Stuttering a brain disorder?

I just listened to an interview on StutterTalk with Jerry Maguire, and everyone seemed to agree that stuttering is a brain disorder.

I am going to shock my readers now, but I believe that stuttering is not just a brain disorder but also a behavioural disorder. The underlying cause is a brain abnormality leading to instable speech which then leads to association between stuttering and words, situations or people. And these associations can trigger stuttering without there being a neurological issue at that very instance. So 90% of your stuttering events might well NOT be of a neurological cause but you stutter because one of your associations have been triggered by a word, event or situation leading the brain to execute stuttering. I believe more and more that stuttering is a hybrid disorder.

Compare to Tourette syndrome for example. The urge for the tics are always there but sometimes they are suppressed longer and other times there are not. (Unless I misunderstand the disorder...) But with stuttering, the neurological stuttering is not always there...

Patent application for stuttering medication

A reader dug out this patent application for a stuttering medication: (I couldn't get the line breaks working...)

Treatment of stuttering and other communication disorders with norepinephrine re-uptake inhibitors

USPTO Application #: 20070032554
Title: Treatment of stuttering and other communication disorders with norepinephrine reuptake inhibitors
Abstract: Provided are methods and medicaments for treating stuttering or another communication disorder, comprising administering to a patient in need of such treatment an effective amount of a selective norepinephrine reuptake inhibitor. (end of abstract)

Agent: Eli Lilly & Company - Indianapolis, IN, US
Inventor: Douglas Kenneth Kelsey
USPTO Applicaton #: 20070032554 - Class: 514651000 (USPTO)

Treatment of stuttering and other communication disorders with norepinephrine reuptake inhibitors description/claims


The Patent Description & Claims data below is from USPTO Patent Application 20070032554, Treatment of stuttering and other communication disorders with norepinephrine reuptake inhibitors.

Brief Patent Description - Full Patent Description - Patent Application Claims


BACKGROUND OF THE INVENTION

[0001] 1. Field of the Invention

[0002] The present invention relates to the fields of pharmaceutical chemistry and central nervous system medicine. More specifically, the present invention relates to methods of treating communication disorders, such as stuttering, in children, adolescents, and adults by administering selective norepinephrine reuptake inhibitors to patients in need of such treatment.

[0003] 2. Description of Related Art

[0004] The Diagnostic and Statistical Manual ofMental Disorders, Fourth Edition (DSM-IV) (1994), American Psychiatric Association, Washington, D.C., pp. 55-65, describes a number of communication disorders usually first diagnosed in infancy, childhood, or adolescence. These include stuttering, expressive language disorder, mixed receptive-expressive language disorder, phonological disorder, and communication disorder not otherwise specified. Stuttering is perhaps the most well known of these disorders.

[0005] Stuttering is a speech disorder in which the normal flow of speech is disrupted by frequent repetitions or prolongations of speech sounds, syllables, or words, or by an individual's inability to start a word. The speech disruptions may be accompanied by rapid eye blinks, tremors of the lips and/or jaw, or other struggle behaviors of the face or upper body that a person who stutters may use in an attempt to speak. Certain situations, such as speaking before a group of people or talking on the telephone, tend to make stuttering more severe, whereas other situations, such as singing or speaking alone, often improve fluency. Stuttering is also referred to as stammering, especially in England, and by a broader term, dysfluent speech.

[0006] Characteristics of stuttering are described in Section 307.0 of the DSM-IV at pp. 63-65. While all individuals are dysfluent at times, the person who stutters is differentiated from someone with normal speech disfluencies by the kind and amount of dysfluencies.

[0007] Characteristics of stuttering include: [0008] Repetition of sounds, syllables, parts of words, whole words, and phrases [0009] Prolongation, or stretching, of sounds or syllables [0010] Tense pauses, hesitations, and/or no sound between words [0011] Speech that occurs in spurts, as the client tries to initiate or maintain voice [0012] Related behaviors, for example reactions that accompany stuttering such as tense muscles in the lips, jaw, and/or neck; tremor of the lips, jaw, and/or tongue during attempts to speak; foot tapping, eye blinks, head turns, etc. (to try to escape from the stuttering); etc. There are many related behaviors that can occur and vary from person to person. [0013] Variability in stuttering behavior, depending on the speaking situation, the communication partner(s), and the speaking task. A person who stutters may experience more fluency in the speech-language pathologist's office than in a classroom or workplace. There may be no difficulty making a special dinner request at home, but extreme difficulty ordering a meal in a restaurant. Conversation with a spouse may be easier, and more fluent, than that with a boss. A person may be completely fluent when singing, but experience significant stuttering when talking on the telephone. [0014] A feeling of loss of control. The person who stutters may experience sound and word fears, situational fears, anticipation of stuttering, embarrassment, and a sense of shame. Certain sounds or words may be avoided. One word may be substituted for another that is thought to be harder to say. Or, certain speaking situations may be avoided altogether. For example, a person who stutters may always wait for someone else to answer the phone. Or, he or she may walk around a store for an hour rather than ask sales staff where an item can be found. These reactions to stuttering occur in more advanced stages.

[0015] Repetitions and prolongations are essential features of stuttering. The presence of the other listed behaviors varies from person to person.

[0016] Developmental stuttering (DS), with or without associated psychiatric illness, is the most common form, and includes all cases with gradual onset in childhood that are not the result of acquired brain damage. Persistent developmental stuttering (PDS) is DS that has not undergone spontaneous or speech therapy-induced remission. Acquired stuttering, which is much rarer than DS, may occur in previously fluent individuals. This form may be neurogenic, resulting from brain damage associated with, for example, stroke, traumatic brain injury, Alzheimer's disease, renal dialysis, Parkinson's disease, and progressive supranuclear palsy (Heuer et al. (1996) Ear Nose Throat J. 75:161-168; Brazis et al. (1996) Localization in Clinical Neurology, Third Ed., Little, Brown and Company, Boston, Mass., p.515).

[0017] Based on neuroimaging research data and the effectiveness of dopamine receptor antagonists in DS, this form of stuttering appears to have a hyperdopaminergic origin.

[0018] It is estimated that over three million Americans stutter. Stuttering affects individuals of all ages, but occurs most frequently in young children between the ages of 2 and 6 who are developing language. The prevalence of stuttering in prepubertal children is 1%, and drops to 0.8% in adolescence. The male-to-female ratio is approximately 3: 1. Most children outgrow their stuttering, and it is estimated that less than 1 percent of adults stutter.

[0019] Family and twin studies strongly suggest a genetic factor in the etiology of stuttering. The risk of stuttering among first-degree biological relatives is more than three times that in the general population. About 10% of daughters, and 20% of sons, of men who stutter will also stutter.

[0020] There is at present no cure for stuttering. However, a variety of treatments are available that may improve stuttering to some degree. These include speech therapy to improve fluency and success in communication; parent education to restructure the child's speaking environment to reduce episodes of stuttering; and the use of interventions such as electronic devices or medications. Electronic devices which help an individual control fluency may be more of a bother than a help in most speaking situations, and are often abandoned by individuals who stutter. Medications that affect brain function often have side effects that make them difficult to use for long-term treatment.

[0021] Many medications have been studied for use in treating stuttering. Evidence suggests that persons who stutter exhibit hypometabolism of the striatum and increased dopamine activity (Wu et al. (1995) Neuroreport 6:501-5; Wu et al. (1997) Neuroreport 8:767-70; Wu et al. (1997) In: Hulstijn W, Peters HRM, van Lieshout PHHM, eds. Speech production: motor control, brain research and fluency disorders. International Congress Series 1146. Amsterdam: Excerpta Medica 339-41). Drugs that boost dopamine levels exacerbate stuttering. Ritalin has a similar effect. Tricyclic antidepressants have proved ineffective, and in fact stuttering has been reported as an adverse event with the use of these compounds.

[0022] In contrast, the dopamine antagonist haloperidol has been shown in replicated, double-blind trials to reduce the symptoms of stuttering, leading to the hypothesis that D.sub.2 receptor antagonists may be important in the treatment of developmental stuttering (J. P. Brady (1991) Am. J. Psychiatry 148:1309-16). Unfortunately, as this drug is not well tolerated by this patient population and carries substantial risk of extrapyramidal symptoms and tardive dyskinesia, it is not recommended for the treatment of stuttering.

[0023] In a recent small study, Maguire et al. ((2000) J. Clin. Psychopharmacology 20:479-482) demonstrated that the serotonin-dopamine antagonist risperidone may be effective in the treatment of developmental stuttering, and recommended further investigations of risperidone for this purpose. While extrapyramidal symptoms and akathisia were not found with the use of risperidone, sedation was common, and some participants developed transient sexual and menstrual cycle side effects that resolved with discontinuance of the medication, or with a reduction in dose. These side effects are thought to be due to the elevation of the hormone prolactin by risperidone (haloperidol also raises prolactin levels in some patients).

[0024] Paroxetine and Sertraline, selective serotonin reuptake inhibitors, are also used for the treatment of stuttering, but cause a number of undesirable side effects.

[0025] Newer medications more narrowly target dopamine receptors. Olanzapine (Zyprexa), has been used successfully to treat developmental and acquired stuttering in children, adolescents, and adults (Lavid et al. (1999) Annals of Clinical Psychiatry 11(4): 233-236; Lavid et al. (2000) Presented at the annual meeting of the American Psychiatric Association, Chicago III., 2000). Side effects were mostly limited to slight weight gain and drowsiness.

[0026] The present invention addresses the need in the art for improved treatments for stuttering that are both safe and effective.

SUMMARY OF THE INVENTION

[0027] Accordingly, in a first aspect, the present invention provides a method of treating stuttering or another communication disorder, comprising administering to a patient in need of such treatment an effective amount of a selective norepinephrine reuptake inhibitor. The selective norepinephrine reuptake inhibitor can be, but is not limited to, any of the compounds disclosed herein.

[0028] In another aspect, the present invention provides the use of a selective norepinephrine reuptake inhibitor, such as any of the compounds disclosed herein, or other selective norepinephrine reuptake inhibitors, for the manufacture of a medicament for the treatment of stuttering or another communication disorder.

[0029] Further scope of the applicability of the present invention will become apparent from the detailed description provided below. However, it should be understood that the detailed description and specific examples, while indicating preferred embodiments of the present invention, are given by way of illustration only since various changes and modifications within the spirit and scope of the invention will become apparent to those skilled in the art from this detailed description.

Genes located?

Look at this intriguing article from China. They seem to have found a genetic relationship between dopamine and stuttering. However, I am not geneticist, so I do not know exactly what the result means and whether the results are reliable or not. Maybe a reader can help us out?

Nan Fang Yi Ke Da Xue Xue Bao. 2009 Mar;29(3):375-80.

[Single nucleotide polymorphisms of DAT and DRD2 genes in Han Chinese population and their association with stuttering.]

Pan CH, Song LP, DU J, Lan J, Wu CM, Wu LJ, Lin L, Wang W.

Graduate School of Chinese Academy of Sciences, Beijing 100049, China.

OBJECTIVE:

To explore the correlations of dopamine transporter gene (DAT) and dopamine D(2) receptor gene (DRD2) to stuttering. METHODS: To examine the correlations of the 5 single nucleotide polymorphisms (SNPs) in dopaminergic gene (C252T, C1804T, and C1820T in DAT gene, and T1054C and C1072T in DRD(2) gene) to stuttering in Han Chinese individuals, a case-control study involving 112 patients with stuttering and 112 gender-matched controls was carried out. Genotyping was performed by a combined approach using polymerase chain reaction (PCR) and pyrosequencing.

RESULTS:

C1804T showed no polymorphism in either the patients or the control subjects and was therefore excluded from the following analysis. The C allele frequency at C1072T site was significantly higher, but T allele frequency significantly lower in the stuttering group than in the control group. The patients had significantly higher CC and lower CT genotype frequencies than the control group. There were no significant differences in the allelic frequencies of C252T, C1820T and T1054C between the patients and the controls, suggesting a Hardy-Weinberg equilibrium at these 3 loci. CONCLUSION: The presence of the C allele at C1072T in DRD(2) gene is associated with increased susceptibility to stuttering in Han Chinese, whereas the T allele provides protection against the onset of stuttering.

Non-speech specific abnormalities

A reader points me to a new article Brain activation abnormalities during speech and non-speech in stuttering speakers by Chang et al. from NIH which re-enforces evidence that there are non-speech specific abnormalities in the brain of people who stutter. Here is the abstract:

Although stuttering is regarded as a speech-specific disorder, there is a growing body of evidence suggesting that subtle abnormalities in the motor planning and execution of non-speech gestures exist in stuttering individuals.We hypothesized that people who stutter (PWS) would differ from fluent controls in their neural responses during motor planning and execution of both speech and non-speech gestures that had auditory targets. Using fMRI with sparse sampling, separate BOLD responses were measured for perception, planning, and fluent production of speech and non-speech vocal tract gestures. During both speech and non-speech perception and planning, PWS had less activation in the frontal and temporoparietal regions relative to controls. During speech and non-speech production, PWS had less activation than the controls in the left superior temporal gyrus (STG) and the left pre-motor areas (BA 6) but greater activation in the right STG, bilateral Heschl's gyrus (HG), insula, putamen, and precentral motor regions (BA 4). Differences in brain activation patterns between PWS and controls were greatest in females and less apparent in males. In conclusion, similar differences in PWS from the controls were found during speech and non-speech; during perception and planning they had reduced activation while during production they had increased activity in the auditory area on the right and decreased activation in the left sensorimotor regions. These results demonstrated that neural activation differences in PWS are not speech-specific.

The evidence for a neurological basis of stuttering is growing. And it does not seem to be restricted to speech function. But why are the abnormalities only showing up clearly at speech? Probably for two reasons: speech exacts a lot from the brain unlike other functions, and disturbed speech provokes a much greater response from the brain, the stutterers, and the environment. And the reponses lead to a feedback with words, events, and people being associated to stuttering behaviours and then these are triggering stuttering again.

More specific comments on the articles are coming soon.

I won the Area Contest!

I won the Area Contest with my speech I had a dream! I became first of the first and second places from all three club contests in Luxembourg. So now I am off to Paris on April 18th... Again I did stutter during my presentation but my stuttering was more than compensated by other aspects like meaning, impact, delivery, and body language.

Lies, damn lies, and causes

What do we mean by cause?

What causes a kid to start stuttering?

What causes a kid not to recover from stuttering?

What causes some people to stutter in a population and others not?

What causes a stutterer to stutter at this moment in time?

What causes me to stutter more or less?

What causes me to relapse after treatment?

What causes stuttering to run in families?

What causes stuttering in people without genetic transmission?

What causes us not to stutter when we sing or perform other fluency enhancing tasks?


Here are some fallacies you need to be aware of

1) Assumption that a single cause exists. The school shooting is due to violent video games and lax gun laws. But in fact many other different causes are in play here including depressed teenager, genetic propensity for suicide mission, long-term exposure to humiliation, too large school classes, in-attentive teachers, in-attentive parents, wrong friends, copying cats, general tendency of male teenage brains for aggressiveness and search for power play, and so on.

2) Failure to distinguish between multi-causal versus dominant cause with modulators. Often, there is a dominant cause which is modulated by different factors unrelated to the real cause. And it is misleading to call the modulators, causes. For example, fear in stutterers makes stuttering worse, but it is not the real cause but only has a modulating effect. Fear cannot be an independent cause because without a propensity to stutter you cannot fear situations. You have the same fear if you are obese, acne, and other issues. Of course, you could argue that after a while the fear is becoming "independent" and is caused stuttering without a propensity to stutter. However, I would argue that after treatment the fear is gone but it comes back only because there is still a propensity to stutter which lets fear to kick in again.

3) Failure to distinguish between proximate and ultimate cause. Why did he kill her? His brain send a message to his hand to take the knife and kill her. But the real cause was that he caught her without another man AND he is unable to control his anger.

4) Equating an observed relationship (correlation) with the cause. This is very very common. I explain this in this post.

I won my club's speech contest

Yesterday evening, I won my Toastmaster's club speech contest. I am going to post my speech here. I did stutter quite a bit, and of course at home I was completely fluent. But still they preferred my speech: I had a better meaning, more focus, and was better prepared than most. So take this as an example that we can be good presenters. Yes, stuttering is not helping at all, so we just need to be a bit better prepared, a bit more creative, and a bit more focused.

I had a dream

I had a dream - with an unexpected turn of events
A dream - that changed my attitude towards life
and might well change yours

Fellow toastmasters, honoured guests,

I was being chased
(not by beautiful women - unfortunately)
but by terrifying monsters
I was really scared. I was running for my life
And I came to a cliff
The sea 50 meters down below
The monsters came closer and closer
Oh my God! I was trapped!
Suddenly, I realized
Tom you are in the middle of a dream!
If you step over the cliff, you wont fall down,
Unless you imagine gravity to pull you down!
So I stepped over the cliff, walked on air and flew away.
leaving my monsters behind
I was so happy to have escaped. What a cool dream!
But why am I running away?
The monsters cannot really kill me.
It is a dream!
So I decided to face my monsters and fly back to the cliff.
Come on, monsters! Kill me!
As you can imagine, the monsters were a bit shocked!
But why am I scared of the monsters?
It is my dream. I decide!
So I took a sword.
And killed them!

How many times have we run away from a challenge and felt trapped?
Why didn't you apply for the job? I won't get it anyway..
Why didn't you talk to the cute girl at the party? She will reject me anyway...
Why didn't you speak out? No-one is interested in what I have to say...
But maybe you could have gotten the job, the girl, or people convinced.

Try. Try to face your challenges! Give it your best shot!
If you succeed, fantastic, you have beaten your monsters!
If you fail and the monsters killed you, at least you tried.
You don't have to tell yourself for the rest of your life: Why didn't I try? What if?

Yes, we can. We can suceed. Take Barak Obama.
He didn't say to himself: Oh, I have dark skin, so there is no point running for president!
Do not make yourself the victim. Be pro-active!

How many of us have been scared of public speaking?
We imagined the audiences turning into monsters chasing us.
But after a few presentations we enjoy talking in front of people.
In fact, it is impossible to get us off stage.
5 minutes, green lift, 6 minutes, amber light, 7 minutes, red light, and we talk and we talk...

Public speaking has been and still is a special challenge for me due to my stuttering.
When I am well-prepared and calm, I can be fluent.
But many times I am not...
I did everything to avoid talking in front of people.
Joining Toastmasters would have been like joining the devil.
My dream has changed my attitude towards my stuttering.
I realised that I do not have to run away.
I rather stand here in front of all you and stutter.
I rather face my monsters and be killed by them than being chased by them and remain silent.
Thanks to Toastmasters, I have faced my stuttering time and time again.
You see... Now it feels like... I am chasing the audience!

We all have our challenges. Try. Try to face them. Give it your best shot!
So tonite, I hope you dream of terrifying monsters chasing you.
You should not be scared of them, but they should be scared of you!

Colour picture of 1900s Russia

An off-topic post. Check out these cool colour pictures of 1900s Russia: see Wikimedia. And the Library of Congress .

Response to a reader

I have to respond to a reader trying to highlight some of the fallacious thinking that pollutes clear thinking. Very important in my view. Focus on arguments not on the person who makes the argument!!!

I have been following your blog for a long time... You actually provide good information most of the time. I wonder if you have a bias against stutterers (you say stutterers who do research are biased). Is this is what you believe? Then you are biased too...

It is completely irrelevant if someone is biased or not. The only important issue is the quality of the argument, and not who proposed it and whether the person is biased. It is a very very common fallacy. Even if I am 100% biased, a serial killer, or a fluent person, my argument does not suddenly become more or less valid. Watch political debate! For example, criticism on Israel policies in the US: someone makes a fair point, he is labelled an anti-Semite, and by default his argument is invalid because he is biased. Interestingly, the same fair point is made in Israel by Jews! As they cannot be labelled anti-Semites, these Jews are then labelled pacifists, dreamers or self-haters (induced by anti-Semite propaganda), and that's why the argument is invalid!

6- I read extensively on neuroscience and actually taking university courses in the field.
Ok, when will you get your MS or PhD in Neuroscience? And which University?

It is not relevant whether I have a MSc or PhD in neuroscience to comment on neuroscience. Watch my arguments not my background. If my lack of background leads to wrong conclusions, then you must have a valid counterargument. But I do take courses in neuroscience at the Open University in London. One is called Damaged Brains and Neural Networks, and the other is Biological Psychology . And so far I have scored 75% in both essays without too much work.

More importantly, who are the researchers and therapists that you debated with in the past?

It is not really relevant to the strength of an argument. But I have talked to many different scientists and therapists, and they often send me emails with new research.

If the debates b/w you and the Lidcombe people were judged, you would have LOST, correct? Only 1% of the people agree with you.

Which debates? There are effectively no debates. Only 3-4 times did they make some comments after my talks at conferences, e.g.: "You are wrong, because the statistics have been calculated by a statistician." And after a few counter-arguments, they don't say anything any more. I am wondering why? In fact, many people argue with me, especially therapists who see that the claims from the trials do not fit their reality. But I would rather say that only 1% understand my arguments, and that is a problem.

And even if no-one agrees with me, I do not care. It does not invalidate my argument. I only change my mind if faced with a good counterarguments and not by social consensus pressure.

For example, Greg (semi-serious stuttering researcher is making fun of you) pays attention to your blog, but who else? Who knows if people are laughing at you behind your back....

1000 different people per week read my blog. So where is the argument here? You want to make me feel bad? Greg just pointed out a funny story. It is you who doesn't get the subtleties! But I agree with you that Greg is only a semi-serious researcher but he is improving - reading my blog helps! I am sure there are some people laughing about me, but what they do not realise it that they are the fools, not me! I often get condescending comments and when I give counterarguments, they suddenly realise it is them who is the fool. They had not really considered the counterargument...

I think you want your blog to have a bigger impact over time, right? Respect = impact. Keep up the good work!

Again. Science is not about making friends. I am saying what is on my mind, and on the mind of many others who do not dare or cannot speak out. That's why they respect me. I have high respect for the argument itself, but I do not care about who the people are who make the arguments. And I also do not care whether people feel hurt about me telling them that they are talking non-sense.

Advice for presentations

An atypical post. I am trying to be constructive, for once! My Toastmaster experience has fine-tuned my maxims for better presentations. Hopefully of use for all, but especially of course for people who stutter:

1. Always write down the 4 key messages you want to get across BEFORE your preparation.

What's your mission, sir? You need to focus your point of attack to get into your audience's brain; no point hitting with the flat hand. Ever wondered why a bullet kills but a ball thrown at you with the same energy doesn't? You need to know which mountains to climb to devise a route! Your four key messages guide you in your preparation, and provides the bones for the meat of your presentation. Ignore your brain's pleading for more messages, after all you are not here to tell the story of your life. Leave this shore to your diary or autobiography! Keep it concise.

2. Always keep it as simple as possible

As simple as possible. Everything: the words, the sentences, the images, the slides, and the arguments. Make your message and delivery as simple as possible but not simpler! You can't make a message simple enough for everyone in the audience? Then ignore. The message is not worth being talked about, maybe written about but not talked about... Lure them to your written words instead. Again, ignore your brain's pleading for more subtlety and more sophisticated sounding words, but no: You don't take into consideration the strength of the argument, but you consider the argument. Travel lightly in all respects!

3. Always cut down your speech to 70% of allocated time! Audiences magically sap up our time for no apparent reasons. You need more time to deliver your speech than when rehearsing at home. Happens to everyone. You prepare at home, you are just on the time limit, and in front of the audience the time monster chases you. If you can speak for 7 minutes, cut your speech down to 5 minutes. Again, ignore the hard-breaking pleading of your brain. Those 2 minutes (of slides) you have left out are so so important. Please... No, leave me alone, they are not! Have you ever understood what the 10-seconds-per-slide man wanted to say? I haven't! Don't be our man!
Go into your speech with confidence of eternal time. Make as many long pregnant pauses as you want. Imagine sitting on a nice shady terrace over-looking the beach and chilling out. No hurry. This advice is especially important for people who stutter, because any time pressure makes us much worse.

4. Always learn the first 5 sentences by heart, separate by pauses, and rehearse 10 times. The beginning of a talk should not be the place of hesitation. You need how to welcome them and what to say. If you prepare the first sentences by heart with nice pregnant pauses and practise them, you will have them in your system and you can act in confidence. At least, at the start you don't look like a fool! That's what we call progress!

Good Luck! Here are more goodies, but please take your time and digest mine first...

Recruitment has begun

The recruitment for the Phase IIb random control trial has started: check out the StutteringStudy website. Indevus in a joint venture with Teva will test Pagoclone as a stuttering medication. I have extensively posted on the issue: here It took a very long time until Indevus found a partner, but finally they made it.

All US residents satisfying certain requirements can participate in the trial. Take the pre-screening test here.

If I were to live in the US, I would participate in the trial. First, I would help the researchers to get enough people together to make statistically valid statement, and thereby furthering our understanding of stuttering. Second, it is for free and probably all expenses paid! Third, it is a large scale trial so they have to adhere to high (safety) standards. Fourth, I am curious whether I experience a fluency effect.

Do not take the trial, if you are desperate for a complete cure. It will not happen. At best, you will see a significant decrease in stuttering which enables you to control your stuttering better and say what you really want to say. Do not take the trial, if you choose not to tell them about some medication or condition in fear of not being able to participate, you will distort the results and harm everyone. Do not take the trial, if you cannot handle the fact that after the trial you might not be able to continue on the medication. Do not take the trial, if you cannot handle that you might not see any fluency gains.

Finally, consistent with my image, I also need to be a bit critical! I object to their marketing pictures on the brochure to make potential participants happy. They are fake artificial pictures of a group of humans. They are all slim, beautiful, well-groomed, smiling, white-painted teeth and of course carefully counted for race balance to give the illusion of racial unity. But the website on the other hand is kept very neutral.

London and talking to Norbert at BSA

I was in London the last two days for business meetings but I also had a few "academic" meetings with intellectually interesting people. I keep to DNA discoverer Watson's maxim of avoiding boring people. Whenever possible I keep contact with my friends and ex-professors from my theoretical physics past life. So I was at my alma mater Imperial College London to hear the latest hype and gossip on searching for a unified theory and hear what has happened to various people. I also met up with two of my ex-professors. We discussed memes and their work on quantitative modelling of invention propagation. (I am currently writing a book on memes with a friend of mine who has a PhD in psychology and who is currently in Siberia. Strange, isn't it?) Then I visited a fellow Luxemburger who is finance/economics professor at London School of Economics. Apart from dissecting the current credit crunch and our usual complaining of Luxembourg culture and politics, we also talked about stuttering. I completely shocked him by switching to completely fluent calm assertive debating from my stuttering usual. It is a amazing how much a few longer pauses, a lower speech rate, and some control can make me fluent. On the first few words and sentences, he still seems confident of a quick collapse of this fluency glitch, but I kept on talking fluently and then I said provocatively: Isn't it amazing how much more assertive, calm and lucid I know come across? Have I shattered your image of me being a nervous and hesitant person? :-)

Of course, the intellectual climax was my visit to the offices of the British Stammering Association located in a slightly less glorious but lively area of London, and my chatting to Norbert Lieckfeldt, director of the BSA. We talked about many things, and about some people who we share common admiration (or not!). Here is a censored summary:

• He is reading my blog regularly and confirms its popularity and influence. He also said that static websites like the BSA are a bit outdated, and interaction is the spirit of the moment.
• He also had a blog but stopped it. As BSA director, it is difficult to talk about many things. Also he has accountability whereas I do not; well only to my conscience - so to no-one really! We agreed that a better idea would be for the BSA to have a BSA blog with news and press release type posts and a comment section. So BSA staff get feedback from members and can interact more.
  
• He mostly ignores my blog comments section now, because 1-2 people are making too outrageous comments. [I agree to some degree, but I also believe it is important that everyone can make arguments even if wrong. I rather know of someone saying I am an idiot because of X Y rather than not knowing about it. If some hate A, so is it not good for A to know of those people in order to evaluate whether they are right to some degree or not?]
• He would prefer more on what is true as opposed to my focus on what is wrong for that is not helping him: he wants answers like most people. But I prefer no answer to sloppy answers. In any case, I will try to do focus more on what I believe is valid.
• We talked a lot about early intervention: Lidcombe, other treatment approaches, and so on...
• I pointed out to him that claims that kids who have a sudden onset are more likely to recover is an illusion. Their studies are faced with selection bias. They observe the kids that come to their clinic, and the sudden onsetters are there very soon after onset whereas the slow ones come much much later with their parents. So the real variable here is the duration the kid has stuttered; the longer ago the onset the less likely you recover.
• We also talked about my low-capacity framework . He seemed not to agree but I think he actually agrees but doesn't realise yet that it fits with his experience.

Leys against Google

Leys keeps on trying to convince google to change their policy on allowing advertisement on stuttering cure. It seems like ASHA is a bit timid speaking out and writing to Google, which seems to me unreasonable giving for example that their UK counterpart, Royal College of Speech & Language Therapists, has been far more courageous and decisive. Google seems to suggest that individual complains are more appropriate: see the letter by Leys.

A big issue is a lack of standards in reporting treatment success. For example, such standards exist in finance.

Tom, I thought you might be interested in another update on this story.

As I mentioned, John Bercow, the UK Member of Parliament who has just reviewed and reported very constructively to the Government on the state of speech services for children, has written to Google UK and received a reply from Matt Brittin, Country Director, UK. Mr Brittin’s main point was that if people don’t like these stammering cure ads on Google they should complain about them using the special form available on the Google website. John has asked for our views on his letter and we have responded as below. I’m sure John would be happy for you to publish as much of it as you might want.

You asked about ASHA, and I’m glad to say that we have now heard from them, and they are very supportive of the campaign. However they do not want to confront Google at the moment, so we have asked them to consider how they might lend their weight to this campaign.

Whilst, in our view, ethical standards may be low in several sectors of US advertising, that does not mean that similar standards should be allowed to apply to stuttering. Thus, whilst ’buyer beware’ may be an appropriate maxim for some US products, it’s not suitable for stuttering treatments. It’s worth remembering, too, that we are not just talking here about ads which are aimed at Americans, who are accustomed to advertising puffery, but ads which are aimed at the whole world - in which very few people think and behave like Americans.

We are sure that ASHA will agree that there is a need to tighten up standards, set its expert and well qualified members apart from the fraudsters and encourage a more professional attitude to stuttering treatments. And, in the longer term, of course, this Google issue is just one stop on the way to the greater objective, which is to rid the world of fraudsters. So this is a very good team to be on!

LEYS GEDDES

Become a follower

If you want to follow my blog officially and thereby support my work without having to donate :-) , you can become a follower. Check out on the right border section. I want to see a few more faces!

Why look at stuttered speech?

I agree with Greg that studying stuttered speech is more or less time wasted! See here. It is a good example of what happens when people use quantitative tools without having any scientific common sense or vision. And I say it again, if you don't have a hard science background, do not work on quant stuff, you will fail. I would have tolerated such research decades ago, but not any more...

I mean just imagine we were to study the content of children pornography to find out what causes paedophilia. Yes, you can find a lot of "interesting" and intriguing patterns: what age, how many, what, who does what, and so on. But at the end of the day, it is sexual drive gone to the extreme crossing moral boundaries and hurting others, and crystallizing into behaviour depending on the environment, opportunity of the individual and culture...

Think of the drive as the water flowing and the forms into which water flows and freezes as the environment. Surely, studying the forms is not telling you anything about where the water came from?

Stuttering should not stop you trying

I often get emails from readers asking for advice, and asking whether they are able to do X Y. The rule is very simple: Just try it out. Here is another one (I have made it anonymous, but decided to publish so others are inspired), and please let my reader know what your thoughts are. And I am pretty confident that at least here you agree with my comments!!

> Hi, I've got an admission as a PhD student, but because of my stuttering problem, I don't know whether I can be successful or not.

First congratulations. Second, complete non-sense! I know many who did PhDs and are still stuttering. Actually, it is easier doing a PhD because you do research and write your thesis which does not require you talking. So what is the alternative to not doing a PhD? WHATEVER you do in life you have to face stuttering? So you might as well do the stuff you want to do!!

> I've really been hoping to become a competent scientist for whole my life.

Great. that is the single most important factor to become a good research student.

> I'm sure that you can give me very essential advice to me because you've overcome your stuttering problem and got a PhD. When I found your blog, I think you are a role model to me.

No, I have not overcome it. But I had to make a similar decision, and went to England to study and later get a PhD. I always told myself: Tom you will do it what ever happens. Stuttering will NOT HOLD ME BACK FROM TRYING! And very importantly: I WILL ALWAYS TRY AND GIVE ME BEST: IF I SUCCEED; GREAT: IF I FAIL, AT LEAST I TRIED! Do you want to spend the rest of your life regretting not having tried it?

> I think that fluency was essentially required for you to get your PhD degree.

Actually, I know few stuff where you do not need to speak a lot. In fact, speaking while doing a PhD is a tiny part of your work.

> Maybe you had to give a presentation fluently, or you might take an oral test to pass the qualified exam.

No, I have stuttered during presentation, but EVERYONE was very helpful. Instead it was easier in a sense, because they were understanding because of our handicap.

> And I think fluent speaking ability is really needed for you to do a job as a consultant well. How have you been dealing with all those situations in which you need to speak well and fluently?

As a consultant, fluency is more important. But you just need to keep moving and say: OK, maybe I am not fluent, but do you want to have a fluent clueless semi-expert or a stuttering expert? Stop thinking about it. Think about how to cross that bridge when you get there not now! You haven't even started your PhD...

> Moreover, whenever I try to speak in English, I can feel that my mouth is more frequently blocked. I guess that you've got through a similar problem. Would you mind if I ask you about how to deal with the problem too?

I just did it. I just took the challenge.

>>> Or I think anything you say to me can be helpful for me. If you have anything to say to me, just let me know about them.

As I said, just do it and don't care about what will happen. Whatever you do, you have to go through it. Re treatments, you could join a local self-help group and attend a national stuttering conference to meet others. It is a great source of inspiration. And I would recommend that you send an email to your news supervisor or admission tutor, and explain him that you stutter and ask whether this will be a problem (and also tell me that you really really want to do this...). I am sure s/he will write back that they will do everything to help you. So be open about it, it will help you decrease the pressure because it is talked about and you will see that everyone (99%) will try to help you as much as possible. Good Luck! Tom

The field needs anonymous comments

Greg has questionned anonymous commenting on my blog. I say that the field of stuttering desperatedly needs anonymous commenting. Some angry minds are abusing this, but the benefits overweight the downside. If my blog were a physics or math blog, there would be no need to do so because debate and putting forward good counter arguments adds prestige and rarely damages your career.

I have often encountered reluctancy from clinicians and scientists to speak up and criticize other people's work. The comment section provides opportunity to do so in the safe way.

I agree that some people are attacking too harshly, and attacks on the person itself it not really acceptable. Maybe I should delete more comments like this that add no arguments per se. Of course, this involves more time spent on reviewing comments.... On the other hand, it is good to know what some people think even if it is bad, so we get a better representation of reality.

Some of you might have noticed that I had the comments moderated for some time. Someone wrote nasty comments about me, which were completely unacceptable and did not add to the topics in any way. But after sending 10s of comments over several weeks, he finally stopped wasting his time and I de-moderated the comments section again.

Responding to a reader's comment

From time to time, I have to respond to comments on my posts. And here is one of them:

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

I am just saying that this is what you can expect when you attend the conference. As a member of the audience, you will not really hear the latest stuff. It is not a criticism of Drayna as such but a reality of scientific research except in physics and mathematics where it is all open access before publication and you can have completely open intellectual debates.  In my experience, it is 2-3 years before we hear all the details, and only with all details can you really debate and challenge people. This is especially true in brain imaging which hampers debates a lot. Even reading my blog is sometimes talking to me in the past, because I often know of results before publications, but promised the researchers not to write anything before it is made public.

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

Here is what I contest and it is up to Larry Molt to address these issues

• I sent him an email asking him about the latest status. He never replied.
• He has received money and so it is his responsibility to do efficient research and MAKE IT AS PUBLIC AS HE CAN.
  
• He is responsible for making sure that Speech Easy quotes him accurately on their website and includes his latest results. This has evidently not happened, which misleads potential customers.
• I do not buy the interns-making-mistakes. He is the supervisor and holds responsibility. Especially, because this is so high profile and high stakes research.
• If participants drop out, it is very often because they are not satisfied and should be treated as a failure unless clear evidence points to the contrary. And I have never said that this is an issue for me.
  
• How come all the other studies started after him but finished before him?
• I was not at ASHA. But if he did present findinds, then why are they not made public in a press release? They did one when he got funding!!!! And why is it not on his website?? And why does Speech Easy not have his latest on their website? He should force them to do that or they should not mention his name.
  

Are you saying I am not allowed to ask these questions? No-one else is asking them. And a final comment. I do not care about why troubles occur. I only care about the results.

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

Wow. Don't you see what is going on. So first they make a big announcement about trying to support research into the product, big press release, put it on the website, and wait. This gives them about 4 years breathing space to sell as much as possible. Then when the slowl researcher finally comes up with results that are not too good, you do not put them on the website, and make no big noise. And you completely ignore the other studies that came out faster. So now they feel the pressure and say: We recognize that this is a hotly debated area, so lets create science board and develop better research. Again they save years in which they can make millions of dollars again. Wow, so now they seem to agree with me that the research they funded was not very good. Sounds awfully like the Neocons. If it doesnt fit my ideology, it is wrong and I need to do better research. Sounds awfully like the Iraq dossier. We now know: no weapons of mass destruction, even if there were, there never ever was a risk for US or Europe, millions displaced or died. But we all heard the years of denials.

And here is a message to the person(s) who have been hired by the Speech Easy maker for marketing. I know that you understand what I am writing but you keep on doing it because you earn money. Do you really want to do this? Do you not feel a moral responsibility?

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

Why don't you want to be critical? What is wrong with all of you? It is a debate, it is not a bonding and networking session. You suffer from consensus-obsessive-disorder whose tentacles often confuse the functioning of our brains. If you disagree, then just write a comment. No need to apologize. I am not writing my blog because I want to become popular. I write it because I want to put out arguments and challenge opinions that are not well argued.

I often see this attitude: Oh Tom has a PhD in physics but I work in the field. He tries hard but he just doesn't get it. Have you ever thought that you might not have gotten it? Several times, people have come to me and say: Tom your blog is interesting but you often miss the mark. And I start a debate and ask them so what exactly do you not agree with. And in every single case, they end up with saying something like "fair enough", because they realise that it was them you did not consider all aspects and realise that my argument is valid. I do admit that I do make factual mistakes sometimes, or put things more black and white than they are but I do this in order to have clear arguments.

Is TheStutteringBrain or StutterTalk not reputable?

If you are interested in research and a member of the National Stuttering Association (you don't even have to be a member, I guess), they have an interesting research symposium at their annual meeting in July: see the details.


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


I sincerely hope that the NSA is not implying that all information on the Internet, especially blogs and podcasts, are not reputable. I beg to differ, and NSA should remove this sentence. StutterTalk and Judy Kuster for example do a very good job. In fact, we are more reputable in the sense that we have far far fewer conflict of interests as you will soon see.

To show how we add value. Here are a few issues you should be aware of, and you might even want to ask them questions about in case you attend.

1) Do not let yourself be blinded by someone writing that they have invited one of the nation's leading experts. Who decides who is the leading expert and who decides who is an expert? If we were to name those clinicians as experts who have a high sucess rate in turning us into fluent people, the number of experts would be very low indeed. In fact, the McGuire program is probably not less effective, but no-one would call the instructors as experts, right? Why not? You need to be especially carefull with clinicians. It is difficult to judge the quality of research, and good networking, presentational, political and lobbying skills carry you a very long way.

2) Denis Drayna is in my view the leading geneticist in stuttering (and as far as I know the only full-time geneticist working on the topic with a research team) and the only real professional scientist on the panel. But he has little to say about treatment of stuttering and I am sure he would admit this readily. I tend to believe that he is on purpose not trying to delve too deep, because he works within the paradigm: give me a disorder, I run the genetics algorithm, and lets see what genetics tells me. In fact, the only thing he would say is that genetics will not help us at all in treating stuttering. Or, he starts spinning (I guess on his research grant applications!), and you might hear him say that one day we have the possibility of gene therapy, and if we know which genes are responsible we know what causes stuttering. Maybe in 20 years. You also need to be aware that he is not telling you all he knows. His goal is most likely (and so would mine be if I were him) to find the stuttering genes, and get famous with a Science or Nature article. So he cannot talk about new research before the article is public, and that often takes many months if not years. So when he talks to you, it's like stepping into a time machine and talking to him 2-3 years ago. But you can catch the occasional glimpse into his mind on my blog: see this piece of news made public by Greg who Denis Drayna had to inform by law. So if you attend the talk, it's the news from 2-3 years ago!

3) Jerry Maguire is the most active and influental player in pharmaceutical treatments, but note that his biography includes "As a matter of disclosure, Dr. Maguire receives research grants, consulting fees and/or honoraria paid to his university from Indevus, Teva, Eli Lilly and Bristol-Myers Squibb." Moreover, his biggest source of income is his practice where he and a colleague prescribes medication for treating stuttering and relating conditions receiving patients from all over the US, and from telemedecine consultancy where he has patients via the net but the medication is prescribed by local doctors registered in that state. He is also heavily involved in the Pagoclone trials. So he has a unique experience, but there are plenty of conflict of interests. Because of all his involvements, he cannot be seen as an independent reviewer of the field. Like Drayna, talking to Jerry is also a bit like stepping into a time machine, because again he cannot divulge the current state of research. And, it is also worth mentioning that he is a medical doctor and lecturer first, and a researcher second. [see a clarification by Jerry Maguire below]

4) Walt Manning. I was sitting next to him at a dinner, but I cannot really say much about him. He seems mostly to be a clinician who also does research.

5) Larry Molt. I am not sure what to think: He has given SpeechEasy a cover for their close-to-fraudulent marketing campaign, unintentionatilly or not. He holds a heavy responsibility, because he has accepted money from the SpeechEasy company and after 4 years has not published any outcome study (as far as I know). In fact, I can only find one unrelated paper where he is a co-author. Moreover, he has not forced Janus Development to update their outcome studies on their website. He has also not replied to an email I sent him some time ago, for more information. So if you are at the meeting, you need to ask him these questions: Why not published article? Is he happy with SpeechEasy mentioning him on the website without final outcome results? How much money did they give his research group? Has he any other connection with them? Does he agree that they use his name as a cover for very weak outcome literature?

6) Vivian Sisskin. I never met her before, and never heard of any research findings.


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

Normal interplay between both hemispheres

Martin Sommer has a new brain article out. He is well-known for the discovery of fibre deficiencies in the left hemisphere which was later confirmed more or less by others like Watkins and Soo-Eung. I met him several times in Goettingen where he lives and works, and at conferences. Our first meeting was in my car (it was raining, I remember) and then in a local car repair shop, because I unwisely put the wrong fuel into my car! He also stutters, and runs a self-help group. He works as a neurologist and does research. And don't mention trains, because he is a fanatic of!

I do not have access to the full paper yet, but it looks as if he could not find any evidence for abnormal interplay between the two hemispheres. I write more when I know more.

1: Mov Disord. 2009 Feb 17.

Normal interhemispheric inhibition in persistent developmental stuttering.

Sommer M, Knappmeyer K, Hunter EJ, von Gudenberg AW, Neef N, Paulus W.

Department of Clinical Neurophysiology, University of Göttingen, Göttingen, Germany.

Imaging studies suggest a right hemispheric (pre)motor overactivity in patients with persistent developmental stuttering (PDS). The interhemispheric inhibition (IHI) studied with transcranial magnetic stimulation is an established measure of the interplay between right and left motor areas. We assessed IHI in 15 young male adults with PDS and 15 age-matched fluent-speaking subjects. We additionally studied the ipsilateral silent period (iSP) duration. We found no significant between-group difference for IHI or for iSP duration. We conclude that the interplay between the primary motor cortices is normal in patients with PDS. The abnormal right motor and premotor activity observed in functional imaging studies on PDS are not likely to reflect altered primary motor cortex excitability, but are likely to have a different origin. (c) 2009 Movement Disorder Society.