal would take a long time to become dominant due to an abnormally strong and slowly decaying stop signal. This could be due to a weak go signal OR a strong stop signal that stays too long in the system!!We can say a word when the go signal dominates the stop signal. Because of the dual nature of there being a competing go and a stop signal in a motor system, a dysfunctional go signal is not the only suspect.

And a more empirical argument.

Think about the blocks we are having. For me not being able to say a word, feels more like trying to drive with the hand brake on and not like being unable to start the car. I can feel that the syllable is "ready" in my brain, but something is holding back. And then suddenly this resistance vanishes. And on some days there is less resistance...

No shared environmental influence!!!!

At last, I can report of an interesting piece of research. The authors Dworzynski, Remington, Rijsdijk, Howell, and Plomin have used data on 1000s of twins to study genetic relationships in recovered and persistent stuttering: see Am J Speech Lang Pathol. 2007 May;16(2):169-78 or here. Remember twins can be monozygotic (the same DNA), or dizygotic (share roughly half the DNA like siblings do). If the monozygotic twins share a disorder more often than dyzygotic twins at statistical significance, then the disorder is genetic because the only difference between them are the fact that they share either all the genes or roughly half the genes. Though the interesting aspect about twin studies is that you keep the environment relatively fixed, i.e. twin grow up in the same environment. A second advantage is that technically speaking this is simple statistical computation, that even non-quantitative researchers should not be able to mess up. There are surely negatives but I am not sure, probably the inability to locate genes.

Building up a twin pool is hard work but very lucrative scientifically speaking and ensures divine reverence by other scientists. Every research field undertakes a pilgrimage to these pools, and after worshipping the holders of the holy pool are allowed access to study the genetic influence.

They found that

Stuttering appears to be a disorder that has high heritability and little shared environment effect in early childhood and for recovered and persistent groups of children, by age 7.

Briefer on basal ganglia

Here is a description of the basel ganglia that Rafael sent to me. Actually, it's from Per Alm and published in the proceedings for the IFA conference in Dublin 2006.

The basal ganglia circuits are organized in a direct and an indirect pathway. These two pathways are assumed to work in synergy to modulate the activity of the frontal cortex: the indirect pathway providing a diffuse inhibition of cortical activity and the direct pathway providing focused activation of the desired action. Furthermore, the two pathways are dominated by different types of dopamine receptors, D1 vs. D2, resulting in differential effects of dopamine. The cueing functions of the basal ganglia to the SMA are dependent on a clear distinction between focal activation and the surround inhibition of the cortex, in other words, a good signal-to-noise ratio. Based on this model it is easy to imagine that the cueing of the basal ganglia can be distorted in different ways. Too weak focal activation of the direct pathway would result in deficient activation of the desired action, for example difficulties in initiating speech movements. On the other hand, impaired diffuse inhibition of the cortex, provided by the indirect pathway, could result in a combination of release of unintended movements and impaired release of the intended movement. These scenarios have clear parallels with the symptoms of stuttering. Basal ganglia motor disorders are characterized by motor initiation problems, involuntary movements, and deregulated muscular tension, often with co-contraction of antagonistic muscles.

Do we fail to stop rather than to go?

Several researchers describe stuttering as the failure to properly initiate a sound. They also talk about the disturbance in the go signal. Today, I read a very interesting article by Vanderbilt psychologists Boucher, Palmeri, Logan and Schall about how the brain decides when to start or stop movements. The graph above shows the activation of the start and stop neurons; the task is pressing a button when green and stop when red. There are really two processes in the brain battling for supremacy!

Here is the essence of the article:

"We think of people who are impulsive as acting too quickly," Logan said. "Kids with ADHD are actually slower on the 'go' task than the control kids. It's not that they go too quickly; they stop too slowly."

Take this concept to stuttering, and maybe people who stutter are actually OK on giving the go signal, but are BAD AT GIVING THE STOP SIGNAL TO THE PREVIOUS SOUND. So a block is not actually the failure to have a go signal, but a failure to initiate a stop signal to the previous sound. It is worth pointing out that every human often corrects sounds that are ready to say, but may be we cannot actually send the stop signal to this sound and therefore disturb the go signal for the next sound.

The 60-million dollar gamble!

You might criticize the pharmaceutical industry at times for high prices and profiteering, but they are really the only ones that are willing to take the high risk to heavily invest in pharmaceutical research.

Publicly traded companies need to disclose their quarterly financial reports. And you can access Indevus' financial report (thx for the tip, Holger!). These reports also include cashflow forecasts on the potential costs and income over the coming years. They estimate to spend about 60 million dollar on Pagaclone:

Given these uncertainties and other risks, variables and considerations related to each compound and regulatory uncertainties in general, we estimate remaining research and development costs, excluding allocation of corporate general and administrative expenses, from December 31, 2006 through the preparation of an NDA for our major compounds currently being developed as follows: approximately $9,000,000 for NEBIDO, $14,000,000 for PRO 2000, approximately $46,000,000 for IP 751 and approximately $61,000,000 for pagoclone for stuttering.

I am convinced that rival companies are currently working backstage to decide whether to join the hunt for a stuttering drug. We should be glad about such a development, as more money goes into stuttering research.

Does ADHD make it harder to become more fluent?

Lynne wrote an interesting comment:

My teen son has been diagnosed with ADHD-inattentive type and has stuttered since age 2 or 3. I have always felt that the two were tied together. He has a hard time using the techniques, and if he does, it's hard to concentrate on anything. Processing speed in class is much slower than what is expected and makes the task and speech worse if he is made to hurry.--Lynne

There are some researchers like Per Alm who see a link between the two. Lynne's son might have had some mild neurological incident around age 2-3 and therefore develop stuttering and ADHD-like symptoms. However, it might also be a pure coincidence. For example, some kids stutter and have asthma. That does not necessarily mean that both are related to each other. The kid might just have been unlucky to get both.

Nothing special here. But Lynne's observation is intriguing: ADHD-like symptoms seem to make applying speech techniques much more difficult. Based of this assumption, I can formulate the following prediction. Let's assume you have two possible casual sources of childhood dysfluencies: genetic (design flaw) and neurological incident (design implementation flaw). Kids with either or both of them start stuttering. Their brain tries to compensate to produce fluent speech. The kids with neurological incident are more likely to have ADHA-like symptoms, and are LESS ABLE to compensate. They are therefore LESS LIKELY to recover.

So I would predict that the share of stuttering kids with bad genes as opposed to neuro incident should DECREASE over time!!!

Looking to share room at ISA2007

After some hand-twisting from Suzana, the fabulous conference organiser, I am going to the ISA world congress in Dubrovnik in Croatia, and will give a talk on random control trials in stuttering.

I want to stay at the congress hotel itself, but a single is too expensive and therefore I am looking for someone to share a room with me.

Tom's oracle

Being dysfluent does not seem to be the only dysfunction we have. I have spoken about sub-standard dual tasks performance before. People who stutter are not good at learning or doing dual tasks (the details are a bit more subtle). Professor Webster from Canada was the first to study this experimentally; an excellent piece of science in the midst of the common appallingy low quality and headless research in stuttering.

Why should we be worse in some dual tasks???

THERE IS NO GOOD REASON!

We need to find out why. If we succeed, we will understand stuttering much better. And no-one can claim to understand stuttering if they cannot explain this effect.

This line of research is the key to the stuttering mystery, and a feast for a scientist:

1. it is not about speech. (but stuttering is supposed to be a speech disorder!)
2. it is a reproducable effect. (try to reproduce the same stuttering!)
3. it is a measurable and quantifiable effect. (try to quantise stuttering severity properly!)
4. it is free of psycho and behavioural noise. (try to disentangle how much of stuttering severity is bad habit, how much situational and how much fundamental!)

Will PayPal react???

As I got no reaction from the suspicious websites, I start a campaign. Please cut and paste the text below (or your own text) in here (if you have an PayPal account), send an email to spoof@paypal.com, and to as many people (and stuttering associations) as possible. Who else should we send an email to?

Dear Customer Service,

I would like to make you aware of a set of very suspicious websites that use your PayPal system to get desperate people who suffer from stuttering (or OCD) to spend money using false promises. Despite repeated requests, they did not back up the claims of satisfied customers that feature on their site.

They are http://naturaltherapyforstuttering.com/ and
http://www.solutiontherapiesonline.com/
http://alternativetherapyforgad.com/

This email is part of a campaign launched from thestutteringbrain.blogspot.com.

As a satisfied customer of PayPal and person who stutters, I feel that your company should not be hijacked by fraudulous or unprofessional websites.

Best regards,

[NAME AND ADDRESS AND EMAIL]

Severe stutterer and AAF

Wow, he stutters quite severely. I have been recorded once that comes pretty close, but the next moment I was nearly fluent...

Regarding AAF (Altered Auditory Feedback), I am quite skeptical for the long-term effectiveness. I saw a presentation in Dublin about a preliminary study but I was not very convinced.

I wonder whether we can do the same with IVF (Instantaneous Visual Feedback i.e. speaking while looking at yourself in the mirror)?!

It's not just me!

I applaud the fact that others have followed the name and shame tactics!

Click here.

A quote to remember

Olivier sent me this email:

A former french president, François Mitterand, said about François Bayrou:

"Il faut se méfier d'un adversaire comme lui, qui a réussi à vaincre son bégaiement pour atteindre un objectif..."

Translation: You need to watch our for an enemy like him who successfully fought his stuttering in order to achieve his goal.

I love this quote...

Problem and Emotion focused coping

Per Alm pointed out the wikipedia entry for coping. The description provides a very nice framework to analyse how stutterers deal with stuttering.

In coping with disease, people tend to use one of the two main coping strategies: either problem focused or emotion focused coping.

People using problem focused strategies try to deal with the cause of their problem. They do this by finding out information on the disease, learning new skills to manage their disease and rearranging their lives around the disease.

Emotion focused strategies occur when the person modifies the way they think, for example: employing denial, or distancing oneself from the problem. People may alter the way they think about a problem by altering their goals and values, such as by seeing the humour in a situation.

People may use a mixture of these different types of coping, and coping mechanisms will usually change over time. All these methods can prove useful, but some claim that those using problem focused coping strategies will adjust better to life.

Are you problem or emotion focused? Or maybe both?

As a scientist, I am certainly problem focused in the long-term, but sometimes I am emotion focused when coping with stuttering in my life, e.g. I on purpose ignore the fact that i stutter when I have to speak or else I would avoid not to speak.

No brain but one gene article

The brain research into stuttering seems to have gone dead. Still no new articles... However, there is at least one article on genetics in the Journal of Fluency Disorders: Genetic studies of stuttering in a founder population. Unfortunately, there are no conclusive results. This might also explain why the authors published it in JFD instead of a higher-ranked genetics/science journal. A genetics insider pointed out to me that 1) this family looks a bit suspicious as their visual appearance shows anormal traits which could suggest other issues which in turn might influence the occurence of stuttering or stuttering-like symptoms, and 2) the family is highly inbred which creates all sorts of methodological issues that are tricky to deal with.

Presidential candidate stutters

Here is an interview of the French presidential candidate, François Bayrou.

According to wikipedia, he has a real fighting chance. Aaaaallez-y Fr--rrancois!

M. Bayrou was eliminated in the first round of the 2002 Presidental elections with a fourth place showing of 6.84%

In 2007, he decided to try again and as of early March is polling a surprise third place behind front-runners Nicolas Sarkozy of the UMP party and Segolene Royal of the Parti Socialiste.

The latest CSA poll puts his first-round support at 21%, slightly behind Sarkozy at 27% and Royal at 26%. Other polls have confirmed that Bayrou is in striking distance of forcing Royal out of the second round and competing head-to-head with Sarkozy. Such a scenario would favour Bayrou as his centrist position would allow him to garner left-wing votes that would see him as the least bad option.

Fraud or crackpot?

There are only two possibilities for Natural Therapy for Stuttering. Either it is a fraud scheme, or the person associated to the website did stutter, improved fluency, and honestly believes that the advocated approach is the way forward. Even for the latter, there is no evidence whatsoever for such treatment and I have to label them crackpots! So I urge them to at least dispel the suspicion of fraud, or I will start a campaign to take down their site.

As you are coming to the end of this website, I would like to leave you with a few advices that have helped me tremendously to deal with this disorder. Over the years, I have attended many support groups for stutterers, and I even helped to run some of them.

I challenge you to name these support groups and contacts. We want to check whether you are real or not! I also challenge you to name the person that wrote the "About me" section. I challenge you to say what role Mark Clay and Galina Tchekan play.

You have not tried the program. You do not know how effective it is. Yet, you are passing judgments. Moreover, you had a nerve to ask people to report the website even though you had not tried the program yourself.

It is your responsibility to prove the efficacy of your program. I challenge you to, at the very least, name 10 people that are not stuttering anymore due to your "treatment".

Reply by August (Part I)

Someone called August and most likely associated to the websites ("august" is in their contact email augustsum@aol.com) has posted a reply to my posts and your comments. I will assume that the post is genuine, and therefore post the reply here. I want to give them the opportunity to defend themselves.

Since you have been leaving nasty comments here, we would have to respond.
You have not tried the program. You do not know how effective it is. Yet, you are passing judgments. Moreover, you had a nerve to ask people to report the website even though you had not tried the program yourself.
The programs have been created as a result of going to various alternative medicine practitioners for years and trying their stuff for both conditions- stuttering and compulsive behaviors.
The information that is used for anxiety disorders comes from the original programs. It only excludes the speech component and the compulsive component of conditions. There is a lot of detail about these alternative medicine therapies and what these programs include online.
Natural Therapy for Stuttering teaches one how to use homeopathic remedies, energy medicine techniques, hypnosis, flower essences and visualization techniques in combination for optimum results, and it is targeted towards stuttering. It consists of experimentation notes that have been modified subsequently.
The word "cure" stirs much debate here. The goal of all alternative medicine therapies is to cure a person. All natural remedies have curative powers. Particularly, the need for them diminishes with time.
We all do realize that the "cure" is not possible in every case. In Answers sections of websites, it is clearly stated that the responses to natural remedies will vary. Everybody should be able to see it. It is on the top. People are also free to ask questions.

Reply by August (Part II)

However, there should always be a significant improvement in reduction of symptoms if one uses natural remedies in combination.
For instance, taking a homeopathic remedy called Sulphur in 1M or 10M potency will reduce not only symptoms of stuttering, but many anxiety symptoms as well in many people who have these problems. However, it is not clear how each person responds to the remedy. Therefore, it is best to combine using it with hypnosis, flower essences and energy medicine. The program explains in detail. What makes one an expert? Having lived through this does.
Lastly, a few comments have to be made about you wanting to become a lawyer. Since you have been insulting to us, we do have a right to be insulting to you.
To be a lawyer, you need to be able to think analytically. You simply do not have this ability. When you graduate from law school, you are probably going to be heavy in debt. You will not get hired anywhere as a lawyer unless you will be able to speak fluently. Even then, the competition among your fluent peers for any law job will be fierce!

What are your replies to the comment? I will post mine on Monday.

Mark Vladimir Clay (Part I)

Disclaimer: All below information is publicly available, and I am only pointing out information and names of people associated to these fraudulent websites. Association might point to but not prove guilt. Check for yourself.

Our man is most likely Mark Vladimir Clay. He was born as Vladimir Mark Tchekanov in St Petersburg (Russia) in 1975, came to the US before 1996, and studied (or claims to have done) at Florida Atlantic University: see article and search for Clay. He decided to change his name to an English sounding one, but couldn't resist keeping his real name as middle name, Vladimir. But friends call him Vlad. He graduated from Thomas Cooley Law School in 2002: see here and search for Mark Vlad Clay. He became a US attorney-at-law whose practice is limited to immigration law.

Mark Vladimir Clay (Part II)

In early 2003, he moved to Chicago, and lived at several addresses here. On April 8th 2003, he created the website Natural Therapy for Stuttering. He is named as official owner on the public Internet registry (though the information is not easily accessible), and the address matches the address he lived at at that time: 3048 West Cortland St Apt 1, Chicago, IL 60647. His email address is mclaym1@aol.com. In September 2004, he created another website, possibly motivated by the success of the first one. And again the address in the Internet registry matches his address: 4521 N Malden St. Apt 206, Chicago, IL 60640. Then in September 2006, again a website with very similar content, and same layout and pictures, but a break in habits. The owner is Galina Tchekan (email: augustsum@aol.com), however the address again matches perfectly the address he lived at at the that time: 4607 N Sheridan Rd Apt 210 Chicago, IL 60640 US. There is no such person with a public address in the US. Maybe invented or a real female family member without visa? Tchekan is close to Tchekanov. Moreover, Mark Clay is associated to another suspicious website that has been taken down but of which you can see the cached version via google.

I was unable to do an thorough online criminal background check (for 50 dollars) (no US credit card). If you are well-off and bored, buy the report for "Mark V Clay, Chicago" and send it to me!

Widespread fraud??

I found and received some very intriguing information. Are we onto a massive fraud scheme?

Check out this OCD website! Does it look familiar to you?

And who do you think is the contact address?? The same as on our stuttering website:

Galina Tchekan
1002 Montrose Ave. # 183
Chicago, IL 60613

I checked on zabbasearch.com, and there is no person with such a name living in the US with a fixed address!!

I have even more revealing information on the man behind it all!! There are some Russian links... serious! Are you curious? Well then you have to read my blog tomorrow! (Dont they do this in soaps, too! :-)

Fraudster Wanted?

I admire the human brain's ability to come up with yet another idiotic stuttering cure. Or is the person just a fraud who tries to make money out of desperate people who stutter? Check out for yourself the website Natural therapy for stuttering.

Unfortunately, the website owner does not leave his or her name, so I cannot give him or her Crackpot Award No 3 (after No 1 and No 2). But I have the very strong suspicion that the person is not a true crackpot, because true crackpots love to put their picture on the website and say who they are!!! And I tried to find out the name, but s/he has registered the domain name via a domain name company and therefore the whois information is not available. Interesting. Also, the email address for the contact is a bit suspicious and completely anonymous: PROGRAMSALES@AOL.COM. I therefore strongly suspect that the person wants to defraud people who stutter.

Let's track down the person! Do you stutter and you are a fluent computer hacker, can you please try to track down the person? Thanks! I'll out him or her on my blog. But please no violence! :-) What is your view? Should we send emails to the domain name company and make them aware of the dubious activities? Should we try to find the name and reveal it?

Dont we love listening to fellow stutterers

I found several videos on YouTube of people stuttering in front of the camera: see here. I am always amazed by my own reaction like: for god sake why does he not speak slower and relax, speaking is not that difficult I can do it now. And obviously in similar situation I do exactly the same thing!

Sophie's world

I have just added Sophie's blog to my links. I found that she wrote an article together with her parents, and here is what her parents said:

When Sophie was five or six years old, we noticed that when explaining something, she appeared at times to be unable to get words out quickly enough -- as though her brain were racing ahead of her ability to say what she wanted. At first, this happened only occasionally but, as the weeks and months went by, we noticed it more frequently. Friends we talked to said it was a common phenomenon at Sophie's age, and probably she would grow out of it.

She didn't; rather, it happened more often, until we came to see that Sophie had developed a "stutter"of some sort. Inevitably, Sophie herself soon became aware that sometimes she couldn't say sentences smoothly, and this frustrated her. However, she talked fluently enough if she didn't think about her speech, and so it seemed to us that the less we drew attention to it, the better.

These statements drive me insane because I have no good explanation why stuttering got more and more frequent. Now, if there is a defect or default, it should just be noticable right away with the same frequency or intensity, or be less because the brain gets used to it. I can think of three possible modes of explanation: some chemical imbalance getting worse over time, a virus infection spreading slowly and then stopping, and some adaptation mechanism that escalates the situation (like you have a little spot on your face, you open it, wound gets infected, bigger spot, and so on).

Questions to ask

I am trying to come up with all questions that influencea therapy choice. Here are a few but without explaining how they would influence the decision making process. Please feel free to post your question(s) and why they would influence therapy choice.

- do u have a family history of stuttering?

- do u have serious issues that may affect your stuttering? Psychological or Physical?

- is it the first time you talk about stuttering?

- how old are you?

- how much time do you have to dedict to therapy?

- how many therapies have you done in the past?

- are you male or female?

- can you really focus on a single task or goal, even obsessively?

- how dysfluent is your speech?

- how variable is your fluency?

- did you have an incident at age 3-5 that could have impacted stuttering?

- what therapy options are there in your neighbourhood?

- are you embarassed to talk about your stuttering?

(to be continued...)

Anti-selection is selection

Just a little thought. People who stutter and therapists always ask what is the best therapy for him/her or for his/her patient. Why dont we turn the whole selection process upside down? We look at all therapy options that we can do; which might be very different for different people like unavailabity due to geography, unsuitability due to psychological troubles or age. And then we eliminate therapies one by one, always the least suitable one, and you are automatically left with one therapy at the end.

Questions to eliminate therapy options might be:
1) do you mind taking a medication? (if yes, drop medication option)
2) do you feel under constant stress and fear that you could not handle treatment that puts you out of your comfort zone? (if yes, drop intense courses option like McGuire)
3) are you a child? (if yes, drop all adult therapies)
5) have you tried everything and are desperate for help? (if yes, all non-medication options)

The idea is to come up with a list of questions that at the end would help to elimate until one therapy is left. A bit like a flow diagram / decision tree.

With human thought came stuttering (Part I)

I am currently reading up and thinking about how and why speech developed in humans. My theory is that stuttering emerged when evolution developed a new pathway to prioritise generation of message as opposed to the manner in which the message is conveyed.

Our ancestors were animals like today's apes. They were able to express primitive thought processes and emotional states with sounds, a sequence of sounds, and body language of different forms (like pitch, length, intensity). Due to still unclear reasons, our ancestors developed more sophisticated thought processes and the ability to encode these thoughts in a language. Having a language had a huge evolutionary advantage because language allows to put thoughts into a message, to send the message to another person where the message creates a similar thought in that person's mind.

However, evolution only equipped our ancestors to deliver non-language messages like name calling, pointing, and so on. The brain put all the focus on how to deliver the message, but little cognitive resource on formulation which message is the most effective. Now, with the development of language and more sophisticated brain processes, spending more time on the message as opposed to how to deliver the message had an evolutionary advantages. Therefore a new pathway developed that would run the how-to-speak in the background and give our ancestors more cognitive space to work on what message we want to convey. We have the ability to speak with thinking on how we have to speak because it works automatically. We can concentrate on how to manipulate our fellow humans with the most appropriate message!

With human thought came stuttering (Part II)

Of course, this evolution of a second auto-pilot pathway took thousands and thousands of years. Genes that built or support the stability such a pathway spread out, and genes that hinder or render unstable such a pathways die out more and more. So over the years, more and more humans carried genes that developed such a pathways, and fewer and fewer had genes that blocked this pathway. The point is that I believe that the stuttering genes are the left over from this evolution. We carry genes that have not been selected out yet due to their devastating effect on speech fluency, but will eventually. So I argue that in the past a greater proportion of the population stuttered, and slowly the genes are selected out. (Of course, there is evidence that some stuttering is not genetic. There I argue that you can have an unstable pathways due to genes or due to an incident. And I argue that the genes part will decline more and more, and the incident part will stay unless there are genes that increase the probability of such incidents while not having any other benefits to the human being).


Please note: These arguments only make sense if the dual pathway theory advocated by Per Alm is correct: see here for a discussion. Also, theses are conceptual arguments, and the details are definitely more complicated.

ISA conference in Croatia in May

The ISA conference will be in Croatia in Dubrovnik in May. You might still remember Dubrovnik from the conflict of the breakup of the former Yugoslav Republics. It is a very old and beautiful town with a lot of cultural history. It is good to know that the region now focuses again on tourism.

The ISA conference is organised by the International Stuttering Association which is the umbrella association of national stuttering associations. Its focus is more on the people who stutter, even though therapists and researcher are there, too. It is organised by Suzana Jelčić Jakšić, a very energetic therapist who seems to be at all conferences that I have been too!

You can find more information here.

I hate babys

Do you know why I hate babies? They remind me of my stuttering. I am 34, and unfortunately all my friends and my brother are having babies via their wifes. And the damn little things look at me with astonishment when I have a block and say "ehhhh". They look at me with their big eyes with a "ahh, what is this?". People that I know have the decency to ignore my stuttering, and people I do not know just try to hide their reactions. But you babies, you dont! So if any baby reads these lines, now you know why I hate you! ;-)

The Stuttering Comic Jody Fuller

Check out this YouTube video from Jody Fuller who works as a stuttering comic and says that he stutters himself. His website is here.

Has therapy improved? (Part I)

Holger Stenzel commented that therapy has not much changed over the last decades, did not help him much and has no great potential for improvement.

Due to my still relatively young age of 34, I can only compare between now and 20 years ago. Here are my observations.

1) Therapists know more about stuttering, and have to accept that a) stuttering has a genetic component, and b) the brain is working differently.

2) Few therapists are left that believe that stuttering is purely due to psychological troubles.

3) Many therapists realise that self-help therapies like McGuire are as effective if not more effective in some cases, but are not suited for the more sensitive types.

4) Many therapists realise that the most effective therapies are multi-dimensional.

5) Relapse is taken much more seriously, and maintenance plays are more important role.

6) Self-therapy (helping yourself) has become so much easier, especially the first steps towards making stuttering a dimension in your life that you need to work on as opposed to the one thing in your life that controls you. The reasons for this progress are

a) Learning about your stuttering is so much easier.

Everyone with access to the Internet can find out about his/her stuttering without any danger of being outed. Twenties years ago many lived a life of ignorance about their disorder. No possibility to get objective feedback apart from some stupid comments from your grandmother, the secretary of your school, and so on.

b) Getting to talk to your stuttering brothers and sisters is so much easier.

Everyone can get in contact with other people who stutter relatively anonymously and safely in a chatroom, email or forum. You do not need to go to a strange room, in a strange part of town, meeting people that you have never seen before, and so on.

Has therapy changed? (Part II)

c) Setting up meeting is so much easier.

We find each other who live in the same area much easier to form self-help groups or just go for a drink.

d) Making a more informed decision is much easier.

The Internet lets us compare different therapies, and understand the advantages and potential pitfalls.


All this changed but that does not mean that therapies are much more effective. But I would argue that now as compared to 20 years many many more people who stutter at the very least have gone from a state of ignorance to a state of understanding much better than stuttering is about.

Relative risk vs absolute

Yesterday evening I met up with Melanie and Einar in Luxembourg-City. We all stutter and spend 4 hours discussing many things with varying degrees of fluency.

Medication to treat stuttering came up, and they were concerned about side-effects especially for the long-term. I realised that it is important to look at the relative rather than absolute risk. The right question to ask is "How much riskier is taking the medication over 20 years as opposed to stuttering more severely for 20 years?" (assuming the medication does alleviate stuttering), and NOT "How risky is taking the medication over 20 years?". Stuttering can add a lot of emotional stress and handicap to a person's life, especially to those that never went to a self-help group or therapy. For many, quality of life is lower and for some possibly even life duration!

Another illustration of this concept is having a LASIK operation to correct long-distance vision. You shouldnt ask how risky is the procedure but how risky is it compared to wearing contact lenses as an alternative. And then LASIK is actually less risky than contact lenses due to risk of infection, discomfort, and so on. Of course, wearing glasses is the safest option, even though I could argue that in accident glasses break and cause facial or eye injuries, and you have a reduced vision field...

Review article on stuttering treatment

Here is an interesting review article by Bothe, Davidow, Bramlett and Ingham: see here.

Review of studies that met the trial quality inclusion criterion established for this review suggested that response-contingent principles are the predominant feature of the most powerful treatment procedures for young children who stutter. The most powerful treatments for adults, with respect to both speech outcomes and social, emotional, or cognitive outcomes, appear to combine variants of prolonged speech, self-management, response contingencies, and other infrastructural variables. Other specific clinical recommendations for each age group are provided, as are suggestions for future research.

Tom's answers

Here are my answers:

1) Who was the first stutterer?

No-one. You need to look at human evolution. Stuttering can only exist within human speech. So the question to ask is when did human speech evolve. There is no concrete date, but a gradual development from the ability to produce sounds to the ability of verbalising thoughts using rules of grammar. The key is grammar, I believe. This is a far far more complex and complicated process, that takes a lot of brain power. I would speculate that the first humans that moved towards verbalising thoughts had dysfluent speech per se, but not relative to their fellow humans. They were all hesistant in their speech.

2) Who was the first fluent speaker?

The first fluent speaker in the sense that they were the majority and more fluent than a small minority came much later. Evolution "found out" that being more fluent that others actually increased their social status and increased good communication. So the fluency genes won against status quo genes over and over again over hundred thousands of years constantly and patiently increasing fluency of its human hosts, except for a pocket of stutterers that have not been given fluency genes yet.

3) Did the ratio of stuttering versus fluent people change over the course of history?

Yes, here are the stages:

Stage 1: the ratio does not exist because no-one could speak!
Stage 2: 100% stutterers in absolute terms (as of 2006!) but 0% in relative terms.
Stage 3: ...
Stage 4: 5% stutterers in absolute terms (as of 2006!) but 5% in relative terms.
Stage 5: ratio goes down further due to better treatment
Stage 5: the ratio does not exist because speech is not needed anymore.


4) Does stuttering affect your probability of having off-spring?

My bottom line is that stuttering certainly does not help. It certainly never helped me with the girls! :-) I am not exactly sure how the probability is decreased, but it will certainly not increase! My guess is that verbal communication became more and more important during human evolution, and by consequence the evolutionary pressure increased the more social and verbal humans became.

The history of stuttering

Here are a few questions for you to think about:

1) Who was the first stutterer?

2) Who was the first fluent speaker?

3) Did the ratio of stuttering versus fluent people change over the course of history?

4) Does stuttering affect your probability of having off-spring?

Meeting you.

I am currently in San Diego, and on Monday I will meet up with Tony, who is one of your fellow readers. It's quite cool to go somewhere in the world, and meet up with someone that has read / is reading my blog. I already met people in Zuerich (Gruezzi! (=greetings in Swiss-German), New York, and now San Diego. Now I remember that I also have readers in Madrid, and I was never there. So I should go there, too.

How to get out of breakdowns?

My last post was on breakdowns. How best to handle them? Here are a few solutions:

- Take it easy and just try to stutter with less effort.

- Talk less. Just realise that you have more difficulties at this moment, and talking a lot will just make it worse. So this might be the time to shut up.

- Keep business as usual.

- Read aloud to increase the proportion of fluent moment.

- Practising your fluency shaping techniques.

Any more suggestions?

Complete breakdown

Sometimes stutterers experience a complete breakdown in their fluency: not just stuttering but suddenly loosing complete control and struggling for words. When does it happen? Does it come randomly or for a reason like emotional stress? Not sure about my own fluency. I have the impression that the more important the message and the more I want to show that I have an important message the less fluent I am. So you should consider yourself lucky that I write about stuttering and science rather than talk to you about it! :-) But a breakdown can also happen in very ordinary situations. The worse is when I talk to someone in authority, not that I am scared of him/her on the contrary! I love to talk to them and challenge them a bit. Presentations can also be challenging for the same reasons.

What is your experience?

Patent to treast stuttering

You find the patent description for Pagaclone here.

Why kids start stuttering when their sibling is born.

I often hear people who stutter, family members, and therapists say that s/he started stuttering when their younger sibling was born. The same happened to me. So does this mean the birth of a younger sibling causes or encouraged stuttering. Should I blame my brother?

The solution is relatively simple: it's a statistical illusion but it is true!! A significant number of people who stutter started stuttering when their sibling was born. However the reason is rather mundane. Kids start to stuttering around 2.5 to 4 years of age when they start using grammar instead of just words. AND at the same time the most likely age difference between you and your younger sibling is about 2-3 years! Babies take 9 months to produce (as you probably know?), then parents are busy feeding the infant, and don't think about you-know-what-I-mean. After 2 years, they kind of forget what trouble and pain you were as an infant, and just remember your cute smile. And then your younger sibling comes along.

To summarise, due to the accidental fact that both the onset of stuttering and the age difference is three years, there is a high probability that stuttering kids have a younger sibling when they started stuttering!

Another way of looking at this effect is to ask: So if a younger sibling causes stuttering, why did not all the million other kids that have younger siblings start stuttering???

The answer is: They don't because there is no casual relationship. (At least not to first order, I still leave the option open that the arrival of a younger sibling and the "relative" neglect of the older child might aggravate stuttering and but not start it.)

My US-Trip: Wanne meet up?

I will be in the US from January 16th to February 4th for holiday, meeting people and business. I will be mostly in San Diego and the last weekend in Washington.

In terms of stuttering research, I will meet up with Jerry Maguire (pharmacology - UC at Irwine), Dennis Drayna (genetics - NIH), and Soo-Eun Chang (brain research - NIH). Should be very interesting!

If you read my blog regularly and are located in/near San Diego or Washington, let me know and we can meet! My email is my first name dot family name at physics dot org.

1 million dollar donation for stuttering research.

Good news for stuttering research in general and Jerry Maguire's pharmaceutical research! Ludovich points to this article on a $1 million donation. Here is an excerpt:

A Newport Beach man who suffers from a speech disorder has donated $1 million to UC Irvine to support the work of a researcher who does pioneering research in stuttering, the campus says.

Granville Kirkup, who founded the telecom company Telmar Logistics, donated the money to UCI's Department of Psychiatry and Human Behavior. It will endow a professorship to be held by researcher Gerald A. Maguire, who also has experienced periods of stuttering.

Maguire has been using old and new drugs to attempt to control stuttering, an affliction that affects about 3 million Americans, or 1 percent of the population.

UCI says in a release that Maguire has treated Kirkup, which allowed him to "go on and build and later sell Telmar Logistics, a multimillion-dollar distributor of telecommunications products."