Mastering stuttering should master their thinking first.

Let us run through the introduction of Mastering Stuttering to see where they go wrong.

How is it that you can speak fluently in some contexts and not speak fluently in other contexts? That most People Who Stutter (PWS) can speak fluently in certain contexts indicates that they have two primary speaking strategies that they have learned: 1) They can speak fluently which means they know how to talk. 2) Given the right circumstances, they also have a speaking strategy for blocking.
What determines whether or not the PWS speaks freely and fluently or whether they block? We believe that it is the meaning that the PWS gives to the context of where they are speaking. If the context is non-threatening to them, the strategy for speaking freely and fluently will be activated and they will speak fluently. On-the-other-hand, if the context is threatening to the person, then the blocking strategy will be activated and the person will start blocking.

Certainly these factors are influencing how we speak but they do not determine our stuttering behaviours.

The cause: There could be several causes for blocking including genetic predispositions and/or developmental problems. However, our concern is not primarily about the first cause of blocking.

Cool graph

It is sooo true. If you have not enough information, the confusion is great. But if you have too much information, the confusion is as great. That's the challenge we face to communicate stuttering to everyone, but also to describe it to therapists. We cannot start talking about the details of genes or different fiber tracts within the brain.

Why support me?

It is important for us who stutter to have an independent voice in the debate on stuttering research, treatment, and politics. Someone who dares to speak out. And someone who knows what he talks about.

Here is what I do for us

• I am speaking out my mind or that of stutterers, scientists or therapists who do not dare to speak out for various reasons. I am often their voice.
• I am trying to change the nature of the debate. We need less obsession to a feel-good consensus but more constructive and productive debate to question held beliefs and move forward.
• I very often get emails from people or parents who stutter. They are asking for help and advice, or just want someone to talk to. I am often the first person they ever dare sharing their experiences. I always reply to them with advice.
  
• I am critically reviewing scientific research to a high professional standard. I have a wide range of relevant scientific expertise in areas of statistics, research design, neuroscience, and the ability to quickly get the essentials. I attended world-leading university like Imperial College London or Trinity College, University of Cambridge, and I keep in touch with my old university friends and colleagues. I am also in contact with many university professors in neuroscience.
  
• I debate different treatment approaches without having the bias of being the provider of a specific treatment. I am independent and show you the alternatives: the benefits and costs of a treatment.
• I keep an eye on our organizations that should help us, and highlight issues or weaknesses when important.
  
• I have excellent contacts in the stuttering community, and many are supporting my work. Some secretly! ;-) So I know what is going on before others do.
• I function as an information gateway between many involved parties, because I am independent and not a rival to a researcher or therapist. So they are more likely to share information with me.

Blogging is my hobby, but very time consuming with no expenses covered. I often go to conferences and have to pay for my transport and accommodation.If you like what I do, I would welcome a donation. Money donated to my blog is money donated to improve the life of people who stutter! And it is a recognition for the work that I am doing. T----tthank you! ;-)

Why do kids starts stuttering?

Over the last days, I was faced with explaining how children start stuttering.

Here is what I would say. First, children start stuttering because the brain regions involved in speech are not working together well, which leads to delays in speech initiation, which is modulated by stress, neurotransmitter levels, general well-being and which may lead to learned secondary behaviours. There are two different reasons why these regions are not working well together: either because some or all of the regions or connections are developing abnormally slow (possibly due to genes or environmental factors unrelated to stuttering in adults) OR there are fundamental structural issues with one or more regions or connections between (due to genes or/and neurological damage due to environmental events like virus infections, head trauma, birth issues). Unfortunately, both causes lead to very similar dysfunctions, namely delays in speech initiation, and though it is currently not possible to distinguish between both and to predict which child will recover. Recovery is probably primarily due to an abnormally slow but eventual development

Radio interview and aftermath

A radio interview (here in Letzebuergesch after the news flash!) with me will appear on the morning news tomorrow on National radio with an audience of more than 150'000 people. I hope this interview will further raise awareness of stuttering, and dispel a few myths on stuttering. As explained here and here, a Tageblatt article based on interviews with our "national experts" accompanying my "non-expert" interview was catastrophically misinformed. Stuttering has its main cause in the psyche, stuttering can be imitated by kids, and so on. I had to react even though I avoid at all costs to be dragged into Luxembourg life and issues!! ;-) Unfortunately both key people were not man enough to ask for and make a clarification publicly. So I worked full-time for two days to get a press release by international experts and associations, and sent it to all press media and SLTs.

Myths, Beliefs and Straight Talk

Check out this great text on myths on stuttering compiled by Peter Reitzes and Greg Snyder. I hope they don't mind to see their work on my blog!

Myths, Beliefs and Straight Talk
I will outgrow my stuttering. Many teenagers and adults who stutter hope or believe that they will stop stuttering one day. Many deny that stuttering can be a problem or may even deny that their stuttering exists at all. Others may want stuttering to go away so much that they simply begin believing that it just might. For example, a 9th grade person who stutters was asked how he was going to manage his stuttering in college. The young man replied, “I won’t stutter in college.” This belief may be due to a couple of reasons, such as denial or hope.
Unfortunately, most people who recover from stuttering do so in early childhood. For example, most people start stuttering between 2-4 years of age, so if stuttering is going to go away by itself, it usually does so by 7 or 8 years of age. If you continue stuttering into your teenage years, you will most likely continue to stutter throughout adulthood. The good news is that there are many options and choices in managing stuttering productively. However, continuing to avoid dealing with stuttering due to denial or a hope or belief that it might simply “go away” tends to make our problems worse, not better.

IT skills of some SLTs and in self-help

Over the last hours, I am witnessing the extraordinary IT skills and understanding of some SLTs and some in self-help. I received an empty email with cc asr-speakeasy@... , and now I have tens of emails of SLTs asking to be removed from a mailing list that does not really exist except as the list of emails of someone.

The address is very likely an open relay, which means that it is a mailing list that is accessible to those who sent an email to the email address of the mailing list and this email is distributed to the members of the mailing list.

So someone by accident sent his or her mailing list as cc and now everyone replies and thereby sending it to everyone else. And everyone else thinking "I am on a mailing list" but they are not really.

My advise: IGNORE AND DO NOT REPLY.

I wonder how can they properly digest all the complicated statistics of outcome studies and scientific research if they do not even realize what is going on here?

And to all those who have received the email and did not reply. Congratulations! You have passed the test, and have potential!

[The email address has now been cancelled.]

Half a second to speech

A friend sent me this interesting article on speech:

The study found that it takes about half a second to transform something we think into something we say. And three very different kinds of processing needed for speech are all happening in a small part of the brain called Broca's area, which lies beneath the left temple.

I will talk about more this in future posts.

More gossip on Pagoclone trial

Here is more gossip on the Pagoclone trials: (Thanks to Holger.)

"I`m going in the open label phase in december, I also will keep you updated, but just to let you know, there are people that have gotten great results from what I was told. I have noticed zero for speech enhancement and side effects, there is a big chance I am on the placebo, I will know in december when they give me the real meds."

stutteringforum.com 21.10.2009

"Hi everybody, I have been involved in the clinical trail on Pacoclone for more that 6 months. Right now, I am on the last batch of the double-blinded phase. The first three batches of the pills which I took, had little or no effect on my speech. However, this last batch really have a positive effect on my speech. It seems like a miracle."

stutteringforum.com 21.10.2009

Press release published - Response by Jean-Marc Hild.

The press release has been published in the Luxembourg daily as a response to the factually incorrect statements on stuttering. That's very good news as this will set the record straight on the causes of stuttering and on treatment, and requires a clarification from Hermes and Hild.

I received a very constructive and genuine email from Jean-Marc Hild, Head of the Service Audiophonologique. He basically agreed with what I said in my interview and he also distanced himself from the article and the statements attributed to Georges Hermes on the causes of stuttering. He clearly said that he himself believes that stuttering has a physiological underlying cause. The press release has criticized the statement attributed to him that "using touching the knee or snip the fingers" should be part of the therapy. He explained that he feels treated unfairly because this statement has been taken out of context, as he explained and listed several treatment approaches to the journalist and only mentioned "using touching the knee or snip the fingers" as a useful tool (I do not share this view but it is debatable.) but not the essential part of the treatment which requires looking at the whole person.  The journalist only kept the knee and fingers. As you can imagine, he said that he learned the lesson of never giving a quick interview without checking the written article beforehand! His email and story sounds genuine. He also offered me to visit the institute, and said that he would be very interested in me collaborating with the institute to benefit from my expertise.

I have offered him to make his email public so that his side of the story can be heard.

PRESS RELEASE

This press release went out to all the Luxembourg media outlets, parent associations, and a few ministries to set the record straight on causes and treatment of stuttering after the misinformed interview of Hild and Hermes. It took me nearly two days to get everyone on board and to have a common press release text. Big thanks to Prof Ratner (for feedback and encouragement), the British Stammering Association (especially to Norbert Lieckfeldt for encouragement, the first draft and feedback), Prof Neuman, Prof Euler, the German Stuttering Association (Beate Schwittay), the Swedish Association (Anita Blom), and last but not least ELSA (Edwin Farr).

PRESS RELEASE (original version) October 22nd, 2009

Response by international stuttering associations and world-leading university professors to statements made on the causes and treatment of stuttering attributed to Georges Hermes, Director of the Centre de Logopédie, and Jean Marc Hild, the Head of the Service Audiophonologique in Luxembourg.

Today is International Stuttering Awareness Day. Like most communication disabilities, stuttering is generally not well understood by the general public, and there are many myths and prejudices. 
We are surprised to read, in the Luxembourg Tageblatt on October 21st, reports of the views of the Director of the Centre de Logopédie, Georges Hermes, and the Head of the Service Audiophonologique, Jean Marc Hild, on the causes of stuttering, and what treatments are available. We feel compelled to reply, because these views, if reported correctly, are rather eccentric, and at odds with research findings of the last decade and more.

Tageblatt interview in English

I am still amazed at the power of blogging. A reader, Ora, was willing to translate my interview into English:

Conversation with the researcher and “Stuttering Expert” Dr. Tom Weidig in the Context of World Stuttering Day

Fanta Instead of Cola and Emails Instead of Telephone
By Luc Laboulle
From Luxembourg Tageblatt – Wednesday, 21 October 2009.
(Translated by Ora McCreary)

The unbelievable state of knowledge on stuttering in my home country

Today my interview with the Tageblatt, the Luxembourg daily, got published. They kindly allowed me to link to the pdf file: Tom's Tageblatt interview (in German). What a wonderful opportunity to inform everyone about stuttering and share our experiences and dispel a few myths about stuttering. Or so I thought! :-( And then the newspaper had the glorious (but very understandable) idea to ask the "experts" at the National Center for Speech and Language Therapy, the Centre de Logopédie. And here are the results of their interview: Interview of Hild and Hermes. Here is an English translation.

I am not questioning their motivation and I am sure they want the best for the patients. However. According to Georges Hermes, Director (!) of the Center, on the causes of stuttering: (unless he has been misquoted) (translation from German)

The causes of stuttering are diverse but nearly always to be found in the psyche of the person who stutters.

There are three causes: Stuttering as an expression of traumatic experiences or negative experiences over a long period are the most common cause for stuttering.

The learned stuttering, where kids imitate stutterers and cannot get out of this cycle anymore.

Stuttering due to developmental issues of speech and language found mostly in children of kindergarten age.

I cannot believe that the director of the national center seems to have out-dated ideas on stuttering. Unless he was misquoted. Where is the scientific evidence? Even wikipedia knows better!

Here is what the US National Association writes:

Free audio book for stuttering kids!

Check out the free audio book of Stuttering Stan Takes a Stand. He is teased and bullied about his stuttering, Stanley the squirrel refuses to let on that his feelings are being hurt, until one day he learns an important lesson from a new friend.

In the name of us all, thanks a lot for the efforts you are in!!! Written by Artie Knapp. Illustrations by Barbara Leonard Gibson. Read by Alessandro Cima.

Just a little note: maybe this could have read by a stutterer, too! Alessandro is a bit too fluent for me. ;-)

Interview with Tageblatt

I had an interview with the Luxembourg daily Tageblatt on stuttering and my blogging activities. A Tageblatt journalist, who attended the same winter camp for teenagers 20 years (!) ago, contacted me, because he is reading my blog sporadically. He wants to do a story for the World Stuttering Day! Great. I had already two interviews in Luxembourg newspapers: one on science, and one on my book on venture capital funds. And a radio interview on stuttering. There is nothing really happening in stuttering in Luxembourg. We have a stuttering association, but it's defunct right now. And I do not really have the time and energy to resurrect it.

A bit of cultural education. The Luxembourg newspapers are mainly in German, but there are also French and Luxembourgish articles. Lately we also have pure French newspapers which are mostly for the French speaking commuters. It is a bit of mess, really. It often depends on the journalist's preference to a language as to which language is used. But radio and TV is mainly in Luxembourgish. Though there is an English Ara city radio and a Portuguese Radio Latina. What's interesting about Luxembourg is that we strictly speaking do not really have press freedom. The biggest newspaper Luxemburger Wort is owned by the Catholic Chuch, the Tageblatt by the Trade Union, the Journal by the Liberal Democrats! But unlike in the US, the newspapers in Luxembourg are relatively neutral in their reporting and ideological fights between them is infinitesimally smaller than compared to the US: see Fox News vs liberal media. Everyone, newspaper and parties, are more or less on the same line and only differ in nuances: it's called the Luxembourg consensus. I used to be a part-time science journalist for the Luxemburger Wort, and wrote a few articles on black holes and the laws of nature.

Won humorous speech club contest!

Yesterday evening, I won the humorous speech contest of my Toastmasters Club! Five of 40 members participated in the contest. The humorous speech contest is the most difficult one psychologically speaking, because what if nobody laughs! :-) You need to be a hardened speaker! On Saturday I will compete in the Luxembourg area contest against 5 other participants (two each from the three clubs). Toastmasters is really a great and safe place to practise public speaking. I can only recommend it to everyone! It's the second time I participated and the second time that I won. Last time I went until Paris.

Again, my success shows that fluent speech is just one part of communication. Public Speaking is more. It's about writing a good speech that flows well, body language, stage presence, vocal variety, engaging your audience, pausing, humour and meaning. Some cynics might say that I only win, because I stutter. They have pity. Sure, I probably get a few extra points for my courage, but I am immediately loosing them again because of dysfluent speech.

A common fallacy trap

Time and time again, I see the following fallacy. Someone comes up with a theory of stuttering that fits their experience, and then they automatically believe that their interpretation of facts or theory must be right. Of course, that is fallacious. Why? Because there might be alternative theories that also fits all facts. So which theories is the correct one?

Here is an example. My 95-year old great aunt keeps on telling me that someone stole something from her, and I ask why. She says: Well I had placed my money here and now it is not there anymore. Therefore someone must have stolen the money, and she claims it is her neighbour. Her theory is completely logical, consistent, and fits all the facts. Indeed maybe her neighbour sneaked in to steal, after all the money is not there anymore, he could have jumped over the fence, and he is over-friendly offering her help! Very suspicious. The trouble is of course that there is an alternative theory, namely that at her advanced age of 95 she just simply put the money somewhere else and forgot about it! I told her clearly that while I completely accept her experiences are factual i.e. that she had money, that she cant find it anymore, that the neighbour is overfriendly, I do not share her interpretation of the facts and believe that it is more likely that she forgot about it. She agreed with me. And when I asked her whether she knew some old friend who forgot stuff. She agreed again with me. And then she says: But unfortunately it is not true in my case! ;-)

And the same is true for some theories on stuttering...

Stutter Talk on Ethics of Blogging

Have you listened to other people's conversation and it's about you they are talking! It happens to me once, at Indiana University in Bloomington, and they talked about me being anti-social: they complained that I was always in my room studying! What a sad life he has. And this one guy says: Dude, Tom stutters. I just don't understand why he cannot speak fluently! I just do it automatically! And this other guy says: Yeah, and A played chess with him and thought that he was drunk! At this point, I stopped listening for mental health reasons! ;-)

And now they are talking about me again but publicly! Check you Stutter Talk's post on the Ethics of Blogging. I am getting a velvet-gloves-iron-hits on some of my posts, namely The Crackpot Award of Sally Reed and The Resignation of ISA chairman Benny. A few civil comments:

A Pagoclone trial participant reports

I got an email from a participant of the Pagoclone trial. He is one of 300 that participated, and he suspects that he was in the treatment group and saw benefits at the higher dose. He started in April and is now moving to the open label phase, which means that the double blind is finished (as I suggested) and everyone gets Pagoclone openly to see the long-term impact. For long-term impact, you could argue that nobody cares about placebo or not: what works works - no matter how it works.

Here is his report:

I wanted to give you an update as to my experience with the pagoclone study. I've been on it since around April or so. At least I suspect that I have been on pagoclone for at least part of this time. I was initially given a dosage of two pills twice a day, which lasted for the first month and then went down to a dose of one pill twice a day. I do believe that I experienced a modest improvement in my fluency, somewhere around maybe 40% better fluency, and then after the dosage change I experienced a pretty dramatic drop in fluency to almost pre-study levels. At my last visit, three weeks ago, I was informed that I am transitioning from phase 1, double blind study, to phase 2, open label study, and should find myself on the placebo during this 8 week period to accurately transfer to the open label phase. When this occurred, whether real or as a result of being informed by the Dr. that I would be on the placebo, my stuttering increased dramatically and am now definitely at pre-study disfluency levels or worse.
So to sum up, I do believe that I have been on the medication for at least part of the study. I do believe that when I was taking the higher dose my fluency was MUCH better. I do believe that the lower doses and the placebo have had a dramatic effect on my speech to pre-study levels or worse.

Since April I have experienced zero side effects. No headaches, weight gain, sleeplessness, nothing. Of course, I don't have a clue as to what my blood work shows but am sure if there was a problem, then the clinic would have most likely informed me.
Overall, I have been happy with the results from the first part of the study and would definitely purchase this medication at the higher dosage level. At the lower level, if the price was cheap enough I would purchase the medication but it would have to be cheap as the rewards were minimal.

I hope this gives you some idea as to how the medication is working for at least one person.

Breakthrough: Stuttering Risk Factors

Finally some breakthrough research!! Swiss researchers, Ajdacic-Gross et al, have been able to link occurance of stuttering in Swiss conscripts to premature birth, probable attention deficit hyperactive disorder, alcohol abuse of the parents, obsessive-compulsive disorder in parents and relatives, having a disabled mother and having a parent from a foreign country. And I am not surprised that there are no overwhelmingly strong risk factor; all odds ratios are about 2 or below. They looked at a large database of 10'000 people, and probably had about 100 stutterers. And then they run a statistical test on the dataset to see whether stuttering is correlated to variables recorded or reported. Of course, there is always the danger

Jeff Blitz wins Emmy

Director and writer Jeff Blitz who stutters and included stuttering in Rock Scientist wins the Emmy. I know I am a bit late with the news. Finally, I have a claim for fame: I had breakfast with an Emmy winner: see here. And my second claim for fame is that I told an Emmy winner in an email last year that I am NOT a fan of The Office (he won the Emmy for his Office work! :-) I think that was our last email! Anyway, it is good to see that Jeff won the price. Congratulations!!!! He is a nice guy. He spoke at an NSA conference and I am sure he would be more than happy to help the stuttering community in any way possible.

A reader's email

I often get emails asking for advice. Many ask me about Pagoclone, and I write back that it will not be a cure but might help some to reduce stuttering and that other treatment should also be tried out in any case. But few are as powerful as the response of a 16-year old girl (with her permission):

Yeah, I tried a self-help group, attended a stuttering conference, and tried stuttering therapy countless times. I also got an iSpeak SpeechEasy device. I seemed to have stopped stuttering 6 months ago, and it was the greatest days of my life, but then suddenly it came back, and it came back HARD. I can hardly speak a single word without stuttering, and I've had to give up countless times in the middle of a sentence I realized I can't finish. I'm at the point where I would rather lose my voice permanently, so no one would expect me to talk, than to keep struggling and forcing myself to get through one single sentence, and the embarrassment that follows. I know I'm only 16 years old, but I have so much stress from life right now, and I so badly want to go to college and get my life-long dream job (a computer repair technician- talking is a MAJORLY important part of the job). Life isn't going to get better, its going to get worse, and there's going to be more stress. I know there's no cure. I've been told it countless times, and it

Pagoclone trial finished?

More than 6 months ago in March, I wrote about the six-month random control trial of Pagoclone. The trial is the biggest ever outcome study for any treatment in stuttering, with 300 subjects controlling for placebo. I have also reported that the 300 places were rapidly filled up. Recordings are taken periodly within a six-month observation period, but this might be extended. So make your calculations: most subjects should have just completed their 6-month recording and the rest will in the coming weeks. Internally, they should already have replicated their Phase II study, with a 3-month observation and less than 100 subjects. The larger sample (and presumably better measurement standards) should give us more solid findings of the short-term effect. I would expect that all the data will be in by the end of the year, and add 3 more months for additional analysis, meetings and admin. So we are somewhere around March 2010 for a press release.

I have added the synthesis of Pagoclone above for all those of you who can't wait to try it out! ;-)  And for those hoping for a cure solving all their problems, I suggest going for the standard illegal drugs, probably cocaine, ecstacy or cannabis for a good effect versus moderate side effects! Unfortunately, legal restrictions are preventing me from publishing the recipes...

Please those who are participating, let me know of your experience! Send an email to tom dot weidig to my gmail dot com.

Should we ignore stuttering?

Should we ignore stuttering in treatment? I wrote about this approach before when introducing the ROPANA method by Roland Pauli. Let me go in more details.

Stutterers have fluent and stuttered speech. Fluent speech is most frequent when alone, not-thinking-about-speaking, calm and relaxed, reading, and speaking slowly. The two main approaches have the following weaknesses in my view:

1) Fluency shaping: learning motor code that is not part of natural speech, learning the new motor code, and keep practising so not to loose the new motor code. There is a great deal of resistance to acquiring and maintaining a new motor code.

2) Dysfluency shaping (Stuttering modification): learning to modify the motor codes associated to stuttered speech which means teaching yourself to change behaviours while stuttering. Stuttering events are as we all know dramatic events where our control of ourselves are dramatically reduced. And in such circumstances we need to learn what we are doing and trying to change it.

Health Mash: a new search engine

Here is a new search engine, that might be useful for stuttering. (Thx to Dave for the tip.)

HealthMash

Add to your site

New RCT for stuttering children?

I found this webpage on a pilot study of random control trial for kids who study. The main responsible person seems to be Lucy Paterson from the Newcastle-upon-Tyne Hospitals NHS Foundation Trust. I have never heard of her even though I know most people involved in stuttering in the UK. Here is the abstract:

The aim of the study is to answer the question: Is a large-scale research study of the effectiveness of group speech and language therapy (SALT) for young people who stammer possible?

The study will look at the issues involved in setting up a large-scale investigation of treatment for young people who stammer. It will inform the investigators whether larger studies would be possible and give some early-stage information on the effectiveness of group SALT for these young people. The findings will pave the way for building and testing out treatment programmes where there will be clear positive benefit for young people who stammer and their families.

To answer the research question, the study will tell the investigators (a) how easy/difficult it was to get people to take part, (b) young people and parents'/carers' views on taking part and (c) whether the assessments were able to pick up changes in speech and attitudes towards stammering reported by the young people and their carers.

ROPANA

I just read on the ISAD conference that someone was referring to techniques in golf coaching to change stuttering behaviours. I am not sure whether I have discussed the German treatment approach ROPANA by Roland Pauli on my blog. I had many Skype discussions with him, because I gave him feedback on his book project and I did ROPANA at the same time. Here is my view...

ROPANA is unique in my view in that it does not focus on stuttering at all. There are two main strands in treatment. First, fluency shaping teaches a new way of speaking, a more fluent way of speaking. So you are learning motor code that you use to smoothen your speech (gentle onset for example, and connecting your words) or put more rythm in your speech. Second, dysfluency shaping (I like to call it this way but it is known under stuttering modification) works on stuttered speech itself. You do not try to avoid stuttering, and you are working dilligently on trimming your stuttering. I like to picture this as the wild bush in your garden, you are trimming it, cutting it down as much as possible. The idea is simple: you might stutter but you don't have to stutter with tensions, with fillers, with secondary symptoms. And the end, ideally you just have easy blocks.

English translation of PEVOS article

WOW, the blogosphere has learned to translate. Here is the English translation of the German PEVOS article. This should give non-German speakers an idea of what has been done in Germany regarding outcome studies. (Thanks to Norbert, no guarantee for accuracy, copyright to the authors).

PEVOS pilot phase evaluated

PEVOS: Programme for the Evaluation of Stammering Therapies

Authors: Anke Alpermann, Ulrich Natke, Horst M. Oertle, Julia Pape-Neumann & Peter Schneider

The aim of PEVOS is to apply scientific methods to gain data about the effectiveness of stammering therapies that are offered in Germany.

Attentive readers of the Kieselstein may have been asking themselves ‘what ever happened with PEVOS’? With this report we are trying to give you an answer.

The BVSS (German Stammering Association) is constantly asked by many enquirers about ‘good stammering therapies’. For many years, there have been controversial debates about which criteria should be used to evaluate stammering therapies. This has led to very different research methods resulting in the fact that it is almost impossible to compare different therapy approaches. Making meaningful statements about the effectiveness of a specific approach thus is rather difficult.

PEVOS: finally!

Finally, finally, finally. We (or at least I) have been waiting for years for PEVOS to complete their pilot study. And I have blogged here and here. As usual completely ignored by the English speaking world as is the large outcome study of the Kassel Stuttering Therapy with a sample size of 100s and long-term data.

What is PEVOS about? PEVOS looks at the outcome of different therapy approaches to see which ones are working. They have now published the pilot study data nearly 10 years later! See the PEVOS article in the German stuttering magazine Kieselstein. (Thanks to Norbert for the tip.) If someone wants to translate the article or make a summary of the key findings, send the translation or summary to me and I will post it. I don't have the time to also play translator of German.

Shame on Sheila Johnson

You should have a look at this video and this article from my favourite "fair and balanced" US news channel, Fox News:

In the 32-second YouTube video, shown on MyFOXDC.com, Johnson, who supports Republican candidate Bob McDonnell, is seen telling a group of wealthy donors that Virginians needs a governor "who can really communicate, and Bob McDonnell can communicate."
Johnson then says, "The other people I talk to, especially his op-op-op-op-opponent,  di-di-did this all through my interview with him." Groans and muted laughter can then be heard from the group of wealthy donors.
"He could not articulate what needed to be done," Johnson continued. "So communication is hugely important."
Johnson is listed as a founding partner of BET in a biography on the Web site of Salamander Hospitality, where she now serves as CEO. Johnson and her former husband, Robert Johnson, sold the company to Viacom in 1999 prior to divorcing in 2002.

Sheila Johnson, the first black US billionaire, is making fun of a candidate, because he is apparently stuttering. Shame on you. As I said many times before, it still seems to be acceptable for some to make fun of people who stutter for their own pleasure. Let me tell you, Sheila, that the only people who are allowed to make fun of stutterers are people who stutter themselves! I think you should apologize to people who stutter, stop equating stuttering with inferior intellectual performance and actually get in touch with the stuttering associations and listen to what it is like to stuttering than you wouldn't make such stupid jokes that are not funny. And if you are as wealthy, you might consider donating, too!

(Thanks to a reader for sending me this link!)

Summary of Treatment Reviews

Sandra Merlo was so kind as to summarize two important papers on treatment outcome by Bothe et. al for us. I consider them both as important.

Anne Bothe et al. published two papers about stuttering treatment research in 2006. One of them is related to behavioral treatment and the other is about pharmacological treatment of stuttering. I will focus on the paper about behavioral treatment.


The authors use three methodological criteria to assess the quality of stuttering treatment research: repeated speech evaluations (before, during and after therapy); speech evaluations outside the clinical settings (to check how much PWS can transfer their fluency skills); and control of speech rate and speech naturalness.


The authors analyzed 162 papers published between 1970 and 2005 in peer-reviewed journals.


Positive results were considered as following: stuttering frequency was reduced to 5% or less after therapy; stuttering frequency was reduced by 50% or less after therapy; there was improvement in social, emotional, or cognitive variables after therapy. The improvements should be maintained by, at least, 6 months.


The authors concluded that the methodological quality of stuttering treatment research is low. Of the 162 papers, just 39 showed the three quality criteria. The behavioral treatments proposed by the 39 papers were classified as following: acupuncture, cognitive/emotional, EMG (electromyography), GILCU (gradual increase in length and complexity of utterance), indirect therapy, language training, masking, metronome, prolonged/smooth speech, regulated breathing, response contingencies, self-modeling, shadowing, Speech Easy, stuttering modification, and token economy.


The authors concluded that, up to this moment, there are positive evidences to:
- EMG: two studies showed quality methodological criteria. The approach improved speech fluency and also social, cognitive, and emotional variables after treatment and 6 months later. The method was tested with children from 6 to 12 years old.
- GILCU: two studies showed quality methodological criteria. The approach improved speech fluency after treatment and 6 months later. The method was tested with children from 6 to 12 years old.
- Prolonged/smooth speech: 13 studies showed quality methodological criteria. Seven of them showed improvement of speech fluency after treatment and 6 months later; two of them showed improvement of speech fluency and also social, cognitive, and emotional variables after treatment and 6 months later. The method was tested with people from 7 to 58 years old.
- Response contingencies: 11 studies showed quality methodological criteria. The method was tested with children until 12 years old.


The authors say that systematic reviews are important because they analyze scientific findings in order to do recommendations to clinical decisions. Thus it is important to be careful about the level of evidence that supports clinical procedures.

Support a French IFA 2012 bid

I have learned here that France might be putting forward a bid to hold the next IFA congress (possibly in Paris) in 2012. I think such a bid would be an excellent idea, and therefore I am strongly supporting such a bid, and I hope you will do the same. There is no doubt in my mind that the French stuttering community have isolated themselves for too long. One reason is surely the language barrier and the English-speaking domination, but other countries like Germany and Latin America have been much more open. Another obstacle has been that France is still in the firm hand of psychological and psychoanalytic approaches toward stuttering. Not to speak of there being more than one association, as far as I am aware of. A French bid would be an excellent opportunity for the French stuttering community to open up to the world, and become more actively involved!!

Alexandre from the Parole Begue blog writes: (rough translation of French text)

IFA president Willie Botterill has approached the two French participants in Rio, Olivier Humez et Véronique Aumont-Boucand, both APB members, to consider a French bid for the IFA congress in 2012 in Paris.

IFA wants the next congress to be in Europe, and attract a larger group of participants by choosing a city with good transport links. Our two French participants have accepted Willie Botterill's proposition to put in a bid, which makes us a front runner to organise the next congress.

I can picture myself hearing from the world experts directly and not just via Olivier's translation on his blog. It is a unique opportunity for France and French stutterers to hear different bells ring. The psychological focus on stuttering will give in to neurological studies and scientific research on stuttering conducted in the Anglo-Saxon countries. I can see Maguire presenting his Pagoclone at the point of going commercial. I can see France being at the centre of the world stuttering community. The congress could blow new wind into the treatment approaches currently on offer in France...

The congress offers a considerable opportunity to open ourselves up, an opportunity we cannot refuse. I wholeheartedly support such a project, and we should consider setting up a support committee for the bid.

Alors, bon courage et bon travail!

The faces of stuttering

My name is Ardi and I am from the 4.4 million year old Ardipithecus ramidus species. In our times, we all used to stutter, and nobody would care. So take it easy, modern human!

(For more information on myself and discovery, please read this Geographics article. And please make a statement. Send your picture to my great-great-great-....-great son Tom at tom dot weidig at gmail dot com! A picture and sentence on how you relate to stuttering!)

European Symposium Fluency Disorders 2010

The call for papers for the second European Symposium Fluency Disorders in Antwerp is out. The first conference was well organized in a nice city, and better and more focussed than some other stuttering conferences. Looking at the agenda of the 2010 conference, there are two very interesting key speakers, Dennis Drayna and Henny Bijleveld, one speaker could be interesting but I have never heard her speak, of the others I am not so much a fan of their work but will hear them anyway, and one is a rather boring presenter, and disliked for good reasons by many but that's life. I will probably attend the conference, and enter a paper and apply for a workshop based on the presentation I gave in London and Zagreb. So I hope to see you there on April 23th and 24th 2010!

[Call for donation: If you want to support my work and help towards covering my conference expenses, please consider a donation. Hit Donate button in right border! Thank you!]

ISAD conference 2009

The ISAD conference is online again: check here. I didn't see many interesting articles on science. You can ask questions to a range of experts. The best thing about the conference is that you can leave questions and make comments. Thanks to Judith Kuster for her efforts!