Mark/Tom: Summary of gene discovery

Mark Bulger has sent me a summary of the paper. Thanks! Here it is (my extra comments are in italic.)

In an earlier study (Am J Hum Genet. 2005 Apr;76(4):647-51), the Drayna research group found a high likelihood that there was a gene or genes related to stuttering on chromosome 12 in a population of Pakistani families. In this study (February 2010), they used DNA sequencing and related technologies to identify the actual genes that produced the results in the earlier study.

Two paired groups were examined: Pakistani families in which stuttering is common together with a control group of Pakistani non-stutters, and American and British stutterers, with a similar control group of matched non-stutterers.

Three genes were found to have variants that occurred in the stuttering groups, but not (or rarely) in the non-stuttering control groups. The changes observed in the DNA code of these genes provide a different instruction for the cells to produce a protein and would be expected to result in a protein with a

Breaking News: Stuttering Genes "officially" found

The discovery of stuttering genes are on the front page of the BBC website. But the BBC and all other media are one year slower than myself! I told you about the discovery here reporting from Greg Snyder's letter in January 2009! ;-)

My first prediction of this year has turned out to be true. Dr Dennis Drayna and his group at NIH at Bethesda claim to have found the first genes for stuttering. The scandal of course is that he and his team knew this for  years (!!), but due to the idiotic embargoing from the top science journals, authors are forced to withhold such information until publication thereby depriving the research and wider community from pieces of the jigsaw puzzle. Even though NIH is funded by tax payers' money. That is not good open science for me!

Summary: A variation of a gene causes disruption of the normal metabolism in some brain areas leading to stuttering, and two or more variants of the gene lead to severe health issue.

Conclusion: For all those who have one variant like Greg Snyder just be happy that you only stutter and don't have another variant!

Congratulations to Dennis and his team for hard diligent work! Here is the NIH press release. (Detailed analysis will follow.)

Researchers Discover First Genes for Stuttering

Findings suggest common speech problem, in some cases, may actually be an inherited metabolic disorder

Stuttering may be the result of a glitch in the day-to-day process by which cellular components in key regions of the brain are broken down and recycled, says a study in the Feb. 10 Online First issue of the New England Journal of Medicine. The study, led by researchers at the National Institute on Deafness and Other Communication Disorders (NIDCD), part of the National Institutes of Health, has identified three genes as a source of stuttering in volunteers in

Guest Blogger Mark Bulger

Just a quick note: I invited Mark Bulger to be a guest blogger at The Stuttering Brain with 1-2 posts per week. I read a few posts on his newly established blog, and I found them all interesting. Adding a new and different perspective. His educational background is biology and genetics, and I always felt that I neglected the genetics part a bit. So I am looking forward to his ideas on genetics.

Diving and stuttering

I have joined a swimming club two years ago, and twice a week I swim a fixed program. One exercise involves swimming for 25 meters with flippers and legs only. I usually try to swim with my head under water. I noticed that after 10-15 meters, my body shows struggling behaviours and at first I tried to act on them by moving my body or breathing out, or giving up. Now I have learned to ignore and live with the struggling behaviours. Interestingly, they go away after a few very uncomfortable seconds, and then I have "breathing" space for 10 more meters and then they start again.

I see an analogy to stuttering. When we have a abnormally long jam in the brain we experience a very uncomfortable urge to "get it out". Typically, we cannot resist the urge and let our body take over and react: tense blocks and other symptoms follow. Successful stutterers have learned to ignore or resist the urge to uncontrollable behaviors, and wait until they have control back.

Now, as in diving, you cannot learn to ignore or resist cognitively, but you need to teach your body to do this by repeated exposure. And not only repetition but you also need to stretch your limits. So I would dive and once I have those struggling behaviors, I would say to myself: "Count until 5 and then go up". In this way, I pushed myself, which is very uncomfortable, but you can only learn this way. After a while, ignoring the struggling behaviours is still uncomfortable but I do not feel I have to act on them. And then I set myself a new limit. Translate this to stuttering, we need to learn this in real situations, and you need to feel the pain and discomfort of not speaking and being blank minded for 1-2 seconds. It is hard work, and you need to keep on doing it.

Mark: Question Time

[Guest blogger Mark Bulg writes:] I'd like to start my contribution to The Stuttering Brain with questions, rather than answers. There are two questions that seem to be favorite discussion-starters in the stuttering therapeutic community, perhaps to the point of cliche. The first asks: If there was a pill that cured stuttering, would you take it? The second, sometimes phrased as a statement, is: Is stuttering a gift? I’d like to rephrase those questions, and start a new discussion.

Question number one: If there was a pill that caused persistent developmental stuttering, how many non-stutterers could you convince to take it?

Question number two: If stuttering is a gift, whom would you give it to?

The Faces of Stuttering

My name is Mark Bulger, and I live near Boston, Massachusetts, USA. At 55 years old, I'm approaching a half-century of stuttering. Since leaving an ineffective therapy program at about 12 years old, I have been free of and entirely uncontaminated by stuttering therapy. Today, by virtue of patience and the passage of time, my stuttering is much improved over my early years. My education in biology predisposes me to see stuttering as a condition with an organic basis, and makes me very skeptical of much theory and research in the field.

Tom has been kind enough to invite me to guest post on The Stuttering Brain. I will try to focus on stuttering research and opinions voiced in the stuttering therapy community.

Presentations of NSA research symposium.

Here is a link to the presentations from the 2009 NSA research symposium. Check out Drayna's presentation. (Thanks to a reader for the tip.)

Hard Talk with Jerry Maguire

Following my Skype chats with Per and Deryk, I chatted to Jerry Maguire, Chief Investigator of the Pagoclone study. He agreed to a no-questions-barred interview. I also want to disclose that he invited me to the opening to his center for the medical treatment of stuttering two years ago on a visiting grant paying my traveling and accommodation expenses. So I do have some potential conflict of interest, but as you see from the questioning, I did ask tough questions. It is very important that we as the stuttering community ask tough and honest questions about Pagoclone, a compound that might well generate hundreds of millions of revenue or tens of millions of loss to the pharmaceutical companies. The financial stakes are high!

Here is the transcript of a 2 hour long chat. Enjoy!

Tom Weidig: Thanks for having the courage to a no-questions barred interview with TheStutteringBrain! Let me start with yourself. You said that you are a person who stutters. At talks or in person, you are stuttering relatively little apart from occasional small blocks/pauses. Is my observation correct? In all situations? How about when you were younger?

Gerald Maguire: My stuttering is greatly affected by the medication I take. If I were to stop my medication, my stuttering would return to its levels that were around when I was younger. My

The faces of stuttering

My name is Peter Louw. I am an ex-patient and unashamed admirer of Dr Martin F Schwartz, of the National Center for Stuttering in New York (www.stuttering.com) who believes that stuttering is the learned result of the vocal folds' hypersensitivity to stress in 1 - 2% of people. Maybe he, too, is a crackpot, but I have been doing his Passive Airflow Technique for 30 years and it has helped me much. Presently I am developing a blog on this issue at http://stuttersense.blogspot.com. Looking forward to more of your stimulating blogs. Keep up the good work!

Deryk conquering the stuttering wildness

I had a Skype chat with Deryk Beal, researcher in stuttering and soon-a-PhD, at Luc de Nil's group in Toronto. We talked about his research on auditory involvement in stuttering. That's how scientific debates are done! See also my chat with Per. If any other researchers wants to undergo interrogation, let me know!

TSB: Hi Deryk! Thanks for your time and admitting to the stuttering community that you read my blog! You are about to finish your PhD on stuttering. What's the topic?

Deryk:  Hi Tom! My doctoral dissertation explored the potential involvement of auditory processing differences in stuttering in both adults and children who stutter.

TSB:  So is the auditory region different in people who stutter?

Deryk:  A straight forward question. Unfortunately, the answer is not straight forward.

TSB:  Why not?

Deryk:  Behavioural, neuroanatomical and neurophysiological studies point to potential differences in the auditory regions of people who stutter.

TSB:  So is that rather a cause of stuttering or a consequence of stuttering (like living next to a noisy motorway) or is that kids with a weak auditory system are more likely not to recover?

Deryk:  I believe that there is an emerging pattern in the data, both published and unpublished (from my supervisor's laboratory and others), to suggest that children who stutter may have

The illusion of brain plasticity

I couldn't have said it better as this reader:

Isn't it funny. These people quote the pop-science book "The Brain the Changes Itself" as though brain plasticity is the cure for everything. They think that just because the brain has plasticity, you can accomplish anything. One problem is that (as Tom pointed out) the brain's plasticity is not constant throughout a person's lifetime. As a little kid, I was able to learn a language effortlessly and without an accent. I'm trying to learn a language at the moment and it is very very difficult, and I have an accent. The speech/language areas of the adult brain are much less plastic than those of a child. Brain plasticity has its limitations, but Bodenhamer will have us believe otherwise.
Also, even though the cortex does indeed have impressive plasticity, the brain has parts other than the cortex. Some believe that cause of stuttering may be in the subcortical parts of the brain (e.g. the amygdala), and it has been shown that these areas are significantly less "plastic" than the cortex.

Bodehamer at his crackpot best!

I was not happy to read the article Bob Bodenhamer - creating mental pathways on the BSA website . Let me dissect the different statements and show how empty and crackpot-like they are.

The guest speaker at our August 2009 conference call was Bob Bodenhamer, who is a Neuro-Semantics practitioner in the United States.

Meaning he has no real professional qualification in speech and language, psychology or psychotherapy. He cannot even claim that he is a stutterer and has first hand experiences. I always say that we should look at the quality of the arguments put forward and not the proposer, but these are weak, too.

He talked about the possibility of installing new networks in the brain to help fluency.

What exactly are "installing new networks in the brain"? The brain has many neurons. Most from birth and the number generally decreases quickly in childhood by a process called pruning. What he probably means is that you need to learn something new. What a revelation! There is nothing new in this statement: good old learning? It is just pseudo-scientifically embellished language. And he does not even understand the meaning of neural networks. Neural networks are groups of neurons which learn by changing the strength of the connections. There are NO new networks. The networks we have in the brain are mostly set by our genes.

Bob said that new information placed a great deal of credibility on the ability of the brain to learn new information throughout life. For the person who stammers, there was the very real possibility that, through a lot of imaginative repetitive thought, he or she can install new neural networks for fluency as opposed to the old neural networks for stammering.

Again, what's new? Everyone knows that we can learn new things, but it gets on average more difficult as we

The letter the Telegraph didn't want to publish

Here is the letter, that did not get published by the Telegraph, from the British Stammering Association on Daily Telegraph columnist Miss Insensitive Liz Hunt making fun of stuttering. (Oh did I mention she was headhunted from the Daily Mail, and I have to say that shows well.)

Dear Sir/Madam

I write with regard to the Comment published in today’s Telegraph by Liz Hunt.

Ms Hunt comments on Ed Balls’ ‘tear-jerking’ interview about his life-long struggle with stammering. We here at the British Stammering Association were delighted that Mr Balls publicly commented on his struggle to speak. Stammering affects almost half a million adults in the UK. Far too often, it is hidden and silent as people do not wish to be associated with it in public, often because they see it as something shameful.

This is no doubt due to attitudes to stammering demonstrated by Ms Hunt’s “Bbbballs” outburst, something which is all too reminiscent of, and on a similar intellectual level as, much of the school yard bullying that children who stammer still experience daily. I wonder if Ms Hunt is just as keen to mock other disabilities – how about people with cerebral palsy in wheelchairs: are they, too, fair game for Ms Hunt’s pen?

We thank Ed Balls for his courage in standing up to such taunts; and for showing us that stammering is no bar to communication – just as fluent speech, or access to a keyboard, does not necessarily equate to good communication skills.

Norbert Lieckfeldt
Chief Executive
British Stammering Association

Condemn Telegraph columnist Liz Hunt for making fun of stuttering

I urge you to go to Miss Insensitive Liz Hunt's column at the Daily Telegraph and leave a comment condemning her latest post. She is making fun of stuttering by giving Ed Balls the name Bbbballs for revealing that he was stuttering as a kid. She might well consider the possibility that Labour politician Balls is doing his outing for political reasons, but there is no reason to make fun of stuttering in such a way. Hunt sends the message that it is OK to make fun of stuttering. If she can, why shouldn't kids and teenagers do so to their stuttering school mates? They shouldn't of course and nor should Miss Insensitive.

Just imagine anyone would write:

"Blunkett is blind in all respects to other people's concern". (a former Labour minister was blind)

"Brown has an one-eyed view on politics". (the UK prime minister is blind on one eye.)

She would never do that, but yet again it is OK  to make fun of stuttering. Shame on you! I just had a look at your picture. You seem to be getting a bit older: Not in your primes anymore, are we? Maybe we can give you a nickname like Wrinkly Liz, Has-to-hunt-now Liz, Cellulite Liz. How would that make you feel? Are you now turning into Miss Sensitive?

Become a follower

I would be grateful if you show support for my blogging by becoming a Follower. See the right border with all those pictures! It is nice to have a face of those reading the blog or at least an icon if you are too scared to be identified as a TheStutteringBrain reader! For those stutterers who do not want to out themselves, and for those clinicians who are fearful of their further career! ;-)

It is easy: Just click FOLLOW, and log into your account. They offer several options, Google, Yahoo or Twitter, or an Open ID accounts. And remember that kind of support is much cheaper than actually donating some money for allowing me to attend conferences! ;-)

Extreme blushing and stuttering

A reader, Diogo from Portugal, makes me aware of similarities between extreme blushing and stuttering:

I don't know if you're aware of a medical condition called Idiopathic Craniofacial Erythema, it is the technical name for a extreme condition of blushing. I don't know if anybody made the connection  between stuttering and ICE (I searched the web but didn't find anything) but it seems to me that both share some common traits. If you dont know anything about this I advise to read the wikipedia entry (http://en.wikipedia.org/wiki/Idiopathic_craniofacial_erythema) and most of all this New Yorker article called "Crimson Tide" (http://www.angelfire.com/journal2/sadhelp/nym.htm). The article is about someone with Idiopathic Craniofacial Erythema and many things that this person feels about her condition are very, very similar to stuttering. Also how her doctors deal with her problem is very similar how different doctors try to treat a stuttering condition.

Idiopathic Craniofacial Erythema has a treatment and this treatment is an operation that shuts down the blushing mechanism. Unfortunate the same can't be done for stuttering, the equivalent would be to shut down the talking mechanism (then you wouldn't stutter but you wouldn't talk either). We can live without blushing but living without talking it is very difficult.

It seems to me that both conditions are some kind of a rare hypersensitivity to stress. We all blush and we all stutter. But in some of us the blushing mechanism and speaking mechanism are much more sensible to stress variations leading to ICE and stuttering. I would say it is a biological flaw that it is later emphasized by psychological and social conditions.  

Nevertheless I think that a correlation can be made between these two conditions (perhaps there might be other similar conditions) and by studying them together perhaps some new conclusions can be made about how do they appear, how they work and how can they be corrected (if they can).

Pagoclone: puzzling report.

A reader has sent me a first-person report on his Pagoclone trial experience. I am very puzzled by his doctor's comments. Here is his report:

I received an invitation to be part of the next Pagoclone Phase IIb trial last March and started on April 15th. As you know the Phase IIb was to be a double blind study whereby they would also be trying several different doses, .15mg, .30mg, and .60mg all twice a day. I believe that I was on Pagoclone for the majority of the study and came off of Pagoclone and went on the Placebo at least at the very end of the study to properly transition to the Open Label Phase that I am currently on. I truly believe that the medication works. I do believe that I experienced a modest improvement in my fluency, somewhere around maybe 40% better fluency, and then after the dosage change, back to the placebo, I experienced a pretty dramatic drop in fluency to almost pre-study levels. I have not had any problems with side effects, at least none that I am aware of, blood work might show something, etc. However, over the course of the study, I have gained five pounds, but I believe that can be attributed to my horrible diet over the last year....

At my visit on Tuesday with the clinic, the Doctor asked me to describe how the medication works. I explained to him that I feel it reduces the stress, tension and pressure in the articulators (lips, mouth and jaw) which allows for a free flow of speech, or a much more free flow of speech. There is still room for improvement, even on the highest dose, which I am on now, .60mg. I am not aware why they are stopping at .60mg. Why not double it? or Triple it?
The doctor that is over the clinic, that I meet with every visit, had some pretty candid information for me. He said that the results that he has seen over the last year indicate to him that the medication works in about 2/3rds of the participants and of those 2/3rds that it works on, it has the most dramatic effect on the highest dose (similar to my experience). He also stated that most people do not have much, if any, reaction to the drug and he called it a fairly benign drug.
I asked him when we would know the results from Phase IIb and he said that he's surprised that they have not reported on it yet. I also asked him to peer into his crystal ball and predict for me what the final outcome will be relative to the future of Pagoclone. He said that he believes that it has a better than 50/50 chance of ultimately being approved. He said that his typical response for the other drugs that they test for is, "it's a 50/50 chance". He stated that because of its benign nature, the efficacy of the drug and the fact that it meets an unmet need, concludes him to think that it will have a greater chance of being approved than not being approved.

I am very puzzled by his doctor's comments, if correctly reported and understood. How can the doctor know that the medication works for 2/3rd of the participants if he doesn't know who gets what? After all, it's a double blind trial. And how does he know that it's most effective on the highest dose? Either the participant has misunderstood, the doctor has mis-thought, or the blind has been broken somehow (which I do not believe.)

Petition ASHA for fairer marketing!

If you wish to sign the petition, please send an email to Peter Reitzes, MA CCC-SLP - preitzes@yahoo.com. Please include your name and credentials exactly as you wish them to appear on the petition.

If you want more information on this topic, the issues were discussed in detail during the StutterTalk podcast, episode 173. In the notes of that episode are many pertinent links.

Please feel free to share the petition with your colleagues and others who may be interested in signing the petition.

Thank you for your consideration,

Peter Reitzes, MA CCC-SLP

Co-host, StutterTalk.com podcast

---------------

David R. Denton, JD, MA, CCC-SLP, ASHA Fellow

Director of Ethics

American Speech-Language-Hearing Association (ASHA)

2200 Research Blvd., Mail Stop #309

Rockville, MD   20850-3289

PETITION

We, the signatories, petition the American Speech-Language-Hearing Association (ASHA) to rigorously enforce compliance to its self-imposed Code of Ethics. In the preamble to ASHA’s Code of Ethics, the organization states that “The preservation of the highest standards of integrity and ethical principles is

My 2010 outlook on StutterTalk

I have been chatting to Peter and Eric on StutterTalk about my predictions for 2010 and more.

My predictions are:
1. Pagoclone Phase IIb results will come out: moderate or no effect for some, and none for many.
2. The baseline of the control group will give us a unique view to the size of the measurement bias.
3. Hopefully finally some news from Drayna's genetics group on a specific gene causing stuttering in some families. (He hasn't published an article on stuttering since 2005! See PubMed.)
4. First results from Franken's early childhood intervention trial: Lidcombe vs Demands & Capacities.
5. Skeptical on the brain imaging front. The easy stuff has been done and has hit the complexity wall.

And again, I am not happy by the way I spoke. It's the third time on StutterTalk, and I told myself to speak slower and make more pauses. And I failed again. There is not reason for me to speak like this. It is also amazing that I shift from very fluent phases to very dysfluent phases.

Newton: talked much and pleasantly

I dug into some 300-year old historical documents on Newton: the memoirs of William Stukeley, a good friend of Newton. Here is what the Gentleman has to say about Sir Isaac on meeting some Lincolshire fellow countrymen:

Sir Isaac enjoy'd himself extremely in this society of his countrymen; & talkd much, & pleasantly. particularly I remember one part of the conversation turn'd upon musick, of which Sir Isaac was fond;

Newton was "talking much and pleasantly". Does not sound much like a description of someone who stutters? He certainly seems to like talking. And here is more of Sir Isaac speaking:

Sir Isaac; who remain'd some time with us. & no joy could equal that which I took, in seeing the great man, of whom we had imbibed so high an idea, from being conversant in his works.

 I often visited him, sometime with Dr. Mead, Dr. Halley, or Dr. Brook Taylor, Mr W. Jones or Mr Folkes & others. sometime alone; and we discoursd upon divers curious matters, as well as on country news:

 I was delighted to observe, Sir Godfry, who was not famous for sentiments of religion, sifting Sir Isaac, to find out his notions on that head; who answerd him, with his usual modesty, & caution.

I didn't manage to read the whole text, but no indication of Newton stuttering.

Isham stuttered as a teenager.

OK. I feel a bit guilty for having robbed you of Isaac Newton as being a stutterer. And you won't accept me even as a good Newton substitute though I do stutter and I have a PhD in theoretical physics! Here is a compromise. A confirmed semi-famous recovered stutterer. It's Professor Chris Isham: standing next to Hawking. He is a well-known professor in theoretical physics for his work on quantum gravity and quantum mechanics, where he among others things introduced new mathematical concepts and showed that under certain circumstances time is not fundamental to certain physical theories. He is considered as the the Imperial College analogue of Cambridge's StephenHawking, and Oxford's Roger Penrose.

He was the supervisor of my Master thesis on a new framework for quantum mechanics. And he told me that he was also stuttering, but only as a child or teenager. And then I asked him: So what did you do? He said that his teacher made him read in front of the class every day (I think), and then it got slowly better. And I said: That's it? Are you sure that's what made it go away? As far as I remember, he replied: I don't know. Maybe I was just more lucky than you.

They all seem to recover just like that. Why not me? Why not you? Why them?

Conflict of interests at ASHA

Peter Reitzes dug out some very interesting facts which suggests significant conflict of interests at ASHA. Here is the text from their website:

During today's episode Peter Reitzes and Eric Jackson discuss our thoughts and concerns regarding the LinguiSystems "Outcomes Guaranteed" statement and "Guaranteed Outcomes." We discuss our strong concerns regarding the American Speech-Language-Hearing Association's initial response and urge ASHA to look closely at its Code of Ethics. We discuss the financial aspects of this situation and strongly urge ASHA to voluntarily and proactively look into such matters and to launch investigations when necessary. A fuller show summary with links to web pages and documents discussed are available below so that listeners and the public can decide for themselves.
Peter wrote a letter to the Board of Directors of the American Speech-Language-Hearing Association which is available here at the Stuttering Brain Blog.

Is ASHA violating its Code of Ethics?

Ethical conduct, guided by a code of ethics and re-enforced by a compliance procedure, is essential for any profession. Peter Reitzes from Stutter Talk has written to the board of the American Speech and Hearing Association expressing his concerns about the guarantees made by LinguiSystems about their stuttering therapy aids.

I am especially troubled by the response attributed to ASHA:

LinguiSystems is a multi-million dollar company and that ASHA does not want to risk alienating them.

ASHA must uphold the highest professional standards, which dictate that the ultimate beneficiaries of a policy must be the patient. Or, are they saying that they value other interests higher than the patient's welfare? And conflicts of interests need to be fully and prominently disclosed in an easily understandable manner.

Here is Peter's letter.

January 15, 2010

ASHA Board of Directors:

As a member of the American Speech-Language-Hearing Association (ASHA) and DIV4 (Division 4, Fluency and Fluency Disorders) and as a co-host of the StutterTalk podcast, I want to share some concerns I have regarding the LinguiSystems website and how materials are being promoted by claiming they are “guaranteed to work.” (http://www.linguisystems.com/outcomes.php)
LinguiSystems' co-owners, Linda Bowers and Rosemary Huisingh, are both speech-language pathologists and ASHA members and are therefore bound by our ASHA Code of Ethics.

Analogy: Trigger and cause

I am still debating with Michael Mills on his crackpot award for saying that stuttering is caused by social anxiety. He keeps on repeating that stutterers do not stutter when alone and therefore stuttering must be caused by social anxiety. Here is an analogy on the logical fallacy.

Issue:
The car makes strange noises when traveling at high speed.

Your reasoning:
It is a proven fact that when the car travels at low speed there is no strange noise. So the cause of the strange noise is the high traveling speed. So my treatment is to make sure that the car does not travel at high speed.

My reasoning:
Yes, the noise happens at high speed. However, the real reason is not the high speed, but, for example, the engine that does not work well at high speeds. So, yes, one approach is to just ignore the faulty engine and only travel at lower speed, but the engine is still working badly. And don't tell me that the high speed is the actual cause of the noise. It is just a trigger to expose the faulty engine. Another approach is to repair the engine, if possible of course, and then you can travel at ANY speed like all normally functioning cars do. Of course, if you can't repair the engine because it is old, driving at lower speeds is fine by me as a treatment, but not as an explanation of cause.

International Gathering in Buenos Aires in 2011?

Can one of my spies please let me know what is going on with the Facebook Group: International Gathering for People Who Stutter - Argentina 2011. Who is Jeffery Cane? Does this clash with the 9th ISA conference held in May 2011 in Buenos Aires, Argentina? Why did he put pictures from the last ISA conference on but called it international gathering in Buenos Aires?

Argentina will be hosting a giant 5 day party in Buenos Aires in May 2011 to bring people together who stutter or are interested in stuttering from all over the world to discuss stuttering treatment and support and generally have a wild and fun time meeting each other. Join this group if you are interested in being part of it and we will keep you up to date with all the details.

Who can we trust?

I had a look at well-known web pages, and most have propagated the Isaac Newton urban legend. My question to you and to them is: How can we trust you on other information if you just copy information like parrots?

Judy Kuster's well-known and respected website lists Newton. And took over a picture from Darrell Dodge at Veils of Stuttering that includes Newton, and Dodge writes:

Isaac Newton asked that the windows of Parliament be closed so the public wouldn't hear his stuttering.

Disabled world writes:

Sir Isaac Newton - (4 January 1643 – 31 March 1727) A very important scientist who is responsibe for founding the three laws of motion along with studies concerning Universal Gravitation. He studied many scientific disciplines but mainly stayed inside the field of mechanics. It is said that Newton had mainly discovered gravity by examining a falling apple, that would have been one of the major reasons for him to start his researches in the subject. Was thought by many a product of psychosis but he may just have been in his right mind. Isaac Newton once asked that the windows of Parliament be closed so the public wouldn't hear his stuttering

This description is just so wrong, also in the physics. He actually also co-developed calculus, a key area of

Newton: no stutterer!

So Newton is a stutterer, according to Stuttered Speech Syndrome, Veil of Stuttering, and others.

Isaac Newton asked that the windows of Parliament be closed so the public wouldn't hear his stuttering.

Check out the picture above, and read the following quotes:

LiguiSystems guarantees the unguaranteeable!

Listen to Peter on StutterTalk and his concerns about LiguiSystems' guaranteed outcome from fluency aids. He wonders what should be done to express his concerns. And he wants to write to them and ask them to come on the show.

Here is what needs to be done! ;-) They write:

Guaranteed Outcomes
- Develop confidence and competence in your treatment of fluency disorders
- Improve clients' fluency as they evaluate and change their attitudes and beliefs and learn to use fluency enhancing strategies, self-monitoring techniques, and cognitive/self-instructional strategies

Guaranteed Outcomes
- Develop coping, cognitive, motor, and social strategies
- Speak confidently
- Deal with reactions to stuttering and reduce physical manifestations

I write:

Yet again, like with Speech Easy, we have some money-greedy business people covering themselves in sheep clothes using elaborate sales and marketing techniques misleading in my opinion people who stutter and therapists (or being guilty of ignorance on stuttering, you choose). I am sure those who are responsible for sales and marketing will read these lines. Here is my message to you:

You should be ashamed of yourself for using those sales tools to hook people on your products. You are giving them false promises and hopes. I know. I know. You are telling me that your text is not actually doing that. What a lame excuse! Yes you are completely right. But one needs to have a f***ing PhD, a lawyer eduction, and one hour of concentrated thinking to realize this. You know exactly that the average mind just registers "Guaranteed", "evidence", "supported by". You know that. Again, you should be ashamed of yourself for making money that way. Do you really have to use these kind of tricks? Do you really need to do this kind of work? Can you not do something else and just buy 2 shoes per year instead of 3?

Proximate and Ultimate causation

I need to clarify the concept of cause as confusion reigns among many readers. Check out this wiki page on Proximate and Ultimate causation.

Harry asks a sensible question:

You say :
"Let me be crystal clear. I certainly view social anxiety as a consequence of stuttering and not the cause of stuttering."

...and then late add :

"There is no doubt in my mind that the shame and fear associated constitutes a significant part of the psychological and social handicap that we experience and modulates the frequency and severity of stuttering events."

Isn't this a contradiction? So, the fear and shame modulate the frequency of our stuttering, and yet you do not beleive that it is the cause?
Surely, it causes some of the stuttering. Take away the fear or shame (eg. when we speak to an animal, or a baby, or to ourselves), and most of the stuttering disappears.

The ultimate cause is the neurobiological deficiency, because:

1) Without the neurobiological deficiency, we would never have started stuttering in the first place. (which creates mal-adaptation of learned behaviours and unhelpful beliefs.)

2) Without the neurobiological deficiency, we would have far less difficulties controlling our speech fluency in a demanding speaking situation. (which makes it difficult to unlearn learned behaviours and change unhelpful beliefs.)

A proximate cause is the learned behaviours and beliefs, because they modulate stuttering.

A good analogy is:

Example: Why did the ship sink?
o Proximate cause: Because it was holed beneath the waterline, water entered the hull and the ship became denser than the water which supported it, so it couldn't stay afloat.
o Ultimate cause: Because the ship hit a rock which tore open the hole in the ship's hull.

Social Anxiety oil on neurobio fire

The Australians have taken up Social anxiety & Stuttering. The Onslow group, and the Craig group have written paper on the topic. And I believe that their work on the social anxiety aspect of stuttering is very important, especially in the treatment of people who stutter.

Let me be crystal clear. I certainly view social anxiety as a consequence of stuttering and not the cause of stuttering. And the source of our abnormally high level of social anxiety is not neurobiological like for many people with social anxiety disorder.We instead have built up belief systems about stuttering and individually learned memories to stuttering events that led many to suffer social anxiety related to their stuttering. There is no doubt in my mind that the shame and fear associated constitutes a significant part of the psychological and social handicap that we experience and modulates the frequency and severity of stuttering events.

The good news about social anxiety is that you can get rid of most of them,

What I accept or not.

I accept

1. I have a neurobiological abnormality affecting my speech systems leading to a propensity to stutter.
2. I  have to live with my abnormality for the rest of my life. (as far as we know today).
3. I have to work on myself if I want to improve my speech fluency.
4. I have to work on myself if I want to minimize the psychological and social consequences of stuttering.
4. shame, beliefs and most fears I held or experienced were completely unnecessary and harmful.
5. stuttering had some positive effect in that I was forced to take a deeper look at myself.
6. moderate to severe stuttering can be a burden to others who listen to me that I should minimize.
7. some jobs that strongly focus on fluent verbal expression are not for moderate or severe stutterers.

I do not accept

1. the way that I speak as desirable to myself or others.
2. stuttering is a gift.
3. stuttering is only a handicap if you perceive this to be a handicap.
4. the excuse of therapists that their therapy only failed because I/we did not try hard enough.
5. stuttering is a part of me that I should love, too.
6. people who stutter no matter how much they stutter cannot do jobs involving a lot of communication.
7. people who stutter are severely hindered by stuttering to have a successful life and career.

Meeting of Luxembourg-based stutterers

On Tuesday evening, I had invited six fellow stutterers to my flat for a few hours of social bonding, discussions, and sharing experiences. All this would not have been possible without Doodle. This cool website allows you to find a common date and time that fits most people. I tried to organise meetings before but it was a complete nightmare and I could never get them all together. I love doodle: just a simple idea.
One girl who attended told us how she refused to go to school at the age of 14 or 15, and then never went back! She is now attending evening classes and will do her high school degree soon. And she is scared of the oral exams. We all tried to encourage her, mainly by referring to our own experiences. Nearly everyone told the story of them counting the minutes to the school bell. At least in Luxembourg, we do exercises row by row, and so you can develop a prediction model of whether you still have to say something or not. I worked out the average time it would take to do one exercise per student and then multiply this time with the number of students

Anecdotes on Pagoclone.

Yet another unscientific anecdote on a Pagoclone trial participant:

Hi Folks,

I completed my full year of double blind study 4 days ago. I'm 80% sure that I was on placebo the entire full year.

3 days ago I started open label, I noticed a great amount of improvement of flow in day 2. Today I can feel it even more. Even though my 1st bottle is a pretty low dose, I'm waiting for week 2 so that I can go on to a high dose - it seems to be working.

That free flow of thought is weird, for those that have seen the youtube video of the guy explaining how it works - yes it actually does feel weird.

Also anxiety has lowered for me. I've always had a anxiety problem.

I'll continue on as I go along more.

Placebo? Or Pagoclone-induced effect? Effect because the brain system gets off balance, feels differently, strong placebo kicks in because people assume the substance is working and more fluency follows, but this will go away after the brain re-adjusts? Effect due to reduction of anxiety that increases the trigger frequency of stuttering events? Effect because it helps the speech systems themselves?

Different answers for different people? How can find out? Will the measurement problems affect the results? How about long-term fluency? Does Pagoclone help to stabilise patient so they can do behavioural treatment?

Visits 2009

I had 76'000 visitors this year compared to 54'000 visitors last year. I do not expect any major increases (without putting much more effort into the blog), especially because my blog does not deal with more main stream issues like StutterTalk does. The readership is getting settled more or less. However, I expect a jump in 2010, because the Pagoclone Phase IIb results are coming out and my site will have more traffic. You can see this from the top posts last year. Pagoclone is very much the top interest of readers: the hope for more fluency without more work or self-reflection! Also, if you google Pagoclone, TheStutteringBrain is close to the top. So the day the news will break, many people will click on my blog.

/2009/01/pagoclone-trial-start-in-march.html 498
/2009/05/your-question-pagoclone.html 339
/2009/01/why-sudden-onset.html 134
/2009/02/interview-with-jerry-maguire-on.html 88
/2009/03/stuttering-brain-disorder.html 86
/2009_11_01_archive.html 83
/search/label/Crackpots and Fallacies 72
/2009/01/how-janus-of-speecheasy-is-misleading.html 71
/search/label/Medication 70
/2009/10/pagoclone-trial-finished.html 67
/2009/04/oprah-winfrey-should-be-ashamed.html 61
/2009/11/fluke-or-side-effect.html 60

Happy New Year!

Happy Xmas!

After a year of fighting crackpots, logical fallacies, pompous claims, a few loopy commentators, my ego and my stuttering, lets have a truce for a few days. I am looking forward to more fighting next year!

My reply to Leys' reply

Here is my reply on Leys' reply on my post of him being sloppy on science:

On the first point, I am thinking of Kate Watkins et al who, on the 10th of October, 2007, published the following in Brain: 'Our data support the conclusion that stuttering is a disorder related primarily to disruption in the cortical and subcortical neural systems supporting the selection, initiation and execution of motor sequences necessary for fluent speech production'. I accept, as do most other people, that many other factors contribute, particularly as time goes by, and these can turn stammering into a kind of syndrome. But none of that detracts from the view that the ROOT CAUSE of stammering is a neurological condition, a kind of faulty wiring in the brain.

As I wrote, I do not disagree about there being an underlying neurobiological issue, but you exclusively talked about the neurological aspect. However, stuttering symptoms are so diverse and fluctuate significantly that a pure neurological explanation is not enough. Moreover, cognitive beliefs and social anxiety make up a great part of the handicap. Watkins or any other neuroscientist have not explained the symptoms of stuttering. My

Prestigious clinical meeting in May

TheStutteringBrain keeps you up-to-date. A few readers made me aware of a symposium happening on May 22-24th in Crotia. According to the author of the email announcing the meeting: we are shaping up to have the most productive and prestigious clinical meeting in the field for some time Anyone wanne guess whose style of writing that is? ;-)

If you are a clinician and not invited, here is the list of connected clinicians and non-clinicians important enough to count as clinicians that were invited:

To:jsyaruss@pitt.edu; deborah.kully@ualberta.ca; marilyn.langevin@ualberta.ca; S.Block@latrobe.edu.au; admin@stuttering.org; jarmson@dal.ca; tsaltukl@utk.edu; John.VanBorsel@UGent.be; Michael.Blomgren@health.utah.edu; executivedirector@stuttering.com; bpryan@csulb.edu; c.andrews@usyd.edu.au; n.trajkovski@usyd.edu.au; rosalee.shenker@mcgill.ca; sarita.koushik@gmail.com; m.lincoln@usyd.edu.au; Chris.Lewis2@health.wa.gov.au; brendacarey@bigpond.com; abothe@uga.edu; Jason.Davidow@hofstra.edu; melissa.bray@uconn.edu; thomas.kehle@uconn.edu; ashleycraig@med.usyd.edu.au; Sally.Hewat@newcastle.edu.au; m.franken@erasmusmc.nl; attanasioj@mail.montclair.edu; per.alm@neuro.uu.se; Cook, Frances; Norbert Lieckfeldt; rossmenzies@ozemail.com.au; Ross Menzies; Sue Obrian; Millard, Sharon; Nicholas, Alison Cc: Jasmine Katakos; Suzana Jelčić Jaksic

Michael Mills

Mills' response to his Crackpot Award shows how ignorant he is about the science behind stuttering. He is treating people who stutter, and he should at the very least be up-to-date with the current understanding on stuttering.

stutterers do not block when speaking out loud alone in a room - that is an objective fact - it is true for all the thousands of people who stutter that I have come into contact with - and it is true for all the fluent speakers who, when asked to give a public speech, panic (i.e. alone in a room they can give a great speech - but when giving the same speech in front of people they panic and block) - why is it so? Alone in a room fluent - explain it in other terms apart from social panic - that is your challenge - if you have the courage for it - or are you going to revert to your evasions of attacking the person rather than debating the concept

You are mixing two things here: the observation that stutterers have few blocks when alone, and the interpretation of this observation. Your interpretation (1) is that social panic causes the block, because that is what we sometimes see in other people. And further you say that this developed in childhood due to bad

Per Alm: Battle of The Stuttering Brains

Here is an edited transcript of a Skype debate I had with Per Alm: click on Read More below to read all! That is a good scientific debate for me, much like the debates that I had and am having with friends who are top scientists at top universities, and very unlike what you hear at most stuttering conferences. There you hear buzz words, parroting, self-congratulations, no talk about weaknesses of own models or mistakes, consensus-seeking, and lots of pseudo-scientific bla bla bla.

Tom: There are two issues in stuttering in my view
Tom: 1) to obtain an overall framework within to fit the disorder
Tom: 2) to look at what goes wrong in a specific individual from gene to symptoms.
Tom: your focus is on 2)
Per: And 3 -- what to do about it.
Tom: ok... that's too real-life for me :-)
Per: my main focus is on 1 but in that work I also look at 2, because the empirical data is in 2 (but also on clinical implications)

Dual-tasks misconception

Chris writes:

I've stuttered for 26 years and I don't believe that the ability to do dual tasks at once is my problem. I can do two tasks at once. Matter of fact, I can usually speak better when my mind is preoccupied prior to speaking.

You may be onto something. I'm not sure the cause of stuttering, but I know it is a combination of physical and mental dimensions.

You misinterpreted the evidence. It seems as if people who stutter as a group perform worse than fluent speakers. It is an inferior average performance. We can of course perform dual tasks, but on average we might be worse. And you could well be better than many fluent speakers. Also it is mainly on motor tasks. And an inferior performance might not be the cause for stuttering at all. Might well be that the brain wiring is suboptimal leading to suboptimal speech and dual-task performances.

I agree with the combination of physical and mental dimensions. But I would add that there are two types of "mental dimensions": cognitive like beliefs and individually learned like associations.

Dead stuttering blogsphere

Not much is happening in the stuttering blogosphere. TheStutteringBrain has fewer posts lately, and not that interesting ones. ;-) StutterTalk seems to be talking more to themselves as an answering phone message that repeats over and over again. StutteringHub is gone more or less silent. Greg at Stuttering.Me hasn't posted for weeks.

Physiological vs psychological

A reader asks a sensible question:

Those guys said "... speech blocking is not a physiological problem, but a psychological ...", and you disagree.

The header says "Stuttering is psychological".

Fair enough, but perhaps you can answer a question for me. What is the difference between a physiological disorder and a psychological disorder? I'm not trying to be argumentative just for the sake of it; I'm just interested in your answer.

Physiological is about the functioning of the neurobiology of the brain. And psychological is about everything

Leys Geddes: Sloppy on science

Working on science of stuttering sometimes drives me insane. One hour ago, I had to give a crackpot award to a website that has not clue about stuttering and assumes stuttering is purely psychological. And, then when I was done with the psychos, the neuros needed to be corrected.

Leys Geddes, Chair of the British Stammering Association, writes in Speaking Out:

There are two main things that people need to know: firstly, that the root cause of stammering is a neurological condition, a kind of faulty wiring in the brain, which makes it very difficult for us to control our speech and speak fluently.

In itself, the sentence is probably correct to a first order approximation. However, misleading when considering stuttering as a whole. It's too neuro, and psychos understandably disagree. A lot of stuttering behaviour is learned, re-enforced, and kept alive by an underlying neurological issue. I would even argue that a stuttering event is often not due to the neurology at that precise moment but environmental or internal stimuli triggering stuttering behaviour. And controlling stuttering will mostly involved changing the cognitive behavioural aspects rather than the neuro.

And secondly, that Early Intervention is particularly effective for very young children - because that faulty wiring has not yet kind of hardened up. So, if they are seen by a speech therapist, who is qualified in paediatric stammering, there is about a nine out of ten chance that those at risk of a lifetime of stammering will recover.

There is no evidence for any of the statements:

1) particularly effective? There is no hard evidence for full recovery of any child who would have recovered anyway. No-one ever reads the follow-up study of the flawed Lidcombe study: Three of the children (16%) who had completed treatment successfully had relapsed after 2 or more years of speech that was below 1% syllables stuttered. That's about the recovery rate! Again there is no clear evidence for full recovery. But you could argue that those who would not have recovered anyway have lighter stuttering symptoms. Fine but no cures proven as far as I see. No magic happening.

2) It is not even clear that the natural recoverers ever were at risk of developing stuttering. They might well have recovered anyway and just suffered from temporary stuttering due to a temporary developmental mismatch.

3) And this "faulty wiring not having hardened up" is Alice in Wonderland stuff. The stuff that makes us dream. A messed up brain is a messed up brain, and at best can the brain compensate so that it bypasses the messed up area or optimizes in and outputs and behaves fine overtly.

Crackpot Award for the Gimstedts

I am happy to announce yet another Crackpot Award. Douze points pour la Suede. For Lars and Hildigerdur Gimstedt on Psykosyntes. A special mention goes to Lars Gimstedt. He cannot even claim naivety for the stupid claims they make because he has a degree in physics! Shame on you! You didn't do any background research.

Let me de-construct what they write:

Stuttering is a learnt behavior

The speech blocking is caused by a reaction into a conditioned state in certain conditions or situations. This conditioned state is a result of learning, although sub-consciously. The state is characterized by nervousness, "mind reading" (of the presumed attitude of others), muscular tensions and spasms.

Explain me why some start stuttering and others don't. Explain why stuttering has a strong genetic component. Explain why brain imaging consistently finds differences in brain structure and functioning.

Stuttering is a psychological problem

As there in almost all cases are other states, induced by certain types of situations, where the stutterer is able to talk fluently, speech blocking is not a physiological problem, but a psychological...

Wrong. It doesn't mean that if I am not stuttering sometimes that it is not caused by a physiological underlying issue. So are you saying that because a drug addict does not consume every day, that it is purely a psychological issue. Are you saying that semi-deaf people who hear better on some day, that it is purely psychological?

To summarize, they have no clue about stuttering but offer treatment for stuttering. Extracting money from people who might be desperate to cure their stuttering. I especially despise the way how their website puts the emotional screws on people who stutter.

Please email the good news to them: mail@psykosyntesforum.se!

Memento Stuttering

Self-reflection causes pain, especially when focusing on not-so-wanted aspects of one's behaviour. Let me look at what I am doing when I stutter. Dave Rowley's pictures during my guest lectures are a good example. I really hate to see those pictures, and would like to dig them away very deep. However, that would mean that the behaviours are controlling me, my digging that is. I am reminded of the Capucin Crypt monks' Memento Mori in Rome: see here, too. They dug out the bones of their dead fellow monks and decorated a whole crypt and cellars with them! Bones on the walls. Bones as an altar. Monks out of bones and skull. Crosses out of bones. Looks really morbid, but great experience. Or go to the Parisian catacombs! Same thing but a bit more somber. Millions of bones and skills. It's like my monster speech. You don't have to run from them, just face them, go through a scary moment expecting certain death and they run away and you look like a fool for having run away for years.

I always close my eyes, and look down. If you have the sound on, you would probably hear. lots of fillers like ehhhh.

Again, I am closing my eyes but not looking down. I have to say that my body language with hands is still pretty good! ;-)

I am most shocked about this picture. I don't really show symptoms as such, but I look very on the edge. Note the red patch on my neck. That's blood ready to burst out at any moment. My God, isn't that a recipe for a stroke at a more advanced age?  This reminds me of a shocking comment of someone close to me: Sometimes you are in near hysteria when stuttering.

To all of those who would not dare doing what I just did and claim to have recovered, are you really? Is stuttering not taking the front seat in your life?

Crackpot Award for StutteringInnovations

The Stuttering Brain awards the team of StutteringInnovations , especially the founder Michael Mills, for the outrageous and completely unproven claim that:

Stuttering is now defined as a 'panic attack' over speech that starts in early childhood. Stuttering does not respond well to fluency training because the person already knows how to be fluent.

Here are a few questions for our brainy crackpots:

• Who defined stuttering like this? And based on which arguments?
  
• How does genetics fit in here?
  
• What about brain imaging work showing differences in young kids and adults?
• So singing and choral reading does not trigger a panic attack?
  

Conspiracy theorist and stuttering

Here is an interesting quote on conspiracy theorists that Ora has sent me. Might this apply for some theories on stuttering, too?

Conspiracy theorists typically argue indirectly. They don't pit the merits of their theory against the merits of competing theories. Instead they try to erode confidence in some "official story" to the point where it seems arbitrarily incredible, whereupon their conspiracy theory is supposed to stand as the "default" conclusion when the official story fails. The conspiracists never put the conspiracy theory "default" to the test to see whether it too make sense.

In other words, they never test their tests. The myths that were tested on the program are the basis for the conspiracy theory "rules" that purport to distinguish genuine photographs from fake ones. But before relying upon them, the conspiracy theorists never put them to the test. Their suppositions about shadow direction are wrong. Their supposition about fill lighting is wrong. In the real world, where there is no "default" conclusion and where both hypotheses are tested equally rigorously, the conspiracists' conclusions simply don't hold. They appear to hold only because the conspiracist authors manipulate the discussion to avoid a meaningful test.

Looming Deadlines Antwerp and ECSF

I have submitted a seminar proposal for the EU SYMPOSIUM FLUENCY DISORDERS 2010 at Lessius College Antwerp on April 23rd and 24th. More information here. The conference has a decent level and mixing science with clinical stuff. The key speakers reflect this good mix. I like to hear what Dennis Drayna has to say. He has been saying the same things for years now. I hope to hear some new stuff. What genes? And what are those genes doing? Come on: society pays you a lot of money! Inviting one of the key speakers was definitely a bad move; presentation-wise (very boring) and politically unwise (disliked or feared by many, he seems to quarrel with everyone).

If you are from overseas, consider Luxembourg on your road trip. Not too far by car!

I want to talk about a framework NDC2 I have been developing to incorporate the multi-causal and multi-dimensional nature of stuttering. I am applying NDC2 to give a possible explanation for natural recovery in child.

If you are interested in a specialization course on fluency disorders. Here are more details. Again Kurt Eggers is coordinating.

Call for application ECSF-specialization course 2010-2011:
Registration for the 2010-2011 course is open and applications are taken chronologically.
More information here.

Guest Lectures at de Montfort University

I am back from London from attending the Downing Street reception on the invitation of Sarah Brown, wife of prime minister Gordon Brown, for the British Stammering Association. I also had business meetings, and met up with a friend who is a reader at London School of Economic.

On Wednesday I got the train to Leicester to give two guest lectures related to stuttering: one on evidence based practise, and the other one of the framework I am developing for stuttering. Dave Rowley is a lecturer there and was head of department. Many staff members were there, and only a handful of students, even though he organized the talks for theem! I was stuttering rather severely. More than at the BSA conference when giving the talks in front of more people, and in general. Maybe I am more scared of academics than stutterers? God knows, and if he doesn't even exist as Richard Dawkins suggests, I am in trouble. The return train ride was 60 pounds. Trains are ridiculously expensive in England, a good example that blind privatization can lead to disasters, but I am getting my expenses paid, in some years probably.

Dave gave me a brief sightseeing tour. The most striking of the ancient English city of Leicester is the many non-English faces. There are many Pakistanis living there, and shockingly many with strict head covers.

I showed Dave how my framework gives a possible explanation for natural recovery in children who stutter. I am currently preparing a submission proposal for the Antwerp conference next year (see link in the right border) to present the framework.

An interesting evening in London

I just came back from a reception from a place I am not allowed to talk about. Or so I was told as it is a private occassion. Kind of unfair because the host herself has a twitter site! Had a few good chats with old and new friends about stuttering. Being re-assured by an important therapist that quantitative research is important to her, too. Had a good look at the interior of the building. Nice painting of Queeen Liz 16th century. Probably never be there again in my whole life. Went to a room I was not supposed to be in after some mind twisting. But that I can definitely not talk about! Frightening how the imagined center of power is nowhere really. Chatted to Magareth Thatcher's former cook / chef / caterer reliving her past. Luckily she stutters, too. Apparently good old Maggie was funny and flirtatious (but not to her of course). Admired the new portrait but not courageous enough to use a big black pen for a nice mustache. She looks at you from all sides. Kind of saying: "Have you paid your poll tax?" Tried to google her nice ex-chef, who is well-known as I was told but I never heard of her, and I can only find sites to "Gordon Ramsey's business is stuttering!" Witnessed members of the charity fighting like animals just to have their picture taken with a door. Now how sad it that? I'll probably post one of me, too. Just to make sure you know I was there. The smiley girl got the police officer with her on the picture. Heard a good honest speech with quite a few blocks. Yes now you know who it feels to stutter. Will you twitter about it? And a very impressive performance from someone who stuttered as a child or so he said. No wonder he became a minister. Hopefully not to close to power not to survive? Using UK diplomatic slang, stuttering is getting some well-needed traction finally. Sorry stammering that is, and no-one knows why it's called stammering. That's British culture. Distinctively stylish and full of contradictions.

Trial as of Nov2009

Jerry Maguire, chief investigator of the Pagoclone trial, was on StutterTalk.com. As I speculated, most patients from the Phase IIb trial have completed the trial period. In two months' time, all will have completed. So that would take us to the end of the year. I forgot the fact of the data being locked and the blinds only being removed once all results are in. That definitely makes sense. In a double blind trial, neither the patient nor the reseacher know which pills are placebo, i.e. a sugar pill, and which contain the to-be-tested compound. So they do not know more internally than we do. However, from the outcome measurements, they can already take averages across all participants (from high dosis to no dosis placebo). You should be able to look at the time evolution. I would predict that the outcome went positive after the first testing and then slowly declined.

Jerry expects the results in late winter. That sounds reasonable. However, do not expect a serious debate at that moment, because they will mostly likely only release a statement but not a scientific paper or the raw data (unless there is a FDA requirement to do so). Jerry also announced that the Phase IIa has now been accepted for scientific publication. The publication has taken far too long for a serious debate. Who cares about these results now? :-( The Phase IIa are presumably better controlled for loopholes and a bigger sample. The publication process in medicine is really a scandal. They should start doing pre-prints like in physics.

TEVA, an Israeli company, owns the destiny to Pagoclone, and it will be up to them to decide whether to go for an expensive Phase III trial. So what happens if Phase IIb is successful? Jerry talks about there being a Phase III before the FDA accepts Pagoclone as a stuttering medication. However, I guess you can probably get it off-label. Especially because the side effect seems to be very moderate. Peter and Eric asked about clinical significance. At what point is Pagoclone successful? 30% decrease? Or more? That's a good question. 30% is a lot for severe stutterers, but for someone who just stutters occassionally and fears such situations things won't change much!

I was struck by Jerry's subtle change of takt. He was more sober than usual about the prospects of Pagoclone. My feeling is that Pagoclone is not going to be the cure that some are looking for. Might even be a mirrage. Sorry. Jerry keeps on saying that it should be combined with psychotherapy. I agree, but only if Pagoclone is shown to have some efficacy.

What I am most interested in is the placebo effect over the long-term. It is levelling off to zero. That would be good news for the reliability of such trials. If not, does placebo really reduces our stuttering long-term or is it the design and act of measuring that makes it look as if there is an improvement?

Plenty more news and a critical review coming on this blog!

Psychotherapies

On Wednesday, Thursday, and Friday, Gilles and myself have reviewed and discussed psychotherapy for our upcoming book The Meme in Psychology. It was a mind-opening experience (a form of psychotherapy I guess :-) in the sense that I was able to see the wide range of psychotherapy approaches, and I am now able to see what has been done to me in the various stuttering therapy!

Clearly, psychotherapy is in a state of chaos, conceptual fuzziness and deprivation of a unifying framework (which we will of course provide in our book! ;-). Every psychotherapy seems to have created its own universe, seeing disorders through their lenses and treating accordingly. However, I have to revise my view that they kind of do the same thing. In fact, every psychotherapy is acting on a different dynamic of our complexity for change. Have you heard of the elephant and the blind people? Everyone describing the elephant in a completely different way: long tube, big trunk, bushy snake, massive surface. Each psychotherapy makes the elephant move in a different way: show him a mouse, shout a command, make a loud noise, pull his tail, and so on. I would also argue that not all psychotherapy are useful for all disorders.

And here comes the biggest danger. I grant psychoanalysis that some psychological issues are due to deferred childhood trauma and associated unconscious influences. However, the big question is to decide which one is. Of course, you can take all disordered behaviours and experiences and construct a theory based on some childhood and unconscious influences. However, that does not mean that it is the right causal theory! And that also explains the wild and idiotic psychoanalytic interpretation of stuttering being some kind of repressed needs and so on. Some guy gets paid to explain everything psychoanalytically. Having said this, if as a person who stutter, you sit done and do psycho-analysis, I am sure you will develop as a person and you will understand yourself better. And you might be able to better cope with stuttering. The same is true for behavioural therapy which assumes that normal learning processes led to disordered behaviour or experiences. For example, the brain has learned to fear spiders, and so we need to use the same processes to unlearn the fear. A not-very-bright and badly-informed person can come up with the theory that stuttering is all learned, which is clearly not the fact. However, this does not mean that some secondary stuttering is not receptive to behavioural techniques. In fact desensitization, unlearning secondary symptoms, and more do work for a committed hard-working patient.

And here is the critical issue. There is a big big big difference between the theory underlying a psychotherapy and the associated treatment techniques. As I said several times before, a technique might help but the theory used might be wrong or incomplete. So I would say that all psychotherapies can help for some people in some situations, and even if it is just for personal development. Of course, some will help more and more on the speech fluency side because they are closer to the causes of stuttering. However, don't talk to me about them giving a good theory of why people stutter in the first place. They don't. The practioners mostly create a theory based on their approach's focus on humans.

Winning poem

Here is the winner of the poem contest with a very intellectual twist:

Tiger, Tiger, so good with a putter
is it true you used to stutter

And the second winner is:

Stutter with love!
Pause comfortably!
then Move on with elan!

Disco Fever

Here is my performance at the District Toastmaster Conference. That's for the European title. The conference was held at a posh hotel just off the infamous Reeperbahn red-light district in Hamburg.


And here is the division contest, the level below, speech where I won.

Back from Hamburg

I am back from Hamburg from the District Conference of Toastmasters held in a chic hotel just off the most notorious streets in Europe, the Davidstrasse, the Herbertstrasse, and Reeperbahn. I did not make it into the Top 3, but my speech went well. Speaking in front of 200 people, it was a good feeling. I was not scared at all; I am starting to suspect some pathology on my part! Exhibitionism? Narcissism? Mania? Actually I enjoyed my speech and had the audience with lots of laughter. The ending was a bit messed up, as my second last line got such a response that the contest chair thought my speech was finished and came up to the podium! So my last line was a bit of a anti-climax. Many including myself had me in the Top3. Everyone agreed that two speeches were a bit better: one had the best content, and the other was perfect in delivery. I was just behind. But, I guess the ending issue got me... The judges are a bit picky on technicalities. In any case, it was an excellent experience to make it to the final stage and compete for the European Speaker. I was not far away and definitely I now know that I can speak and capture an audience of 200 people. There are video recordings. So I might post them, and face the verdict.