Sunday, September 13, 2015

How does Lidcombe work? No as they thought it would!

Lidcombe is apparently the miracle treatment for young stuttering children. A recent study by Franken et al. showed that another treatment based on Demands & Capacity theory is equally effective than Lidcombe, a behavioural therapy.

Many times I have said that I am not convinced that Lidcombe treatment is more effective than natural recovery, but they do claim that for a short-term control group the treatment group does much better. And I currently argue: yes that is true but only for those that would have recovered any way AND the therapists and kids know that they are being treated AND the kids know what is expected of them.

Of course, if Lidcombe claims to be a miracle treatment, I expect that they tell me what causes the miracle. And here, I say: they will not find anything. Many outcome studies of psychotherapies have shown that anything can work and that the key success factor is the patient-therapist interaction.

I often criticize the Australian but they did the right trial to look into it. An article on An investigation of the role of parental request for self-correction of stuttering in the Lidcombe Program. by Donaghy, Harrison, O'Brian, Menzies, Onslow, Packman, and Jones gives the answer I expected: nothing.
METHOD: Thirty-four parent-child dyads were randomized to two treatment groups. The control group received standard Lidcombe Program and the experimental group received Lidcombe Program without instruction to parents to use the verbal contingency request for self-correction. Treatment responsiveness was measured as time to 50% stuttering severity reduction. 
RESULT: No differences were found between groups on primary outcome measures of the number of weeks and clinic visits to 50% reduction in stuttering severity. 
CONCLUSION: This clinical experiment challenges the assumption that the verbal contingency request for self-correction contributes to treatment efficacy. Results suggest the need for further research to explore this issue.
So what really drives the treatment outcome?

And the same question goes to the Demands & Capacity treatment.

Friday, September 11, 2015

Amino acid supplementation seems to have worked for one reader


I get many emails from readers telling me about significant changes in fluency. One of them is John and he agreed to share his story with us. Read below about his search for an explanation to his sudden fluency. He would be happy to discuss via email: john@1123interactive.com 

Like a lot of people who stutter, as I am told, I frequently experience issues with low mood. On about my 15th effort to find a solution for this, I started supplementing with various amino acids to target various neurotransmitters, specifically the ones known to cause mood issues (e.g. serotonin, beta endorphins, dopamine, etc.). Quite unexpectedly, after using these supplements, I noticed a marked drop in stuttering, on the order of about 90% most days (some days 100%). I found myself being able to have conversations with people where I was talking a solid 20-30 minutes without a single stutter. Even the people around me remark that "it" is just "gone". I have stuttered for over 30 years, and this had never happened, especially for this long (I have sustained these effects for about 15 months now). I have tried on my own, as a hacky citizen-scientist, to try and piece together what I have observed. What I *think* is happening is some sort of synergistic process between boosting both dopamine and beta-endorphin. Ironically, this sort of flies in the face with what I understand about he current pharmaceutical approaches to stuttering treatment, that is, trying to cut down on available dopamine. What is amazing about amino acid supplementation is that, at least for me, there are zero side-effects. My mood is a ton better and my speech is a ton better. Of course, it could just be that, that my speech is better because I feel better, but I do see a definite increase in stuttering when I stop taking the aminos, even before I notice a drop in mood. What I would love to be able to do is be able to study this further. I would love to be able to work to understand what I have found, if I am just an anomaly, or if this sort of therapy holds promise for others as well.

Wednesday, September 09, 2015

What drives treatment success according to Heather Grossman



Ora send me his report of a presentation he attended by Heather Grossman, the director of AIS (American Institute for Stuttering) in New York.

I overall agree with this assessment.

Stuttering linked to rhythm perception deficiency

McAuley and Soo-Eun Chang has conducted a study that got reported as "Stuttering may be more than a speech problem. For the first time, researchers have found that children who stutter have difficulty perceiving a beat in music-like rhythms, which could account for their halting speech patterns."

I am a bit sceptical, but research by Webster has already shown that they are worse in certain dual tasking. We need more research and also on adults. And I would not be surprised of the stuttering and non-stuttering kids still show overlap in ability. But I am not convinced zebra finches will help "McAuley also works ... to investigate rhythm perceptions in zebra finches to probe the neurobiological source of stuttering." They are missing the cognitive level.

New DNA bank



Deryk Beal (University of Alberta’s Institute for Stuttering Treatment and Research) has started a DNA bank with people who stutter, see this article:

"The idea that stuttering runs in families has been around for more than 50 years, says lead researcher Dr. Deryk Beal, the institute’s executive director. Some research has suggested male children of women who stutter tend to be at highest risk for developing the disorder. And males are much more likely to stutter than females. Yet few large-scale studies have examined the underlying genetics of the disorder. Beal explains that the long-term goal of his project is to combine the participants’ genetic data from the DNA bank with neuroimaging to understand how their genes contribute to their brain development. Once they’re able to understand the root causes of stuttering, researchers can start looking for molecular pathways that are involved in brain development, which eventually may lead to better treatment. Currently, stuttering is treated with speech therapy, which involves training an individual to use skills that promote fluid speech, and by addressing the social and emotional effects of living with the disorder. There is no cure." If you are in the region, please considering donating your spit! :-)

Monday, August 24, 2015

Rehan Nasir from "Hello I stutter" visited me in Luxembourg

Rehan Nasir from the Hello I stutter blog visited me in Luxembourg last year... sorry I am a bit with my posts! ;-) We had a good discussion, a summary of which you can read in this post, and here is his email and story.

Tom,

I wanted to sincerely thank you for meeting up with me in Luxembourg last week. I really enjoyed the tour of your city as well.

I thought a lot about what you told me -- getting out of my comfort zone, breaking the associations that I've had for so long, and testing out theories with regards to speaking (as in, what's going to happen? I don't know -- but I won't die). So thank you very much for that insight. I will definitely write more about them on the blog, helloistutter.com
I wanted to finally send along a guest post (send some of your readers my way!) -- it actually does deal with a lot of what you said. Although it happened weeks ago (I've been slowly coming out for months now). I think you'd be proud of my determination.

Here goes:

I'm someone who stutters, and I'm someone who also likes to ride my road bicycle. But when I came to Saudi Arabia more than three years ago for work, I didn't know anybody who also rode. And since I was a covert stutterer, I didn't really ask around too much either. I would occasionally go on solo rides on the wide open roads we have in our small town, but I missed the camradarie of riding with even one other person.

SLTs that stutter


Oli writes:
I am an SLT student and a person who stutters. I run a website with details of SLTs/SLPs who stutter (here) to encourage others who stutter to consider it as a career. I noticed that, in a recent post, you mention a speech therapist who stutters and wondered if you knew of any others. Perhaps you would consider posting a link on your blog or asking your readers if they know of any.

Friday, August 21, 2015

Can you travel to Knoxville? Calling on all pws, cws, and children who have recovered!

Can you help Tiffani?
Calling all people who stutter, children who stutter, and children who have recovered from stuttering! My name is Tiffani Kittilstved, I am a person who stutters and a PhD student researching stuttering at the University of Tennessee in Knoxville, TN. 
For one of my PhD projects, I am recruiting local adults and children who stutter as well as children who have recovered from stuttering. Our general age group for kids is 7-12 but we are somewhat flexible in those ages (younger and older may be accepted, decisions will be made case by case). The purpose of my research is to better understand speech processes and how they are affected by stuttering. We use EEG technology, it is non-invasive and completely safe. The experiment involves sitting in a sound proof booth for about 1 hour and listening to tones/speech and discriminating whether the speech/tones that you heard are the same or different. It is a very simple task. The participant will be hooked up to an EEG machine via a cap that has electrodes built into it. This will record brain activation/deactivation in specific regions and allow us to understand what happens in the brains of children who stutter during speech perception tasks and how that differs from children who have recovered from stuttering. 
Participating in this research project will involve compensation and only cost you a couple hours of your time. So if you, or someone you know stutters (an adult or child) or has recovered from stuttering (child) and is in/will be in the Knoxville, TN area, for at least 2 hours, please contact me! My contact info is tkittils@uthsc.edu. Thank you!!!! 
Best, Tiffani Kittilstved

Tuesday, August 18, 2015

Test Mindool

Here is an example of an embedded Mindool into a blog post. Please click on list or procon to get one example.

Monday, August 10, 2015

Suvery on Multilingualism: Need input from SLTs

Graduate student Kimberly Martins writes:
As a Speech-Language Pathologist, you are invited to participate in an online survey research project collecting information on clinical practice in the evaluation and treatment of multilingual people who stutter around the world. This is an opportunity for you to contribute your professional experience working with this important population within the past two years. Completing the survey should take about 15 minutes. The survey is anonymous. You do not need to complete this survey in one sitting. If you need to, you can stop working on the survey, even close your browser and turn off your computer. Then return to the survey at a convenient time by clicking on the Survey Name below in this invitation to resume where you left off and complete it when you have the time. I appreciate your willingness to participate. Feel free to share this invitation with colleagues. 

Click here: Stuttering and Multilingualism Survey


Sunday, August 02, 2015

The most important conclusions from the Franken study on early-childhood intervention


Here is my summary of the Franken study (see here and a StutterTalk interview) after a first reading. Add your comments if you disagree!


The two most important clinically relevant statements are
  1. If your child has been stuttering for six months, does not have any obvious speech and language development issues and is treated by a specialist, it has a three-in-four chance to fully recover within 18 months of treatment.
  2. It is not important whether your child receives direct (Lidcombe) or indirect (DCM) treatment.

Wednesday, July 29, 2015

Breaking News: The Franken study is out with the result I expected - No long-term difference between Lidcombe and Demand & Capacity early childhood treatment!

Fig 1.  RESTART Trial Flow Diagram.

The Franken study is out. Agents told me about it several weeks ago! ;-)

It has by far the greatest sample size ever (200 kids!). They found no long-term difference between Lidcombe and Demand & Capacity early childhood treatment: here.

Anyone claiming that Lidcombe is the better treatment or the only one "scientifically" tested is "unscientific."

Friday, July 03, 2015

IFA conference starts tomorrow! I do podcasts, talks, and book selling!


I am leaving today for the IFA conference in Lisbon, the capital of the Southern European country of Portugal. A great way to meet people from around the world: clinicians, scientists, and people who stutter.

In cooperation with StutterTalk and the conference organizers, I will be recording podcasts from the conference, together with Chris Constantino. We will do daily wrap-ups but also conduct interviews with individuals. Peter Reitzes will do the editing work and put them on StutterTalk. I already did a trial podcast interview with Jelena on Stuttering Treatment in Serbia.

My interviewees include the main organizers Kirsten and Hilda, Nan Rantner (on early childhood intervention), Per Alm (on the causes of the moment of stuttering), Paul Brocklehurst (on the impact of long-term meditation on stuttering), and more.

I will also give two talks: Obstacles in measuring outcome of early childhood intervention (check out the Mindool on possible obstacles - you can add and like ideas!) and A novel biopsychosocial model catering for the complexity of stuttering.


The second talk (of which you can find an older version here) is closely related to my just published book on an improved version of the biopsychosocial model (more on my website BPS2.0, and in a published review article with Gilles Michaux entitled How the tower of information leads to an integrated framework for biopsychosocial ideas, see here.)

I will also bring copies of my new book to the conference. Here is a little teaser of the front and back cover!


So I hope to meet some of you at the conference!

Thursday, May 07, 2015

#SaveYourPatience for Stuttering Awareness

Martin Sommer, neurologist and scientist from Goettingen, wrote to me:
I would like to inform you that we are launching a campaign #SaveYourPatience with English texts on youtube videos, therefore accessible to an English-speaking audience. 
You can find them here
The aim is to promote awareness for a specific need of people who stutter, using a novel publicity approach. You can help us a lot by sharing the youtube videos as much as you can. There are five videos that will be launched sequentially from May 1 to May 5, 2015. 
Best regards, and thanks for your enthusiasm and for keeping your blog always updated, 
Martin Sommer for the German Stuttering Association (Bundesvereinigung Stottern & Selbsthilfe) 

Join me to the IFA congress held in Portugal in July!


I will be at the IFA congress at the beginning of July in Lisbon in Portugal.

I will give two presentations, one on my biopsychosocial model and one on obstacles to measure treatment efficacy in early-childhood intervention.

I will also do interview and discussion rounds for Peter Reitzes' StutterTalk with attending scientists and clinicians. I plan to call them Hard Talk in the spirit of BBC's Hard Talk!

I hope to meet you in Lisbon!

And if you are from overseas and plan to add a European tour to your Congress attendance, visit me and Jelena in Luxembourg! We have a spare room...

To finish off, here's a picture of Lisboa.


Tuesday, April 14, 2015

Marie-Claude's nouveau livre sur le bégaiement


Marie-Claude Monfrais-Pfauwadel a écrit un livre sur le bégaiement entitulé surprise surprise "Begaiement, Bégaiements" chez De Boeck-Solal. Elle dit dans un courriel:
C'est un gros bébé qui m'a demandé un certain temps de gestation ! Mais ce n'est pas fini. Avec l'éditeur nous mettons en place une plateforme numérique dite NOTO à laquelle tout lecteur du livre aura accès grâce à un code personnel dans chaque ouvrage. Cette plateforme contiendra la version numérique du livre, mais aussi des chapitres augmentés, des vidéos, des cours, des articles des tutoriels que je vais poster au fur et à mesure. vous serez avertis de toute nouvelle publication par ma propre page Facebook Begaiement, Bégaiements et vous voyez s'afficher au dessous une nouvelle adresse mail dédiée à mon courrier professionnel Enfin je mets en place chez DeBoeck une nouvelle collection (Fluences et disfluences) de petits livres monographiques de 100-150 pages dédiés à l'un ou l'autres des aspects des bégaiements et de sa prise en charge...... Si le coeur vous en dit, je serai ravie de vous éditer dans cette grande maison qu'est DeBoeck qui est distribuée dans toute la francophonie. Et donnez de vos nouvelles ! cela me fera toujours très plaisir. Bien à vous tous Marie-Claude Monfrais-Pfauwadel Pour les courriers professionnels, merci dorénavant d'utiliser l'adresse mail suivante begaiement.begaiements@gmail.com

Sunday, April 12, 2015

Dave Rowley died but our memories have not!

I heard that Dave Rowley died. I have known him for several years, and we met many times at conferences. He once invited me to Leicester to give a lecture on stuttering at his department and encouraged me to present at Oxford until Elsevier took over the reign and prevented him from offering me the reduced fee. He even asked me if I would help him organise the conference in the early days when his assistant dropped out, but his usual indirectness prevented me from only realizing it later! He was always a great fan of my blog, a regular and secret informant about the dodgy underground movements of the stuttering community, and liked to discuss stuff with me. I guess also because his calm personality could not make him say what I said but what he believed too! My condolences go to his family and those close to him!

Please leave your memories on Dave in the Comments Section.

Here is also Norbert's article:

Dave Rowley
A gorgeous spring day in London.
But there are news that turn the brightest day to dust.
Dave Rowley has suffered a heart attack. It was so severe that he did not survive.
Some of you may not know who Dave is. Only a few years ago, Dave retired as a Senior Lecturer at De Montfort University, after many years of teaching speech and language therapists their trade.
He has always had an interest in stammering which led him to a close collaboration with Lena Rustin, one of the founders of the Michael Palin Centre. They looked at the situation of stammering therapy from the two points of the clinician and the researcher – and decided to do something about this.
The result was the Oxford Dysfluency Conference (ODC), one of the biggest, and most important international Conferences about stammering anywhere in the world. It is only held once every three years, and last year he and Sharon Millard organised the 10th Conference, as inspiring as ever.
The Conference is also held in a warm atmosphere, calm, in quiet seclusion at St Catherine’s in the Thames meadows, away from the bustle of Central Oxford. It’s a restful place, with beautiful architecture. To me, the Conference has always been a reflection of Dave’s character.
I’ve had a number of quiet talks with him in Oxford last summer – all my talks with Dave would be quiet, and calm. He was relaxed, at peace, not easily unsettled. In the middle of any Conference crisis, he would be the calm centre.
He’s found happiness in Croatia and has uprooted himself and was building a new home there, a future snatched from him and from Suzana, and from all his friends.
There will be many appreciations of Dave, of his life and his achievements, in the days to come. But on this sunny Spring day, my thoughts are with Suzana and with his family. And I’m sad I won’t be able to take him up on his invitation to visit him in Samobor.
Norbert Lieckfeldt
12 April 2015

Friday, March 20, 2015

Censorship at the British Stammering Association Facebook page

Wow, I have just witnessed censorship on the British Stammering Association Facebook page. I saw this post and suddenly it was gone.

Interestingly, on another occasion some time ago, Norbert Liekfeldt has blocked me as a Facebook friend for my Facebook posts. Norbert has a problem accepting other people's views if they clash with his own ideology. Especially when they are politically incorrect according to him, which is not ideal for a neutral manager.

As you know, I am for full transparency and open debate. That's why I will post the screenshot here. Things need to be discussed (even if politically not correct) not suppressed! This has been a major disease of the last decade in the UK.



Wednesday, March 18, 2015

A very important question to Onslow and Packman

Onslow and Packman write in a response to the controversy of Lidcombe becoming the state-sanctioned treatment of choice:
"Indeed, if such evidence emerges for the efficacy of another treatment for early stuttering, we would encourage Speech Pathology Australia to approach the Australian government to consider it also for taxpayer-assisted support."
Here is the key question to them:

The Franken study has shown that there is no difference in efficacy between Lidcombe and a second treatment approach Demands And Capacities. So I ask:

As Lidcombe is effective (according to you) and the Franken study shows a similar efficacy for Demands & Capacities, does that constitute enough evidence to use Demands & Capacities in Australia too?

Deborah Theodoros has been misinformed about the efficacy of Lidcombe

The Australian Speech and Language Association's president Deborah Theodoros seems to be badly misinformed about the efficacy of Lidcombe as she wrote in her statement on Graig Coleman's concern about making Lidcombe the treatment of choice in Australia:
"early stuttering intervention at a level which is demonstrated to be highly efficacious and supported by the strongest level of evidence."
As I understand she is not an expert in stuttering so someone must have whispered in her ear and she refused, so far, to lend her other ear to an opposing opinion. Her statement is completely overblown. (check also my first response to the debate)

Let's deconstruct her statement: "demonstrated to be highly efficacious:"

This is simply not the case if you look at the long-term data and if you know, like me, the many cases clinicians tell me about where it did not work. Even Onslow, Packman, et al's recognize that
At the time of this follow-up, the children were aged 7-12 years, with a mean of 5 years post-randomization in the 2005 trial. Twenty of the 29 children in the treatment arm and eight of the 25 children in the control (no treatment) arm were able to be contacted. Of the children in the treatment group, one (5%) failed to complete treatment and 19 had completed treatment successfully and had zero or near-zero frequency of stuttering. 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. Meaningful comparison with the control group was not possible because an insufficient number of control children were located and some of them received treatment after completing the trial.
To conclude, the treatment was not "highly efficacious" at all, especially if you compare it to the natural recovery rate of 70%-80%. And due to the small number of 29 children, the statistics are bad. And there was no control group to control for natural recovery, so you cannot actually judge the relative performance to a non-treated group.

The statement "supported by the strongest level of evidence." is, as you can see, completely overblown.

Deborah Theodoros should seek independent counsel on this matter to counter the notion that her statement and her association projects a certain carelessness regarding dissenting opinion. She cannot just hear the arguments of those that have worked hard to create and establish, and then also measure the treatment; a clear conflict of interest. All in good intention but nevertheless Lidcombe is neither "highly efficacious" nor supported by "the strongest level of evidence."

Friday, March 13, 2015

Lidcombe the only effective treatment in Australia?


US cultural imperialism, this time for good reasons, has struck Australia. The Australian government and speech and language association has plans to make Lidcombe the unique treatment option available for clinicians to treat stuttering kids, because it is the most studied and has been proven effective. As we all know, this campaign is very likely led by Prof Onslow and his people. He is very much Mr Stuttering in Australia, and sucks up most of the research funding and probably sits on the research council board to decide on other people's funding. He was also so kind to send me a nice letter from his university's lawyer a few years ago, and was very eager to have a few nice chats with the director of a Dutch researcher who wanted to compare Lidcombe with another treatment option - an episode that she has still not spoken publicly about. I wonder what would happen if she were to write an open-ed in a main Australian newspaper about this episode?

So as you see, we again need the Americans to police the world! Soft power of course. Australia deserves an opinion that opposes the opinion of the lords of the lands down under. A petition by Craig Coleman does exactly this:
Recently, Speech Pathology Australia (the national speech-language pathology association of Australia) submitted a proposal to the Australian Government Department of Treasury that would require Medicare rebates be made available for children who stutter, but only if they are treated using the Lidcombe Program. 
The ramifications for this action are significant. As expected, many speech-language pathologists from the U.S. and abroad do not support this action for several reasons. First, this action gravely limits the scope of treatment for stuttering. Many interventions for preschool stuttering have shown to be effective (Millard, Nicholas, & Cook, 2008; Yaruss, Coleman, & Hammer, 2006; Franken, Kielstra-Van der Schalk, & Boelens, 2005).
So what is my opinion?

Tuesday, March 10, 2015

To those obsessed by p-values

I have always looked with horror at the near religious and blind application of p-values in hundreds of stuttering research papers.

Here is a blog post discussing p-values:
The journal Basic and Applied Social Psychology has come out with a ban on p-values. To be precise, they've banned the “null hypothesis significance testing procedure” from articles published in the journal. This ban means that authors in the journal can’t claim that an effect they see in their data is “statistically significant” in the usual way that we’re all accustomed to reading.

Thursday, January 29, 2015

Australian study screens baby's brains

Here is a report on an Australian research study which screens baby's brains. Those babies have stuttering siblings, which make them more likely to develop stuttering. How successful is this study going to be?

As always in Australia, Mark Onslow is involved. He was probably the person who worked hard to get the money and the people together, something he is good at. The outcome of his studies is not always so good unfortunately. First, the outcome study of Lidcombe early childhood intervention was problematic and a review a few years later was unable to locate all the kids who actually had taken part in the treatment. Second, there was a long-term study on stuttering on a large scale, but I haven't heard of the results at age 5, for example, even though the study should have those data. Long-term studies are always sensitive to many factors, e.g. people leaving, money running out, people using interests.