Wednesday, September 29, 2010

BSA is propagating Newton myth

The British Stammering Association is organizing a Walk & Talk walk through London to raise awareness for stuttering and money. So far so noble! They had the highly original idea to follow the steps of historical figures who stuttered. So far so innovative! But they include Isaac Newton and he is even the lead figure.

But of course there is NO evidence at all that Newton stuttered. I have posted on this myth: see here. I even managed to get Judy Kuster to take Newton off the list, and now he is coming back...

Just imagine you become famous, and 400 years later a group of people with let's say irritable Bowel syndrome is walking across town making you the most famous irritable Bowel person, distributing leaflets with your face, and asking for a donation. It's just weird...

Monday, September 27, 2010

A non-informative and insulting reply to Ingham's reply.

In my last post, I have cited Ingham's comment to the Phase IIa article. Maguire, Riley and Franklin's reply is non-informative and insulting. Here are a few extracts and my comments on how NOT to reply to a journal comment.

The authors thank Dr. Ingham for his reply. Unfortunately, the authors think that he is mistaken in most of his assertions.

That is just an insulting way to start a reply, and adds absolutely nothing to the reply. A reply to a comment is not a blog post!

Pagoclone results in improved fluency with at least a 40% reduction in stuttering severity..

Well, and how about the placebo group's improvement? How about the variability in fluency? If it worked so great, why does the much larger Phase IIb does not have a good positive effect?

Ingham's behaviorist view is outdated, and it is fortunately being overcome by the burgeoning data that support that stuttering can be treated through pharmaceutical means.

What a ridiculous statement! First of all, it's off topic as it's Ingham who criticises the trial design. So they should reply on his criticism on their design. Second, I am not sure what this behaviorist view should be. Ingham's conviction that everything should be objectionably measurable? Again, who cares. They should counter his arguments. Third, where is this burgeoning data that support pharmaceutical intervention? I don't see it. I just see: you shake up the neurotransmitters and some are more fluent or dysfluent for some time. But no long-term trial has showed efficacy.

thankful to the Journal for supporting such an open debate.

which open debate?

It is our goal to combine efforts with the speech-language pathology community to better treat stuttering using all effective means possible.

That is a typical phrase from politics. First, it's off topic and does not address the trial design. Second, it's very vague on "efforts" and "all effective means possible". Third, the sentence propagates this myth of "if we work hard on it with all means, we will succeed". An empty statement.

as we strive to take the treatment of the millions of people who stutter from darkness to light.

What does that mean? Reminds me of Star Wars. Not sure why.

Summary: The reply is just idiotic. And to be honest, Jerry's style is different, and his reasoning is more intelligent than this reply. So I am wondering if one of the other two has written the response. My guess: Riley.

Ingham critical of Phase IIa design

Roger Ingham, professor at Santa Barbara, has written a reply to the Phase IIa trials on Pagoclone. He has been critical of the procedures, and some of these have been considered for the Phase IIb. I have also expressed my concerns about the study, and said that a larger better controlled trial needs to be done. (Unfortunately I cannot find the post on my blog!) The non-published Phase IIb trial has now kind of confirmed my suspicion that the effect is not significant, except possibly for a subgroup. But we have no official data, so I can only speculate.
I often hear people say that Jerry is a hero and so on. No doubt he is heroically trying to find medication for stuttering, and he understands us and stuttering better than his medical colleagues but he is not a perfect scientist and must be open to criticism. Here is the reply.
Maguire et al’s.1 recent report on a clinical trial evaluating the effect of pagoclone on stuttering concluded that “pagoclone may have potential as a pharmacological treatment of stuttering” (p. 48, 2010).  This conclusion was qualified by some comments on the limitations of their study, but there are many that were not mentioned and that raise serious doubts about clinical value of their findings.
Maguire et al. report effects of pagoclone on experimental (n = 88) and placebo (n = 44) groups of adults who stutter who participated in a multi-site double-blind treatment followed by a 1-year open-label extension in patients who stutter. They report a 40% reduction in stuttering frequency as measured by the SSI-32 – an instrument that has questionable reliability and validity3, in part because it assesses only 200 syllables of speech, all of it generated within the clinic rather than in ecologically valid beyond-clinic environments.4   That limitation is actually

Tuesday, September 21, 2010

A reader visits the Stuttering Brain

Here is a picture with Ora from New York at the castle of Vianden in Luxembourg. Frequent readers might know him from his comments on my blog.

Ora and his partner Dan who is a Gestalt psychotherapist visited me beginning of September in Luxembourg. I showed them around Luxembourg-City and the castles in the countryside. We also visited the German border town of Trier, famous for its Roman remains.

Both are highly intellectual.We had lots of interesting debates: on stuttering, politics, psychotherapy, and they were so kind to rip apart my presentation for the book I am writing. ;-)

If you are ever close to Luxembourg, send me an email.

Sunday, September 19, 2010

Stop saying you cure 75% of kids!

Peter sent me this wonderfully misleading text:

"The University of Georgia, Speech and Hearing Clinic is an example of success in helping children overcome their stuttering, some starting therapy as early as two years of age. The treatment is based on the Lidcombe Program, which was developed in Australia in the 1980s and operates on the theory that stuttering is a neurological problem. It works by giving positive feedback for desired behaviour and corrective feedback for undesirable behaviour. It teaches the parents the importance of maintaining a healthy balance between praise and correction, making the process a positive experience for the child. The clinic claims to have a 75% success rate in eliminating stuttering, with the remaining 25% continuing to have a mild stutter. The treatment is more effective the earlier it is started and parents are encouraged to seek help as soon as they notice a speech problem."

75% sucess rate?? Excue me: 75% of the kids recover anyway naturally. On the other hand, the statement that "the remaining 25% continuing to have a mild stutter." is indeed possible after a good treatment with a good therapist, good parental support, and a receptive child. However, I would speculate that even though many leave with a milder stuttering, there is absolutely no guarantee that they will relapse over the next years. On the other hand, this relapse rate might be lower than with adults. Also the psychosocial adaptation could be much better than if the child had no intervention.

Wednesday, September 15, 2010

A poem by Ashaur Rahman

Just read the latest publication of Speaking Out, the magazine of the British Stammering Association (BSA). A member, Ashaur Rahman, got into the finals of The Brit Writers' Awards. Here is one of his poems with the very informative title Stammering.
S ubstituting words helps me when I chat
T his disability people always laugh at
A ... A...Ashaur is my name
M ost people don't understand my pain
M entally it's exhausting; physically it's frustrating
E nchant yourself when you are singing
R epeating words is just an occurrence
I ceberg analogy is a resemblance
N ever let anyone belittle you
G ain confidence that you never knew

Tuesday, September 14, 2010

Leys is spinning again

Leys Geddes, chair of the British Stammering Association, is unfortunately misleading again. Surely unwillingly, but still.
Early Intervention could reduce the numbers substantially but support from the NHS is inadequate.
There is no evidence whatsoever that the number of adult stutterers is reduced substantially. At best, the adult stutterer's stuttering is less frequent and severe, and have a better psychosocial adaptation.

And more...
However, Early Intervention allows the vast majority of those very young children at risk of a lifetime of stammering to regain fluent speech, achieve their true potential and make a full contribution to society and the economy.
It's highly highly misleading. As I told Leys a million times: The vast majority recovers *any way*. So you cannot just say that EI allows most to regain fluent speech. Yesterday, I over-heard a conversation from my neighbouring table at the restaurant. A mother told her adult son: you were stuttering, too. I took you to a strange man who did exercises with a metronome, and after a few weeks you were fluent! Leys, why don't you write a story that Early Metronome intervention allows the vast majority of .... ;-)

Here is Tom's version:
Early Intervention accompanies children and parents during the period of a child's dsyfluency. Its main goal is to re-assure and inform parents of children who stutter, to rule out other developmental issues and treat these if present, and to actively intervene when stuttering becomes too distressing or does not wane after several months. Those children who do not naturally grow out of stuttering may significantly benefit in terms of reduction of frequency and severity of stuttering and achieve a good psychosocial adaptation to their speech impediment. Only a skilled specialist speech and language therapist actively and regularly supported by the child's parents achieves such successful interventions.

Sunday, September 12, 2010

Ryan Pollard: Address his criticism!

I wrote a post on Thomas Kehoe's arguments against a chapter on Speech Easy: here. The response of Ryan Pollard, one of the authors, (I assume it's him who left a comment and not someone else.) is a prime example of what is wrong about the debate on research into stuttering: there is none.

If Ryan Pollard were a true scientist, he would address Thomas' arguments one by one, and either agree or disagree with a counterargument. He could take pride in showing where Thomas went wrong.

Let's see what he has actually done.

To those who have supported or want to support Mr. Weidig’s supposedly altruistic “mission” on behalf of those who stutter, please read the following.

Doesn't address Thomas' arguments.

Mr. Weidig, I’m going to keep this short because I’ve already published work on the SpeechEasy and defended it in peer-reviewed journals; I have no desire to do so again at length on someone’s blog.

Doesn't address Thomas' arguments. And, his comment appears to be as long as an actual refutation or acceptance of critical comments.

The label matters

For the last years, I have been struggling finding the right name for the chemical substances that people swallow in the form of pills in order to change some aspects of their body or behaviors and experiences.
Yes, I am talking about drugs, pharmaceutical drugs, medication, medicine, active compounds, and many more.

What is the right word to use? I used to write drugs, because that's the shortest and many use this word. But of course drugs are mostly used in the context of illegal drugs and not as pharmaceutical drugs, and have a negative connotation. Jerry Maguire told me once that he doesn't like the word drugs, and that I should rather use the word medication. However, even though I am using it often, mostly when I am talking about the search for stuttering medication, I am very reluctant to use the word for trials, because these chemical compounds have not been proven to be a good medicine or medication for stuttering.

Saturday, September 11, 2010

The costs of pharmaceutical fluency

Most people who write to me about their experience with different pills stopped taking them. Only a few claim significant improvement in fluency or secondaries.

The cost-adjusted outcome is the critical concept. Even if your outcome is positive, you must be aware of the following costs associated to pills.

1) You have financial costs for the rest of your life.

2) You might experience side effects for the rest of your life.

3) You could face serious unknown side effects after long-term use.

4) You have to take the pills for the rest of your life.

5) You are dependent on the pills for your well-being for the rest of your life.

6) You are not cured of your stuttering.

7) If you don't take them for a while, you might even stutter worse than before until the neurotransmitter levels have settled.

8) You know that the pill has succeeded, and not you yourself.

9) They might interfere with other medication, especially for psychoactive compounds, and your doctor's options might be restricted. At worst, you need to stop taking them.

10) You might develop tolerance after a few months or years.

Friday, September 10, 2010

New idea from the brain imaging front

There is more and more we can do with brain imaging. Check out this article on how to monitor a child's development. Like measuring height or weight. Maybe in kids who keep stutter one connection is weaker?

Tuesday, September 07, 2010

Misleading chapter in Guitar & McCauley's book on SpeechEasy?

The Treatment of Stuttering by Guitar and McCauley is one of latest books by Guitar who has written a text book on stuttering before. In general, I am absolutely not impressed by Guitar's presentations I have attended and research I read about. He is doing a lot of pseudo-science. He tries to be rigorous scientist but he is really a clinician (probably a good one) who should stay away from research designs.

I came across Thomas Kehoe's feedback on the chapter on Speech Easy. Thomas is selling a similar device. I love the way he has taken apart that chapter. Having read stuff from him in the past, I have little doubt that his arguments are sound. And if so, that's highly embarrassing for Guitar

The most damaging allegation is that "seventeen pages about the SpeechEasy device, written by a SpeechEasy dealer." That's what you call conflict of interests.

So be aware if you have or want to buy their book.

By Thomas D. Kehoe (Boulder, CO USA)
This review is of one chapter, not the entire book. Different chapters were written by different authors, so the rest of the book may be better.

Chapter 16 is seventeen pages about the SpeechEasy device, written by a SpeechEasy dealer. In it we learn, for example, the interest rate at which they can finance your purchase. (My company makes the SmallTalk device, which competes with the SpeechEasy device.)

Monday, September 06, 2010

Should Endo continue trial?

James Dunlap asks me to publish his request for a continuation of the Pagoclone trial. I am staying out of this. I am not sure a continuation makes sense on their part. I guess the key is whether there are subgroups who benefit and they can identify them. And with benefit, I mean beyond placebo, measurement bias, and fluke correlation. Overall, I am rather pessimistic.

I've been advised that it would be helpful for any current Pagaclone test
participants or any stutter who would like to participate in the testing of
Pagaclone to write (or preferably fax) the CDO of Endo Pharmaceutical ...

I'm providing the address below for anyone who believes they have or may
benefit from Pagaclone to make their voices heard in this decision. Once
the decision is made to shut down the project, it will be much harder to
restart the program. At this point I would suggest faxing a letter and
mailing a copy to the address below. Contact me if I can answer any
questions. Thanks. Jim.

David P. Holveck, CEO
Endo Pharmaceuticals
100 Endo Boulevard
Chadds Ford, PA 19317
United States - Map
+1-610-558-9800 (Phone)
+1-610-558-7699 (Fax)