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."

What are your New Year's wishes

What are your New Year's wishes with respect to stuttering???

My wishlist is:

1) write the article I was supposed to read.
2) Project X (secret).
3) Concentrate more on research again and write more research-oriented posts.

What do you want me to talk about more in the new year???

Happy X-X-X-mas!

Fluent when as fast as possible?

I am wondering how many people who stutter can speak more fluently when they speak as-fast-as-possible. I am able to speak relatively fluently when speaking as fast as possible (and fluent when I know what I will say), which is a bit paradoxical when you consider that I cant say some words easily when I speak at a normal rate...

Here is my observation:

very fast: relatively fluent
fast: more dysfluent
normal rate: dysfluent
slow: relatively fluent
very slow: fluent

My questions:
1) Is the performance of fluent speakers better at ultra-fast speed?
2) Why do stutterers seem to have more control when talking very fast?

Stuttering jokes

Do you have any funny stuttering jokes? I know humour is very culture dependent. So tell me yours!

I was told this one 30 minutes ago:

Daddy, John said that he has a great-great-great-great-granddad! No, he is only stuttering you fool.


Or how about this one? My dad, master of insensitivity, told this one when I was 10. I was not very happy, but he was obviously oblivious to this fact. Today, I dont care if someone tells a stuttering joke.

The general tells the young soldier how to parachute: "Look it's easy, count until 3 and pull the cord." The soldier nods with the head, gets into the airplane, and jumps... The general and the rest are watching his descent. But, he is getting closer and closer to the ground, but the parachute hasnt opened yet... The general gets nervous, and screams: Pull the damn cord. Of course, the soldier cant hear... And then they watch him land luckily on a haystack... Everyone runs to the haystack and they hear: Ttt--three.

Jermain will beat them up for you

Has someone ever laughted about your stuttering? Made fun of you? Are you a kid or teenager that gets bullied?

Here is the TheStutteringBrain's solution. Contact Jermain! He will beat them up for you!


Jermain Taylor will fight to defend his Middleweight Championship title this Saturday, and he stutters.

Good Luck, Jermain!

Adrian, the King of Therapies

Upps, not many people entered the competition. I always thought every person who stuttered went to many different therapies... Or did I upset some people? Did I make some aware that they went to many different therapies but still stutter?

Anyway, I hereby nominate Adrian: he is the candidate with the most therapies, and the only one of the competition! :-)

His therapies:

1) Therapy with various school SLPs.
2) Private therapy with SLP 1 as a child. (This one videotaped me to point out all my speaking mistakes)
3) Private therapy with SLP 2 as a child.
4) Private therapy with SLP 3 as a child.
5) Group workshop with Martin Schwartz (airflow) as a teenager. An awful experience!
6) Private therapy with SLP as a teenager.
7) Hollins (Fluency Shaping) three week course in 97 (Roanoke, Va).
8) Hollins one week refresher in 98.
9) Hollins one week refresher in 99.
10) Private therapy with SLP (Tim Mackesey) including desentization, voluntary stuttering, pull outs, slides, NLP, etc. around 2001.
11) McGuire Program 1 (three days in Reno, NV) in 2004.
12) McGuire Program 2 (Galway, Ireland) in 2004.
13) Neurosemantics (NLP) five day workshop with Bob Bodenhamer (Charlotte, NC).
14) McGuire Program 3 (Reno, NV) in 2004.
15) Casa Futura DAF system in 2005.
16) McGuire Program 4 (Washington DC)in 2005.
17) McGuire Program 5 (Washington DC) in 2005.
18) McGuire Program 6 (Washington DC) in 2006.

Are you the King of Therapies?

TheStutteringBrain looks for the king or queen of therapies: Who has done the most therapies in his life?

Here is my challenge to you. You don't stand a chance!! :-)

1) GP in Esch (Luxembourg)
2) speech therapy in Esch (Luxembourg)
3) special kindergarten in Luxembourg-City
4) "natural healer" in Bavaria
5) psychologist I in Trier (Germany)
6) psychologist II in Luxembourg-City
7) post-block modification / fluency shaping at Indiana University (US)
8) short therapy in Canterbury (England)
9) post-block modification at City Lit London
10) post-block modification in Durham (Northern England)
11) hypnotherapy in Manchester
12) self-help group in London.
13) fluency shaping in Kassel (Germany): I
14) fluency shaping in Kassel (Germany): II

What happened to PEVOS?

PEVOS is a German project that collected speech samples and questionnaire from before and after therapy. I talked about PEVOS here.

Many therapists from different "schools" participated, but no final conclusion. The just-after therapy results were discussed at the conference in Montreal, but that's it.

I spoke to some insiders more than a year ago, because I was preparing a talk about therapy outcome research for the German stuttering association's yearly conference. They told me that the data collection phase is over, and analysis will be done soon.

But nothing has happened since. I have no clue what is going on. So I would like activate my German spies to report back to me! Do you have any information? :-)

I would be really interested in how the different therapies compare to each other one year after therapy! And I am sure all the therapists who participated would be interested, too!

Do therapists believe in their therapy?

To start with, therapists use the therapy that they "grew up with", very much like people practising the religion of their parents and community. Few change, and most stick to what they know best. They try to rationalise their choice of therapy, when in fact they adopted a therapy without rational decision making, and then put the arguments around it.

Most therapists (and more humans) want to get their job done and want certainty in their life. There is nothing more appealing than a set of steps that tells you exactly how to do therapy, and ensures you of its success. Why starting to ask questions and destroy the certainty of your world? Very few are critical.

Therapists need to be uncritical to some degree. They are forced to believe in the therapy even if they dont, because a therapist cannot influence a patient without believing the therapy. So many make themselves believe in the therapy.

Many do not seem to believe that the patients will become much more fluent. They are rather more realistic, and believe that patients "will get a lot out of it", especially on the communication, social, psychological level. In fact, they believe that this is much more important than speech. I wonder whether they do not have it upside down. In fact, they too believe that fluency is the most important, but because they know that it is much more difficult to achieve, they change around the goals, and say that actually communication is the more important. But what they actually unconsciously mean is "Fluency is the most important. But it is difficult, so lets start with the other stuff. But upps I cant say that to my patients, so I have to say that the other stuff IS more important".

The emperor's dsyfluent speech

I have done many therapies, and witnessed many doing therapies. I always find it hard to say whether someone has made some progress or not. Sure, you can see increased fluency for many, but we all know that such an effect is often short-lived. Often, I also hear people report that they "are making progress", but I do not see the progress at all, certainly not on the fluency level. What should I do? Say that I dont see progress? Especially in group sessions where everyone has to report their previous week, people feel the pressure to say positive things, and you can sense that everyone is just "admiring the emperor's speech" even though "he has not fluent speech to show for. (I am refering to the story where thiefs sold the emperor invisible clothes, he walks around "with" them, everyone admires his "clothes", and then a little boy shouts "but he is naked".
On the other hand, gauging progress within myself is difficult. I can get very fluent, but my speech varies a lot from time to time. Or, often people tell me you are much more fluent now, and I think I am not very fluent. And other times, it is the opposite. Well, actually they only tell me when I am more fluent than average, but not when I am less fluent than average.

I am lost.

For some time now, I have the feeling that I am a bit lost and have no really new ideas on stuttering. I also feel that the research has come to some kind of standstill, and I find thinking about new ways forward difficult. The easy things in brain research have been done, for example. My main concern is that the sheer complexity of the brain, the likely existence of sub-types, and the emotional and psychological part of stuttering smearing out any subtle signals, all these issues make it very difficult to dig deeper into stuttering, not to speak about the not-very-good researchers in the fields.

I believe that I can see the contours of what is going on, but I don't have a clear view. Something goes wrong at 3 (either encouraged or caused by genes, or some other incident), bad habits kicking in and so on. The dual path way theory would explain all the peculiarities like being able to sing, and so on. But identifying specific modules is much more tricky.

On the other hand, I don't spend a lot of time thinking about stuttering. I don't sit down and really think about it. I am just reading the abstracts and make judgements...

Spasmodic Dsyphonia a key to PDS?

Hugo sent me a very interesting email. The cartoonist and creator of Dilbert, Scott Adams, has been suffering from spamodic dysphonia after a bout with allergies. He discusses the illness in this post on his blog, see here:

The weirdest part of this phenomenon is that speech is processed in different parts of the brain depending on the context. So people with this problem can often sing but they can’t talk. In my case I could do my normal professional speaking to large crowds but I could barely whisper and grunt off stage. And most people with this condition report they have the most trouble talking on the telephone or when there is background noise. I can speak normally alone, but not around others. That makes it sound like a social anxiety problem, but it’s really just a different context, because I could easily sing to those same people.

Several symptoms are strikingly similar to stuttering, and supports the hypothesis that two systems are involved in speaking/singing. I spoke to Per Alm, and he believes that this effect supports his dual-pathway theory. Therefore, a closer study of spasmodic dysphonia might reveal more information about stuttering itself.

Auditory abilities of recovered stutterers

I found an interesting article by Howell, Davis, and Williams. They claim that children who recover from stuttering have different auditory abilities in the broadband backward-masked stimulus (thresholds being higher for the persistent group). Here is the abstract. I will comment in my next post:

OBJECTIVE: The purpose of this study was to see whether participants who persist in their stutter have poorer sensitivity in a backward masking task compared to those participants who recover from their stutter. DESIGN: The auditory sensitivity of 30 children who stutter was tested on absolute threshold, simultaneous masking, backward masking with a broadband and with a notched noise masker... 12 speakers had persisted and 18 had recovered from stuttering. RESULTS: Thresholds differed significantly between persistent and recovered groups for the broadband backward-masked stimulus (thresholds being higher for the persistent group). CONCLUSIONS: Backward masking performance at teenage is one factor that distinguishes speakers who persist in their stutter from those who recover. Education objectives: Readers of this article should: (1) explain why auditory factors have been implicated in stuttering; (2) summarise the work that has examined whether peripheral, and/or central, hearing are problems in stuttering; (3) explain how the hearing ability of persistent and recovered stutterers may differ; (4) discuss how hearing disorders have been implicated in other language disorders.

Factors increasing stuttering

In my previous post, I asked how to make a stutterer stutter more. Research / therapy always looks at how to increase fluency. But would knowing which factors increase dysfluency not also help to understand stuttering?

Here are a few factors that I came up with:
1) general tiredness,
2) multi-tasking,
3) stress,
4) nervousness,
5) fear,
6) triggers recalling past experiences.

I should probably distinguish between two aspects:
a) decreasing fundamental control of the speech system.
b) triggering behaviours and habits that cause secondary symptoms.

I think a) is impacted by 1) and 2), and to some degree 3), 4) and 5).
And b) is impacted by 3), 4), 5), 6).

This is just brainstorming. I might change my mind. If you have more ideas, pls post them.

How to make a stutterer stutter

I always discuss how to make us more fluent. But how about tricks to make us more dysfluent!!! Please post your best tricks! :-)

Repeated reading makes us more fluent

The more often we read a word or sentence, the more fluent we get. I am not sure exactly why, possibly because the signals to say the word are getting more prominence in the brain and cannot be locked by other signals??

I have seen dramatic effect with one very severe stutterer. He was unable to say the sentence without severe blocks and other symptoms. As this event happened during a therapy, we, the other patients, forced him to say it over and over again. And more and more he became fluent, and at the end he could say it without stuttering and tension...

This fluency-inducing method is different to the fluency-inducing singing, talking in rhythum, with a foreign accent, chorus reading and so on. For such tasks, the speaker only speaks the word/sentence once.

Is brain research brain dead?

For the last months, I have the impression that research relying on brain imaging technology has come to a standstill. No new articles, no new ideas. I find this lack of articles a bit strange, because many different teams are working on experiments, like groups around Ingham, Neumann, Sommer, NIH, and surely others.

Have they hit the complexity wall and are unable to get publishable results? It is pretty straightforward to let stutters speak or stutter in a scanner, look at their brain activities, and detect which brain regions are consistently under or over-activated within people who stutter but not in comparison to fluent people. They have seen differences in activation and structure, on which I have widely written.

However, this epoch is over, and the new theme must be to create experiments driven by theories. Create a theory, create an experimental setup to test the theory, and do the experiment. Such research requires much much more intellectual and theoretical work, as you need to know a lot about stuttering itself and past research.

Another reason is increased complexity. The first order effects have been studied, i.e. put them in a scans and look at the scans, but the second order effects like what is going on functionally is much much more complex, because different stutterers do different things, there might be 2-3 subgroups, stuttering fluctuates, too many interactions between brain regions, not all studies found the same regions and so on.

And another anti-stuttering device...

The latest article published on PubMedLine is about a new device using delayed auditory feedback. The authors study a prototype device using a modification of a currently used bone conduction hearing device with delayed auditory feedback on adult patients with significant stuttering problems.

What have they found? Not surprisingly, they find a positive effect for the immediate 4-week period after the start of use, and a somewhat significant effect for the 2-week period. But no effect at the 6-week follow-up.

They somewhat desperatedly conclude that:

A new antistuttering prototype using a modification of a bone conduction device with delayed temporal feedback is effective in decreasing stuttering in patients over a short time course. Further studies need to be completed to evaluate the long-term effects of the device.

Just based on the abstract, I have the following comments. First, they cannot claim effectiveness, because they have not computed the effect size, but only talk about statistically significant difference (i.e. p-values). Second, the device might well show an effect, but the finding is a bit irrelevant. Every treatment shows some effectiveness over a short time course. What about the placebo effect? Third, I do not understand why they would want to conduct further studies on the long-term effect, because they have already found no effect at the 6-week follow-on?

Nevertheless, I believe that the research was worth conducting, but the authors should have been more honest in their conclusions and not spin them.

Tongue Twisters for twisted tongues?

I am currently reading Stutter by Harvard Professor Shell. He claims that tongue twisters are all always impossible for people who stutter. Is this assertion true?

I can do tongue twisters when I concentrate: How about you?

Maybe, we could even use them to improve our speech control. The secret about tongue twisters is to switch between two very similar sounding words several times within a sentence. Practising switching accurately and maintaining concentration might re-train our speech system. I practised one tongue twister 100 times and afterwards I had the impression of far greater control of my speech. As usual this is temporary, but practising every day might help.

Pls post your tongue twisters! :-)

Out with the stuttering boys

I just came back from drinks with the stuttering boys of Luxembourg. We talked about stuttering, its causes, and how we handle stuttering in our daily life. I talked about the latest research results and about Pagoclone. Einar thought that a therapy is better than medication, but I replied that this is true if it works but many cannot keep the progress on a long term basis. Adrien wondered whether people should maintain eye contact when someone is stuttering or not. We werent sure what is best.

Do pharmaceutical companies hinder sub-typing?

As I said before, I went to a talk on Genetics Of Complex Traits. I asked a question at the end (despite my stuttering :-). She presented work where they found statistical signals on 4-5 genes for a disorder. I asked her what this finding means. Does it mean that you need all 5 genes for the disorder to develop or just one of them or a combination? She said that this cannot be found out by the statistical analysis but by trial and error in the mixing of the compound impacting the genes in a medication.

Then I asked about sub-typing. Couldn't it be that there are 5 subtypes and each one caused by 1-2 genes. She said that sub-typing is very difficult to do. Apparently, pharmaceutical companies don't like to do research on sub-typing, because they prefer to sell a general compound for everyone rather than just for a subset where they make less money!

Genetics of complex traits

Yesterday, I went to a talk on Genetics of Complex traits. I learned a lot about the least advances in genetics. The progress is driven by two fields: new technologies to extract DNA and map the genes from samples, and new statistical methods to extract more information from the gene maps. In the future, we can expect much faster gene mapping and more squeezing out information from gene maps.

So we expect more advances for stuttering. The beautiful thing about genetics of stuttering is that you dont care about stuttering at all! You just talk your stutterers and test them. No need to define what a stuttering incident is, how to measure severity, and so on. No ideological bagagge, you just analyse the sample and see what's happening.

Getting rid of a habit: finally

Some time ago, I reported on my experience to get rid of a habit: see here.

I used to be really bad in swimming crawl, because I had problems with getting the breathing mechanism right. I used to choke when water came in my mouth.

Now it is completely gone. I do not choke any more when breathing doing crawl, because I unlearned a habit.

I am wondering how much bad habit is part of stuttering? Surely, we have habits in stuttering. How can you find out how much is habit and how much is underlying difficulties? Can you say that the more you practise the less stuttering? What are the criteria to distinguish between conditions based on a bad habit or based on more underlying difficulties?

Disclaimer to reports on Pagoclone

My last post was a report of a first-person experience of taking Pagoclone. I am a bit uncomfortable that readers might consider the very positive report as solid evidence for the efficiency of Pagoclone as a medication to reduce stuttering.

There are several issues to consider:

1) A first-person experience is certainly a fact. The person truly does experience what he is reporting.

2) HOWEVER, the interpretation of what he is experiencing and why he is experiencing is an interpretation of reality. He has a theory on what is happening with him. And this is NOT, and I say it again is NOT, necessarily correct. His interpretation, his theory, could be wrong. An example: A man gives a woman flowers. She experiences positive feelings, and interprets that he likes/loves her. Her experience of being given flowers and the feelings associated are true. She also experiences her interpretation of this act, but (as many women know) her interpretation might well be completely wrong and he is just a womanizer!

3) Human often fall prey to logical fallacies, and that's why their interpretation is not be trusted in general, UNLESS the effects reported are very very strong and very many say it. But even then... But their experiences as such are mostly reliable. They truly did experience what they report.

4) Reports are "dangerous" due to the selection bias. Pagoclone might have no effect at all, and lets assume stuttering fluctuates greatly over time (as it does). Then BY CHANCE some will experience a decline in stuttering at the same time as taking Pagoclone. And they and the readers of the reports might associate this correlation with a casual link even though it is just a pure coincidence.

Experience of Pagoclone

A reader has sent me this report on his experience on Pagoclone:

The drug hasn't completely 'cured' me, but has helped tremendously. What I say to the folks in the clinic is -- am I supposed to sound like the folks on tv? So nice and so polished? Sometimes I do. Sometimes after a caffeine high, I just rip through my speech like an auctioneer.

I'm also getting a little more bold. I talk to people in public who I wouldn't have a year ago. At the pizza place, I now ask to change marinara sauce to garlic. Also, I never suffered from anxiety. I'm very laid-back. I have a rough time saying my name and introducing myself. But it's gotten a little better. I still drag out my first syllable, but it's not as long as it used to be. And I'm able to jump right into whatever I need to say so the listener doesn't think twice about it. Honestly, I feel that maybe the drug is relaxing me a bit more. That it's sort of forcing me to slow down my verbal output. It's strange. And as you said about the placebo effect, it's uncertain about what else is happening after I start speaking more fluently -- confidence builds, words are easier, I start smiling more, etc.

I've had absolutely no side effects from this as all. Then again, this is all just me. Your mileage will, of course, vary. I think once the next phase of this trial is over, I might get off the drug for a bit just to see what happens. I'm curious about the confidence effect. And the fact that I'm maybe thinking about slowing things down a lot more to make it easier. I'm also talking to my son more -- and not stuttering. He might have an effect.

Stuttering in Asia

Stuttering is relatively constant across cultures, suggesting that it is a generic problem of speech function rather than a culture-induced one.

Check out Jhong Ren's blog on Asia and stuttering.

Similar in stuttering??

I just read an article that discusses how inefficient information transfer between regions could be at the origin of autism.

Could this mechanism be at play in stuttering, too?

Transfer practise in the virtual world?

Felix wrote to me:

I have found a new study about Reality Virtual and stuttering. I believe it could be very useful for the treatment of stuttering. For the example, desensibilization, learning better the cancellations, pull-outs and onset,…etc,.etc..

The study are is, “Frequency of stuttering during challenging and supportive virtual reality job interviews”.

Link to article is here.

What is your opinion? In the future can there exist a commercial software to treatment the stuttering? Not only in interviews, but also in the bus, underground, nice girl ;-)

I have looked at the article and, to be honest, I am not convinced. It could well be useful to practise speech techniques in a safe environment. But you can do the same in group therapy with the other real participations. In any case, you still need to go out there and practise in real life situations.

And I am not sure I would be as excited by a virtual girl than by a real girl!! :-) But maybe we can have Lara Croft as the virtual girl and we need to try to chat her up! For female stutterers, I am happy for the software maker to make a digital copy of me... :-) Or alternatively, they can practise their techniques by phoning me: 00352 26835033.

Defects somewhere on the medial system?

In a previous post, I put the idea forward that thinking in terms of a defect somewhere on a circuit is a more natural way of thinking about stuttering. It naturally includes the possibility that different malfunctions are causing stuttering and that they all have roughly the same basic symptoms (because they have malfunctions on the same circuit).

The best candidate of such a circuit might be the medial premotor system (the basal ganglia and SMA). Per Alm has put this forward in his PhD thesis. I have written about it extensively, for example here. Roughly, the brain has two parallel dual premotor systems: the medial for automatic speech (where we emphasise on content of speech), and the lateral (where we emphasise on the form of speech). Of course, if we assume that the malfunction can be anywhere along the medial system (and the fibers connecting it to speech/language regions), we will not be able to get clear experimental observations as for each defect another region is affected?

The logical fallacy of NLP

Neuro-linguistic programming (NLP) is quite fashionable and controversial nowadays. It is a personal development framework based on supposedly the latest knowledge of neuroscience. It is interesting because there are many new stuff coming out of neuroscience which might help someone to change and improve their life. However, there is so much pseudo-scientific concepts floating around and so many crackpot arguments and discussions. It is a bit of a shame, because I strongly believe that understanding our brain better gives us more efficient tools to change behaviour and attitudes.

NLP is applied to many different areas. And of course, people are now using it in stuttering. Probably the most well-known advocate is Bodenhamer. There are several things that get a bit on my nerves:
1) He and others are mis-using NLP. It is fine to propose methods and frameworks to change behaviour and attitude. But they are pushing it by claiming that stuttering is cognitive rather than physiological: see website.
2) They have no proof for their theory in fact genetics and brain imaging strongly disproved their case.
3) There is no study that shows that their approach is effective.
4) They seem to believe that if you really really want you can achieve anything by re-wiring your brain. But there are clear physical limits in your ability to do so.
5) Why are they so dogmatic? It would be very easy to combine both views i.e. that is physiological and secondary effects and social handicap are strongly modulated by cognitive thought processes which can be changed with NLP or other methods.

Poll: Results

Thanks a lot for your voting!

I have to admit that I am surprised by the outcome. More than half of you would take Pagoclone even for only moderate impact. Of course, you might not be representative for the general stuttering population.

I was guessing that about 10% would take Pagoclone (or another medication), but it seems to be more.

POLL: Would you take Pagoclone?

Here is TheStutteringBrain's first poll. Pagoclone is a medication that seems to reduce stuttering according to Phase II trials. Please only take the poll if you stutter! Thx to Diego for the tip! You can leave more elaborate comments on the comments page.

Phase III of Pagoclone trials decided

This decision brings us as close as never before to a medication specifically approved to treat stuttering. Congratulations to Jerry Maguire and his team. Also, thx to Alessandro for the tip!

Indevus Announces Clinical and Regulatory Plans for Pagoclone

Company to Move Forward in Phase III Trials in Stuttering

Future Work on Premature Ejaculation Not Planned After Interim Analysis of Phase II Trial Showed Insufficient Efficacy

LEXINGTON, Mass.--Indevus Pharmaceuticals today announced that following an End of Phase II meeting with the FDA, the Company has established a clinical plan towards regulatory approval of pagoclone for the treatment of persistent developmental stuttering (PDS) and will initiate a Phase III trial in the first half of 2007. Separately, following an interim analysis of the Company’s Phase II trial of pagoclone in premature ejaculation (PE), the Company has chosen to discontinue the trial due to insufficient efficacy.

See more here.

Big $$$$$ for Indevus?

I estimate a 1bn dollar annual market for a stuttering medication.

Assume that 1% of the population stutters,
1bn people have access and can afford the medication,
10% of them would take it, and
the annual costs for the medication is around 1000$ (80$ per month).

That gives us 10 million people who could afford and have access to it, and 1 million people who would take it, and 1000 million dollars income per year.

John Paskievich and his Unspeakable

At the BSA conference, I went to the screening of Unspeakable, a documentary by John Paskievich: you can see short videos on this website. John is a well-known documentary maker who made his way to the Cannes Festival: here is a list of his documentaries at IMDB. His movie is mostly about the social impact of stuttering from his personal experience and life. I really like the documentary for its clear and uncompromising view on what it can be like to be a person who stutters. A powerful movie to share our experiences and feelings with the general public.
However, when Unspeakable deals with causes of stuttering, he is adding ketchup to a chocolate cake. He puts forward his own opinion indirectly by interviewing Darrell Dodge on the causes of stuttering who is absolutely not representative of the research community, in fact he is not even part of the research community. Moreover, Dodge's theory of "stuttering as a self-inflicted disorder of speech, communication, and awareness" is not supported by evidence, but in fact I would argue that latest genetics research contradicts it. But, I have to be fair and say that I agree with many individual statements / insights on his website, but not with his general conclusions which just show to me that he never did research himself i.e. like the pope talking about sex! By not clearly sticking to his own experience and giving his view of why people stutter John does a colossal disservice to himself, Unspeakable, and the people whose experiences he wants to get across.

Thinking in terms of circuit

Suddenly, many new ideas are popping up in my brain and floating around. Here is No 1: I noticed that I should probably think more in terms of circuits being dysfunctional rather than separate brain modules. The big advantage is that this more "system" (as opposed to local) way of thinking allows me to state that "The cause of stuttering is a defect somewhere in circuit X" rather than "For some, brain region A is not working well, in others the fibers connecting to region A and B are not well insulated". It might well be that stuttering occurs if any of the regions or fibers connecting the regions WITHIN a circuit is malfunctioning. So the goal should be to single out the circuit. So there might be a unifying way of encompassing all people who stutter, and difference can be explained by subtleties coming from where in the circuit the malfunctioning happens.

An interesting side product of this way of thinking is that there is a more natural way of asking why people with PDS seem to have inferior dual task performance. You can ask what is the region(s) that both dual-task circuit and stuttering circuit share. This would also lead to the conclusion that not all people with PDS should have inferior dual-task performances, as the stuttering circuit will NOT share all the same regions as the dual task circuit. So I would predict that only a subset of people with PDS would have inferior dual task performance i.e. only those that have a malfunctioning region / fibre, that also lies on the dual task circuit, in the stuttering circuit.

What I forgot to say at the conference

As you can see from the picture, I am moving too fast! The main theme of my brief talk was that the ability to study (and therefore to understand better) the brain has moved stuttering research in new territory. This is also the main theme of my blog. What I forgot to do is to explain why.

Ten years ago, you could formulate nearly every type of theory: a left-right conflict in the brain, the amygdala is overactive, the motor coding doesnt work well, and so on. Actually, my favourite theory is that little demon (probably female) getting drunk on occasionally tripping on the pathways that deliver the go-speak signal to the motor cortex. It is very different nowadays: If you support a theory, you need to explain all the new experimental evidence, for example:

1. Can your theory explain the genetic component?
2. If your theory focuses on a specific brain region, why doesnt it show up in brain imaging scans?
3. Why does this drug reduce stuttering?

So finally at last, you cannot just go about and say anything you like. You can still go and write about it, but you can no longer claim that you are doing research or science.

That is the real progress that is being made. It is still some way of, but theory building getting more constructive due to experimental constraints.

Zeitgeist of the BSA conference

Here are some general ideas floating around at the conference or in my brain during the conference:

1) over the last decade, more and more experimental findings are starting to constrain any theory building. Ten years ago, you could have said pretty much everything about what is happening inside the brain, but nowadays you need to face up with evidence that needs to fit your theory; a situation that many "researchers" find difficult to handle!!!!

2) there is definitely a genetic component to stuttering, but not a single gene.

3) stuttering is likely to be hetero-causal i.e. different causes lead to stuttering but on the same circuit.

4) genetic tests are going on and we should expect more research news happening. Dryana collected blood samples for his research. He run out of needles, so there was a great willingness to donate blood!

5) having a research session attached to the BSA conference worked well, and was a very cheap way of organising a mini research conference.

6) stuttering research is becoming more and more of a real science.

7) the Pagoclone study has still not published their results fully.

8) the researchers I invited seemed to have genuinely enjoyed the cross-disciplinary debate.

More soon. I have to go to Oxford to pick up my back pack that I forgot on the train. I hope it's mine!!!

Successful BSA conference.

I just came back from the BSA conference in Telford. The research section that I organised went extremely well. Everyone seemed very happy with the talks and the workshop. Dennis Dryana got many volunteers to donate blood for genetics research; he even run out of needles.

I am currently in London, and I am busy trying to get back my back pack that I lost yesterday on the train from Oxford to Reading, if you found it, let me know!! If you stole it, may god bless you with eternal stuttering! :-)

I'll update you on Wednesday evening about the conference talks. The picture of what stuttering is about is getting clearer in my view.

The new sciences of stuttering

I still have problems. But here is the first part of the description of research program at the Telford conference.

The new sciences of stammering

Over the last decade, advances in brain imaging, genetics, and pharmacology have provoked a revolution in the scientific understanding of the human brain. Scientists are now using this knowledge combined with the new research tools to tackle an age-long mystery: the mechanism and causes of stammering, and how best
to treat stammering. The BSA has invited to its annual conference in Telford leading researchers in the fields of neuroscience, genetics, and pharmacology to share with us the new sciences of stammering and answer the question: How are
neuroscience, pharmacology and genetics changing our understanding and treatment of stammering?

The main session of the program is the research plenary where leading researchers give conceptually clear and simple reviews of the progress made in their research area. After a tea break, the audience has the opportunity to ask probing questions to the panel or comment on any issues related to understanding or treating stuttering. The general sessions are followed by a research symposium where the experts will present and discuss cross-disciplinary topics.

For further information, please contact tom.weidig@physics.org
or visit the BSA website: www.stammering.org/conf.html.

Details of The New Sciences of Stuttering

Plenary
(Chair: Velda Osborne, Sat Sep 16th Sep 9:00-10:30)

Introducing the new sciences of stammering
(Tom Weidig)

The genetics of stuttering: a review
(Dennis Drayna, National Institute of Health, US)

The pharmacology of stuttering: a review
(Gerald Maguire, University of California at Irvine, US)

The brain and stuttering: a review
(Per Alm, University of Oxford)

Q&A sessions
(Chair: Tom Weidig, Sat Sep 16th 11:00-12:00)

Panel consists of speakers plus Kate Watkins, and LouiseWright.


Symposium
(Chair: Tom Weidig, Sat Sep 16th 14:00-17:30)

Given a gene, what is its function? Given a function, what is its gene? What if gene combinations make up a function? (Dennis Drayna)

Similarities and differences in the functional brain abnormalities associated with developmental stuttering and with a mutation in the FOXP2 gene. (Kate Watkins)

What does a medication-induced reduction in stuttering tell us about physiology and genetics of stuttering? (Gerald Maguire)

Is the dopamine D2 receptor important for genetic childhood stuttering? Neurological incidents and subgrouping. (Per Alm)

The measurement problem in stammering: a cross-disciplinary Pandora's box. (additional workshop on Sunday morning)

Main speakers of plenary

Dr. Gerald Maguire is Associate Professor at the Department of Psychiatry at the University of California, Irvine. He is a member of the US national stuttering association (NSA) and currently serves on its research advisory board. As a person who stutters himself, he has been interested in investigating novel treatments for stuttering since early in his medical training. His research group was the first to investigate brain differences in stutterers using the PET brain imaging method. He was the lead investigator on many studies investigating medications for the treatment of stuttering. At the Telford BSA conference, he will also talk about the latest trial on Pagoclone. Dr Maguire has spoken at a wide range of conferences like NSA, World Congress of Stuttering and ASHA. His research appeared at news outlets like the LA Times, NPR, ABC News, and the Boston Globe.

Dr. Dennis Drayna is a senior researcher in genetics at the National Institutes of Health in Bethesda, Maryland, where he currently serves as a Section Chief in the National Institute on Deafness and Other Communication Disorders. His primary research interests are the genetics of human communication disorders, work that has taken him to eight different countries on four continents in pursuit of families with these disorders. For example, he collected blood samples from an extended Pakistani family where many of its members stutter. At the Telford BSA conference, Dr. Drayna will discuss his latest research, and also collect blood samples from volunteers for his research work. He did a PhD at Harvard University, worked as a postdoctoral fellowship in the Howard Hughes Medical Institute at the University of Utah, and then spent 14 years in the biotechnology industry in the San Francisco Bay area.

Main Speakers of Plenary

Dr. Per Alm is a researcher at the University of Oxford, and works together with Dr. Kate Watkins on a project to understand the relationship between stuttering and brain functions. As a person who stutters he got involved in work on stuttering through the Swedish Stuttering Association. Having worked as an engineer in his previous life, he decided to take on stuttering, and go back to university to study neurosciences. He recently finished his PhD thesis on the causal mechanisms of stuttering at Lund University, Sweden. His attempts to combine a wide range of findings to a neurological model of stuttering have been well-received. He has especially emphasized the role of the brain structures called the basal ganglia. At the Telford BSA conference, Dr. Alm will discuss how the current understanding of the brain may help us understand stuttering.

I still have problems

I still have problems publishing... sorry

The blog works again.

That is typical. I write a comment that the blog doesnt work anymore, and the next second the blog works again!! I swear that it hadnt worked for 4 days at least! :-)

New layout and functionality!!

I have upgraded my Blogger Account to the new Beta version. That's why you see a new layout. I will change some things. There is a bit too much empty space on the page, and the width of the post area could be bigger. But then again even if I dont write a lot, it looks like a big post! And, of course, my picture is too small!! Oh vanity.. :-)

But the real cool thing is the old posts. You can browse THROUGH ALL MY PAST POSTS and do not have to rely on my momentary state of the mind for thoughts on stuttering research!

Admin work on stuttering

At the moment, I am doing more admin work rather than thinking about stuttering itself.

I am still preparing the conference at Telford (UK). The morning session is sorted, but not the afternoon session yet. But should prove to be very interesting. The theme will be cross-disciplinary questions. Per will talk about the levels D1/D2 receptors and how they might kick-start stuttering, and how the levels might be directly related to the statistical signals we see in genetics of stuttering.

I plan to do a flyer which I will send to all the people that might interested in the conference. I will also post it here, and I would appreciate any propaganda!

I am also sending my talk to a few people that I met at the IFA conference.

BSA Telford Conference

I am currently preparing the research section of the British Stammering Association (BSA) annual conference at Telford from September 15th to 17th. You find more information: here.

This year there will be a big research section on Sat Sep 16th. I have managed to get Denis Drayna from NIH, a leading experts in genetics of stuttering, Gerry Maguire, a leading experts in pharmacology of stuttering (he is the chief investigator for the Pagoclone study, I think, but certainly involved), Per Alm who has done excellent work in brain research and whom I consider one of the best and most rigorous scientists working on stuttering albeit with no permanent position, no research group of its own and not significant money behind, and Kate Watkins who is a lecturer at Oxford University and had done a lot of brain work before, and heads the research project into stuttering and hired Per to be postdoctoral researcher.

There will be a morning session with a research plenary followed by a Q&A session. Per, Gerry and Dennis will each talk about their respective research field and one has been achieved so far. I will give a brief 10-minute presentation to set the stage, but they will talk for 20-30 minutes each. I also chair the Q&A session with the panel being Per, Gerry, Dennis, Kate and Louise Wright, an SLT / researcher / lecturer who has been involved with the BSA for a long time and is probably best know for a multi-dimensional evaluation system called WASP. The research plenary will be attended by all conference participants, so we need to make it as conceptually simple and entertaining as possible.

In the afternoon, I am planning a mini-conference with talks by the researchers and debate with a multi-disciplinary slate... this is work in progress...

If you are interested in research, I hope you can make it to Telford in England!

I will also be completely jet-lagged as I return from a one-week consultancy project from San Diego (California) at 6 o'clock in the morning at London Heathrow.

Apologies

My apologies for no recent posts.

I am actually quite busy being a consultant, and trying to settle in my new flat.

In the next days, I will talk more about the IFA conference, and I will explain what is going to happen at the BSA conference in September in Telford. There will be a big session on research into stuttering. I invited three leading researcher in the three most exciting new research field of stuttering: Per Alm for brain research, Denis Drayna for genetics, and Jerry Maguire for pharmaceutical research.

IFA conference Day 1 and 2

I am currently in Dublin attending the IFA conference. Here are some interesting talks I have been to.

Gerald Maguire was talking about drug treatment. He also discussed the Pagoclone results. However, he did not reveal much more than at the press release on the Indevus website: see my earlier posts. He said that the journal that they submitted the results to has an embargo until their own press release. And this has not happened yet. Apparently, it is a journal that both practioners and medical doctors might read. So I guess they are aiming for Nature, Science, or Lancet. I asked him whether they take care of the possibility that a few severe stutterers significant improvements can distort the data. He said that they take very severe and mild stutterer out before the stats. To summarise, we need to wait a bit more for more meat on the study. However, he did reveal a bit more on the open-label extension. 90% of the participants kept on taking Pagoclone after the trials. He argued that this is promising.

Katrin Neumann spoke about her group's brain imaging studies on un-assisted recovered stutterers, and compared them to stuttering people and after-therapy people. I cannot remember the details now. But effectively un-assisted recovered stutterers and after-therapy stutterers show differences. She said that a region called BA47 (I think) is activated in un-assissted recovered stutterers. This region seems to have taken over some compensation that made this people fluent speakers. But people who underwent therapy showed different activations. Sorry, I am not being very clear. Just too many slides for 30 minutes.

Per Alm gave a talk on his pet theory that the basal ganglia is crucially involved in stuttering which leads to him explaining many stuttering facts (like fluency enhancing tasks) with the medial and lateral pathways for automatic speech and more-foccused speech. I spoke about this before on this blog. But it was good to hear it again.

More later. I need to go now and prepare my talk for tomorrow!!

IFA conference: RCTs

I have just started writing the article for my upcoming IFA presentation: "Lies, damned lies, and random control trials". The title might be a bit strong, but in today's world you need to get out strong message to get people's attention! The presentation is about the use of random control trials (RCTs) in stuttering. In the last year, two main treatment studies have used RCTs: the Pagoclone and the Lidcombe study. I want to show that RCTs cannot just be blindly applied to study the efficacy of treatment studies. This is especially the case for early-childhood dysfluencies.

Here is what I say. This is typically the result of months long subconscious brain storming and discussions with others.

First, I will explain what an RCT is. I have to admit that I have never been formally trained to know what an RCT is, so I have to make it up and looking at a few sources. What I understand as the standard form of RCT is the following: You have a group of people affected by a condition (high blood pressure, AIDS, worm infection, etc). You have a medication which you administer in form of a pill, and you want to see whether the treatment is effective. You split the group into two subgroups: a control group, and the treatment group. You have to do this in such a way as to create the same type of group; for example you select them randomly, and possibly control for the age or gender in each group. You give a pill to both groups, but only the treatment group receives the true medication and the control group a non-effective substance. The level of the condition is measured in both group before and after the test phase.

... I need to drive to the airport now .... still havent written the talk... i'll do it on my laptop... I will fly to Estonia first visiting a friend and doing a day visit to Russia! Then I am going to Dublin for IFA.

Abstracts from Nijmengen Conference

The abstracts of the 2006 Nijmengen conference is out: look on their website under Abstracts, and you will get a pdf file. Thx to Oren for this information! The conference is by far the most scientific one that also deals with stuttering.

Working on my IFA contributions

I am currently working on my contributions to the IFA proceedings. The deadline is on Friday, but sending it by Monday morning if enough. Unfortunately, I haven't started with the articles nor the presentations yet! And rumors go that others haven't done much more either. This is a typical occurrence for conferences. In many cases, deadlines are postponed by a week or two, and I would be surprised if the same happens here.

So what am I going to talk about? The first talk is rather low-key and non-controversial. I am going to give a workshop with "How should we use the Internet to help researchers and do meta-analysis?". I am hoping that people are discussing ways to utilise the Internet for research on stuttering. As a warm-up, I will give a quick presentation on different ways on how this could be done, and on what the obstacles are in my opinion. And then hopefully the participants will "take over" and a lively discussion will start. Here is a list of Internet utilities that I find useful:

- Pub Medline: Internet archive of all published articles on stuttering
- Messenger and VoIP: Chatting and talking to other researchers for free (I have done this extensively with Per Alm, Roland Pauli, and Oren Civier)
- Email: goes much faster than writing letters. Yaruss & Onslow debate (but this one is old by now! :-)
- Pdf / Word Files: you can easily send your research article to someone. (I often ask researcher to send me their article).
- Mailing List:
- List Archive: like Judy Kuster
- Blog: THE STUTTERING BRAIN of course, always the latest on stuttering (big readership after Pagaclone story broke=
- Replis in Blogs: Ingham.
- Online conferences:
- Wikipedia entry
- Open articles & Replies:

Some issues:

- researchers have no time.
- too many sources.
- secrecy dominates.
- old generation.
- no real scientific debate: more teaching of others
- too much information.
- difficult to judge quality of information
- etc

So I will make 4-5 slides for this workshop, and write 1-2 pages. That's it. The other article will be hard-core science. I want to make people aware that you cannot just apply the standard random control trials framework for stuttering. I have done a few statistical simulations, and show that for example the Lidcombe results are not as clear as they think.

More tomorrow.

Travel companion(s) after IFA?

I will be at the IFA conference in Dublin in two weeks' time.

The conference ends on Friday midday, I think. My flight goes back on Monday evening from Dublin. So I have from Friday midday to Monday evening to travel around Ireland. But I havent planned anything yet. I might rent a car.

If you are also at IFA and have some extra days, pls let me know and we can join forces! Preferences are obviously given to girls, people at my age (or younger :-), and stutterers! :-)

My email is tom DOT weidig AT physics DOT org

Auditory system: cause or necessary condition only?

I have spoken about the findings of several research articles that claim an abnormality (in activation or anatomy) in the auditory system, and its consequences: see here. I said that it dont believe that "bad hearing" is causing stuttering.

While cycling up a long hill (trying to imitate the Tour de France), I suddenly came up with a way that might explain lower activation in auditory regions. Here is the line of arguments:
1) People with PDS at birth have no different hearing capabilities (or potential for) than the average population.
2) Learning to speak effectively involves fine-tuning your neural networks to produce speech, and this is only possible with feedback from your auditory system. You need to hear to be able to fine-tune your speaking networks. That's why deaf kids cannot learn to speak properly (except if they get a Cochlane implant).
3) Some kids have a better auditory system than others, but they all manage to learn to speak.
4) Now, I assume that dysfluent kids have an inherent weakness / abnormality (genetics or neurological incident), and the fine-tuning becomes more difficult.
5) Only the kids that have abnormally good hearing are able to do the fine-tuning and recover. The kids with average and lower activation do not, even though had they not had the weakness / abnormality they would have.
6) So looking at dysfluent kids you will find average hearing capabilities (thinking everything is fine). But in adults with PDS you will see an on average lower activation of auditory system.
7) One can even argue that only a temporary delay in the development of the auditory system around age 3-5 will hinder fine-tuning. So you wont see a statistical signal either for all dysfluent kids or for stuttering kids after age 5.


This is only brainstorming. But this scenario shows well that something might not be a cause of stuttering (the weakness / abnormality is), but a necessary condition for it to happen.

Timeline of remission?

I am looking for the time line of remission (i.e. the recovery from (early childhood) stuttering).

About 5% of all children have disfluencies, but only 1% develop persistent developmental stuttering (PDS). I am interessed in how fast the 5% go to the 1% baseline of adulthood. Is it within 1-2 years of stuttering? So after the age of 5 or 7, 80% have recovered.

I am especially interested in the age group 9-13. Can one study therapy effect like in adults, or is there still a natural recovery rate to consider.

If you know of any literature, please let me know.

Yaruss - Onslow (Part II)

the second part of their debate...


Mark,
Regarding future application of theory, you imply that history must repeat itself, whereas I only say that it might. To prevent this, we both highlighted safe-guards, such as that the theory must generate testable hypotheses. Meanwhile, it is true that the data for other treatments are presently lacking–much work remains to be done. To accomplish this, I would like to have, as a starting point, a framework to support that therapy and the necessarily data collection.

Uni-dimensional explanations do not provide an appropriate starting point, for stuttering encompasses more than just speech disruptions, and the factors involved in the onset and development of stuttering involve more than just speech disruptions. Thus, I would challenge your claim that “multifactorial theories of stuttering are completely and irretrievably wrong.” It might help if we were to differentiate between multifactorial theories and resultant (or non-resultant) treatments. Obviously, theories cannot be used to treat stuttering, but they can provide the basis for a testable treatment.

As we move toward collecting the necessary data, we might benefit from starting with a well-constructed theory that provides an explanation of why we might manipulate certain variables. That would then lead to studies, ultimately including clinical trials, that demonstrate the validity and efficacy of a treatment program. Lidcombe has accomplished this goal from an atheoretical perspective, if I read you correctly. I believe the same goal could be accomplished (though this has not yet been the case) from a theory-driven perspective.

Scott,
Yes, a new theory can lead to a new treatment checked by clinical trials. But not through a multifactorial theory.

There is nothing wrong with multifactoriality. Life is multifactorial, so is love, a toothbrush, and so is stuttering. However, arguing that because stuttering is multifactorial, therefore the cause of stuttering must also be multifactorial is an error of logic. This logical fallacy is called the representativeness reasoning: to believe that the nature of effects reflect the nature of causes (see Onslow, Attanasio, & Packman, 1998).


Additionally, multifactorial theories do not do what a theory should do: explain things (Packman & Attanasio, 2004). Why do word and syllable repetitions predominate at the onset of stuttering? Why can stuttering be intractable for a lifetime? Why do those who stutter have problems with tapping finger sequences? And why do those who stutter have the problem while playing wind instruments?


Mark,
I found the list of factors you find relevant to the explanation of stuttering to be enlightening. In developing a theory to explain the phenomena of stuttering, it is appropriate to begin by listing those phenomena. Here are some questions that strike me: Why does stuttering start at a time of rapid expansion in linguistic, motoric, and temperamental aspects of children’s development? Why do people who stutter react to their stuttering in the way they do? Why does the occurrence of stuttering seem to be so closely linked with aspects of language planning in both children and adults? Specifically, why is stuttering not distributed randomly with respect to linguistic, situational, and experiential variables? Why do people who stutter show differences in motoric stability and linguistic processing, even when they are not engaged in speaking tasks? What about differences in neural function and possibly even structure? And temperamental differences? Finally, why do multiple loci seem to be implicated in genetic modeling?

This is not an exhaustive list...just a start of the questions that would need to be answered by any comprehensive theory. Posing a single factor to explain all of this would seem unlikely. Posing multiple, interacting factors gives the opportunity to save more of the phenomena.

Moving back to treatment, I would like to see further discussion of what might be going on for children who do not recover through Lidcombe, and what might be changing in children who do recover through other therapies. This would enhance our understanding of the disorder from both a theoretical and clinical perspective, and it would provide better justification for why we do what we do in therapy. Until we understand the reason for the change in fluency to supplement the basic fact of the change itself, I will remain dissatisfied with the knowledge base and will seek to identify some means of explaining the many and varied phenomena of this disorder.


Scott,
Clinical trials and cohort studies give me no reason to think that there is a group of children who do not respond to the Lidcombe Program. Jones et al. (2000) reported 261 treated children of which 250 completed Stage 1. Thus, 250 children attained zero or near-zero stuttering. The remaining 11 did not complete for reasons common in speech pathology treatments, such as moving away, illness, severe family problems. These findings were replicated by Kingston et al. (2003). A similar picture has emerged with the Phase I, II, and III clinical trials that have been published.

Mark,
Still, questions remain about its real-world effectiveness, for not everyone may administer the program as efficiently or as effectively as you and your colleagues appear to. We have discussed non-responders more than once before. You may not see them in your studies, but I know of other clinicians who see them in their daily practice. Clinicians have consulted with your team and other Lidcombe practitioners, and your team is quite responsive in trying to help clinicians in such cases. So such cases seem to exist.

As for other treatments, in a preliminary study of the approach used at our Stuttering Center (Yaruss et al., in press), we found that 17 out of 17 children enrolled in the program (not just those treated to completion), achieved improved fluency and maintained it over a follow-up period of at least 2 to 3 years. Most required only the 6 sessions that the program is designed around, but a few children required more treatment. Why did the 4 children require more than 10 sessions? Ultimately, these children also recovered, but the lack of immediate success might teach us about the disorder. So, we look at factors like language skills, motor skills, temperament, family history, and life experiences to help us better understand the treatment and the disorder itself. Have you conducted similar inquiries with Lidcombe? What theoretical framework did you use?

Scott,
Again, there is no scientific evidence for the existence of a substantial cohort of non-responders. Also, my position is that the population effectiveness of the Lidcombe Program is currently unknown to science, because no effectiveness research has been conducted. But we have evidence for its efficacy. Epidemiological studies would be needed to address the capacity of the Lidcombe Program to impact at the clinical population coalface. We have put in place various ways to facilitate that effectiveness. For example, a Lidcombe Program Trainers Consortium has been established in seven countries ("Lidcombe Program Trainers Consortium Grows in Europe," 2005). Each year, hundreds of clinicians around the world receive training from Consortium clinicians who meet published scientific benchmarks for the treatment.

If you know of someone who consistently does not get children to stop stuttering with the Lidcombe Program, there are at least two possible reasons. First, they may have not done the treatment according to the manual that can be downloaded from our website. Second, they may benefit from Consortium training in the treatment.

You accept that the LP has the best clinical trials efficacy research. So, what treatment do you select for a four-year-old stuttering child in need of treatment?

Mark,
I treat as described in Yaruss et al. (in press), but I also work to validate that treatment and collect data to refine and improve the treatment. Though I do not use Lidcombe, my staff has received training and we have discussed the principles of the treatment in detail. Furthermore, I always encourage clinicians to participate in the consortium training directly if they are considering using the Lidcombe program. I fear that many might not be using the treatment correctly, and without an understanding of why the treatment should work, it is impossible to know what the results from various modifications might be. This is yet another reason I keep returning to the value of theory, and why I asked the question that started this dialogue.

For my part, before I accept a treatment such as Lidcombe, I want to have a better idea about the nature of the changes that are taking place. Thus, in my clinic, we are actively engaged in examining not only the efficacy of the treatment we use, but also the mechanisms behind the observed changes. Much more work remains to be done, but our work, and that of others, is progressing.