Is your kid still stuttering after Lidcombe?

I want to hear from parents and clinicians who treated their child with Lidcombe and the child is still stuttering. Only a few cases are enough to show that Lidcombe is not highly effective, because they will immediately drag a perfect 100% recovery down kid by kid and it's not far to go until 80% natural recovery. Researchers should search for those kids, because this trial does not need as many participants to get to statistical significance.

Here is one kid I found on STUTT-L:

We did not have a strongly positive experience with the Lidcombe, but did try it for several months with my little boy, Steven, who had just turned 4 (he's now 4 1/2). Our little boy seemed to do well with it for about the first 6 weeks, but then after that began prolongations, blocking, and ingressive breathing. I knew those were not good signs, but did not get any assistance from Steven's clinician when I requested 'tools' to help him with these struggles. I have come away thinking Lidcombe is possibly helpful for children with mild stuttering.
Anyway, our clinician calculated the %'s and we did one rating for a full 24 hours. We just averaged his score---meaning we considered the best and then also the worst scores for the 24 hours.
We have many mixed feelings about Lidcombe (as I think many other parents and clinicians do, too). We are now pursuing a more traditional approach--would be happy to talk with you more about it if you would like.

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The outing of the stuttering king

In the King's Speech, the king has been outed against his will, and certainly against that of his wife, the Queen Mother. Much like in the gay community in the Eighties and Nineties, the outing and coming out of prominent figures will lead to a seismic shift not only in the public perception but also in the self-perception of the affected individuals. Ironically, stuttering is blatantly obvious when most stutterers speak, but it's hidden in that it's not talked about.

The movie will have a dramatic impact on stuttering world-wide. Not because of the realistic portrayal of stuttering, but mostly because The King Stuttered.

1) Stuttering is now acceptable. Many influential people did not come out publicly about stuttering. But now even the king stutters, so it's OK for them to say: I am like the king. I have the same issue as the king. Like the king, I overcame obstacles and this made me a stronger person. Check out Sandra Howard's coming out. She is the wife of the ex-leader of the British Conservatives.

2) "Ordinary" people will also come out, or be asked to admit to stuttering. If the king stutters, you are a bit like the king! Many will be proud to be like the king. Don't know why, but they will!

Pagoclone trial ends beginning of January

A reader gives us some more insight into the end of the Pagoclone trials. His report confirms what we know. The trial has ended for most, and the few showing some success continued taking the compound. The company probably wants to see whether their effect is waning, or stays stable. I have always said that some of the success could be due to statistical fluctuations (the trial coincided with an up-swing of fluency) plus measurement bias and possibly a long-term placebo. Those extra months for the successful groups should clarify my hypothesis. My prognosis: some will loose those effect. But to be strict, one would really need to create two groups: the successful one with no continuation and the successful one with open-label to discount for further placebo.

Here is the report:

Hi Tom,

I participated in Pagoclone study in NJ which concluded for me in October,10. When I enrolled in the study, I was told that I'd be compensated for my time and travel by getting paid $50/visit. I made around 10-12 visits and was told that I was sent a check at the conclusion of the study. When I Inquired about my compensation at the end of the study, I was told that study is still on-going for some of the participants and it'd conclude in December. I again asked about it the last week and now the center where I went for trial, gave me a date of January,11 citing the reason that the study is still going on. This is frustrating to say the least.I believe the study/trial has concluded for everybody. They have to compensate me as they promised. I'm not sure if this delaying tactic is at the part of Pagoclone or the center where I was enrolled in the trial.

Can you post this letter anonymously on your forum and put the question in front of your readers if any body else is also encountering this situation of is there a way I could contact Pagoclone myself.

Oxford Dysfluency Conference on September 1-4th 2011

The Oxford Dysfluency Conference is from September 1-4th 2011. I have been to the last three conference, I think. The setting is very nice, the historic university town of Oxford. The conference is also OK, with the usual ups and downs. Don't expect a true scientific conference. For many years, it was the only conference on stuttering apart from the ISA and IFA conferences. They have been organized by Dave Rowley, a loyal TheStutteringBrain reader from de Mountfort University.

Unfortunately, he has given the responsibility of the many conference admin shores to Elsevier, the leading academic publisher. As a result, the prices have gone up dramatically, and I am sure many are going to ask themselves whether it's worth the money: £595 + 20% VAT. British institutions can probably claim VAT back, but the lonely therapist cannot not can overseas attendants, I would guess. As Elsevier is not able to provide the full price on their website. I have done the *very* difficult calculation: 714£. Plus travelling expenses, and you have to count 800£ for British, 900£ for continental European, and over 1000£ for

Onslow on The King's Speech

Mark Onslow spoke reasonably about The King's Speech. He even managed not to mention Lidcombe, but claims that nowadays we know exactly what to do with adults and children who stutter. I am not so sure, but such claims obviously bolster the political capital of the speech and language therapist establishment. And he says that not minimizing stuttering at a young age creates terrible problems. I guess I would agree, but this statement also backfires in that by judging stuttering as a terrible problem he thereby creates part of the handicap experienced by people who stutter. No problem, no work?

But one mistake. He claims that Newton stuttered. This myth is just not dying out. I should create an award price. Five hundred for the person who proves to me that Newton stuttered!

On The King's Speech from a journalism student who stutters

Check out ‘The King’s Speech’: A Stutterer’s Reflection by Adam Polaski, a junior journalism major at Ithaca College.

We must get a text scroll into The King's Speech

That's what we are all afraid of, from Pam's facebook post:

A co-worker just came to me. She: "I saw The King's Speech last night". Me: "how did you like it?" She: "people may come away with wrong ideas, like my husband. He thought it was an emotional problem. I corrected him. Maybe there needs to be a dialogue about the myths".

Actually, I have a brilliant brilliant idea. We should lobby the producers to include a text scroll down on stuttering after the movie.

Three very simple messages STRAIGHT INTO THE MINDS OF MILLIONS!

Stuttering affects 5% of all children and 1% of all adults across all cultures.

Most stuttering has a genetic or neurological origin, and gets accentuated by strong emotions, stress, and mood.

There is no cure but good treatment reduces frequency and severity of stuttering, avoidance of speaking, emotional suffering, and improves self-esteem.

Of course, I am an idiot. I should have come up with this idea months ago! It might not be possible any more. Maybe for the DVD or foreign language release.

In any case, write to your association with the request!

Peter and Nan on Lidcombe at StutterTalk

The Larry Kings of stuttering discussed Lidcombe's academic claim of treatment success, i.e. the Emperor's New Clothes. When I say to the king: "Wake up! You are naked", they would say: "My Lord you might want to consider the possibility that other people have more clothes on than your Highness."

They made many important points that are frightfully close to the ones I made on my blog. ;-) Therapists should definitely listen to the podcast. Nan made the interesting point that the Lidcombe group needs to publish a lot to get funding. I'll get back to this points in relation to the wwwikileaks documents in a future post.

Here are a few extra comments on their debate:

• Taking a theoretical perspective bypasses all this esoteric debate on statistics and empirical data: Stuttering starts due to a neurobiological cause due to either genetics and/or developmental issues. So the questions become: Can operand conditioning undo the neurobiological cause? How does natural recovery undo the neurobiological cause? My answer to the second question is: the neurobiological cause is just temporary, e.g. different development schedule. I would answer the first question with a moderate NO. Brain plasticity is a myth. Sure, targeted practise can increase or decrease the brain resources used, and optimizing occurs. But operand conditioning is about learning, which means changing memory to have new behaviour. Kids can speak more fluently, and the conditioning tells the brain to use this behaviour. It does not work on the general structure of the brain.
  
  It can change your behaviours but not the neurobiological cause. So I would expect kids who undergo Lidcombe to change their behaviours and decrease stuttering behaviours with a better control over stuttering moments. But the neurobiology is not affected. Either the brain naturally recovers or the brain stays. If it stays, the critical question is whether the kids who have shaped their behaviours via operand conditioning relapse or not. But it is clear to me that the neurobiological cause is not going away.
• Nan Ratner needs to decide whether she wants "1000 kids to get decent statistics" or claims that there is some evidence for success. How do the two square up?
• They did not talk about the children's version of relapse after stuttering therapy. Rightfully, the dogma states that the majority of adult patients relapse after therapy. It is the norm and not the exception. But I rarely hear people talk about it for Lidcombe. We should expect that a treatment with operand conditioning to be very vulnerable to relapse. Why? Because the cause that led to maladaptive behaviours is still present, because the neurobiological cause is still there. This cause leads to temporary speech initiation delays, which lead to reactions which leads to learning.
• Peter made the interesting point that decades ago parents were blamed for the stuttering of their kids and now some within Lidcombe blame parents for not properly implementing the treatment. In a sense Mark Onslow is right, with perfect parents you can probably keep shaping the behaviour in such a way that stuttering is minimal. But we do not live in a perfect world. Parents loose influence once kids go to school.

Book on choral singing and stuttering.

I found a wikipedia entry for Who Asked the First Question? The Origins of Human Choral Singing, Intelligence, Language and Speech, a book authored by Joseph Jordania, a ethnomusicologist and evolutionary musicologis. Part of the book deals with stuttering:

Cross-cultural studies of stuttering and dyslexia

Cross-cultural studies of the stuttering prevalence is widely discussed in the book. It is claimed that there is a positive correlation between the presence of choral singing traditions and the higher prevalence of stuttering in a population. The book surveys the existing literature on the cross-cultural study of stuttering and it is suggested that on one hand European and particularly Sub-Saharan African populations have higher stuttering prevalence, and on another hand Native American, Australian Aboriginal and East Asian populations have much lower stuttering prevalence. Cross-cultural studies were very active in early and middle of the 20th century, particularly under the influence of the works of Wendell Johnson, who claimed that the onset of stuttering was connected to the cultural expectations and the pressure put on young children by anxious parents. Johnson claimed there were cultures where stuttering, and even the word "stutterer", were absent (for example, among some tribes of Native Americans). Later studies found that this claim was not supported by the facts, so the influence of cultural factors in stuttering research declined. It is generally accepted by contemporary scholars that stuttering is present in every culture and in every race, although the attitude towards the actual prevalence differs. Some believe stuttering occurs in all cultures and races at similar rates, about 1% of general population (and is about 5% among young children) all around the world. A US-based study indicated that there were no racial or ethnic differences in the incidence of stuttering in preschool children.^[3][4] At the same time, there are cross-cultural studies indicating that the difference between cultures may exist. For example, summarizing prevalence studies, E. Cooper and C. Cooper conclude: “On the basis of the data currently available, it appears the prevalence of fluency disorders varies among the cultures of the world, with some indications that the prevalence of fluency disorders labeled as stuttering is higher among black populations than white or Asian populations” ^[5]
Different regions of the world are researched very unevenly. Understandably, the largest number of studies had been conducted in European countries and in North America, where the experts agree on the mean estimate to be about 1% of the general population (Bloodtein, 1995. A Handbook on Stuttering). African populations, particularly from West Africa, might have the highest stuttering prevalence in the world—reaching in some populations 5%, 6% and even over 9%.^[6] Many regions of the world are not researched sufficiently, and for some major regions there are no prevalence studies at all (for example, in China). Some claim the reason for this might be a lower incidence in general population in China.^[7] Jordania suggested that the differences in stuttering prevalence may have a genetic basis

The Christmas miracle of Mr Tim

I wish you all Happy Xmas and a Happy New Year!

Check out the Xmas miracle! (tip from a reader)

WWWikileaks: Who has written the PhD thesis?

A few months ago, I received wikileaks-quality documents with the request that I should make the documents public. I have been hesitating ever since, but wikileaks has lowered my threshold. People who stutter and unaffected academics should know what issues exist in the stuttering research academia. So I am starting wwwikileaks.

The documents shed an interesting light on an unreported and rarely discussed aspect of the academic world of stuttering, namely the quality of the training of PhD students.

Remember the presented documents are only one aspect of an actual event that has happened (or it is a very convincing and mischievous forgery).

Why should we not know? If everything is to acceptable academic standards, the people mentioned in the documents should be comfortable with their actions and its release.

The leaker sent me scanned documents which, according to the leaker, led her to come to the following conclusion:

Research Symposium at NSA in July2011

A reader has pointed me to the up-coming research symposium at the NSA conference beginning of July.

Here is a list of the speakers:

Gayle Beck, Ph.D. – University of Memphis (keynote speaker)
Deryk S. Beal, Ph.D – Boston University
Courtney Byrd, Ph.D. – University of Texas
Dennis Drayna, Ph.D. – National Institutes of Health
Jennifer Kleinow, Ph.D. – LaSalle University
Gerald A. Maguire, M.D. – University of California, Irvine School of Medicine
Walt Manning, Ph.D. – University of Memphis
Laura Plexico, Ph.D. – Auburn University
Nan Bernstein Ratner, Ed.D. - University of Maryland
Jennifer Watson, Ph.D – Texas Christian University
Mandy Hampton Wray, M.S. (doctoral candidate) - Purdue University
Scott Yaruss, Ph.D. – University of Pittsburgh

I know a few of them. I have never heard of others. The key speaker seems to be a psychotherapist. Ask yourself why these have been invited but not others? How do we know that these are the brains? Or are they just the best adapters conforming to the US academic landscape? For example, I would bet that Mandy who is a doctoral candidate and who I don't know is on the list because she has some relationship with the organizers. Just a guess. Not saying she is bad, but there are so many doctoral candidates.

My first impression is that each is speaking about their own research. I hope they have a structure in place for cross-disciplinary debates.

The reader also asked whether I will be there. The answer is: NO. I don't know the organizers which is nearly a requirement if you want to be invited as an non-academic. They probably consider me a kind of crackpot or eager amateur until they debate with me. And they want to keep the quality level high. Second, from those academics who know me, some don't want to have me, because I ask lots of annoying questions and commit faux-pas. Some don't want to have me, because I have publicly criticized their work. Some don't want me, because I have not behaved as they wish I should have behaved and so don't want to support an invitation.

Whenever stuttering drags you down..

Apologies to John Harrison for deleting his comments

My apologies to John Harrison, and possibly others. Your comments went into my Spam Comments folder, and, instead of Not Spam, I hit the Delete button! I have moderation on for comments on posts older than 15 days, and comments with links sometimes go into the spam folder. And only check them from time to time.

I only briefly read through his defence of Bodenhamer, and would be happy to respond.

Can you please repost? Sorry, I know it was a rather long comment.

Bodenhamer is probaby a creationist!

I have been taken to task by several people, the followers of Bodenhamer and people who agree with my arguments, with me mixing in religion. Some even talk about an ad ad hominem attack.

First of all, I have not committed an ad ad hominem fallacy, because I did not say that Bodehamer's statements on stuttering are wrong because he is what he is. I actually presented counterarguments.

Second, I have started to move from looking at his arguments to the person himself. I mention religion, because I want to understand his and his follower's inability to engage in an intellectual debate, and actually change their views based on arguments and empirical facts. And, he reminded me of the mindset I have experienced in my personal talks with creationists some months ago. He and they exhibit religious beliefs.

And guess what! Bob Bodenhamer is mostly likely a creationist, and he certainly works for such a church. He writes in his biography:

Dr. Bodenhamer has served four Southern Baptist churches as pastor. He is presently serving as pastor of a mission church called Christ Fellowship Community Church. His time in the pastorate spans 44 years.

Southern Baptist is infamous for its inability to absorb scientific knowledge and rationality into religion, unlike the Catholic or European Protestant churches. So I found a FAQ on creation on the website of Christ Fellowship Community (note he is pastor in a small church in North Carolina). And here is what they write:

If one takes the Bible at face value, Genesis 1:1-31 seems to suggest that God created everything in six literal days. There is no reason to think that a being as great as God could not accomplish such a feat within this time frame.

People need to know where Bodenhamer comes from. He can believe what he wants to believe. But people, and the BSA who invite him for conference calls, need to understand that they cannot trust him to change his views based on science. In fact, he is an enemy to science.

Hit a hornet nest

I seem to have hit on a hornet nest, as they swarm out for a few attacks in defence of Bodehamer:

To denigrate the work of someone who has such success because you don't agree with it, is both unkind and unprofessional, and only contributes to the tension in the stuttering community at large.

(a) I denigrate his statements on the causes of stuttering, because he does not change them in the face of obvious and clear evidence to the contrary.
(b) I do not denigrate his desire to help and do not say that he has not helped some people.
(c) not "I" don't agree, but a lot of scientific articles and researchers don't agree with him.
(d) What is professional? To stay silent on the scientific non-sense he is propagating?
(e) What you can call "tension" is what I call an open intellectual debate with the demand for consistency with established science.

His views are religious. He and his followers want to believe, and arrange their world view around. Why does Bodenhamer not change his views despite clear empirical and theoretical arguments? Because he has the mind set of a believer of an unenlightened type. Maybe we should also ask Bob Bodenhamer whether he believes the earth was created a few thousand years ago? Does he deny evolution? Does he believe in a personal God that actively intervenes in our life and is not just a creator?

Given his state of mind on stuttering, I would not be surprised if he ignores empirical evidence here, too.

Bodenhamer: Second reply

I have come to the conclusion that he communicates and thinks in a style that is optimized for creating growth and positive change for stutterers, rather than in a style that is optimized for academic discourse or even "truth", whatever that is. As someone with an engineering degree from an Ivy League school I know what academics consider "truth", but I reject the idea that it is the be all and end all for advancing the lives of stutterers.

You are constructing a straw man here, because I never said that it is the be all and end all for advancing the lives of stutterers. I have explicitly criticised his causal theories on stuttering. I have nothing against him creating growth and positive change for stutterers. You can do this without knowing anything about stuttering.

Bodenhamer: First reply

 Several readers have left comments to which I would like to reply:

Explain to me why some people stutter on the same set of words in some situations and are fluent in others.

 It is not relevant whether I can give an explanation or not. I say that his statements are wrong, and I give evidence from brain imaging and genetics. You have not disproved my arguments.

Even though my explanation is not relevant to the debate, I will give it nevertheless. There is a neurobiological instability in the brain of people who stutter, unlike in fluent brains. This makes the speech system very sensitive to breakdowns at high demands. My theory is that

(a) some situations are more demanding that others. Maybe the person had a bad day, more stress, is ill, or just feels anxiety in the current situations. Moreover, in some situations our brain is much busier formulating our message and filtering out stuff.

All these things modulate the capacity of the sensitive speech system, and leads to block.

Pagoclone rumours

Here are good old rumours:

The Pagoclone study ended and they did not continue the study. They will be making a decision in December, I think, whether there was enough benefit to a sub-group of the trial study (meaning there was not a benefit to everyone in the study but definite benefit to some)  to justify continuing on with the drug.  My trial administrator in Atlanta said he saw definite benefit to a sub-group and he is still positive on the drug.

Please support Beth's research project!

Beth Harris asks for your support:

I’m a 4th year speech and language therapy student from De Montfort University, Leicester, UK. I’m doing research for my final year project on how often stuttering occurs alongside abnormal involuntary movements. Due to your position within the stuttering community, I was wondering if you could post a link?

The questionnaire has been granted ethical approval by the ethics committee at my University. Everything is anonymous and takes only five minutes to fill out.

This is the questionnaire.

Deconstructing Bodenhamer

The NLP stuttering guru Bob Bodenhamer writes on his website:

The cause: There could be several causes for blocking including genetic predispositions and/or developmental problems. However, our concern is not primarily about the first cause of blocking. Our concern is with what has continued the behavior. We believe that it is the meanings placed around those early experiences of struggling to speak that have become well learned which continues the behavior. This explains how most children grow out of stuttering while some don't - it is about the meanings that the child placed around the behavior. The question then becomes: was it "OK" for the child to stutter some or was it pointed out as unacceptable behavior? Click on the link "How It Works" for many articles depicting our beliefs about blocking as well as those of others.

He has completely misunderstood the nature of stuttering, and he keeps on spreading his pseudo-scientific babble. Had he actually read through several text books, he would realize his arrogant confidence and naivety on causes. So let me explain to him what is actually going on.

There could be several causes for blocking including genetic predispositions and/or developmental problems. However, our concern is not primarily about the first cause of blocking. Our concern is with what has continued the behavior.

He seems to be of the opinion that genetics or developmental problems are causing the first blocking and then magically disappear. That is clearly not the case as brain imaging studies show. Moreover, mutations in genes are present in the body until death. There is a neurobiological basis that is present in all adults who stutter. What has continued the behaviour is the neurobiological basis due to genetics or unresolved developmental issues.

We believe that it is the meanings placed around those early experiences of struggling to speak that have become well learned which continues the behavior. This explains how most children grow out of stuttering while some don't - it is about the meanings that the child placed around the behavior.

That is complete non-sense. For example, more girls than boys recover. Is he therefore saying that more girls recover because they place LESS meaning on blocks? That is just ridiculous. If anything, I would expect girls to be more susceptible to social pressure.

He falls into the fallacy that a theory that makes sense is actually true.

Here is what he should write. Stuttering has a neurobiological basis due to genetics and/or neurological developmental issues. On top of this, every person who stutters has a psychosocial adaptation to this neurobiological propensity to block. I am offering advice on how to change psychosocial maladaptation, which can reduce psychosocial stress and by consequence also reduce the severity and frequency of stuttering.

Yet more evidence for strong heritability from twin studies

Fagnani, Fibiger, and al. have just published a twin study using a database of over thirty thousand twins. Their findings are consistent with past twin study results (see on old post of mine on the Dworzynski study). They find a high heritability of 80%, and only moderate unique environmental effects. Note that they do not mention shared environmental effects.

This finding fits my view on stuttering. Genetics drives the onset of stuttering in many people. The other factors (alone or in combination with genetics) are internal developmental issues caused by unique environmental events like neurological incident, virus and head trauma. Only some of these events were reported in the twin study, so the effort is measured as moderate. Needless to say that, as in many other conditions, the social environment plays a negligible role in the actual onset.

Here is the abstract:

Heritability and environmental effects for self-reported periods with stuttering: A twin study from Denmark.

Fagnani C, Fibiger S, Skytthe A, Hjelmborg JV.

National Centre for Epidemiology, Surveillance and Health Promotion, National Institute of Health, Rome, Italy.

Abstract

Abstract Genetic influence for stuttering was studied based on adult self-reporting. Using nation-wide questionnaire answers from 33,317 Danish twins, a univariate biometric analysis based on the liability threshold model was performed in order to estimate the heritability of stuttering. The self-reported incidences for stuttering were from less than 4% for females to near 9% for males. Both probandwise concordance rate and tetrachoric correlation were substantially higher for monozygotic compared to dizygotic pairs, indicating substantial genetic influence on individual liability. Univariate biometric analyses showed that additive genetic and unique environmental factors best explained the observed concordance patterns. Heritability estimates for males/females were 0.84/0.81. Moderate unique environmental effects were also found.

Had I participated in the Pagaclone trial

Over the last months, I felt that my fluency has improved. I recently realized that had I participated in the Pagoclone trials, I would be written:

Hey guys, I took part in the trial months ago, and I noticed that my fluency has improved. Pagoclone is definitely working for me. I think you should try it out. But of course I am not saying that it works for all.

Workshop on Brain Speech Processes

The Society for Neurosciences organized a workshop on COMMUNICATION ENGAGES COMPLEX BRAIN CIRCUITRY AND PROCESSES: see pdf file.

Research released today shows that:

• The network of brain connections vital to understanding language is more extensive than previously thought. Researchers identified new speech-related pathways by mapping language areas in the brains of people with and without language difficulties (Nina Dronkers, PhD, abstract 837.13, see attached summary).

• People who stutter show abnormal brain activity even when reading or listening, which suggests stuttering is due to problems in speech processing, not just production (Kate Watkins, PhD, abstract 563.19, see attached summary).

• People process words spoken in their native accent differently compared with other accents, which may explain perceived communication difficulties and social inferences attributed to foreign accents (Patricia Bestelmeyer, PhD, abstract 169.13, see attached summary).

• Men who stutter show different brain connections than women who stutter. These findings may help explain why five times more adult men stutter than women (Soo-Eun Chang, PhD, abstract 790.9, see attached summary).

(Thanks to Oliver for the link.)

Note: the Society is a great organisation and publishes a primer on neuroscience key concepts and a booklet on neuroscience.

Participate in research project

A student needs participants for his project on Adults Impressions of Private Therapy for Stammering

I am a final year undergraduate student studying speech and language therapy at DeMontfort university, Leicester UK. I have put together a small website www.researchstammering.com, so that I may collect information from adults who stammer, on the types of private therapy that they have undertaken from the age of 18 years. ....

The research is conducted through a questionnaire that should take no longer than 15mins to complete. It can be accessed at: -

Questionnaire: www.researchstammering.com/questionnaire.html

Emily Blunt: Fluency is a goal for everyone?

StutterTalk, and especially Eric, were really excited by their latest guest, movie actress Emily Blunt.

First, she really did stutter when she was a young teenager. All her comments and descriptions are very realistic, and shared by many people who stutter. So she does understand us who are still stuttering.

Second, she tells the story on her being saved from stuttering due to acting, but what she really means is that stuttering waned at the same time that acting happened.

Don't understand the critique

A new blog Stutter-Mind writes on stuttering focussing on medication

The most vociferous critics of fluency drug testing (e.g., The Stuttering Brain blog; Roger Ingham, Journal of Clinical Psychopharmacology, October, 2010) rely heavily on the placebo argument to bolster their beliefs and prejudices--namely that individuals respond favorably to a particular drug not because of its therapeutic efficacy but rather through a placebo effect. And, according to them, this effect might be short lived. Since stuttering is basically a mind-body problem, and the mind

Pagoclone is dead, long live Asenapine?

Ora and Holger sent me this very recent interview with Jerry Maguire.

Maguire seems to have given up on Pagoclone:

A few years back Maguire and his team tested a drug that showed great promise: Pagoclone, the only drug ever designed specifically to help stuttering [ERROR OF AUTHOR], eased anxiety among subjects and helped them speak more fluently, without any major side effects. But it hasn't been approved by the Food and Drug Administration, and it won't be any time soon, Maguire said.

And now he seems to believe in Asenapine:

... and he may have finally found the solution: a drug that's going through a trial at UC Irvine

Science must not care about its impact

Dave sent me a link to an article by Goldrake who is an interesting guy highlighting the same type of bad science. Check out his website.

However his article is on how a genetic origin adds more stigma to those with such a disorder.

And lastly, more compelling than any individual study, a review of the literature to date in 2006 found that overall, biogenetic causal theories, and labelling something as an “illness”, are both positively related to perceptions of dangerousness and unpredictability, and to fear and desire for social distance. They identified 19 studies addressing the question. 18 found that belief in a genetic or biological cause was associated with more negative attitudes to people with mental health problems. Just one found the opposite, that belief in a genetic or biological cause was associated with more positive attitudes.

I say very clearly that science should and must not care about how their findings impact on society and individuals with a biogenetic disorder. Science is about describing aspects of reality, and this cannot change depending on whether its impact is good or not.

However, no disorder ever is purely biogenetic. Humans are biopsychosocial beings with biological, psychological, and social processes being intricately linked. Whatever the origin of a disorder, be it biological (like a disease or gene), psychological (like traumatic stress), or social (like bullying), the impact is always felt on all three systems. For me, stuttering definitely starts and stays a biogenetic disorder, but its impact change psychological and social processes as well which in turn add to the disorder.

SIGN THE PETITION

Please please please please please sign the petition against an Indian movie that ridicules stuttering.

Go here for the on-line petition of the Indian Stuttering Association.

And please spread the link all over the stuttering sphere!

Are stutterers the new untouchables?

India is infamous for its caste system, with the untouchables at the bottom of the social rank. As the caste system softens up, the attitude towards people with handicap doesn't. Check out this latest Indian movie that makes fun of people who stutter. I invite you all to contact the movie makers and condemn the movie. That also concerns stuttering associations worldwide. But I already expect the National Stuttering Association to cowardly hide behind the "We only comment on national matters" as they did with my request for support when I had to deal with Luxembourg ignorance.

Thanks goes to Eric for making me aware of:

Being from Sri Lanka, I was keeping an eye on an Indian PWS group's yahoo group mailing list. I just got info about a bollywood film that mocks PWS.

Here's the message. I don't know if you have to have the yahoo group membership to view it. I'll post the entire message at the end.

Here is the link to an online petition.

Could you mension this on your blog, or increase public awareness in some other way?

On causality, correlation, experience, and interpretation of experience

Peter's comment is a good example of fuzzy thinking on causality, correlation, experience, and interpretation of experience, and a way of thinking that I often find with many but not all clinicians.

"David Seidler says that his stuttering was triggered by their moving to the US from Britain! Oh god. I hope he doesn't repeat that line too often. If you know him, tell him that millions moved to the US and did not start stuttering."

MANY PWS have stated that their stuttering was triggered by a stressful event. This should not be a point of debate, it's common knowledge. There is a difference between "triggered" and "caused". Why do you take issue with this?

Here is the resolution:

1) Yes, "many pws have stated that their stuttering was triggered by a stressful event", but they are deluded.

a. humans tend to reduce events into a single event. Look at 9/11, there is no single event at time T, but a series of events on the time scale of minutes, days, weeks, and years, on the spatial scale of

The King's speech movie

The movie The King's Speech (and here) will be the media event on stuttering for at least a decade. So please stuttering associations prepare a media strategy! It is the first main stream big screen movie that exclusively and explicitly focuses on stuttering. Stuttering is not just a symbol of nervousness, hesitancy, or fun, but the movie portrays a real person who stutters with all his issues, challenges and triumphs. No doubt, reality was sightly less dramatic. But I hear of realistic portrayals, i.e. no cures but improvement in speech and in psychosocial adaptation. This movie will do much to change the common people's perceptions. Colin Firth plays the king: the stuttering or stammering George VI or the stutter/stammer of George VI. (This strange sentence  gets a better google rating! ;-) We all know him as Bridget Jones' fall back guy and as Mr Darcy.

Unfortunately, I have also changed my view on the Queen Mother. I always looked at her biblical age with awe and inspiration. But may be she should have died at a reasonable age...

It turns out that David Seidler [the script writer] also had a stuttering problem as a child and drew inspiration from the king's struggle. Early in his career he wanted to write a screenplay about it. He dutifully asked the Queen Mother for permission. She agreed but told him "not in my lifetime". Little did he know she would live to be 101 and he would have to wait another 30 years.

I also watched a press conference where David Seidler says that his stuttering was triggered by their moving to the US from Britain! Oh god. I hope he doesn't repeat that line too often. If you know him, tell him that millions moved to the US and did not start stuttering. And millions started stuttering without moving to the US!

I challenge Rosalee Shenker to a public debate at the Oxford Dysfluency Conference on the efficacy of the Lidcombe treatment

I take up Rosalee Shenker's offer and challenge her to a public debate at the Oxford Dysfluency Conference this coming summer on the efficacy of the Lidcombe treatment .... As she said: "I will not be able to use this forum for ongoing discussion of this issue. Perhaps we can continue to ‘talk’ in another venue." Specifically, I challenge her statement Direct treatment for preschool age children has been shown to be effective in eliminating stuttering.
We need more and better one-to-one debates rather than self-glorifying and rarely challenged monologues by boring key note speakers or experts. And many clinicians need to be challenged on the pseudo-science they are engaging in. They might be nice people, dedicated and competent clinicians, and self-less fighters for people who stutter, but scientific truth doesn't care at all and results from rigorous debates without a social and PC filter, an active knowledge of statistics and fallacies, and an acknowledgement of one's own limitations.

A cheap alternative to Speech Easy

Check out this website. The author is proposing to build cheap alternatives to Speech Easy and other providers. Needless to say that the commercial alternatives are 1000s of dollars more expensive than the real material costs. I talked to him, and he wants to remain anonymous, and he wants people who stutter, and he is one but mild as far as I can detect, to have a cheap alternative and "destroy" the grip Speech Easy has. But I am sceptical he pulls it off. But it's up to him to disprove me.

A new documentary on stuttering

Check out the documentary by Joke Nyssen: here.

My name is Joke Nyssen. In April I completed my first feature documentary. STAMMERS tells the story of Jef, an 18-year old with autism spectrum disorder, who struggles with severe stammering. Together with his parents Jef made several unsuccessful attempts to overcome his speech problems. Now, years later, he decided to fight his stammering for the very last time. He is getting help from Gert Reunes, a therapist who specializes in stuttering and who struggled with his own words for over thirty years. Together they are working to improve Jef's fluency. And now that Jef feels there is hope again, he might be able to improve in other areas of his life as well.... STAMMERS has become a film about learning to speak again, excelling oneself and the great difficulties in the will to change.

We would like this film to reach as many people as possible. Therefore it would be a great opportunity for us if you could put the link to our trailer and our contact info on your blog and/or Facebook page. If you like it of course! You can watch the trailer here. (I couldn't embed the trailer...)

Link to Facebook page: http://www.facebook.com/pages/Stotters/116619985020709?ref=ts

Contact info: sophimages@skynet.be

More genes found.

I have reported that Drayna has found more genes, so here is the paper. Again, his team knows about this for at least a year I would guess. Can please any of my agents send me the full article? ,-)

[Autosomal recessive means that the disorder only occurs when both copies of the gene are mutated. A crash course on genetics from a non-geneticist: every gene has two copies (alleles): one from your mother and one from your real father (which might be different to your father, statistics claims more than 5%). If both copies are mutated (changed), which typically means the protein that the mutation is coded for is not functionally relevant for the body, the disorder breaks out. For some disorders, even if only one is mutated, the disorder breaks out and one talks about autosomal dominant.]

Hum Genet. 2010 Oct;128(4):461-3. Epub 2010 Aug 13.

Identification of an autosomal recessive stuttering locus on chromosome 3q13.2-3q13.33.

Raza MH, Riazuddin S, Drayna D.

National Institute on Deafness and Other Communication Disorders, National Institutes of Health, Bethesda, MD, USA.

Abstract

Stuttering is a common speech disorder with substantial genetic contributions. To better understand the genetic factors involved in stuttering, we performed a genome-wide linkage study in a newly-ascertained consanguineous stuttering family from Pakistan. A linkage scan in this family using parametric linkage analysis revealed significant linkage only on chromosome 3q13.2-3q13.33, with a maximum two-point LOD score of 4.23 under an autosomal recessive model of inheritance.

Effective in eliminating stuttering??

Here is my exchange with Rosalee Shenker on her statement about efficacy in early childhood intervention.

Your statement "Direct treatment for preschool age children has been shown to be effective in eliminating stuttering." is highly misleading. First of all, you don't mention the natural recovery rate. So a clinician can NEVER know whether they have been effective or whether it naturally happened. Second, you don't give the evidence. The not-independent long-term study shows relapse. AND no-one ever mentioned that many children could NOT be contacted any more. Third, stuttering has a neurobiological basis some of which is genetic. NO behavioural treatment will ever change the genes and at best re-shape behaviour to better deal with a neurobiological deficit. But that's hardly an elimination.

Rosalee's reply:

Hi Tom. Thanks for your feedback. Although the natural recovery rate can be as high as 80% in the general population, the paper presented to this conference shows the results of a group of

Questions on Lidcombe / early child intervention

A reader left some challenging questions for me:

1) What choice do we have today. What choice do parents of children who stutter have today in the year 2010? Parents can't wait.

Parents feel that they have to do something now, but this is a fallacy a priori. Often, the best reaction in an emergency is to stay calm and don't do anything for at least 10 seconds!

My recommendation

1) go for a check-up to eliminate other language, hearing, and speech issues.

2) wait a few months as most will recover, unless stuttering is too severe and the child suffers visibly.

3) choose an experienced therapist that you like and let her/him do whatever they do.

4) pray best case scenario, natural recovery, and expect worst case scenario by focusing on improving psychosocial adaptation to a life-time stuttering brain.

2) No treatment or Lidcombe treatment?

Lidcombe treatment a few months after onset as I can only see upside potential. Those who would

The pseudo-evidence of Shenker

I am sick of Rosalee Shenker's claims of Lidcombe wonders. She might be a nice person and a dedicated clinician, but she is a wannabe researcher with fuzzy thinking.

If you check the website of her Montreal centre, you will read

For example, the Lidcombe Programme for Early Intervention in Stuttering has been credited with eliminating the progression of stuttering in preschool aged children within a mean 11 clinical hours, with fluency being maintained for periods up to 4 years.

 and further

Studies have shown that stuttering can be maintained at near zero following treatment.

These statements are misleading. If she were not a pseudo-researcher with fuzzy thinking, I would even accuse her of deliberately lying to parents of children who stutter.

Check my post on the follow-up study of Lidcombe: here and here. Even this flawed study shows the relapse. In which dream world do they live?

Again, Lidcombe might at best modulate stuttering and psychosocial adaptation to stuttering, but not more. But other treatments might well do the same.

Good news for brain imaging research.

Sou-Eun Chang has won a grant to study the neurobiological correlates of childhood stuttering with respect to the different sexes. Congratulations! She did most of her PhD imaging work and her post-doc under Christy Ludlow at NIH, and is now an assistant professor at Michigan State University. I met her at NIH together with Christy Ludlow for lunch. They have done important research on children and stuttering: see here.
I am not sure she will have the same support at Michigan State than at NIH. NIH is really a science factory with state-of-the-art equipment, and crucially technological/scientific expertise. It's much easier to work in such an environment as you are basically forced to do good science. Being on your own gives you more freedom, and more freedom to make mistakes.

Addition by Soo-Eun: "This grant is an "R01" grant that is supported for 5 years (this is to be a longitudinal study to track brain development differences). The total amount funded is $1.8 million. The info you have there covers only the first year of the grant, which will be paid out of a slightly different funding mechanism (American Reinvestment and Recovery Act) but nevertheless still through NIDCD."

Awarded grant: Sexual dimorphism of neural development underlying childhood stuttering

Chang, Soo-Eun, Assistant Professor, schang7@msu.edu; Web site

• Department: Communicative Sciences and Disorders
• Title: Sexual dimorphism of neural development underlying childhood stuttering
• Funding Agency: National Institute on Deafness and other Communication
  

Dr. Patricia Zebrowski is a brain

I just listened to StutterTalk talking to Dr. Patricia Zebrowski. I am impressed by her lucid and intelligent insights into stuttering treatment. It is such a pleasure to listen to a clinician who is not fuzzy in thinking, and actually gets to the core of issues. They talked about common factors in adult stuttering treatment. She also proposes running a trial to look at the impact of therapists while keeping the technique constant. But here she is stretching her expertise and intuition area. Such a design is just not feasible in real life.

In the same pod cast, Peter takes on the Catholics: many kids at his old school told him that they accept stuttering as God given. In Luxembourg, we are also Catholics, kind of. More by name than by substance. But I can assure him that we do not blame stuttering on God. Of course, in a sense stuttering is imposed on us by nature. We are born or developed into a person who stutters.

Genetics, developmental, and environmental

Judy's ISAD13 also has a forum called "Ask the prof", and I was part of that once. But I was not asked again... ;-) She might have thought that I was a professional or others complained that I was not a professional. So now the level is higher again. I am just not good enough to give vague fuzzy feel-goody answers. No-one has answered genetics questions yet. I guess Dennis Drayna didn't have the time yet. So let me answer one of them here.

In about 50% cases of PDS, genetic connection is found. Is it true? For the rest, is it safe to assume that their stammering is the outcome of environmental factors (early negative speech experiences and learned response to that)? Thanks in advance!

This is a common misconception, even among most SLTs. If 50% is genetic, then the rest is non-genetic. Most geneticists call non-genetic environmental, but this is highly misleading for the non-expert mind. A better wording is to talk about developmental factors and socio-environmental factors. Developmental is mainly the process by which the fertilized egg is developing to an adult human being. The key phase is up to age 5. Developmental issues can arise due to allergy, malnutrition, random incidents like hitting your head, and illnesses like virus infections. In the strict sense they are of course environmentally driven, but it's more about a healthy environment needed by the body to build itself. What most people mean by environment is the social environment of the child. So it's wrong to say that 50% is due to social environment. This number is very likely low, maybe 10-20%. And 30%-40% is due to developmental issues.

That is often what the blank slaters (i.e. we are born equal) think. X (intelligence, personality, stuttering) might be 50% genetic, but we are so eager to point out that 50% is environmental, i.e. societal. But of course, they got it completely wrong. Most of the environment consists of neurobiological development. So the society, e.g. parents, schools, and social interactions, is at best 10%-20% in many cases.

ISAD13 conference

Judy Kuster has opened the ISAD13 conference. It's a great structure for debate, and everyone can ask questions. It's also interesting for historians to explore how the web experience felt like ten years ago! ;-) But I am all for low-tech. Never break a working system. The unfortunate thing about the conference is the mixed quality of the content and the writers. Some are very good. Others are just bad. And I am not talking about the lay people who stutter. I find their contribution useful and interesting. They are focusing on their experience (mostly that is), and discuss ways to promote stuttering and help people who stutter. The offenders are the clinicians turned researchers. Instead of focusing on their clinical experience, they go off into grandiose research projects. And absolute disaster really. Fuzzy thinking. Confident statements. Committing every possible fallacy.

And what also drives me insane are the "I really enjoyed reading your paper." phrases of the students and others who post questions or comments. I absolutely despise their deference and glorification of authority. And you can literally feel that their intellectual thinking is lethally infected with the social filter, political correctness, and I-need-to-say-something-supportive virus. And where do they get that from? From their teachers. They too are confusing a therapy setting with an intellectual debate. Cut out the bullshit, and get to the point! And no respect for authority! Use your own thinking! Focus on the arguments and not the person!

BSA is propagating Newton myth

The British Stammering Association is organizing a Walk & Talk walk through London to raise awareness for stuttering and money. So far so noble! They had the highly original idea to follow the steps of historical figures who stuttered. So far so innovative! But they include Isaac Newton and he is even the lead figure.

But of course there is NO evidence at all that Newton stuttered. I have posted on this myth: see here. I even managed to get Judy Kuster to take Newton off the list, and now he is coming back...

Just imagine you become famous, and 400 years later a group of people with let's say irritable Bowel syndrome is walking across town making you the most famous irritable Bowel person, distributing leaflets with your face, and asking for a donation. It's just weird...

A non-informative and insulting reply to Ingham's reply.

In my last post, I have cited Ingham's comment to the Phase IIa article. Maguire, Riley and Franklin's reply is non-informative and insulting. Here are a few extracts and my comments on how NOT to reply to a journal comment.

The authors thank Dr. Ingham for his reply. Unfortunately, the authors think that he is mistaken in most of his assertions.

That is just an insulting way to start a reply, and adds absolutely nothing to the reply. A reply to a comment is not a blog post!


Pagoclone results in improved fluency with at least a 40% reduction in stuttering severity..

Well, and how about the placebo group's improvement? How about the variability in fluency? If it worked so great, why does the much larger Phase IIb does not have a good positive effect?

Ingham's behaviorist view is outdated, and it is fortunately being overcome by the burgeoning data that support that stuttering can be treated through pharmaceutical means.

What a ridiculous statement! First of all, it's off topic as it's Ingham who criticises the trial design. So they should reply on his criticism on their design. Second, I am not sure what this behaviorist view should be. Ingham's conviction that everything should be objectionably measurable? Again, who cares. They should counter his arguments. Third, where is this burgeoning data that support pharmaceutical intervention? I don't see it. I just see: you shake up the neurotransmitters and some are more fluent or dysfluent for some time. But no long-term trial has showed efficacy.

thankful to the Journal for supporting such an open debate.


which open debate?

It is our goal to combine efforts with the speech-language pathology community to better treat stuttering using all effective means possible.

That is a typical phrase from politics. First, it's off topic and does not address the trial design. Second, it's very vague on "efforts" and "all effective means possible". Third, the sentence propagates this myth of "if we work hard on it with all means, we will succeed". An empty statement.

as we strive to take the treatment of the millions of people who stutter from darkness to light.

What does that mean? Reminds me of Star Wars. Not sure why.

Summary: The reply is just idiotic. And to be honest, Jerry's style is different, and his reasoning is more intelligent than this reply. So I am wondering if one of the other two has written the response. My guess: Riley.

Ingham critical of Phase IIa design

Roger Ingham, professor at Santa Barbara, has written a reply to the Phase IIa trials on Pagoclone. He has been critical of the procedures, and some of these have been considered for the Phase IIb. I have also expressed my concerns about the study, and said that a larger better controlled trial needs to be done. (Unfortunately I cannot find the post on my blog!) The non-published Phase IIb trial has now kind of confirmed my suspicion that the effect is not significant, except possibly for a subgroup. But we have no official data, so I can only speculate.
I often hear people say that Jerry is a hero and so on. No doubt he is heroically trying to find medication for stuttering, and he understands us and stuttering better than his medical colleagues but he is not a perfect scientist and must be open to criticism. Here is the reply.

Maguire et al’s.¹ recent report on a clinical trial evaluating the effect of pagoclone on stuttering concluded that “pagoclone may have potential as a pharmacological treatment of stuttering” (p. 48, 2010).  This conclusion was qualified by some comments on the limitations of their study, but there are many that were not mentioned and that raise serious doubts about clinical value of their findings.

Maguire et al. report effects of pagoclone on experimental (n = 88) and placebo (n = 44) groups of adults who stutter who participated in a multi-site double-blind treatment followed by a 1-year open-label extension in patients who stutter. They report a 40% reduction in stuttering frequency as measured by the SSI-3² – an instrument that has questionable reliability and validity³, in part because it assesses only 200 syllables of speech, all of it generated within the clinic rather than in ecologically valid beyond-clinic environments.⁴   That limitation is actually

A reader visits the Stuttering Brain

Here is a picture with Ora from New York at the castle of Vianden in Luxembourg. Frequent readers might know him from his comments on my blog.

Ora and his partner Dan who is a Gestalt psychotherapist visited me beginning of September in Luxembourg. I showed them around Luxembourg-City and the castles in the countryside. We also visited the German border town of Trier, famous for its Roman remains.

Both are highly intellectual.We had lots of interesting debates: on stuttering, politics, psychotherapy, and they were so kind to rip apart my presentation for the book I am writing. ;-)

If you are ever close to Luxembourg, send me an email.

Stop saying you cure 75% of kids!

Peter sent me this wonderfully misleading text:

"The University of Georgia, Speech and Hearing Clinic is an example of success in helping children overcome their stuttering, some starting therapy as early as two years of age. The treatment is based on the Lidcombe Program, which was developed in Australia in the 1980s and operates on the theory that stuttering is a neurological problem. It works by giving positive feedback for desired behaviour and corrective feedback for undesirable behaviour. It teaches the parents the importance of maintaining a healthy balance between praise and correction, making the process a positive experience for the child. The clinic claims to have a 75% success rate in eliminating stuttering, with the remaining 25% continuing to have a mild stutter. The treatment is more effective the earlier it is started and parents are encouraged to seek help as soon as they notice a speech problem."

75% sucess rate?? Excue me: 75% of the kids recover anyway naturally. On the other hand, the statement that "the remaining 25% continuing to have a mild stutter." is indeed possible after a good treatment with a good therapist, good parental support, and a receptive child. However, I would speculate that even though many leave with a milder stuttering, there is absolutely no guarantee that they will relapse over the next years. On the other hand, this relapse rate might be lower than with adults. Also the psychosocial adaptation could be much better than if the child had no intervention.

A poem by Ashaur Rahman

Just read the latest publication of Speaking Out, the magazine of the British Stammering Association (BSA). A member, Ashaur Rahman, got into the finals of The Brit Writers' Awards. Here is one of his poems with the very informative title Stammering.

S ubstituting words helps me when I chat
T his disability people always laugh at
A ... A...Ashaur is my name
M ost people don't understand my pain
M entally it's exhausting; physically it's frustrating
E nchant yourself when you are singing
R epeating words is just an occurrence
I ceberg analogy is a resemblance
N ever let anyone belittle you
G ain confidence that you never knew

Leys is spinning again

Leys Geddes, chair of the British Stammering Association, is unfortunately misleading again. Surely unwillingly, but still.

Early Intervention could reduce the numbers substantially but support from the NHS is inadequate.

There is no evidence whatsoever that the number of adult stutterers is reduced substantially. At best, the adult stutterer's stuttering is less frequent and severe, and have a better psychosocial adaptation.

And more...

However, Early Intervention allows the vast majority of those very young children at risk of a lifetime of stammering to regain fluent speech, achieve their true potential and make a full contribution to society and the economy.

It's highly highly misleading. As I told Leys a million times: The vast majority recovers *any way*. So you cannot just say that EI allows most to regain fluent speech. Yesterday, I over-heard a conversation from my neighbouring table at the restaurant. A mother told her adult son: you were stuttering, too. I took you to a strange man who did exercises with a metronome, and after a few weeks you were fluent! Leys, why don't you write a story that Early Metronome intervention allows the vast majority of .... ;-)

Here is Tom's version:

Early Intervention accompanies children and parents during the period of a child's dsyfluency. Its main goal is to re-assure and inform parents of children who stutter, to rule out other developmental issues and treat these if present, and to actively intervene when stuttering becomes too distressing or does not wane after several months. Those children who do not naturally grow out of stuttering may significantly benefit in terms of reduction of frequency and severity of stuttering and achieve a good psychosocial adaptation to their speech impediment. Only a skilled specialist speech and language therapist actively and regularly supported by the child's parents achieves such successful interventions.

Ryan Pollard: Address his criticism!

I wrote a post on Thomas Kehoe's arguments against a chapter on Speech Easy: here. The response of Ryan Pollard, one of the authors, (I assume it's him who left a comment and not someone else.) is a prime example of what is wrong about the debate on research into stuttering: there is none.

If Ryan Pollard were a true scientist, he would address Thomas' arguments one by one, and either agree or disagree with a counterargument. He could take pride in showing where Thomas went wrong.

Let's see what he has actually done.

To those who have supported or want to support Mr. Weidig’s supposedly altruistic “mission” on behalf of those who stutter, please read the following.

Doesn't address Thomas' arguments.

Mr. Weidig, I’m going to keep this short because I’ve already published work on the SpeechEasy and defended it in peer-reviewed journals; I have no desire to do so again at length on someone’s blog.

Doesn't address Thomas' arguments. And, his comment appears to be as long as an actual refutation or acceptance of critical comments.

The label matters

For the last years, I have been struggling finding the right name for the chemical substances that people swallow in the form of pills in order to change some aspects of their body or behaviors and experiences.
Yes, I am talking about drugs, pharmaceutical drugs, medication, medicine, active compounds, and many more.

What is the right word to use? I used to write drugs, because that's the shortest and many use this word. But of course drugs are mostly used in the context of illegal drugs and not as pharmaceutical drugs, and have a negative connotation. Jerry Maguire told me once that he doesn't like the word drugs, and that I should rather use the word medication. However, even though I am using it often, mostly when I am talking about the search for stuttering medication, I am very reluctant to use the word for trials, because these chemical compounds have not been proven to be a good medicine or medication for stuttering.

The costs of pharmaceutical fluency

Most people who write to me about their experience with different pills stopped taking them. Only a few claim significant improvement in fluency or secondaries.

The cost-adjusted outcome is the critical concept. Even if your outcome is positive, you must be aware of the following costs associated to pills.

1) You have financial costs for the rest of your life.

2) You might experience side effects for the rest of your life.

3) You could face serious unknown side effects after long-term use.

4) You have to take the pills for the rest of your life.

5) You are dependent on the pills for your well-being for the rest of your life.

6) You are not cured of your stuttering.

7) If you don't take them for a while, you might even stutter worse than before until the neurotransmitter levels have settled.

8) You know that the pill has succeeded, and not you yourself.

9) They might interfere with other medication, especially for psychoactive compounds, and your doctor's options might be restricted. At worst, you need to stop taking them.

10) You might develop tolerance after a few months or years.

New idea from the brain imaging front

There is more and more we can do with brain imaging. Check out this article on how to monitor a child's development. Like measuring height or weight. Maybe in kids who keep stutter one connection is weaker?

Misleading chapter in Guitar & McCauley's book on SpeechEasy?

The Treatment of Stuttering by Guitar and McCauley is one of latest books by Guitar who has written a text book on stuttering before. In general, I am absolutely not impressed by Guitar's presentations I have attended and research I read about. He is doing a lot of pseudo-science. He tries to be rigorous scientist but he is really a clinician (probably a good one) who should stay away from research designs.

I came across Thomas Kehoe's feedback on the chapter on Speech Easy. Thomas is selling a similar device. I love the way he has taken apart that chapter. Having read stuff from him in the past, I have little doubt that his arguments are sound. And if so, that's highly embarrassing for Guitar

The most damaging allegation is that "seventeen pages about the SpeechEasy device, written by a SpeechEasy dealer." That's what you call conflict of interests.

So be aware if you have or want to buy their book.

By Thomas D. Kehoe (Boulder, CO USA)
This review is of one chapter, not the entire book. Different chapters were written by different authors, so the rest of the book may be better.

Chapter 16 is seventeen pages about the SpeechEasy device, written by a SpeechEasy dealer. In it we learn, for example, the interest rate at which they can finance your purchase. (My company makes the SmallTalk device, which competes with the SpeechEasy device.)

Should Endo continue trial?

James Dunlap asks me to publish his request for a continuation of the Pagoclone trial. I am staying out of this. I am not sure a continuation makes sense on their part. I guess the key is whether there are subgroups who benefit and they can identify them. And with benefit, I mean beyond placebo, measurement bias, and fluke correlation. Overall, I am rather pessimistic.

I've been advised that it would be helpful for any current Pagaclone test
participants or any stutter who would like to participate in the testing of
Pagaclone to write (or preferably fax) the CDO of Endo Pharmaceutical ...

I'm providing the address below for anyone who believes they have or may
benefit from Pagaclone to make their voices heard in this decision. Once
the decision is made to shut down the project, it will be much harder to
restart the program. At this point I would suggest faxing a letter and
mailing a copy to the address below. Contact me if I can answer any
questions. Thanks. Jim.


David P. Holveck, CEO
Endo Pharmaceuticals
100 Endo Boulevard
Chadds Ford, PA 19317
United States - Map
+1-610-558-9800 (Phone)
+1-610-558-7699 (Fax)

Today is decision time on Pagoclone?

We already know that the Pagoclone trial have been stopped, but not apparently not completely. According to a reader, today is decision time. A reader writes

...I participated in the current Pagaclone study.  I've picked up from sources in the study that Endo Pharmaceutical is having a summit next Tuesday at their headquarters to decide to kill the Pagaclone study or (1) continue the existing study allowing monitoring document to increase the dose in patients they believe would benefit; or (2) extend the study using higher dosages to see if that improves fluency (this additional phase of the test would only take 8 weeks and would potentially save the more than five years devoted to testing this drug); or (3) allow current users that feel they benefit significantly from the drug to continue under a "compassionate use" program; or (4) close the program and give up on the only drug that has helped a substantial number of stutters (like me)...

I am wondering who is attending the summit. How much do these people know about stuttering? And how much do the experts on stuttering know about statistics and random control trials? I would love to be there, and see how good the debate is. But I can already guess the absurdity of the situation: it's about millions of dollars and people from different backgrounds being parachuted into this summit with very different agendas and very few lucid science brains.

Ignorance is bliss.

TheStutteringBrain is on holiday.

Name and shame marketers for KillYourStutter.com scam

Here are the people who are getting paid to channel traffic to the KillYourStutter.com scam site. They are also to be blamed for the deluge of misinformation about stuttering all over the web.

STUTTERINGBRAIN.COM
Roger van Klaveren
corisbergweg 98
Heerlen, NA 6418 CX
Netherlands
+31.0630563056
rogervanklaveren@gmail.com

HOW-TO-STOP-STUTTERING.COM
Registrar: FastDomain Inc.
Registrant Info: (FAST-13883804)
MATTHEW RINGER
1620 SE 39TH AVE
PORTLAND, Oregon 97214
United States
+1.5038041988
matthewringer@yahoo.com

An open letter to the Canadian stuttering association

Dear Lisa from CSA,


Thank you for your email and support.

I have cc:ed all the contacts I have found from Canada to make this a very public issue.

The attached pdf summarizes all the information collected so far. This guy is amazing and has websites on kill your stutter, kill your lisp, grow your penis, cleanse your colon, and brew your own beer! And there is an injunction against him in the UK and a lawsuit.

This guy, Arjun Lal, does his scams from Canada. So he is one of yours!!! ;-) Only you can close him down.

Even if CSA are volunteers, I am sure you will find a lawyer, university professor, or other movers  in your membership that could coordinate efforts to shut his website(s) down.