Leys against Google

Leys keeps on trying to convince google to change their policy on allowing advertisement on stuttering cure. It seems like ASHA is a bit timid speaking out and writing to Google, which seems to me unreasonable giving for example that their UK counterpart, Royal College of Speech & Language Therapists, has been far more courageous and decisive. Google seems to suggest that individual complains are more appropriate: see the letter by Leys.

A big issue is a lack of standards in reporting treatment success. For example, such standards exist in finance.

Tom, I thought you might be interested in another update on this story.

As I mentioned, John Bercow, the UK Member of Parliament who has just reviewed and reported very constructively to the Government on the state of speech services for children, has written to Google UK and received a reply from Matt Brittin, Country Director, UK. Mr Brittin’s main point was that if people don’t like these stammering cure ads on Google they should complain about them using the special form available on the Google website. John has asked for our views on his letter and we have responded as below. I’m sure John would be happy for you to publish as much of it as you might want.

You asked about ASHA, and I’m glad to say that we have now heard from them, and they are very supportive of the campaign. However they do not want to confront Google at the moment, so we have asked them to consider how they might lend their weight to this campaign.

Whilst, in our view, ethical standards may be low in several sectors of US advertising, that does not mean that similar standards should be allowed to apply to stuttering. Thus, whilst ’buyer beware’ may be an appropriate maxim for some US products, it’s not suitable for stuttering treatments. It’s worth remembering, too, that we are not just talking here about ads which are aimed at Americans, who are accustomed to advertising puffery, but ads which are aimed at the whole world - in which very few people think and behave like Americans.

We are sure that ASHA will agree that there is a need to tighten up standards, set its expert and well qualified members apart from the fraudsters and encourage a more professional attitude to stuttering treatments. And, in the longer term, of course, this Google issue is just one stop on the way to the greater objective, which is to rid the world of fraudsters. So this is a very good team to be on!

LEYS GEDDES

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Why look at stuttered speech?

I agree with Greg that studying stuttered speech is more or less time wasted! See here. It is a good example of what happens when people use quantitative tools without having any scientific common sense or vision. And I say it again, if you don't have a hard science background, do not work on quant stuff, you will fail. I would have tolerated such research decades ago, but not any more...

I mean just imagine we were to study the content of children pornography to find out what causes paedophilia. Yes, you can find a lot of "interesting" and intriguing patterns: what age, how many, what, who does what, and so on. But at the end of the day, it is sexual drive gone to the extreme crossing moral boundaries and hurting others, and crystallizing into behaviour depending on the environment, opportunity of the individual and culture...

Think of the drive as the water flowing and the forms into which water flows and freezes as the environment. Surely, studying the forms is not telling you anything about where the water came from?

Stuttering should not stop you trying

I often get emails from readers asking for advice, and asking whether they are able to do X Y. The rule is very simple: Just try it out. Here is another one (I have made it anonymous, but decided to publish so others are inspired), and please let my reader know what your thoughts are. And I am pretty confident that at least here you agree with my comments!!

> Hi, I've got an admission as a PhD student, but because of my stuttering problem, I don't know whether I can be successful or not.

First congratulations. Second, complete non-sense! I know many who did PhDs and are still stuttering. Actually, it is easier doing a PhD because you do research and write your thesis which does not require you talking. So what is the alternative to not doing a PhD? WHATEVER you do in life you have to face stuttering? So you might as well do the stuff you want to do!!

> I've really been hoping to become a competent scientist for whole my life.

Great. that is the single most important factor to become a good research student.

> I'm sure that you can give me very essential advice to me because you've overcome your stuttering problem and got a PhD. When I found your blog, I think you are a role model to me.

No, I have not overcome it. But I had to make a similar decision, and went to England to study and later get a PhD. I always told myself: Tom you will do it what ever happens. Stuttering will NOT HOLD ME BACK FROM TRYING! And very importantly: I WILL ALWAYS TRY AND GIVE ME BEST: IF I SUCCEED; GREAT: IF I FAIL, AT LEAST I TRIED! Do you want to spend the rest of your life regretting not having tried it?

> I think that fluency was essentially required for you to get your PhD degree.

Actually, I know few stuff where you do not need to speak a lot. In fact, speaking while doing a PhD is a tiny part of your work.

> Maybe you had to give a presentation fluently, or you might take an oral test to pass the qualified exam.

No, I have stuttered during presentation, but EVERYONE was very helpful. Instead it was easier in a sense, because they were understanding because of our handicap.

> And I think fluent speaking ability is really needed for you to do a job as a consultant well. How have you been dealing with all those situations in which you need to speak well and fluently?

As a consultant, fluency is more important. But you just need to keep moving and say: OK, maybe I am not fluent, but do you want to have a fluent clueless semi-expert or a stuttering expert? Stop thinking about it. Think about how to cross that bridge when you get there not now! You haven't even started your PhD...

> Moreover, whenever I try to speak in English, I can feel that my mouth is more frequently blocked. I guess that you've got through a similar problem. Would you mind if I ask you about how to deal with the problem too?

I just did it. I just took the challenge.

>>> Or I think anything you say to me can be helpful for me. If you have anything to say to me, just let me know about them.

As I said, just do it and don't care about what will happen. Whatever you do, you have to go through it. Re treatments, you could join a local self-help group and attend a national stuttering conference to meet others. It is a great source of inspiration. And I would recommend that you send an email to your news supervisor or admission tutor, and explain him that you stutter and ask whether this will be a problem (and also tell me that you really really want to do this...). I am sure s/he will write back that they will do everything to help you. So be open about it, it will help you decrease the pressure because it is talked about and you will see that everyone (99%) will try to help you as much as possible. Good Luck! Tom

The field needs anonymous comments

Greg has questionned anonymous commenting on my blog. I say that the field of stuttering desperatedly needs anonymous commenting. Some angry minds are abusing this, but the benefits overweight the downside. If my blog were a physics or math blog, there would be no need to do so because debate and putting forward good counter arguments adds prestige and rarely damages your career.

I have often encountered reluctancy from clinicians and scientists to speak up and criticize other people's work. The comment section provides opportunity to do so in the safe way.

I agree that some people are attacking too harshly, and attacks on the person itself it not really acceptable. Maybe I should delete more comments like this that add no arguments per se. Of course, this involves more time spent on reviewing comments.... On the other hand, it is good to know what some people think even if it is bad, so we get a better representation of reality.

Some of you might have noticed that I had the comments moderated for some time. Someone wrote nasty comments about me, which were completely unacceptable and did not add to the topics in any way. But after sending 10s of comments over several weeks, he finally stopped wasting his time and I de-moderated the comments section again.

Responding to a reader's comment

From time to time, I have to respond to comments on my posts. And here is one of them:

From first hand knowledge I know that 1) the information that Dr. Drayna shares with us is not 2 - 3 years old. He is sharing current information, he just won't be telling us the full details of story (i.e. they have found some variants, but won't tell us what gene(s) they are in). True it can take a bit of time to conduct research and analyze data, and there are journals that have a very long lag time from when an article is accepted until when it comes out in print. I know that for the most part it takes on the order of a couple of months to get an article published (often depending on the quality of work and any additional work reviewers want to see).

I am just saying that this is what you can expect when you attend the conference. As a member of the audience, you will not really hear the latest stuff. It is not a criticism of Drayna as such but a reality of scientific research except in physics and mathematics where it is all open access before publication and you can have completely open intellectual debates.  In my experience, it is 2-3 years before we hear all the details, and only with all details can you really debate and challenge people. This is especially true in brain imaging which hampers debates a lot. Even reading my blog is sometimes talking to me in the past, because I often know of results before publications, but promised the researchers not to write anything before it is made public.

Second, Larry Molt has some interesting data regarding long term efficacy of SpeechEasy. There are many reasons why it takes time to publish research. Very often they (scientists, not just Molt) get interns to do some of the data coding and/or number crunching. It does happen that sometimes they make mistakes and those mistakes need to be fixed. His long term study that has taken several years and is still not published, actually does not give the SpeechEasy the best representation. (He presented his findings at ASHA Nov. 2008) One of the issues may also be the number of participants that dropped out over the course of 4 years. Participants do this for a number of reasons that do not reflect on the quality of the research.

Here is what I contest and it is up to Larry Molt to address these issues

• I sent him an email asking him about the latest status. He never replied.
• He has received money and so it is his responsibility to do efficient research and MAKE IT AS PUBLIC AS HE CAN.
  
• He is responsible for making sure that Speech Easy quotes him accurately on their website and includes his latest results. This has evidently not happened, which misleads potential customers.
• I do not buy the interns-making-mistakes. He is the supervisor and holds responsibility. Especially, because this is so high profile and high stakes research.
• If participants drop out, it is very often because they are not satisfied and should be treated as a failure unless clear evidence points to the contrary. And I have never said that this is an issue for me.
  
• How come all the other studies started after him but finished before him?
• I was not at ASHA. But if he did present findinds, then why are they not made public in a press release? They did one when he got funding!!!! And why is it not on his website?? And why does Speech Easy not have his latest on their website? He should force them to do that or they should not mention his name.
  

Are you saying I am not allowed to ask these questions? No-one else is asking them. And a final comment. I do not care about why troubles occur. I only care about the results.

Lastly, the manufacturer of SpeechEasy (Janus) recognizes that there has been a lot of heavily biased and hotly contented research published on the device. Janus now has a scientific research board that is beginning to fund better quality research to develop a better device. They seem to be doing their part to make the SpeechEasy better and also to produce more and better unbiased research of the device.

Wow. Don't you see what is going on. So first they make a big announcement about trying to support research into the product, big press release, put it on the website, and wait. This gives them about 4 years breathing space to sell as much as possible. Then when the slowl researcher finally comes up with results that are not too good, you do not put them on the website, and make no big noise. And you completely ignore the other studies that came out faster. So now they feel the pressure and say: We recognize that this is a hotly debated area, so lets create science board and develop better research. Again they save years in which they can make millions of dollars again. Wow, so now they seem to agree with me that the research they funded was not very good. Sounds awfully like the Neocons. If it doesnt fit my ideology, it is wrong and I need to do better research. Sounds awfully like the Iraq dossier. We now know: no weapons of mass destruction, even if there were, there never ever was a risk for US or Europe, millions displaced or died. But we all heard the years of denials.

And here is a message to the person(s) who have been hired by the Speech Easy maker for marketing. I know that you understand what I am writing but you keep on doing it because you earn money. Do you really want to do this? Do you not feel a moral responsibility?

I think there are some good things that you mention in your blog Tom, but from someone who has spent a number of years pursuing an education and career based on the etiology and treatment of stuttering, I feel like you consistently miss the mark in a number of places, and it frustrates me. I keep trying to like your blog. I really want to. I really want to give you the benefit of the doubt. I keep wanting to not disagree with at least one thing in every post I've read. But I can't. I apologize. I really don't like to be critical in this way, but I couldn't sleep...

Why don't you want to be critical? What is wrong with all of you? It is a debate, it is not a bonding and networking session. You suffer from consensus-obsessive-disorder whose tentacles often confuse the functioning of our brains. If you disagree, then just write a comment. No need to apologize. I am not writing my blog because I want to become popular. I write it because I want to put out arguments and challenge opinions that are not well argued.

I often see this attitude: Oh Tom has a PhD in physics but I work in the field. He tries hard but he just doesn't get it. Have you ever thought that you might not have gotten it? Several times, people have come to me and say: Tom your blog is interesting but you often miss the mark. And I start a debate and ask them so what exactly do you not agree with. And in every single case, they end up with saying something like "fair enough", because they realise that it was them you did not consider all aspects and realise that my argument is valid. I do admit that I do make factual mistakes sometimes, or put things more black and white than they are but I do this in order to have clear arguments.

Is TheStutteringBrain or StutterTalk not reputable?

If you are interested in research and a member of the National Stuttering Association (you don't even have to be a member, I guess), they have an interesting research symposium at their annual meeting in July: see the details.


 NSA’s Research Symposium for our Membership, Thursday, July 9, 2009 (10:00am – 12:30), Westin Kierland Resort & Spa, Scottsdale, Arizona.  The NSA is excited to announce that in response to our members’ request for more information regarding research about stuttering, we have expanded our annual conference to include an annual NSA Research Symposium, at no additional cost to our members. The focus of this session will be to get scientific information on the treatment of stuttering directly to our membership, not from the internet or other less reputable sources.


I sincerely hope that the NSA is not implying that all information on the Internet, especially blogs and podcasts, are not reputable. I beg to differ, and NSA should remove this sentence. StutterTalk and Judy Kuster for example do a very good job. In fact, we are more reputable in the sense that we have far far fewer conflict of interests as you will soon see.

To show how we add value. Here are a few issues you should be aware of, and you might even want to ask them questions about in case you attend.

1) Do not let yourself be blinded by someone writing that they have invited one of the nation's leading experts. Who decides who is the leading expert and who decides who is an expert? If we were to name those clinicians as experts who have a high sucess rate in turning us into fluent people, the number of experts would be very low indeed. In fact, the McGuire program is probably not less effective, but no-one would call the instructors as experts, right? Why not? You need to be especially carefull with clinicians. It is difficult to judge the quality of research, and good networking, presentational, political and lobbying skills carry you a very long way.

2) Denis Drayna is in my view the leading geneticist in stuttering (and as far as I know the only full-time geneticist working on the topic with a research team) and the only real professional scientist on the panel. But he has little to say about treatment of stuttering and I am sure he would admit this readily. I tend to believe that he is on purpose not trying to delve too deep, because he works within the paradigm: give me a disorder, I run the genetics algorithm, and lets see what genetics tells me. In fact, the only thing he would say is that genetics will not help us at all in treating stuttering. Or, he starts spinning (I guess on his research grant applications!), and you might hear him say that one day we have the possibility of gene therapy, and if we know which genes are responsible we know what causes stuttering. Maybe in 20 years. You also need to be aware that he is not telling you all he knows. His goal is most likely (and so would mine be if I were him) to find the stuttering genes, and get famous with a Science or Nature article. So he cannot talk about new research before the article is public, and that often takes many months if not years. So when he talks to you, it's like stepping into a time machine and talking to him 2-3 years ago. But you can catch the occasional glimpse into his mind on my blog: see this piece of news made public by Greg who Denis Drayna had to inform by law. So if you attend the talk, it's the news from 2-3 years ago!

3) Jerry Maguire is the most active and influental player in pharmaceutical treatments, but note that his biography includes "As a matter of disclosure, Dr. Maguire receives research grants, consulting fees and/or honoraria paid to his university from Indevus, Teva, Eli Lilly and Bristol-Myers Squibb." Moreover, his biggest source of income is his practice where he and a colleague prescribes medication for treating stuttering and relating conditions receiving patients from all over the US, and from telemedecine consultancy where he has patients via the net but the medication is prescribed by local doctors registered in that state. He is also heavily involved in the Pagoclone trials. So he has a unique experience, but there are plenty of conflict of interests. Because of all his involvements, he cannot be seen as an independent reviewer of the field. Like Drayna, talking to Jerry is also a bit like stepping into a time machine, because again he cannot divulge the current state of research. And, it is also worth mentioning that he is a medical doctor and lecturer first, and a researcher second. [see a clarification by Jerry Maguire below]

4) Walt Manning. I was sitting next to him at a dinner, but I cannot really say much about him. He seems mostly to be a clinician who also does research.

5) Larry Molt. I am not sure what to think: He has given SpeechEasy a cover for their close-to-fraudulent marketing campaign, unintentionatilly or not. He holds a heavy responsibility, because he has accepted money from the SpeechEasy company and after 4 years has not published any outcome study (as far as I know). In fact, I can only find one unrelated paper where he is a co-author. Moreover, he has not forced Janus Development to update their outcome studies on their website. He has also not replied to an email I sent him some time ago, for more information. So if you are at the meeting, you need to ask him these questions: Why not published article? Is he happy with SpeechEasy mentioning him on the website without final outcome results? How much money did they give his research group? Has he any other connection with them? Does he agree that they use his name as a cover for very weak outcome literature?

6) Vivian Sisskin. I never met her before, and never heard of any research findings.


[from Jerry Maguire: For clarification for your blog, Tom. The industry payments from Teva and Indevus for our stuttering work are given directly to my University and are used to support our stuttering clinical and research programs. Also, the majority of my income comes from my role as the Senior Associate Dean of the medical school where Ioversee the educational program for our school. I receive relatively little income from clinical revenue for our stuttering program. My salary is supplemented by my endowed chair received through a philanthropic gift which supports my time to conduct our stuttering program. A significant percentage of our patients seen via tele medicine and in person do not pay for their visits. Those with the ability to pay or who have health insurance do receive billings, but for individuals without such coverage, we provide care at no cost. The support from Eli Lilly and Bristol Myers Squibb is also given to my University for my work in schizophrenia research and education and after percentages are removed to support our school, the remaining funds to go toward my salary. I was the one who voluntarily listed these as potential conflicts in a matter of disclosure so the stuttering community is aware.]

Normal interplay between both hemispheres

Martin Sommer has a new brain article out. He is well-known for the discovery of fibre deficiencies in the left hemisphere which was later confirmed more or less by others like Watkins and Soo-Eung. I met him several times in Goettingen where he lives and works, and at conferences. Our first meeting was in my car (it was raining, I remember) and then in a local car repair shop, because I unwisely put the wrong fuel into my car! He also stutters, and runs a self-help group. He works as a neurologist and does research. And don't mention trains, because he is a fanatic of!

I do not have access to the full paper yet, but it looks as if he could not find any evidence for abnormal interplay between the two hemispheres. I write more when I know more.

1: Mov Disord. 2009 Feb 17.

Normal interhemispheric inhibition in persistent developmental stuttering.

Sommer M, Knappmeyer K, Hunter EJ, von Gudenberg AW, Neef N, Paulus W.

Department of Clinical Neurophysiology, University of Göttingen, Göttingen, Germany.

Imaging studies suggest a right hemispheric (pre)motor overactivity in patients with persistent developmental stuttering (PDS). The interhemispheric inhibition (IHI) studied with transcranial magnetic stimulation is an established measure of the interplay between right and left motor areas. We assessed IHI in 15 young male adults with PDS and 15 age-matched fluent-speaking subjects. We additionally studied the ipsilateral silent period (iSP) duration. We found no significant between-group difference for IHI or for iSP duration. We conclude that the interplay between the primary motor cortices is normal in patients with PDS. The abnormal right motor and premotor activity observed in functional imaging studies on PDS are not likely to reflect altered primary motor cortex excitability, but are likely to have a different origin. (c) 2009 Movement Disorder Society.

24/7 Speech monitor?

I want to discuss Jerry Maguire's idea of a 24/7 speech monitor to evaluate speech.

Why?
We need to objectively measure the change in stuttering due to a treatment in order to evaluate the treatment. For this purpose, we can ask the stutterer himself or people close to him, but that is not objective. It might be useful for dramatic changes. So we need to record them and analyse the speech using an independent person.
But here we have big big big big big problems that lead to apparent success:

• If you know that you are better recorded, you are on your best behaviour and of course try to use speech techniques learned. 
• You are recorded once every so many weeks or months, which is 0.001% of all your speaking time. You have good and bad days and fluctuate a lot. 
• Coming back to a clinical environment makes you more fluent because you have associated fluent speech with this environment. 
• You might be good in reading but not on phone calls. So you need to be recorded across a variety of situations.
  

Virtually all outcome studies have these weaknesses, and that is one of the the reasons why so many therapies claim good results, even though you never quite meet all those people and if you meet them, they are not that much cured.

What to do about it?
One possibility is secret recording, e.g. phone them up under a false pretence. I know of a concrete example of this happening after the official recording, and suddenly the treatment was less successful. So whenever you see a treatment result divide it by 2!!!! I am not joking.

Another way is, as Jerry suggested, to give us a speech rate monitor, like a heart rate monitor, which we would carry along 24/7 and which would measure our fluency. Let me analyse his idea.

The Pros:
We cover all speaking situations over a long period. So instead of 0.001% we record all, and we record across a range of different situations. You can argue that it is a secret recording but in a fake sense. They know about it but they tend to forget.


The Cons or Obstacles:

• You still know that you are better monitored and this will help you be more fluent. You might forget after a while but not for long.
  
• Someone needs to sit down 24/7, listen to your beautiful speech, and count all stuttering incidents! Wow. I do not want to be the person who does this. It is unrealistic, so you would need to take random sample, but then you might miss this one big stuttering event. Unlike heart rate monitors, there is no automatic recording and analysis. It needs to be done by hand.
• Not sure all speaking situations should be recorded. Maybe bedroom and bathroom should be excluded! ;-)
• Resources intensive: imagine you have a trial of 100 patients and assume it takes one week to analyse 6 months of day per patient for one researcher, so you need 100 weeks to do it.
• Recording speech is very memory intensive.

My conclusion:
I guess you can do it with the necessary resources and clever use of random samples, but I am convinced you need to analyse by ear unlike heart monitors.

Change google policy: Leys

Leys sent me an email on his fight with google to have their policy changed:

Tom, you might have seen my post on STUTT-L, which was an update on progress so far.  Here is a further update. The background to this campaign can be seen at http://www.stammering.org/adverts.html

You may remember that, despite our objections, Google decided to carry on accepting ads which claim to cure or eliminate stammering/stuttering.  They defended their position by claiming that (i) none of the ads they carry not violates any applicable law, regulation or code of practice; and that, in their view, (ii) stammering/stuttering is not a sufficiently serious condition to warrant checks to be made (under their ‘Miracle Cure’ policy) on the veracity of advertisers’ claims.

But many of the stammering/stuttering ads they carry clearly violate the UK Code of Advertising Practice, which is why our Advertising Standards Authority are taking successful action against a number of advertisers; and stuttering is a serious and often life-changing condition - more serious, many might think, than psoriasis, which is one of the conditions included in Google’s Miracle Cure policy.

So I’m delighted to say that very recently, the Royal College of Speech & Language Therapists, the professional body in the UK, and John Bercow, the Member of Parliament who led our Government's recent review of speech and language services for children, have both written to Google asking them to change this policy.

In the States, Jane Fraser and the Board of the SFA have already agreed '100%' with the principle that there is no cure for stammering/stuttering and they are now thinking about the text of a possible letter to Google.  Arlene Pietranton at ASHA, who had not heard about this issue before, has promised to get back to us, after discussions with her colleagues, to indicate if they will take action.

We have also written to the European League of Stuttering Associations and the International Stuttering Association to ask for their support.

Interview with Jerry Maguire on Pagoclone

Check out Jerry Maguire's latest interview on StutterTalk: here .

Here is a quick summary of what he roughly said with [my comments]

• Phase IIb is starting up very soon in March with 30-40 centres around the US. [great news to see the first very serious study on medication to start]
• If you want to participate, contact him. [if you ever thought about trying medication, this is a unique opportunity and for free.]
• They will test different doses. [important to see whether it is doses dependent and what the threshold doses is where no more benefit is seen.]
• Phase II will be published in a peer-review journal in a few months. [finally with a too long delay for any real debate to have happened]
• Most importantly, they extend the double blind from 2 to 8 months. [great, so this is a must]
• Not everyone will benefit from Pagoclone. [Why? If stuttering is about dopamine level which Pagoclone indirectly changes, should not everyone benefit?]
• Group effect is misleading because some might benefit a lot and others don't. So only looking at average is  not very informative. [I completely agree, but the extremes might also be because a lot severe stutterers got a lot better or mild stutterers a bit better which is a big percentage in stuttering severity. I can go from very dysfluent to very fluent.]
• They check speech itself. Shorter blocks? Lower frequency? Is it correlated to doses? [This could be very interesting information]
• Decrease of social anxiety in Phase II is not surprising because Pagoclone was designed as anti-anxiety drug. [could most of fluency effect come from this? it might increase the level at which stuttering behaviours are triggered.]
• Pagoclone is nowhere available except in the US. [I guess it is because Indevus holds the patent. But if you know the chemical structure which is probably made explicit in the patent documents. You could in theory produce it.]
• Question: How many have discontinued use based on his clinical experience? Answer was not completely clear. 50% have not seen any effects, and others have stopped because effects were not outweighing costs. [No directly answered. Of all the patients that he treated, I am convinced more than 50% are not using medication any more. My guess is less than 20% of this patients are still on after 12 months.]
• Measuring should be 24/7 like a heart beat monitor. [An interesting concept. I will write a post about it]
• He guessed that at least a reduction of 20-30% of stuttering is needed for people to keep taking the medication. [That is interesting information which we can use to compute the benefit-cost relationship. So the costs of taking medication is at least 30% less stuttering.]
• Tolerance to medication is another issue. After some time, you either need higher and higher doses or it is not effective any more. Pagoclone has less issues. [This is a real issue. Maybe it works for eight months but then the effect goes away?]
• Questions: are other areas of the brain impacted by Pagoclone. With more less impact that others. [But still there will be impact to the whole brain. But if Pagoclone has less impact of the whole brain, why should it have big impact on stuttering? And if a subtle impact will improve fluency, could there not be other impacts on other areas? The only way someone would do this is because the benefits.]

Sensorimotor part of internal globus pallidus involved?

Not sure what to make out of this but it looks interesting. Maybe a reader with more expertise on neuroanatomy knows what this may mean.

1: J Neural Transm. 2009 Feb;116(2):167-9. Epub 2009 Jan 10. Links

Acquired stuttering after pallidal deep brain stimulation for dystonia.

Nebel A, Reese R, Deuschl G, Mehdorn HM, Volkmann J.

Department of Neurology, Christian-Albrechts-Universität Kiel, Schittenhelmstr. 10, 24105, Kiel, Germany.

We report two patients, in whom stuttering evolved as an adverse effect of pallidal deep brain stimulation for treating dystonia. Speech dysfluency was observed under conditions that optimally suppressed dystonic symptoms without inducing other extrinsic stimulation effects. This emphasizes a role of the sensorimotor part of the internal globus pallidus in regulating speech fluency.

PMID: 19137234 [PubMed - in process]

How good is Hollins?

I have said that the claims on their website are misleading: see the end paragraph of this post. They claim that 98% of HCRI program graduates say they would recommend this advanced stuttering therapy to others who stutter. 93% of clients attain normal levels of speech fluency by the end of our 12-day day program. And I said that these numbers are completely irrelevant, because you need to look at long-term data and record them secretly.

Adrian writes convincingly in support of my suspicion (apart from misspelling its as it's! :-) :

As a Hollins graduate, I'll simplify this argument. ... in my experience these techniques simply don't work very well. I attended the original three-week session and I kept up with all but two of my original group of ten after the course. I believe all but one of this group was considered fluent after the end of the course, yet all were stuttering at pre-course levels speaking with me on the phone a few weeks after we left the safety of the clinic. For me personally I was 100% fluent in the clinic following therapy, but I was still stuttering severely across the street at Hardee's ordering a cheeseburger.
Tom is correct to question these misleading success rates. It is very easy to produce fluent speech and have positive viewpoints immediately following therapy. It is another to have continued fluency in all situations after being away from the clinic for a length of time. Hollins has used these misleading statistics as the cornerstone of it's marketing and it's economic success for decades.
Adrian

Adrian, do you think you can provide more details of the people? Maybe we can publish something on my blog like: comments from x out of y people of Adrian's group on their fluency? There should be balance of reporting on Hollins / HRCI.

They walk on solid ground, we walk on ice.

My last post was about a third way of looking at treatments. Let me give some meat. Here is the story according to me:

1) Genes or incident cause the development of an unstable speech system that cannot cope with normal demands. 

2) At age 2-3, the brain has developed to such an extent (mostly likely associated to use of sentences with grammar) that normal demands on the speech demands starts to exceed the abnormally low capacity of the speech system depending on the momentary situation.

3) The excess demand provokes a jam in the speech system leading to a abnormally long delay in initiation.

4) This delay is abnormally long, and causes instinctive reactions.

5) The delay and reactions are joined by conditioned and learned behaviours in response to corrective actions which in turn can make jams more likely.

6) The majority recovers because either the capacity of the speech system becomes better or changes in behaviours lead to fluent speech. For example, the ones with mild deficient capacities might be able to recover.

7) The others keep on stuttering adding further and changing behaviours, also social and psychological.


And the treatment approach is the following: 

1) People who stutter can speak fluently whenever the demand is low, e.g. reading aloud when alone and relaxed despite the abnormally low capacity of their speech system.

2) Stuttering occurs either because of a too-high-for-their-low-capacity-system demand on the speech system or triggers from conditioned and learned behaviours. And very importantly, you cannot change the low capacity, it will stay forever. But it will vary according to day form in the same way as every of your performances, be it intellectual or sports, will naturally vary.

3) The only way that a person who stutters is fluent is when the demands on the low-capacity system is lower than the low capacity AND there are no triggers from conditioned and learned behaviours.

4) An example is reading when alone and relaxed. Demand is slow because you know what to say, you do not have stress that impacts motor control, you are calm, you make longer pauses due to little time pressure, you read slower due to a lack of fighting for speaking time. Triggers are not triggered because there is no fear, no group pressure, no time pressure, or any other situations that you are conditioned for.

5) The key in therapy is to enable people who stutter to put less demands on their low-capacity speech system and to unlearn trigger to conditioned and learned stuttering behaviour. All therapies act on either of the two to achieve a reducing in stuttering.

6) Fluency shaping creates a new way of speaking and therefore the triggers from normal speech are not present, and this new way puts less demands on speech. For example, a gentle onset delays the start of vocalization and hereby gives the speech system more time to be ready. Moreover, the speech rate is slower, again helping to decrease demand. And fluency shaping is probably recruiting other brain regions with normal capacity processing, because the speech is not automatic and a lot of prosody is used.

7) Stuttering modification works on the stuttering event to identify and modify it which effectively means unlearning all unnecessary learned secondary and primary symptoms which again help triggering stuttering events. And a lot of psychological work to unlearn triggers of stuttering behaviour and strategies like longer pauses.

8) What I suggested is that both fluency shaping and stuttering modifications are indirect methods, especially fluency shaping. And further, the key is to work directly on lowering the demands on speech system and unlearning triggers or/and learning antidotes. You ignore the stuttering events and you do not re-shape your speech. You use your normal speech that you use for reading alone, and create the conditions that you are able to do it in more demanding situations processing and trigger-wise.

9) Here are a few examples. To reduce demands: longer pauses (well for some like me, just pauses would already help), slower speech rate, think before you speak, reduce stress and anxiety that impacts speech performance.  To reduce triggers: do not fight stuttering actively, ignore stuttering, focusing on fluent speech, repeating a sentence that you stuttered until you can say it comfortably fluent, focusing on normal breathing and so on.  Everything I wrote down are natural things that a good speaker does any way, and we are able to do them. All fluent speakers get away with a lot, we don't. We need to reduce the demands on our speech system and we need to unlearn the stuttering behaviours. They walk on solid ground, we walk on ice.

10) Needless to say that this is about changing behaviours, and we all know that a behavioural therapy is difficult and relapse is likely. But what I suggested is that this approach is the most direct way to the goal. I am not saying fluency shaping or stuttering modification do not work, but from my framework they look a bit as not coming to the point. It might well be that these approaches are used because they are easier to implement than a direct method.

OK. That's it! And please don't make the comment: So Tom if you are right, then why don't you try it yourself! Rest assured, I have asked myself the same question! :-)

Do we need to work on stuttering?

There are two main behavioural treatment approaches: creating fluent speech and modifying stuttered speech. Creating fluent speech is mainly about fluency shaping where you create a new way of speaking that may include gentle onsets, rhythmic speaking and binding syllables, but you also can include treatments emphasising on coastal breathing which leads to fluent speech. Modifying stuttered speech, or what I call dysfluency shaping, is mainly known as van Ripper and post-block modification therapy. You work directly on your moments of stuttering, and you try to modify them. You identify them, you soften your tension, you reduce secondary symptoms associated, and so on. [And there are treatments with external help: pharmaceutical and auditory feedback devices. But no clear evidence for effectiveness.]

I am currently looking at a third alternative behavioural treatment. And the idea is simple. Every person who stutters has the potential to speak fluently, and the vast majority can for example read fluently when alone and in no stress. So the issue is not an inability to produce fluent speech, but an inability to produce fluent speech in realistic more demanding speaking situations where demand can be stress, emotions, formulating your thoughts, preparing what you want to say, uncertainty as to what to say, trigger to learned stuttering behaviours, applying social filters and so on. Therefore, an alternative would be to learn behaviours that allow you to be in a state that allows you to speak fluently. Simple tools are speaking at a slow rate, making longer pauses, staying relaxed in stressful situations, and so on. The advantage is that you do what comes natural to you. You not need to learn something unnatural and you do not need to remind your brain of stuttering when working on stuttering events. 

Don't believe in IPhone

IPhone is definitely a very cool device, but is it useful in stuttering treatment? The Hollins Center has a press release out: see here. They claim that they use the IPhone successfully to monitor speech targets. StutterTalk has an interview with Prof Webster: see here. They have asked very good questions (some from myself! :-) and Prof Webster did a good job in answering. 

I am convinced Hollins will drop or limit the use after a while even though I agree with them that in principle it is not a bad idea to get more objective feedback. I have seen the phenomena time and time again. Failing to get high tech working in real life. Here are the facts: it is very difficult to record in noisy environment unless you spend a lot of time to fine-tune to an environment, but you have to do it for all environments. And you have to hold up the IPhone to record, which is very artificial. So you need to work with microphones. And then the measurements. I am sure that is not very stable as well with significant error bars. The costs of using the technology far outweights the benefits. So at the end of the day, they might use it as a recording tool and listen to the recorded speech! Trust me: I always prefer low tech whenever possible. Why? Because I understand high tech! Every time I tell hyper excited people to stop using or developing high tech and go for low tech whenever possible, they do not listen. So I must let them waste their time, and every single time I ask them a few months later, they have stopped using it...

On the other hand, it is a brillant marketing campaign; attaching it to the icon of the day the IPhone. The press release is all over the internet and I am sure their web traffic will benefit for a long time. It is not about the device but about attracting attention to the center. I am also concerned by the statement they make on the main page.

98% of HCRI program graduates say they would recommend this advanced stuttering therapy to others who stutter. 93% of clients attain normal levels of speech fluency by the end of our 12-day day program.

Isn't it a bit misleading because the relevant measure is long-term success not the short-term? First, it is obvious that people would recommend a therapy. They are fluent and have seen the Hollins therapists working hard and honestly. Second, based on my own outcome research, I know of another fluency shaping therapy, the Kassel Stuttering Therapy, with similar numbers after 3 weeks. Virtually everyone was virtually fluent. Unfortunately they dramatically worsen after one year. And we should not forget that they knew that they were recorded, imagine how the results are if you are recorded secretly. So they should go for long-term measures. I am not saying the therapy is not helping. I am just saying that long-term is what they should talk about.

The dilemma of a stuttering parent

Every week I receive several emails from all over the world asking me all kinds of questions. The following email from a stuttering parent illustrates well the dilemma of what to do. I or we might disagree with claims of magic treatment for children and can live on happily, but as a parent you need to decide on the best course of action to take; even inaction is an action:

I have been stuttering since 4’ish. One of my biggest fears was the potential of genetically condemning my children to this disability. My brother’s daughter, now 15, is also a stutterer. I now have a 2 year old son, who is of course the cutest, smartest, and one of the best communicators... what else is a parent going to say!? But seriously, Reed has been speaking for more than a year and can communicate clearly and in full, thought provoking sentences. About a week ago he asked this simple question, “What are you doing?”, only this time he said, “What are youuuuuuuuu doing?”



Now, being a stutterer, my immediate reaction was definitely not my finest moment. I whipped around from whatever it was that I was doing with a look of sheer terror (I’m sure), and asked him if everything was ok. I asked him to ask me the question again, and he did, and he stuttered in the same manner. I asked him if he was having a problem saying “you”. At this point he recognized my concern and got defensive. I spoke to my wife shortly after and we agreed that we would not draw any more attention to it. I wish I could go back to the moment... oh well!



Anyway, I’ve been paying close attention to Reed’s speech since the incident and have not noticed this level of stuttering on any other word. It only seems to happen when he’s asking the same question, “What are you doing”!? Now, parental logic would say that my reaction caused this to continue. My stuttering logic tells me different. He’s started putting his hand over his mouth while the block is taking place. It even appears that he is frustrated by it?



My question is, should we try the “wait and see” theory that is the common response to this situation at his age? I also don’t want to jump the gun and draw any more attention to it (although the damage might be done).

A more sober view on Lidcombe

Articles from the Oxford Dysfluency Conference are now published on the website of the International Journal of Speech-Language Pathology: see here. Here is what Ann Packman, the driving force between the Lidcombe early intervention program together with Mark Onslow, writes on Lidcombe:

Interestingly, however, long-term follow up indicates that some children may start to stutter again many years after treatment with the Lidcombe Program has ended (Jones et al.,2008). This suggests that recovery is not necessarily complete or self-regulated after treatment with the Lidcombe Program.
From a behavioural perspective, it seems that stuttering is brought under environmental control during the treatment and remains so for some years. However, the treatment does not—cannot—remove the initial condition (the underlying neural deficit). Rather, the treatment promotes compensatory neural re-organization which we now know may not be permanent.

It is official, and I share her view (except that I question the strength of short-term effect due to the high natural recovery rate). Lidcombe is far from the perfect and permanent solution. In fact, Packman disagrees with Mark Onslow. I asked him at the conference at the open forum: How come all kids are recovering if there are neurological deficits. He said that it is well known that the brain of kids is plastic enough. Well your colleague seems to agree with me and disagree with you: the treatment does not—cannot—remove the initial condition (the underlying neural deficit). In fact, full recovery of kids in any disorder due to the high plasticity is a myth, a feel-good phrase. Sure, kids' brains are more plastic and can compensate but there are limits. Now if you add the very high natural recovery to this statement, the miracle resembles more a fata morgana.

So does any therapist on Lidcombe make it clear to parents that the treatment does not—cannot—remove the initial condition (the underlying neural deficit)? No! And that's a scandal. It does not of course prevent several of our "expert" therapists turned researchers to making unqualified statements and spreading the myth: Quantitative studies have shown it is an efficacious treatment for eliminating stuttering in children of 6 years and younger. (Rosemarie Hayhow). Research indicates that early intervention is highly successful at normalization of speech development and prevention of stuttering. (Kristin Chmela, Stuttering Foundation of America e-catalogue). Why do they make such statement? Because they have not actually read the original research word by word, and lack the statistical understanding or attitude. For example, I explained to Rosemarie Hayhow my concerns about the Lidcombe trial on statistics, and her shocking reply was that she is focusing more on the qualitative aspects. But yet she is making statements on the trials and thereby propagating myths.

Polygenetic mutation: the official letter

Greg at Stuttering.Me has scanned and published on-line the official letter he received from NIH: see letter. I have copied the most interesting paragraphs for your benefit:

...We've obtained some interesting findings.., and I'd like to ask if you'd be willing to participate in some additional research studies. We've identified variants in several related genes that we believe contribute to stuttering. You're one of the people with such a variant, and our current goal is to better understand how this can be related to stuttering.

To accomplish this, I'd like to invite individuals to come to the National Institute of Health (NIH) Clinical Center, at our expense, for a more detailed examination. We have no reason to believe you or any of our research participants have any medical condition or disorder. But, given our recent findings, we wish to have careful examinations done by specialists, to make sure we're not missing any subtle symptoms that could benefit from medical attention. Such examination would not involve any invasive procedure (other than another blood draw) and could be accomplished in less than a day.

Children's book on stuttering

One of my readers Lyla recommended Stuttering Stan Takes a Stand children's book to me: more info on the National Stuttering Association website and an interview with the author Artie Knapp. Reading or giving such books to stuttering kids is certainly a good way to take away some of the pain and embarrassment of stuttering. And please an appeal to all researchers, do not do any research on the efficacy. It is dead-end research. Everyone with a bit of common sense knows that such a book is great to get the message across that you are OK even if you stutter. However, you can write articles and reviews.

Am I as bad as Sheldon?

I came across the extremely funny comedy TV series The Big Bang Theory . I have to say that the scriptwriters are not too far away from portraying us theoretical physicists... I just hope I am not as bad as Sheldon! Or am I? :-(

Spontaneous recovery?

Can people who stutter recover spontaneously? Here are a few anonymous reports from STUTT-LIST.  

I personally know two people who recovered/overcame stuttering. One man ... spent most of his life with a stuttering problem but then worked though it himself. He felt that he accepted that he stuttered and then got on with is life never avoiding and became a VP for sales. He had very little speech therapy.

I have a family member ... who stuttered severely-markedly through grade and high school and through college. He never had therapy but 'became fed up with stuttering' so he decided to overcome it. His first job was selling stock over the phone. His comment was that 'it just went away one day' apparently due to his determined attitude, self-challenging demeanour and eventual perceptual shift as he no longer identifies himself as a stutterer. He never had speech therapy.

I encountered someone who claims to have ended a stuttering problem immediately following a neck adjustment by a chiropractor when he was 12 years old. ... He was about 30 at the time. His responses to the few questions I asked him about the circumstance of his recovery and the nature of the problem he had experienced seemed credible and so did his slightly incredulous demeanour as he related the experiences.

What I have heard are two versions: The first of people who stuttered as kids and teenagers and then gradually they recovered without any conscious intervention on their part. The second of people who stuttered into (early) adulthood and then suddenly decided to change and actively worked on their behaviour, and stuttering gradually reduced. Regarding recovery as a teenage, I tend to believe in spontaneous recovery and then the people associated an event happening around the same time as a cause of recovery. Regarding recovery as adult, I believe in the right moment at the right time where everything came together: ability to focus, attitude change, motivation to work on new behaviour, entry into a fluent phase of life, and so on.

Should I soul search?

A reader set me a challenge:

Because people read your blog...so your words have power. what do you think the author of the published paper would feel? Did you just call the research a piece of junk/useless research? If you were in the same position and spent valuable time. And someone calls your research dead-end research? And how does this post help with anything. Why not be more positive...instead of being negative (and the problem is still there and nothing is solved). My suggestion: try to be more positive and talk is cheap. Be a problem solver and offer realistic suggestions, instead of complain, complain, complain :)

Here is my response:

What do you think the author of the published paper would feel?

I cannot care what the author feels. This sounds hard but science and intellectual debate is not about caring about other people. It is about caring about arguments. I write what I have in mind. I only attack someone's arguments or works but not the person itself. He or she might be the nicest person on Earth, might have put in one year of work, or might have been ill-advised by the supervisor; if I don't agree, I don't agree and will say so clearly. I will also not resort to mystical allusion like "I did not fully understand your arguments. Would you mind explaining them again to me. I am confused because I thought that X" but "I do not agree because of X."

I know the author a bit, and I do respect him for what he told me privately, but I simply disagree with some of his statements or directions of research. He is free to disagree with me in the Comment section or a guest post.

Did you just call the research a piece of junk/useless research?
Not as forceful as you just have. I wrote it is dead-end research.

If you were in the same position and spent valuable time. And someone calls your research dead-end research? 
Again, it is utterly irrelevant how much time someone spent on something. I know what guy who spent 3 years on a complex computer simulation only to be proven wrong by a top expert in 5 minutes. It is though but it is science. My first reaction would be not be as you imagine. I would ask: What have I done wrong? Is it a dead-end? I would look at his or her arguments carefully, and see whether I really did a mistake. And then I would reply with counterarguments or agree that it is wrong or dead-end. Then I try to get back to that person and give counterarguments. Then either we agree to disagree, because I cannot really refute his arguments nor refute mine. Or I see that he or she is just making bogus arguments because of lack of understanding, intellectual overreach or an emotional and political motivation. Then I might go into political mode or ignore. But

Again I do not fight or see the person making the argument but I fight or see the arguments themselves! Here is how I visualize: I am commander of one army (my statement) and I have soldiers (the arguments) defending it. And someone else launching an attack. So I focus on his soldiers. Either one of us wins and the other gracefully surrenders his army (his statement), or we agree to disagree as no-one won.

My research is not part of me, so if you attack it or my ideas, I am still feeling OK! As a good scientist, you need to find this intellectual detachment from your emotions. In fact, I love being told that I am wrong because then I have learned something new!

And how does this post help with anything.
It is like the Emperor's clothes or the lack thereof! I am pointing out the obvious for me. And I am pointing out what many others tell me privately, but do not dare saying out of fear that the PC and consensus Gestapo knocks at their door. It helps to know what other people think of your research. Even if they are wrong, you can wrestle with their arguments, and you learned something. There is nothing worse for a researcher that being ignored after hard work or being smiled at with a superficial Well Done.

Also, I want to show people and especially students and therapists that it is OK to criticise other research findings. We need more debate in stuttering. And therefore I am moving the goal post of what is acceptable.

Why not be more positive...instead of being negative (and the problem is still there and nothing is solved).
Here is a counterexample. If I see cracks in a bridge or building, should I not report the cracks because I have no solution to getting rid of the cracks and I make the manager of the building feel bad about himself? If I see fraud or mismanagement happing, should I not whistle blow because I have no solution and hurt the feelings and jobs of those who work there? Of course, a solution would be great, but often there are no solutions, and the solution proposed is wrong, too!

This attitude is extremely dangerous in scientific research, because our minds get blinded by social considerations out for fear for the PC and consensus Gestapo. It is OK to point out weaknesses and be negative in research. Of course, doing therapy or organising a party is a whole different matter, where you need to work with other people and find common interests and goals.

My suggestion: try to be more positive and talk is cheap. Be a problem solver and offer realistic suggestions, instead of complain, complain, complain :)

You drive me completely insane! :-) You have not understand what science is about. Yes, in therapy or management or politics, it is all about problem solving and consensus building but not in science or intellectual debate, intellectual honesty is very very important. There is only one truth, but in social interaction there is none. You say what you have in your mind so that a debate can arise. You would be surprised but I am very consensus focused when it comes to non one-truth issues! But on science, just over my dead body! :-)

Therapy from 6 to 12?

We hear a lot about therapy for young kids and for adults. But what happens with kids between 6 and 12? What is the adult version of Lidcombe or demands and capacities? And what is the kid version of fluency shaping and disfluency shaping (van Ripper, post block modification).

Exciting News: evidence of polygenetic mutation causing stuttering

Read Greg Snyder's article on his personal experience of being informed that his DNA shows evidence of polygenetic mutation: here.

Apparently, they ...  found something.  Out of all the (hundreds, if not thousands) of (stuttered blood) samples that have been taken (worldwide), they found 21 participants with a unique polygenetic mutation.  (In this case, the co-occurrence of 3 mutated genes).  I am one of the 21.  While I don’t know much of their findings, he did share that two of these three mutated genes are associated with serious (i.e., fatal) childhood diseases.  I don’t exactly know what this latter finding means, since I (along with 20 of the 21) am (are) perfectly healthy.  (For all I know, we’re all one mutated gene away from *fill in the blank*.)  In any event, they want to fly me up ... for a full work-up.  I’ll accept the offer, and keep posting about it if there’s interest. [...]

But to get the call from a world-renowned expert saying that they found something, and you are one of the 21.  That was quite surreal indeed.

Bresil or Not?

I just looked at the costs of attending the IFA (International Stuttering Assoc.) 2009 conference in Rio de Janeiro: see my post on speakers . I get to about 2000€, which includes 275$ on conference fee, more than 1000€ on flight, 500€ on accommodation, and extras. Of course, I could look at it as a 2 week holiday in Brazil with 3 days break at the conference. Still not cheap... The deadline for submission is End of February... so I still have some time...

Pagoclone trial start in March

I just heard that the Pagoclone study will start in March at several center across the US. This info fits the press release from last year: The placebo-controlled study will involve approximately 300 patients with stuttering in the U.S. treated for a period of six months and is expected to commence enrollment by Q1 2009.

So we should not expect any results until March next year earliest. Six months treatment period plus at least 3 months logistics (i.e. not everyone will be enrolled on same day) plus 3 months analysis time, and maybe a few months of observation time.

Here is my prediction: If they are good scientists, they will get a null or minor impact result above placebo and repeated measurement effect. If they are bad scientists, they will get a moderate result good enough to market the compound for stuttering. However, they might be able to show that it has a good impact in some people, but they then must convince me that this is not a random effect.

Voodoo Correlation in Social Sciences

Voodoo expert Dave Rowley made me aware of a post on voodoo correlation in social sciences: see here. Neurocritic is a blog that deconstructs the most sensationalistic recent findings in brain imaging, cognitive neuroscience, and psycho pharmacology. Clearly, we need to be careful when analysing imaging data, especially when correlating to other variables. And I am sure some brain imaging studies on stuttering have problems, too.

Notes on Maguire interview on StutterTalk

Ora sent me his detailed notes on the Maguire interview on StutterTalk: see here. I briefly reported on the interview here. Jerry Maguire is involved in the Pagoclone trials. I visited him some time ago at the opening of his centre: see here.

[These are Ora’s notes, not a transcript]

Maguire: In the past, not much attention to was devoted to medical therapies for stuttering. In the 70s people tried using some of the older meds for schizophrenia such as haldoperidol – shown to at least reduce stuttering symptoms. But side effects were pretty great.

Things lay fallow for a couple of decades.

More recently people have have explored dopamine blockers. Dopamine is involved in movement, and they also believe it’s involved in speech. They notice that stuttering particularly affects the beginning of the word. The theory is that by lowering dopamine levels in the brain, you can improve the timing and the initiation of speech. Those medications were developed for schizophrenia and bipolar disorder (not that there’s any relation between schizophrenia/BP disorder and stuttering, just that the same neurotransmitter affects both). The original idea for the use of these medications in stuttering was spawned by the fact that Tourette’s syndrome looks similar to stuttering: also, they both begin in childhood, they have a male-to-female ratio that’s very similar.

Risperdal (risperidone) was the first of these new generation of dopamine blocking medications. They studied it and found it to be effective. It reduced stuttering symptoms by 40-60%, in some individuals even higher. Tolerated pretty well; they did see some potential side effects. It can raise prolactin, which may cause sexual dysfunction. Some weight gain, milder amounts of weight gain. In higher doses than they used, such as the dosages used for bipolar disorder, it can cause muscle rigidity, even tardive dyskinesia. Potentially long-term studies should be done.  (The dosage that they studied was 0.5 – 2 mg / day.)

These studies led to another compound called olanzapine (Zyprexa), developed in mid-late 90s for schizophrenia and bipolar disorder. They did a double-blind placebo-controlled study, found it to be effective for stuttering, reducing stuttering symptoms in the majority of individuals treated – up to 70% reduction in 70% of the patients. The side effects: it caused an appetite increase in many/most of the individuals, leading to weight gain. The most concerning side effect in at-risk individuals is the potential for diabetes.

Maguire himself tolerated risperidone quite well for about two years, then switched over to olanzapine for about ten years. Did have some weight gain – about 20 pounds –  but he was between ages of 30 and 40, stopped exercising, got married, so it’s hard to tell the cause of the weight gain.

Recently there are medications which work on the dopamine system but do not have the weight gains or metabolic concerns associated with olanzapine, at least in adults. He’s just published a case report on Abilify (aripiprazole) – another medication for schizophrenia and bipolar disorder. It’s a partial dopamine blocker, so it may even work better at lower dosage. A weight-neutral compound. They’re really excited about it.

Maguire is now on ziprasidone (Geodon). Also a dopamine blocker. Weight neutral. Does have some potential, very rarely, for heart conduction problems, so an EKG is needed beforehand.

He’s a firm believer that these medications would work better with speech therapy – synergistic effect. They’ve seen that effect with other disorders of the brain such as OCD and major depressive disorder, that they work better when the medication is combined with the therapy, than with the medication alone. The medications are not a complete cure; they don’t work in everyone, and it’s not a complete effect.

These medications are not going to totally remove the stuttering. He finds that the types of stuttering where it’s most beneficial is for people who have secondary characteristics (eye blinks, facial grimaces). He hasn’t studied it much so well, but in the patients he’s treated, that’s what he’s observed.

Of course, they’re using medications that are “borrowed” from another condition (schizophrenia / bipolar disorder). With pagoclone, now in clinical trials, they now have a medication that is not borrowed in that way. It’s completed Phase II trials. Originally derived as an anti-anxiety agent. It doesn’t work on the dopamine system, but on the GABA system, which is involved in the anxiety response. (It’s known that the stuttering syndrome has a component of anxiety, but stuttering is not caused by anxiety.) It’s tolerated very well; so far it’s been prescribed in over 1000 individuals (thousands?0 – 100+ for stuttering, but over 1000 for other disorders. Appears to be tolerated much better than the dopamine-blocking medications. Their theory is that it’s a back-door way to modify dopamine. It may be a safer way than the dopamine blockers, with the added benefit that it reduces anxiety. The greatest benefit of pagoclone its tolerability. Tolerability appears to be very high, the side effects appear to be very low, just a little sedation and headaches.

Looks like the Phase III pagoclone study will start pretty soon. (They’ve finalized the research article. They presented at the Oxford dysfluency conference.) The next pagoclone study will likely have centers around the US. [OM note: since the date of the interview, they’ve announced that they’ll be doing Phase II-b studies, not Phase III immediately.]

With pagoclone they’ve seen 20-40% efficacy [unclear if he meant 20-40% of individuals or 20-40% reduction in symptoms], but they’ve seen individual respond up to 80% reduction in symptons, In general, Phase II trials may not see the full effect size because they’re using one fixed dose. In the next phase they’ll try a range of doses. In Phase III they’ll test in more individuals and then tune the dose, and even increasing the length of the double-blind phase, because with pagoclone it appears that the longer you  stay on the medication, the greater the effect.

Interviewer: We know that with speech therapies they often work well at the beginning but the benefits reduce after a while. What about these medications?

Maguire: For the dopamine blocking medications I’ve been discussing today there’s been a persistence of effect. At times they’ve observed what they think is of a recalibration of the receptors in the brain, so that may had to increase the dosage over time, though rarely. In the open-label phase of pagoclone, the response tends to be persistent. Not everyone responds, but for people who do respond, the response tends to be persistent. Also, pagoclone seems to not affect the naturalness of speech. (Interviewer: this is a common deterrent to maintaining the benefits of speech therapies; people sometimes prefer stuttering to unnatural speech.)

Maguire is not on pagoclone because FDA rules bar an investigator from being on the medication that he’s studying.

Interviewer: Other drugs? One researcher has reported on a “cocktail” of citalopram (Celexa), clomipramine (Anafranil) and alprazolam (Xanax ) for a small group (three people?)

Maguire: That makes sense in that works on GABA, but the problem with Zanax is that there’s a tolerance built up, so that an initial effective dose of 0.5 mg may have to be increased to 1 or 2 mg in a month or two. A tolerance is built up; risk of addition. (The good thing about pagaclone is that it appears not to have an addictive effect.)

Citalopram (Celexa), an antidepressant, works on the serotonin system. It may decrease the social anxiety of stuttering.

Clomimpramine is a tricyclic antidepressant and it does have a dopamine effect. But it’s got side effects, such as constipation, light-headedness. Also, sexual dysfunction, even higher than risperdal.

One thing he’s concerned about in general: that people are going to read about these drugs and try them, but at a too-high dose, because the standard doses are calibrated for schizophrenia.

For the drug that he’s taking, ziprasidone (Geodon), his dosage is about 1/8 the typical dose for bipolar disorder.

Maguire’s recommendation: combine medical therapy with a well-qualified speech-language therapist. His center at University of California at Irvine has received a grant where they can provide consultations via telemedicine to people anywhere in the world. People need a webcam and a high-speed Internet connection. Consultation over the Internet, then work with people’s own physician and monitor the level of care. He’d like to set up a number of centers where people could work both with speech therapists locally and with his center in California for the drug therapies, or even vice versa, with his patients in California working with speech therapists remotely. He knows a lot about the medication, but has no expertise in speech language pathology, except for his own personal therapy for his own stuttering. But there’s lot more to the stuttering person than the medical aspect, and he’d like to collaborate with people who use different treatments. Monotherapy (such as drug therapy) may work in some people, but will it persist? He thinks the best approach is a multimodal approach combining drug therapy and behavioral study. (And the interviewer (Greg) added: and perhaps prosthetic devices. [Does he mean masking devices such as SpeechEasy?])

Why sudden onset?

I talked about the large-scale study by the Onslow/Packman group here. They studied more than 1500 kids from age 2 to 3. Another worthwhile observation is

Onset often occurred suddenly over 1 to 3 days (49.6%) and involved the use of word combinations (97.1%).

Isn't a sudden onset impossible if I and many other claim neuronal damage due to genetics or a neurological incident? Not really. Think of a car that has a defective motor that overheats if you hit 140 km/h and drive in warm weather. If you buy your car in Spring and drive slowly for the first few weeks as the manufacturers suggest, you will not notice the damage. The sudden onset could show the switch of the brain from simpler speech to full-blown complex speech. Their observation that word combinations are involved might be an important clue. So what about those who do not have a sudden onset? Maybe their problems are less severe. I do not know.

As I said a few times: We need more research on the period before onset. And I am glad they did this study. We commit a fallacy by studying the period after onset assuming that that's the moment the issue started! It starts much earlier! 

Don't tell me that you have to do research on kids just after onset, because before onset is so much more difficult. My answer is: Well, then don't do any research! Do something else, something productive: spend more time with your family, do more therapy, join forces with other researchers, and so on!

Dead-end research

Here is a newly published article showing that non-stutterers understand the negative consequences of stuttering: Jobs, Sex, Love and Lifestyle: When Nonstutterers Assume the Roles of Stutterers. Zhang et al. conclude that 

social penalties associated with stuttering appear to be apparent to fluent individuals, especially in areas of vocation, romance, and daily activities, suggesting that nonstuttering individuals, when assuming the role of PWS, are capable of at least temporarily feeling the negative impact of stuttering.

Is this constructive research? I fear it's dead-end research like many other pieces of stuttering research. Ask yourself three questions: Is the result obvious? What have we learned? What's next? For me, the result is so obvious, that I cannot understand how someone spends his or her valuable time on such a project, unless I have a student and give him or her a project to learn about data collecting and analysis. Could you not have got there by asking a few non-stuttering friends? In fact, even I who stutter could put myself in the perspective of a stutterer, and would say the same? And, I am not accepting the argument: Science is about looking at everything carefully. The obvious can turn out to be less obvious. In 99% of the cases, the obvious turns out to be the obvious. Do you really want to run 100 projects to find the 1%. Moreover, it's about an n-order consequence. Gene to neurological damage to delay in sound initiation to stuttering to secondary symptoms to psychology to social behaviour. How can such a project result in finding anything non-obvious on a more fundamental level. We have just learned what we knew anyway. You can argue that we now know it with a big more certainty. Actually, I would argue that we have lost knowledge, because we believe that we know more but to be sure we need to replicate the experiment and do checks. So had we not done the experiment and said: this is obvious. We would engraved in our minds: We assume this as obvious so we are more careful to use this as a fact.
What can you do with the result? You can use it as a political tool maybe, or as a motivation to argue that the way we need to create awareness is to put the fluent speaker in our shoes. WOW! But could we not have made this argument anyway?

Some changes

I have updated the list of the latest posts from stuttering blogs (see right border). Now you can see the latest in the stuttering blogosphere from my blog. Make TheStutteringBrain your starting point! I kicked off Norbert Lieckfeldt from the British Stammering Association, because he has not posting for 5 months. It's a though market out there. But I added three very active blogs: StutteringHub, Indian blog, and Stuttering is cool. 

I also have a Sponsored Link section. If you are a serious party, you can ask for a sponsored link. For example, if you want to advertise your conference or workshop, your books, or your professional practise. It is worthwhile because I have between 800-1000 unique visitors per week. I only accept non-controversial ones. For example, I already decided not to run Google Ads, which will cost me some money, and I refused a link request by Janus / SpeechEasy.

I am aware that my design is not very cool but at least it is functional. I am on blogger.com and it is difficult to get something better. Maybe I can play around and increase the width of the posts a bit.

Let me know if you have any ideas of improvements. But don't write "change the blogger!" ;-)