Thursday, June 24, 2010

Waiting for the Pagoclone study....

The Pagoclone Phase IIb study has still not been published. Several sources tell me that the company TEVA has all the data for several weeks now. There is no doubt in my mind that they know the outcome of the study. Sometimes they wait with an announcement to coincide with another corporate event. But the longer we have to wait, the more pessimistic I get. Do they actually have to publish the study? What if the study turns out to be a null-result, do they have to publish the details? I believe that they have to register their study, but I am sure how much of the data they have to release. It's very important that all studies are made public. If only the positive ones are published but the null ones not, we have a publication bias. And that can be a big big issue.

Tuesday, June 22, 2010

How safe are the lysosomal stuttering genes?

I have written about the claimed discovery of mutations in three genes affecting a lysosomal pathway: search for Drayna. I also spoke of the most important scientific discovery in stuttering so far, assuming the research is correct. Over the last weeks I have received emails who are skeptical about some aspects of the article. I also know that someone is preparing an article questioning the validity of the findings.

Here is a taste of the skepticism:
I have shared the paper with a couple of top notch human geneticists - who, in turn, thought that the paper was a bit of a joke. As one pointed out, if this was the profoundly important finding that NEJM's editorial claimed it to be, then publishing it in NEJM would be akin to Watson and Crick publishing their 1953 paper in Popular Mechanics rather than Nature!

I believe at least one of these individuals is preparing a formal critique for publication. However, he has already flagged a number of problematic issues, including the Figure 1 data, the large number of unattached technical labels, and the failure to report whether those with the mutation suffered from other far more serious conditions (a likely result of lysosomal enzyme disease is developmental regression). As we know, Down's Syndrome patients have been reported to have an abnormally high incidence of stuttering, but their speech disorder is a relatively minor part of their condition. And, of course, not all persons who stutter have Down's Syndrome. You suggest that what Kang et al. might have found is a sub-type of the stuttering population (maybe,

Monday, June 21, 2010

Bigger disconnect will not correlate strongly to severity

ig88sir asks:
Does anyone think that a bigger disconnect (i.e.,weaker myelin sheath) has a correlation for stuttering severity? It is a naive simplification but seems to make sense to me. They should do imaging with mild and severe PWS to find out.
 I hold the opposite opinion:
  1. Two different dynamics are affecting severity of stuttering. 
    1. The frequency and length of delays in speech initiation due to neurobiological deficits.
    2. The instinctive reactions to speech delays, and acquisition of learned behaviours and cognitive schemes, which can also impact neurobiology.
    3. Factor one might well be directly affected by the disconnect, but a disconnect is only one and probably not even the most important factor in shaping the reaction and re-enforcements.
  2. A slight disconnect might actually make the delays worse, because the brain either
    1. does not compensate neurobiologically speaking, or
    2. compensates but the weak route is still active, so there is interference between two routes.
  3. A severe or full disconnect might force the brain to compensate leading to temporary developmental issues but in the long term that compensatory route is working fine, and there is no interference from the bad fiber connections.
  4. The brain imaging studies show a significant overlap between the pws group and controls. Some controls have a lower fiber coherence than some stuttering people. The difference is also apparent in the population, i.e. the average coherence between the two groups.
  5. The NIH study in recovered stutterers found that the recovered ones had more structural abnormality.
  6. The genetic studies (including the twin studies, I think) have not found a strong correlation between the severity of twins who stutter.
So I would not be surprised that there is no strong correlation between disconnect and severity.

Saturday, June 19, 2010

Stuttering: a disconnection syndrome

The New England Journal of Medicine in a very generous contribution to free and open science has published the first 100 words of a letter to its Editor by scientists whose research and salary is being probably entirely paid by us, the tax-paying public, Büchel from Hamburg, Watkins from Oxford, and a reply by Drayna from NIH:

To the Editor: In the report by Kang et al. (Feb. 25 issue)1 regarding genetic abnormalities in the lysosomal enzyme–targeting pathway in persistent developmental stuttering, it would have been important to relate the results to recent neuroimaging findings in patients with this disorder. Contrary to the authors' statement that "the underlying causes of stuttering are unknown," studies using diffusion tensor imaging, a technique sensitive to subtle abnormalities in brain white matter, have consistently revealed left-hemisphere white-matter abnormalities in patients with this disorder.2,3,4 Together with studies showing a speech-timing abnormality in such patients, these data strongly suggest a disconnection syndrome.
Looks to me as if Büchel and Watkins are not happy that the genetics paper has left the causes of stuttering unclear. For them, stuttering is clearly a disconnection syndrome. I have never heard that term before, but a similar tone was hit in a recent Chinese brain imaging article. Clearly connectivity issues would lead to a less effective system which leads to occasional speech delay.

But yet again, we are deprived from an open debate. Yet again it is happening behind subscription-closed doors.

Thursday, June 17, 2010

British Stammering Association hijacked!

Someone is hijacking the name of the British Stammering Association to get your free speech therapy ideas (see picture). I have already told Norbert, the CEO of BSA, but google is still running the ad.

If you are in England, call the company and complain!
Speechmark Publishing Ltd
70 Alston Drive
Bradwell Abbey, Milton Keynes
MK13 9HG, UK
info@speechmark.net
tel +44 (0) 1908 326 944
fax +44 (0) 1908 326 960

Monday, June 14, 2010

Fluency reduction?

StutterTalk had this advert by Gail M. Wiss being sent to them. They remark that clinicians are now supposed to use the word "fluency" issues rather than stuttering, so she probably just got confused! I am also amazed and impressed at how she is specializing in eight disorders plus most neurological disorders!!!

Saturday, June 12, 2010

No pill makes you a good public speaker

A reader asks me about medication, because he needs to give an important speech. Here is what I replied:
You do not need medication. You need to challenge yourself. You need  to start working on yourself and not try to find quick-fix solutions that don't exist! You cannot become a good sportsman by taking pills, you need to train.

You need to get at ease when speaking in front of groups so that it feels like talking normally. That's a conditioning and learning process that everyone can do, but it takes time and you have to face
your fears.

There is only one way to do this: to continuously speak in front of people.

I recommend you join a Toastmaster club. Many stutterers have found this useful. Spend the money on the membership fee!

Here is what I did: http://www.youtube.com/watch?v=YrQCIEKYxMY

You can do that, too!

The more speeches you give the more relaxed you feel and the less likely stuttering will be triggered.
 

Friday, June 11, 2010

Taking part in a German questionnaire

Someone forwarded this call for participation in a questionnaire survey. It's from Austria, in German, and too much dead-end research for me. Here it is:
ich bin Mitglied der Österreichischen Selbsthilfe Initiative Stottern (ÖSIS) in Innsbruck und führe im Moment Untersuchungen zum Thema Stottern im Zuge meiner Psychologie-Diplomarbeit durch.

Ich werde dabei von Frau Prof. Eva Bänninger-Huber (Psychologie Institut Innsbruck) und Frau Dr. Wieser, Ev (Logopädin, Klinische & Gesundheitspsychologin) betreut. Frau Prof. Bänninger-Huber hat selbst jahrelang unter der Leitung von Herrn Prof. Rainer Krause (Universität Saarbrücken) das Thema Stottern untersucht.

Meine Diplomarbeit beschäftigt sich hauptsächlich mit dem Thema der nonverbalen Kommunikation, da ich selbst als Stotternde nicht nur Einschränkungen in der sprachlichen, sondern gerade auch in der nichtsprachlichen Interaktion erlebt habe.

Ich vermute, dass sowohl das Stottern, als auch jene unausweichlich damit in Verbindung stehenden negativen Interaktionserlebnisse, zu diesen nichtsprachlichen Einschränkungen führen.

Meine Untersuchung ist online auf dem Server der Universität Innsbruck aufgebaut, anonym, dauert max. 20 Minuten und besteht aus 1 Fragebogen und 1 Emotionserkennungstest.

Ich möchte unbedingt genügend Betroffene untersuchen, um aussagekräftige Ergebnisse zu erhalten, da mir dieses Thema sehr am Herzen liegt.

Unsere österreichischen Selbsthilfegruppen sind jedoch recht klein und deshalb wäre ich Ihnen außerordentlich dankbar, wenn Sie mich bei meiner Untersuchung unterstützen und das Dokument im Anhang (enthält Informationen und den Link, der zur Diplomarbeitsuntersuchung führt) an Ihre Mitglieder weiterleiten könnten.

Die Ergebnisse werden ausschließlich im Rahmen meiner Diplomarbeit verwendet.

Link zur Untersuchung: http://homepage.uibk.ac.at/~csaf4868/fb.html

Vielen Dank bereits im Voraus für Ihre Hilfe und Unterstützung!

Liebe Grüße aus Innsbruck!

Susanne Klein

Top 50 Communication Blogs.

Check out the Top 50 Communication Blogs according to Kelly Davis, includes five blogs on communication disorders. (did I mention I am included?! ;-)

Thursday, June 10, 2010

Support Peter's petition for more responsible marketing

If you are a person who stutters, a speech-language pathologist or speech therapist, a member of ASHA, a parent of a child who stutters, or anyone else who cares about these issues, please support this petition and contact Peter Reitzes to have your name put on.

ASHA Needs to Actively Enforce its Code of Ethics

Arlene A. Pietranton, Executive Director
American Speech-Language-Hearing Association (ASHA)
2200 Research Blvd., Mail Stop #309
Rockville, MD  20850-3289

PETITION

We, the signatories, petition the American Speech-Language-Hearing Association (ASHA) to rigorously enforce compliance to its self-imposed Code of Ethics.

ASHA could not be clearer in its intention to protect consumers. Principle of Ethics I, Rule J states that “Individuals shall not guarantee the results of any treatment or procedure, directly or by implication.”

However, such promises of specific outcomes in stuttering are widespread.