Watch this video blog by Chamonix Olsen, where she refers to her negative experience with SpeechEasy and talks about a research/review article on the device. Note I talked about this article a year ago, and as you can imagine, it is nowhere found on the Speech Easy website. I congratulate Chamonix for making clear statements (untainted by the bla bla bla consensus talk and I-have-to-be-careful-not-to-hurt-someone's-feelings approach) in contrast to many (but not all) of her colleagues that are too coward to speak out their true mind clearly and publicly or make any controversial statement or just too lazy or not qualified enough to actually read the research articles in detail. I just hope she will not start her own blog... that would be too much competition. The next thing she should talk about is the Lidcombe treatment approach.. ;-)
(Thx to Ora for the tip)
Tuesday, May 26, 2009
Thursday, May 21, 2009
Abnormalities a consequence of stuttering?
Here is an often made argument that is getting more and more difficult to defend.
a. Scans on older kids also show structural brain abnormalities thereby making it less likely to be a consequence of stuttering.
b. Scans on adults who recovered from childhood stuttering also show structural brain abnormalities.
c. Genes either cause (e.g. stuttering families) or significantly contribute to stuttering in many but by far not all stutterers. They are physical objects that code proteins that are used to build part of the brain. So the brains of these stutterers are definitely physically different from the very start, because they have genes that are abnormal.
d. The fact that genes can cause or contribute towards stuttering shows that physical stuff can cause or contribute towards stuttering and is a strong indication that other physical events like brain injury or virus infection might lead to similar physical deficiencies.
e. The magic brain plasticity is a feel-good myth. The brain virtually never goes back to normal after a stroke or a development disorder like stuttering. If the kid is lucky, the brain will find a different way to do the same task, but very likely at the cost of inferior performance.
f. Surely there are adaptations, but this does not able that it is all adaptations.
g. One Japanese researcher, Dr Mori, has found abnormalities in infants before they start stuttering using a technique called light spectroscopy, I believe.
Comparing a stutter's brain with a non-stutter's brain leads to a dead end because the very fact that a person stutters for years and years has an affect on the brain. Just like a person who plays the piano for years has a different brain structure than a person who doesn't. But it doesn't mean that the piano player was born with that brain structureHere are the arguments against:
a. Scans on older kids also show structural brain abnormalities thereby making it less likely to be a consequence of stuttering.
b. Scans on adults who recovered from childhood stuttering also show structural brain abnormalities.
c. Genes either cause (e.g. stuttering families) or significantly contribute to stuttering in many but by far not all stutterers. They are physical objects that code proteins that are used to build part of the brain. So the brains of these stutterers are definitely physically different from the very start, because they have genes that are abnormal.
d. The fact that genes can cause or contribute towards stuttering shows that physical stuff can cause or contribute towards stuttering and is a strong indication that other physical events like brain injury or virus infection might lead to similar physical deficiencies.
e. The magic brain plasticity is a feel-good myth. The brain virtually never goes back to normal after a stroke or a development disorder like stuttering. If the kid is lucky, the brain will find a different way to do the same task, but very likely at the cost of inferior performance.
f. Surely there are adaptations, but this does not able that it is all adaptations.
g. One Japanese researcher, Dr Mori, has found abnormalities in infants before they start stuttering using a technique called light spectroscopy, I believe.
Tuesday, May 19, 2009
More on Rex and genes
Some more on my debate with Rex. He has already moved towards admitting that genetics does play a role, but still thinks that the non-genetics part must be social environment. So lets move him a bit further away from this stance.
>>>The figures suggest that genetics plays a role, but identical twins are (as the name suggests) identical, so their parents treat them in identical ways, and their environments are usually identical. However, the figures also indicate that environmental factors play a very significant role. If stuttering were purely genetic, there would be 100% concordance among identical twin stutterers ... but there isn't!
No no no.
First, if genes can cause or contribute to stuttering, that means that physical stuff can cause or contribute to stuttering. And therefore, it is very likely that non-genetic physical stuff like brain trauma or virus infection striking in the same functional regions as the genes, will also cause or contribute to stuttering. So the proof of genetical influence very often indicate that other physical may also cause or contributors! You cannot say: Oh genes is 40% so social environment is 60%. Only that "other physical causes" and "social environment" equals 60%! Where social environment can run from 0 to 60%!
Second, the twin studies do not show that environmental factors play a significant role. It only shows that non-genetics factors play a role. It is a commonly made mistake to attribute non-genetics factors to parental skills (the nurture part) exclusively.This attitude comes from the flawed nature-nurture view. A vast majority of non-genetic influences do not come from parents or social environment, but from random events like pre-natal events, accidents, illnesses, trauma. Then most impact from their social environment come from the influence of their peers and from school. Kids spent the vast majority of their time with their peers, their school teachers. Relatively little with their parents. And even parental influence is not uniform for both twins. Kids can react very differently to parents. I am not saying parents play no role, but with increasing age less and less, and at very early age kids are not social beings but more like animals.
>>> The scientific literature that you cite is just a rehash of what has been done for decades. Nothing new has been found. The same questions that were asked 30 years ago are still being asked today ... zero progress.
I gave links to review articles for laypeople. There has been a lot of progress on empirical findings but the full picture will be quite complex.
And there is recent research. For example, I also cited the very recent and large scale (1000s of twins):
Am J Speech Lang Pathol. 2007 May;16(2):169-78. Genetic etiology in cases of recovered and persistent stuttering in an unselected, longitudinal sample of young twins. Dworzynski K, et al.
But here are others:
Am J Hum Genet. 2006 Apr;78(4):554-63. Epub 2006 Feb 1. New complexities in the genetics of stuttering: significant sex-specific linkage signals. Suresh R, Ambrose et al.
J Fluency Disord. 2007;32(1):33-50. Epub 2006 Dec 30. Genetic studies of stuttering in a founder population. Wittke-Thompson JK, Ambrose N, et al.
>>>> My understanding is that the stuttering researchers are of an embarrassingly poor standard ... and something tells me that you agree with me.
I agree with you, but not for genetics and brain imaging. ALL the scientists who work in these areas are professional scientists. Most of them are not outstanding scientists, but they apply the standards of their fields well.
>>>The figures suggest that genetics plays a role, but identical twins are (as the name suggests) identical, so their parents treat them in identical ways, and their environments are usually identical. However, the figures also indicate that environmental factors play a very significant role. If stuttering were purely genetic, there would be 100% concordance among identical twin stutterers ... but there isn't!
No no no.
First, if genes can cause or contribute to stuttering, that means that physical stuff can cause or contribute to stuttering. And therefore, it is very likely that non-genetic physical stuff like brain trauma or virus infection striking in the same functional regions as the genes, will also cause or contribute to stuttering. So the proof of genetical influence very often indicate that other physical may also cause or contributors! You cannot say: Oh genes is 40% so social environment is 60%. Only that "other physical causes" and "social environment" equals 60%! Where social environment can run from 0 to 60%!
Second, the twin studies do not show that environmental factors play a significant role. It only shows that non-genetics factors play a role. It is a commonly made mistake to attribute non-genetics factors to parental skills (the nurture part) exclusively.This attitude comes from the flawed nature-nurture view. A vast majority of non-genetic influences do not come from parents or social environment, but from random events like pre-natal events, accidents, illnesses, trauma. Then most impact from their social environment come from the influence of their peers and from school. Kids spent the vast majority of their time with their peers, their school teachers. Relatively little with their parents. And even parental influence is not uniform for both twins. Kids can react very differently to parents. I am not saying parents play no role, but with increasing age less and less, and at very early age kids are not social beings but more like animals.
>>> The scientific literature that you cite is just a rehash of what has been done for decades. Nothing new has been found. The same questions that were asked 30 years ago are still being asked today ... zero progress.
I gave links to review articles for laypeople. There has been a lot of progress on empirical findings but the full picture will be quite complex.
And there is recent research. For example, I also cited the very recent and large scale (1000s of twins):
Am J Speech Lang Pathol. 2007 May;16(2):169-78. Genetic etiology in cases of recovered and persistent stuttering in an unselected, longitudinal sample of young twins. Dworzynski K, et al.
But here are others:
Am J Hum Genet. 2006 Apr;78(4):554-63. Epub 2006 Feb 1. New complexities in the genetics of stuttering: significant sex-specific linkage signals. Suresh R, Ambrose et al.
J Fluency Disord. 2007;32(1):33-50. Epub 2006 Dec 30. Genetic studies of stuttering in a founder population. Wittke-Thompson JK, Ambrose N, et al.
>>>> My understanding is that the stuttering researchers are of an embarrassingly poor standard ... and something tells me that you agree with me.
I agree with you, but not for genetics and brain imaging. ALL the scientists who work in these areas are professional scientists. Most of them are not outstanding scientists, but they apply the standards of their fields well.
Monday, May 18, 2009
Selection bias in trial?
>> I was not allowed to participate because I didn't stutter enough during the videotaped speaking portion.
Some readers are telling me that they were not allowed to register because they did not stutter at the evaluation session. How will this affect the trial?
First of all, I speculate that there are two types here. The one who stutter very mildly even when they stutter, but the impact might be mostly on the psychological pain side. No issue to the outside world but only to themselves. The other type stutter or block in some situations but were just very fluent. Outside world classifies them as stutterers in these situations.
I am concerned by the following statisticall bias. Lets assume Type II is fluctuating in fluency a lot. Lets say they stutter 20% of the time and don't 80% of the time. So the trial will drop 80% of them. OK lets change the numbers to 50% and 50%. It is easier to compute. So Type II-accepted will stutter at registration and in 50% of the time at evaluation after trial and 50% not. So 50% have gains in fluency not coming from the medication. But because we have a control/placebo arm, both arms will see the gains. So more sucess in placebo arm and treatment arm. The other 50% have no gains from this effect. This effect is balanced out if we include the Type II-not-accepted, because 50% might stutter giving a loss in fluency in both arms and the other 50% do not stutter with no effect. So to conclude by dropping the fluent stutterers, they increase the placebo and treatment effect.
Some readers are telling me that they were not allowed to register because they did not stutter at the evaluation session. How will this affect the trial?
First of all, I speculate that there are two types here. The one who stutter very mildly even when they stutter, but the impact might be mostly on the psychological pain side. No issue to the outside world but only to themselves. The other type stutter or block in some situations but were just very fluent. Outside world classifies them as stutterers in these situations.
I am concerned by the following statisticall bias. Lets assume Type II is fluctuating in fluency a lot. Lets say they stutter 20% of the time and don't 80% of the time. So the trial will drop 80% of them. OK lets change the numbers to 50% and 50%. It is easier to compute. So Type II-accepted will stutter at registration and in 50% of the time at evaluation after trial and 50% not. So 50% have gains in fluency not coming from the medication. But because we have a control/placebo arm, both arms will see the gains. So more sucess in placebo arm and treatment arm. The other 50% have no gains from this effect. This effect is balanced out if we include the Type II-not-accepted, because 50% might stutter giving a loss in fluency in both arms and the other 50% do not stutter with no effect. So to conclude by dropping the fluent stutterers, they increase the placebo and treatment effect.
Sunday, May 17, 2009
Shouldn't severe stuttering be weeded out?
>> Based on the theory of Evolutions and survival of the fittest...shouldn't severe stutterers be weeded out with Time (thousands of years). So Stuttering might have some evolutionary advantages? Care to speculate? Some people subconsciously choose to stutter. Like self-mutilation (brains of self-mutilators)
Good question. Here is my answer and I start with some genetics. First of all, the theory of evolution is not about the survival of the fittest but about sexual selection. The gene pool (organism made up of the genes) that is able to spread their genes most effectively via mating will survive. Think of the peacock. The bigger the tail the less fit for survival, but the better for mating because females go for males with bigger tails (god knows why! :-) So it is important to view everything in terms of sexual selection.
Second, only the bad stuff is likely to be selected out. This implies that some features might stay for a very long time in the gene pool, because they do not really hurt the gene pool's chance of reproduction. For example, a gene defect leading to infertility is immediately selected out, but a bigger nose might not because it does not really harm in reproduction. Third, sometimes a genes provokes a bad thing and a good thing. So this big-nose gene might also lead to bigger hands which is an advantage in surviving the environment and thereby increasing chances for sexual reproduction.
Fourth, highly relevant to stuttering, selection takes a long time to select out bad genes. So when you still see the bad genes in the gene pool it might well be that there was not enough time for them to be selected out. In fact, it might be selected out right now, and the proportion of the bad gene in the population might already have decreased. So when you see people stutter, being dyslexic, or genetic heart issues, it might well lead to less reproductive success, but the selection pressure might not be too high or the gene mutation happened not long ago and the people with these conditions might be the remnants of a much bigger population.
Fifth, some conditions cannot be selected out, because it is physically impossible to further improve the organism. Like humans, nature has a limited amount of ressources. Think of health care, you can tak 10 million to improve cancer treatment or 10 million to improve Alzheimer, but you cannot do both at the same time. Same here, some gene might improve things in one part of the brain but make it worse in another. So when conditions are at a very low precentage it might be impossible to further select them out.
Sixth, some conditions like stuttering are not strongly genetic, so it takes much longer to select them out. Also, it is not a single gene most likely, making it even more difficult.
Fifth, some genes only lead to condition in the appropriate environment. So maybe some of our fluent human beings carry the genes but did not develop stuttering or recovered from it. This makes selecting out the genes more complicated.
To summarise, you are making the assumption that the proportion of stutterers has NOT been declining about the last few thousands of years, thereby saying: OK it has been stable and it must be bad, and therefore there must be a counterforce. I would argue that the most likely scenario is that the proportion of stuttering is still declining, being selected out, and that stuttering might be less critical for reproduction sucess in our ancestors where hunting skills were much more important. And I also believe that nature might well not be able to optimize the brain much more so selecting out might take a very long time. Of course, it might be that some stuttering genes might give some benefit to the carrier; maybe it protects against a disease at the expense of stuttering. And again, stuttering is not strongly genetic, so selection will take longer.
Good question. Here is my answer and I start with some genetics. First of all, the theory of evolution is not about the survival of the fittest but about sexual selection. The gene pool (organism made up of the genes) that is able to spread their genes most effectively via mating will survive. Think of the peacock. The bigger the tail the less fit for survival, but the better for mating because females go for males with bigger tails (god knows why! :-) So it is important to view everything in terms of sexual selection.
Second, only the bad stuff is likely to be selected out. This implies that some features might stay for a very long time in the gene pool, because they do not really hurt the gene pool's chance of reproduction. For example, a gene defect leading to infertility is immediately selected out, but a bigger nose might not because it does not really harm in reproduction. Third, sometimes a genes provokes a bad thing and a good thing. So this big-nose gene might also lead to bigger hands which is an advantage in surviving the environment and thereby increasing chances for sexual reproduction.
Fourth, highly relevant to stuttering, selection takes a long time to select out bad genes. So when you still see the bad genes in the gene pool it might well be that there was not enough time for them to be selected out. In fact, it might be selected out right now, and the proportion of the bad gene in the population might already have decreased. So when you see people stutter, being dyslexic, or genetic heart issues, it might well lead to less reproductive success, but the selection pressure might not be too high or the gene mutation happened not long ago and the people with these conditions might be the remnants of a much bigger population.
Fifth, some conditions cannot be selected out, because it is physically impossible to further improve the organism. Like humans, nature has a limited amount of ressources. Think of health care, you can tak 10 million to improve cancer treatment or 10 million to improve Alzheimer, but you cannot do both at the same time. Same here, some gene might improve things in one part of the brain but make it worse in another. So when conditions are at a very low precentage it might be impossible to further select them out.
Sixth, some conditions like stuttering are not strongly genetic, so it takes much longer to select them out. Also, it is not a single gene most likely, making it even more difficult.
Fifth, some genes only lead to condition in the appropriate environment. So maybe some of our fluent human beings carry the genes but did not develop stuttering or recovered from it. This makes selecting out the genes more complicated.
To summarise, you are making the assumption that the proportion of stutterers has NOT been declining about the last few thousands of years, thereby saying: OK it has been stable and it must be bad, and therefore there must be a counterforce. I would argue that the most likely scenario is that the proportion of stuttering is still declining, being selected out, and that stuttering might be less critical for reproduction sucess in our ancestors where hunting skills were much more important. And I also believe that nature might well not be able to optimize the brain much more so selecting out might take a very long time. Of course, it might be that some stuttering genes might give some benefit to the carrier; maybe it protects against a disease at the expense of stuttering. And again, stuttering is not strongly genetic, so selection will take longer.
Friday, May 15, 2009
Einar's question
Einar asked a question to me:
Your question on how long a block is not be socially acceptable. I would go back to the science of stuttering, and say the following. Our neurology causes a long delay in speech initiation in every so many syllables: the exact frequency varying enormously depending on many factors. The reason why we develop stuttering symptoms as opposed to just delayed speech initiation is because this delay is not acceptable anymore and we try to counteract. I would be surprised if this research hasn't been done before. I believe it is about 2-3 seconds of silence when the listener starts to direct its attention to the lack of speech. After 3 seconds of silence where speech is expected, the abnormal territory starts and social pressure from ourselves and the listener is created, and mounting with further delay. It might even be possible to define real stuttering as silence of more than 3 seconds where speech was expected, and learned stuttering as dysfluent speech per se.
“How much stuttering is socially acceptable?”As you wrote your question is not a scientific one, so different people will give different answers. I can only say that I cannot stand listening to my own stuttering for too long! For me, it clearly depends on the severity; if it is mild or just a few soft blocks, I don't care. So to be honest, I do not want to work with a colleague who stutters alot or have a girlfriend that stutters a lot. But then again, I also prefer my colleagues to be intelligent, funny, good-looking, fit, interesting, and honest!
I know this is not a “politically correct” question. It not a scientific question, but rather a psychological or sociological one. I know stuttering is a disability, so nobody should be discriminated because of his stutter. But doesn’t the freedom of oneself end where the freedom of others starts? Let’s take a couple of examples: A group of people is having a discussion, one of those folks has a stutter. Do the other participants in the group have to wait each time he adds to the discussion? Or should the stutterer remain silent at times in order not to disrupt the flow of the discussion? Would it be rude or understandable if one of the other participants cuts his sentences off?
Or another example, a speaker at a conference stutters. Do the listeners have to sit and wait patiently for him to get his message across? (bearing the consequences: lost time, patience…). Up to what degree? How long can a block be to be "socially acceptable"? Would it be rude or understandable if one of the listeners loses his patience and walks out?
Your question on how long a block is not be socially acceptable. I would go back to the science of stuttering, and say the following. Our neurology causes a long delay in speech initiation in every so many syllables: the exact frequency varying enormously depending on many factors. The reason why we develop stuttering symptoms as opposed to just delayed speech initiation is because this delay is not acceptable anymore and we try to counteract. I would be surprised if this research hasn't been done before. I believe it is about 2-3 seconds of silence when the listener starts to direct its attention to the lack of speech. After 3 seconds of silence where speech is expected, the abnormal territory starts and social pressure from ourselves and the listener is created, and mounting with further delay. It might even be possible to define real stuttering as silence of more than 3 seconds where speech was expected, and learned stuttering as dysfluent speech per se.
Read the articles, Rex
I have to post on Rex's reply to me pointing out that everyone with a stuttering-is-learned-behaviour theory needs to tell me why genetics influences stuttering and why we have abnormal brains. I say it loud and clear. THE TIME IS OVER WHERE YOU COULD JUST WAFFLE ALONG WITH RANDOM LOGICAL THOUGHTS. YOU ACTUALLY NEED TO READ THE SCIENTIFIC LITERATURE BECAUSE GENE AND BRAIN EVIDENCE IS CONSTRAINING AND RULING OUT ALL KINDS OF THEORIES!
Here is Re's response highlighting my point exquisitely.
Yes, they have shown this. A quick 5 minute search would tell you. Go to PubMedline archive and search for "stuttering genetics". Or check out tese review articles: here, and here.
Here is the evidence:
a. There are whole families where nearly everyone stutters. They are in Cameroon, Kansas, and Pakistan. Read Drayna's review article or
See Drayna, D. "Newly discovered families give impetus to genetic research," Stuttering Foundation of America newsletter, Fall 2005, page 1. Viswanath, N., H.S. Lee, R. Chakraborty. "Evidence for a Major Gene Influence on Persistance Developmental Stuttering," Human Biology, June 2004, 76:3, 401-412.
b. One-egg twins are much more likely to both stutter at the same time than two-egg twins.
See Am J Speech Lang Pathol. 2007 May;16(2):169-78. Genetic etiology in cases of recovered and persistent stuttering in an unselected, longitudinal sample of young twins. Dworzynski K, Remington A, Rijsdijk F, Howell P, Plomin R.
c. Currently, studies are underway to locate the genes: see work by Drayna and by Ambrose.
And the same for brain imaging.
No, they have now done studies on older kids which shows the similar kids, and you still have the genes which are the physical objects that build up the brain.
I agree with your statement, but that doesn't mean that anything that looks feasible as a cause is a cause.
Here is Re's response highlighting my point exquisitely.
How come stuttering is strongly influenced by genes?
Is it? How has this been proven? Have they discovered the genes responsible? No they haven't. Have they done tests on twins *reared apart*? I don't know, but I doubt it. What is the contribution of genes and what is the contribution of environment? Lets face it - after all these years of research, nobody has a clue.
Yes, they have shown this. A quick 5 minute search would tell you. Go to PubMedline archive and search for "stuttering genetics". Or check out tese review articles: here, and here.
Here is the evidence:
a. There are whole families where nearly everyone stutters. They are in Cameroon, Kansas, and Pakistan. Read Drayna's review article or
See Drayna, D. "Newly discovered families give impetus to genetic research," Stuttering Foundation of America newsletter, Fall 2005, page 1. Viswanath, N., H.S. Lee, R. Chakraborty. "Evidence for a Major Gene Influence on Persistance Developmental Stuttering," Human Biology, June 2004, 76:3, 401-412.
b. One-egg twins are much more likely to both stutter at the same time than two-egg twins.
See Am J Speech Lang Pathol. 2007 May;16(2):169-78. Genetic etiology in cases of recovered and persistent stuttering in an unselected, longitudinal sample of young twins. Dworzynski K, Remington A, Rijsdijk F, Howell P, Plomin R.
c. Currently, studies are underway to locate the genes: see work by Drayna and by Ambrose.
And the same for brain imaging.
These structural differences: are they congenital, or are they caused by the fact that a stutterer has been stuttering all his/her life? Remember, years of stuttering behaviour can change the brain ... plasticity, and all that. Nobody can answer this with certainty.
No, they have now done studies on older kids which shows the similar kids, and you still have the genes which are the physical objects that build up the brain.
One thing about stuttering which has been largely been ignored by researchers and commentators is that there may well be more than one variant of it - even though they may manifest themselves as the same behaviours.
I agree with your statement, but that doesn't mean that anything that looks feasible as a cause is a cause.
Thursday, May 14, 2009
Big day for humanity
My blog is about stuttering, but I can't help blogging about my excitement on the launch of two revolutionary satellites that will change our understanding of the universe, especially its origin, structure and future. If all goes according to plan, of course! I am talking about Herschel and Planck from the European Space Agency. Herschel is the biggest ever telescope sent into orbit and will exceed Hubble's capacities, which have already awed us with amazing pictures and the age of the universe (13.7 billion years). (Hubble is currently being repaired, and will provide even more detailed pictures.) Planck is even more exciting as it studies the remnants of the big bang, the micro-wave background radition from 380'000 years after the inflation of the universe started. By its unprecedingly precise measurements, candidate models for the unification of all laws of physics will fall or survive. A great day for European science. And we should not forget that the Large Hardon Collider is going on-line in a few months giving us an even finer view on the structure of matter.
Tuesday, May 12, 2009
Pagoclone trial (registration) ended?
A reader sent me the following email:
Did others experience similar?
(I just listened to a podcast on StutterTalk.com and Jerry Maguire said that enrollment has stopped on most sites as numbers have been reached. The blind trial goes for 8 months with intermediate measurement points. So assuming the last patient was enrolled on May 1st. The last measurement should be in 7 months (in November) plus 2 more months evaluating speech samples plus 2 months stats. So the final results should be there in about a year. Of course internally they will know the analysis of the intermediate measurements probably after the summer. So maybe we can expect preliminary public results in November.)
...I went in for the trials. I'm on X and they told me I could not join the trials till I was 4 weeks from my last dose. ... They told me the trials would continue for several more months so I could go off it slowly. ... Two weeks in slowly going off it, they told me the trials have prematurely ended, and I should get back on my medication. I asked them when it will be available on the market, and they said they would get the head guy to call me and tell me but he never did. They basically said the trials were 'going so well' that is the reason they were discontinuing them early.I am puzzled at what this means. It is most likely that they have a record number of participants and don't need any more participants. I would not be surprised. Or may they just closed one site? But I doubt they stopped registration because it was so sucessful in efficacy.
Did others experience similar?
(I just listened to a podcast on StutterTalk.com and Jerry Maguire said that enrollment has stopped on most sites as numbers have been reached. The blind trial goes for 8 months with intermediate measurement points. So assuming the last patient was enrolled on May 1st. The last measurement should be in 7 months (in November) plus 2 more months evaluating speech samples plus 2 months stats. So the final results should be there in about a year. Of course internally they will know the analysis of the intermediate measurements probably after the summer. So maybe we can expect preliminary public results in November.)
Sunday, May 10, 2009
Your question: Pagoclone
A reader asked:
Side effects: The side effects for Pagoclone seem to be mild compared to older medication. I have often read that second-generation medication is not more effective than first-generation medication but it is much more tolerable with mild side effects. Not sure how true it is.
Anti-anxiety: Pagoclone was tested for anti-anxiety disorder but the trials were stopped, likely it was not effective enough. But it might have helped reducing the general anxiety level of normal brain rather than countering anxiety attacks.
Stuttering: We do not know yet, but the current Phase IIb trial will tell us much more. What is already clear is a) it is not going to be a miracle fluency pill b) it will not work for everyone if it works.
pagoclone reduces anxiety and therefore reduce stuttering, NOT pagoclone reduces stuttering directly... We do not know. I tend to think that Pagoclone (if effective) calms the brain and puts it more into a "at home alone" mode which facilitates fluency. But Jerry Maguire disagrees with me and believes that it acts directly on issue. The jury is out there.
So do you like pagoclone as a treatment for stuttering. Take it once daily for the rest of your life and forget about it (vs. other stuff you can do): Here is my view.
Is pagoclone an anti-anxiety drug? Is pagoclone a good medication for the treatment of stuttering? It seems like pagoclone reduces anxiety, which would seem to reduce stuttering (theoretically). So do you like pagoclone as a treatment for stuttering. Take it once daily for the rest of your life and forget about it (vs. other stuff you can do) It this correct: pagoclone reduces anxiety and therefore reduce stuttering, NOT pagoclone reduces stuttering directly... also, side effects like weight gain?
Side effects: The side effects for Pagoclone seem to be mild compared to older medication. I have often read that second-generation medication is not more effective than first-generation medication but it is much more tolerable with mild side effects. Not sure how true it is.
Anti-anxiety: Pagoclone was tested for anti-anxiety disorder but the trials were stopped, likely it was not effective enough. But it might have helped reducing the general anxiety level of normal brain rather than countering anxiety attacks.
Stuttering: We do not know yet, but the current Phase IIb trial will tell us much more. What is already clear is a) it is not going to be a miracle fluency pill b) it will not work for everyone if it works.
pagoclone reduces anxiety and therefore reduce stuttering, NOT pagoclone reduces stuttering directly... We do not know. I tend to think that Pagoclone (if effective) calms the brain and puts it more into a "at home alone" mode which facilitates fluency. But Jerry Maguire disagrees with me and believes that it acts directly on issue. The jury is out there.
So do you like pagoclone as a treatment for stuttering. Take it once daily for the rest of your life and forget about it (vs. other stuff you can do): Here is my view.
The first German on blogosphere
A stuttering friend of mine, Blanka Koffer, has started her blog. She writes history as a profession and in that her blog is the first German blog. It is called Stottern usw. (which means Stuttering etc.). I suggested she adds a picture of her, and she promised to do so. And I told her not to fear speaking out her mind. Unfortunately, that is exactly what she did, and she started off by disagreeing with me! How unloyal can you be? :-) If you can understand German, I recommened her blog.
Saturday, May 02, 2009
Ask me any questions!
I invite you to submit questions about stuttering. I will answer them all! ;-)
I just got an email from saying that someone else said that "if you stutter when you are alone, you have brain damage". Unfortunately, I do not have access to the newsgroup. But here is my answer.
The fact that you even stutter when alone indicates that your emergence of stuttering is relatively independent on social speaking situations. And indeed suggests a neurological cause rather than a socially or behaviourally conditioned cause. However, if you are a person who does not stutter when alone, you cannot use this argument and then say that therefore your stuttering is purely psychological. Think of your old car with an old battery, it works fine in dry and warm weather but it won't work in wet or cold weather. You won't notice the deficiency (stuttering) in dry and warm (when alone) weather! You might very well also have neurological issues (maybe less than those who stutter when alone) that get revealed when your brain has to worked at full speed and demanding conditions! However, I am not denying that social situations can strongly modulate the severity of stuttering. But we need to distinguish between two types of causes: a) much greater neurological demand on brain b) triggers to learned behaviour. Social situations always create greater neurological demands leading to a higher chance of jams leading to stuttering behaviour, and depending on the situation learned behaviour might additionally be triggered leading to stuttering behaviour (avoidance of eye contacts, fillers, tension, and so on).
I just got an email from saying that someone else said that "if you stutter when you are alone, you have brain damage". Unfortunately, I do not have access to the newsgroup. But here is my answer.
The fact that you even stutter when alone indicates that your emergence of stuttering is relatively independent on social speaking situations. And indeed suggests a neurological cause rather than a socially or behaviourally conditioned cause. However, if you are a person who does not stutter when alone, you cannot use this argument and then say that therefore your stuttering is purely psychological. Think of your old car with an old battery, it works fine in dry and warm weather but it won't work in wet or cold weather. You won't notice the deficiency (stuttering) in dry and warm (when alone) weather! You might very well also have neurological issues (maybe less than those who stutter when alone) that get revealed when your brain has to worked at full speed and demanding conditions! However, I am not denying that social situations can strongly modulate the severity of stuttering. But we need to distinguish between two types of causes: a) much greater neurological demand on brain b) triggers to learned behaviour. Social situations always create greater neurological demands leading to a higher chance of jams leading to stuttering behaviour, and depending on the situation learned behaviour might additionally be triggered leading to stuttering behaviour (avoidance of eye contacts, fillers, tension, and so on).
Wednesday, April 29, 2009
IFA Program

Here is the program for the IFA conference in Rio in August. Click on the week days to get the name of the speakers.
As I said before, not too impressed by the key speakers. NOTE THE LIDCOMBE PEOPLE GIVE TALKS ABOUT ALL KIND OF THINGS BUT NOT ON THEIR OWN FOLLOW-UP STUDY OF THEIR FAMOUS PSEUDO RANDOM CONTROL TRIAL. WHY? EVEN THEIR FLAWED SETUP SHOWS THAT THE RATE WAS NOT CLEARLY BETTER THAN NATURAL RECOVERY. That's how research is done. If you don't like your results, you don't spend the effort to promote it! Instead they talk about refinements like time to treat, individual differences, technical aids, and so on. Needless to say that it is all completely useless given that it is already tricky to properly do overall sucess rate due to statistical erros from high natural recovery rate: they search in the haystack when in fact it is not even possible to locate the haystack! But of course if you do not understand stats well and are not trained in hard science, you just don't see the issues and your brain gives great meaning to a research that is meaningless.
Here are the talks I would consider going to. And of course all the posters. I often find that posters contain more interesting research, and by grad students who are still clear thinking and not corrupted by bad role models. But often overly impressed by authority.
Recovery from stuttering
Howell Peter, Davis Stephen
A longitudinal study of syntax, prosody and recovery from stuttering
Rusbridge Sarah, Howell Peter
Stuttering and the ICD 9/10: A debate within our profession
Bernstein Ratner Nan, Maguire Gerald
Dysfluency levels in various speaking conditions in acquired neurogenic stuttering
Balasubramanian Venu, Cronin Kristine, Max Ludo
Comparing sequence learning and retention in stuttering and Parkinson’s disease
Smits-Bandstra Sarah, Gracco Vince, De Nil Luc
peech and nonspeech sensorimotor learning in individuals who stutter
Max Ludo, Baldwin Caitlin J., Cronin Kristine L., Flanagan J. Randall
Genetic epidemiological relations between Stuttering, Cluttering and Specific Language Impairment
Fibiger Steen, von Bornemann Hjelmborg Jacob, Fagnani Corrado, Skytthe Axel
Multiple facets of stuttering: Insights from brain and behavioural research
Luc De Nil
Neurobiological explanations of developmental stuttering: Contributions from brain imaging studies
Watkins Kate, Ward David
Association Studies of chromosome 18 microsatellites and Familial Persistent Stuttering n
Domingues Carlos Eduardo
Parent-child interaction after the Lidcombe Program and the DCM-based treatment
Oonk Leonoor, Franken Marie-Christine, Koedoot Caroline
Wednesday, April 22, 2009
Another neuroscience article from China
Here is another article from the same Chinese group Lu et al in another good journal. Again, sounds interesting. And they look like serious professional scientists. They have another article out in Neuroscience; I need to compare to see what is different. Here they seem to look into Per's hypothesis that the pathway involving the basal ganglia is affected in stuttering people. And they find all kind of anatomically and connective differences. I need to look at the complete article in detail. But I keep on promising that I look at articles carefully and report back. But I never do... :-(
Altered effective connectivity and anomalous anatomy in the basal ganglia-thalamocortical circuit of stuttering speakers.
State Key Laboratory of Cognitive Neuroscience and Learning, Beijing Normal University, Beijing, China.
Combining structural equation modeling (SEM) and voxel-based morphometry (VBM), this study investigated the interactions among neural structures in the basal ganglia-thalamocortical circuit (BGTC) in the left hemisphere of stuttering and non-stuttering speakers. Stuttering speakers (n=12) and non-stuttering controls (n=12) were scanned while performing a picture-naming task and a passive-viewing (baseline) task. Results showed significant differences between stuttering and non-stuttering speakers in both effective connectivity and anatomical structures in the BGTC in the left brain. Specifically, compared to non-stuttering speakers, stuttering speakers showed weaker negative connectivity from the left posterior middle temporal gyrus (PMTG) to the putamen, but stronger positive connectivity from the putamen to the thalamus, from the thalamus to the PMTG and anterior supplementary motor area (preSMA), and from the anterior superior temporal gyrus (ASTG) to the preSMA. Accompanying such altered connectivity were anatomical differences: compared to non-stuttering controls, stuttering speakers showed more grey matter (GM) volume concentration in the left putamen, less GM volume concentration in the left medial frontal gyrus and ASTG, and less white matter volume concentration underlying the left posterior superior temporal gyrus inside the BGTC. These results shed significant light on the neural mechanisms (in terms of both functional connectivity and neural anatomy) of stuttering.
Tuesday, April 21, 2009
Back from Paris
I was in Paris this weekend competing in the Toastmaster's division International Speech contest after I won my club and area contests. There were six contestants from each area covering the Benelux countries and France. Unfortunately, I didn't make it into the Top3; only the first three are announced. But it was a great experience, and the delivery of my speech my best so far. And many people came up to me after the talk, and congratulates me: Best talk I have heard for ages, Very inspiring, My No1. And so on... So why did I not make it into the Top3? God knows what the judges were thinking. But seriously, I really enjoyed my presentation, they laughed at all my jokes, and everyone was listening... The only one who did not congratulate me was a person who also stutters, sorry who is a recovering stutterer from the McGuire course! ;-)
The speech was recorded, so I will try to post it. Try out Toastmaster!
The speech was recorded, so I will try to post it. Try out Toastmaster!
Thursday, April 16, 2009
Hollins Institute in trouble
Ley Geddes/BSA has reported the Hollins Institue for exaggerated and unconfirmed success claims to the UK Advertising Standards Authority (http://www.asa.org.uk) who can act internationally.
I got hold of the official complaint:
I got hold of the official complaint:
'Hollins claims for the efficacy of their programme are featured in their mailing pack (jpeg attached). As a charity and a leading authority on stammering/stuttering, the BSA asked for supporting evidence. Our areas of concern are as follows:
1. It is possible that 90% of people who stutter could achieve normal fluency by the end of an in-house program, but it would be useful to know how ‘normal fluency’ was defined and judged.
2. As I am sure all SLPs (speech therapists) know, the difficulty normally comes in finding ways to transfer the high level of fluency which can be achieved on a program (particularly, an in-house program) to normal life and then to maintain it. Thus it would be unusual for 75% of people who have attended an in-house program to be speaking with normal levels of fluency two years after a course had ended. So it would be very useful to know how this level of ‘normal fluency’ was defined, achieved and judged. It is highly debatable whether John Stossel's researcher (Stossel is a reporter on ABC News and a graduate of HCRI) had the necessary independence, experience or expertise to enable you to describe his phone interviews as independent verification of the efficacy of the program. And, incidentally, it would be useful to know how long ago these phone interviews were carried out.
3. It is not clear if the term ‘program graduates’ means everyone who was on the program or simply a select group. If, for example, it excludes those people who did not complete the program, or who were not judged to have graduated, then it would be useful to know what proportion of people who started the program are being defined as graduates.'
We explained again to HCRI that unless these claims can be substantiated we believe they will continue to give false hope to those who stammer and give people who do not stammer the false impression that stammering can be overcome in the vast majority of cases.'
As ASHA supports our campaign against misleading ads, and the HCRI Clinical Supervisor is ASHA certified, we have advised Arlene Pietranton of this action. HCRI have been told about this too.
I am personally sorry that it has come to this as we felt that HCRI could - or should - have been able to provide support, on a confidential basis if necessary, because these claims are a key element in the HCRI marketing proposition.
Neuroscience report from China
In another sign that China is catching up with Western dominated science, I found this article published in Neuroscience, a renowned journal. I cannot really find out from the abstract what is going on, and why they gave them a covert picture-naming task to do. Structural equation modeling is a statistical method combining quantitative data and qualitative causal assumptions, but that does not help me much. My guess is that they put some in a scanner and gave them a task and monitored the brain processes and used this structural equation modeling to gain information. But I never heard of this method before, but Neuroscience is a good journal so they don't just accept everything.
They claim functional disconnection from the left IFG to the left motor areas, and altered connectivity in the basal ganglia-thalamus-cortical circuit, and abnormal integration of supramodal information across the cerebellum and several frontal-parietal regions. From the words, it fits past neuroscience research, but really I would need to look at this in more depth!
Here is the abstract. Please send me the paper if you have access:
Neuroscience. 2009 Apr 10.
The Role of Large-Scale Neural Interactions for Developmental Stuttering.
Lu C, Ning N, Peng D, Ding G, Li K, Yang Y, Lin C.
State Key Laboratory of Cognitive Neuroscience and Learning, Beijing Normal University, Beijing 100875, P. R. China.
Using structural equation modeling (SEM) method, the present study examined the role of large-scale neural interactions in developmental stuttering while ten stuttering and nine non-stuttering subjects performed a covert picture-naming task. Results indicated that the connection patterns were significantly different between stuttering and non-stuttering speakers in both omnibus connection pattern and individual connection path coefficient. Specifically, stuttering speakers showed functional disconnection from the left IFG to the left motor areas, and altered connectivity in the basal ganglia-thalamus-cortical circuit, and abnormal integration of supramodal information across the cerebellum and several frontal-parietal regions. These results indicate that the large-scale dysfunctional neural interactions may be involved in stuttering speakers' difficulties in planning, execution, and self-monitoring of speech motor sequence during word production.
PMID: 19364522 [PubMed - as supplied by publisher]
Wednesday, April 15, 2009
Oprah Winfrey should be ashamed
I am utterly shocked by the Oprah Winfrey show on the Speech Easy device. I had never actually seen it. It is just so so bad. I have been critical of the Lidcombe trials and claims of efficacy, but this is a different league. The Lidcombe trials were just sloppy research done with good intentions but not so good scientific rigor. But the Oprah Winfrey show is about dumbing down realities, misleading, sloppy research, promising miracles, abusing the emotions of people, and getting the science wrong. They showed Ratstatter and Kalinowski as inventors of the device. That's a joke. Many people were thinking along similar lines. The worse was when Joe Kalinowski took out the device and stuttered severely. I can do that, too. And God made him suffer terribly to help others???? Wow!
I would love to know what has happened with the two guys who were on the show. We need to find out their contact details and speak to them. One is called Mark Babcock. And the others Wesley Cock?
Let us know if you have more details!
Friday, April 10, 2009
Analysis of latest "research"
Greg Snyder at stuttering.me did a good job in commenting on the latest research. In fact, he did a better job than I am going to do here, because I am quite busy. Here is how scientists usually read articles. Remember time is very valuable.
A life-time of stuttering: How emotional reactions to stuttering impact activities and participation in older people? Bricker-Katz G, Lincoln M, McCabe P. Disabil Rehabil. 2009 Apr 3:1-11.
ok. might be a bit interesting as i have never heard anything about older stuttering people and how they handle stuttering. is of course dead-end research and will do nothing for better understanding of stuttering. but might be interesting to know more about this age group and one can use it to exert political pressure for more ressources.
Speech skill learning of persons who stutter and fluent speakers under single and dual task conditions. Smits-Bandstra S, De Nil L. Clin Linguist Phon. 2009 Jan;23(1):38-57.
Good scientists. They really seem to be obsessed with the single/dual task performances. Not necessarily a bad thing. If you find a difference, you should zoom into it as much as possible. Will try to read, but i am nearly convinced it is like the other papers. not very clear what is really going on and no very clear effects. But will read abstract and probably ask for paper.
Peer Responses to Stuttering in the Preschool Setting. Langevin M, Packman A, Onslow M. Am J Speech Lang Pathol. 2009 Mar 30.
dead-end research. seems plainly obvious. complete waste of time. i can tell you what is happening. either i ask a few speech therapists of their experiences. that takes me 4 emails to write and within a week i am done. or i guess: some kids will notice, either asking why do you stutter or they might laugh. but most will just accept it. so what have we learned. NOTHING. NOTHING. NOTHING AT ALL.
Social anxiety and the severity and typography of stuttering in adolescents. Mulcahy K, Hennessey N, Beilby J, Byrnes M. J Fluency Disord. 2008 Dec;33(4):306-19. Epub 2009 Jan 6.
dead-end and stamp collecting research. why do we need research to find out what all adolescents and adult stutters tell us. it is not easy in school and many of us experienced severe social anxiety.
Delayed auditory feedback effects during reading and conversation tasks: Gender differences in fluent adults. Corey DM, Cuddapah VA. J Fluency Disord. 2008 Dec;33(4):291-305. Epub 2009 Jan 3.
stamp collecting research. you make some observations and then? And I am never a friend of looking at speech data. way too down stream of the real issue.
Effects of altered auditory feedback (AAF) on stuttering frequency during monologue speech production. Antipova EA, Purdy SC, Blakeley M, Williams S. J Fluency Disord. 2008 Dec;33(4):274-90. Epub 2008 Oct 14.
also stamp collecting research. same as last one.
Non-linguistic auditory processing in stuttering: Evidence from behavior and event-related brain potentials. Hampton A, Weber-Fox C. J Fluency Disord. 2008 Dec;33(4):253-73. Epub 2008 Aug 30.
good scientists. might be interesting. will read abstract and might ask for paper.
A life-time of stuttering: How emotional reactions to stuttering impact activities and participation in older people? Bricker-Katz G, Lincoln M, McCabe P. Disabil Rehabil. 2009 Apr 3:1-11.
ok. might be a bit interesting as i have never heard anything about older stuttering people and how they handle stuttering. is of course dead-end research and will do nothing for better understanding of stuttering. but might be interesting to know more about this age group and one can use it to exert political pressure for more ressources.
Speech skill learning of persons who stutter and fluent speakers under single and dual task conditions. Smits-Bandstra S, De Nil L. Clin Linguist Phon. 2009 Jan;23(1):38-57.
Good scientists. They really seem to be obsessed with the single/dual task performances. Not necessarily a bad thing. If you find a difference, you should zoom into it as much as possible. Will try to read, but i am nearly convinced it is like the other papers. not very clear what is really going on and no very clear effects. But will read abstract and probably ask for paper.
Peer Responses to Stuttering in the Preschool Setting. Langevin M, Packman A, Onslow M. Am J Speech Lang Pathol. 2009 Mar 30.
dead-end research. seems plainly obvious. complete waste of time. i can tell you what is happening. either i ask a few speech therapists of their experiences. that takes me 4 emails to write and within a week i am done. or i guess: some kids will notice, either asking why do you stutter or they might laugh. but most will just accept it. so what have we learned. NOTHING. NOTHING. NOTHING AT ALL.
Social anxiety and the severity and typography of stuttering in adolescents. Mulcahy K, Hennessey N, Beilby J, Byrnes M. J Fluency Disord. 2008 Dec;33(4):306-19. Epub 2009 Jan 6.
dead-end and stamp collecting research. why do we need research to find out what all adolescents and adult stutters tell us. it is not easy in school and many of us experienced severe social anxiety.
Delayed auditory feedback effects during reading and conversation tasks: Gender differences in fluent adults. Corey DM, Cuddapah VA. J Fluency Disord. 2008 Dec;33(4):291-305. Epub 2009 Jan 3.
stamp collecting research. you make some observations and then? And I am never a friend of looking at speech data. way too down stream of the real issue.
Effects of altered auditory feedback (AAF) on stuttering frequency during monologue speech production. Antipova EA, Purdy SC, Blakeley M, Williams S. J Fluency Disord. 2008 Dec;33(4):274-90. Epub 2008 Oct 14.
also stamp collecting research. same as last one.
Non-linguistic auditory processing in stuttering: Evidence from behavior and event-related brain potentials. Hampton A, Weber-Fox C. J Fluency Disord. 2008 Dec;33(4):253-73. Epub 2008 Aug 30.
good scientists. might be interesting. will read abstract and might ask for paper.
Stuttering Hub interviews The Stuttering Brain
Hiten at Stuttering Hub posted an interview with me: check here. He did the interview a long time ago with me, but I still agree with me, which is not always the case!
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