Tuesday, May 26, 2009

At least one courageous clinician

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)

Thursday, May 21, 2009

Abnormalities a consequence of stuttering?

Here is an often made argument that is getting more and more difficult to defend.
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 structure
Here 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.

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.

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.

Friday, May 15, 2009

Einar's question

Einar asked a question to me:
“How much stuttering is socially acceptable?”

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?
 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!

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.

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:
...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:

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).