Tuesday, February 24, 2009

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.

9 comments:

sachin said...

Dear Tom
I coordinate The Indian Stammering Association (TISA). I have been following your blog. You are asking right questions- on behalf of stuttering community. Experts, clinicians, reserachers are not above human weakness- like financial interests- and therefore they should be open to critique like anyone else..
You are on the right track. Keep at it.
I find your comments objcetive and based in sincere inquiry..
Thanks
sachin

Anonymous said...

Tom -

Stay at it. I don't agree with you all the time, but you have the right to question and comment as much as you want, how you want. Right or wrong, you seem to be sincere, which is commendable.

The professionals have brought this on themselves. The field is in the state it is because of them.

Self help groups need to be more outspoken for the needs of the individual members, not the professional groups agenda's.

Pamm said...

Tom,

Some of this sounds a lot like a similiar argument a Mr Feuer was trying to make at last Fall's ISAD conference, where stated his concerns that some professionals only tell parts of the story, research, explanation, or whatever.
I agree that consumers need to be aware of everything that they read or hear may be a matter of opinion and not fact. Its good that there are people willing to go out on a limb, and pose difficult questions.

James said...

Ed Feuer has been doing this every year at ISAD.

There is a lot of crap on the Internet....

I feel the blog has gotten progressively worse recently. But still good read...I give it a C grade. There are A blogs out there, just not related to stuttering.

James

Tom Weidig said...

Hi James,

actually I agree with you that my blog got a bit worse. It is just that I do not have the time to think more carefully about stuttering and do background reading. Therefore I have the tendency to respond to instances where argumentation is flawed, because it is less time consuming!

Of course, you are welcome to improve the blog with good comments!


Best wishes,
Tom

Anonymous said...

These days, we have the internet, which should encourage the free flow of information, so the results of any scientific research should be made available to everybody. This is the case in many fields - for example, in mathematics and physics there is a free database (arxiv.org) where scientists pre-publish their papers. Why are stuttering "researchers" withholding information from the internet public? What do they have to hide? It reminds me of the dark ages when the clergy were the sole custodians of knowledge. Are they afraid that the public knows more than they do?

Some very important scientific discoveries have been made by independent researchers. Einstein was an independent researcher when he shocked the world with special relativity; Grigori Perelman was offered the lucrative Fields medal in 2006 for his contributions to Riemannian geometry (he turned down the award even though he lived in poverty); Garrett Lisi, an unemployed surfer-dude, came up with some important "theory of everything" - an alternative to string theory; Jim Lovelock came up with the Gaia hypothesis (and lots of other stuff)... With the free flow of information on the internet, there should be more discoveries by independent researchers - but stuttering "researchers" don't want this because it would erode their authority when, in reality, they are emperors without clothes. One only has to hear Susan Block's reaction to the emergence of the Maguire technique in Australia ... totally irrational.

Ed Feuer - I've heard of him; he sounds like a good man.

George

Anonymous said...

what was Susan Block's reaction?

Tom-can you comment on the McGuire programme....no attention from SLPs. Scared?

Why no research on McGuire programme? (Tom, why don't you do it)

James

Anonymous said...

@James

Please try:
http://thestutteringbrain.blogspot.com/search?q=Maguire

Xav

Anonymous said...

James,

You asked: "what was Susan Block's reaction?"

As we know, the Maguire program addresses some of the behavioural issues associated with stuttering. For example, stutterers generally speak very quickly without pauses - particularly in difficult speaking situations. This is natural because they want to get to the end of the sentence as soon as possible, before the stutter hits them. Maguire encourages using pauses and slow speech.
Stutterers also tend to avoid speaking and try to hide their stutters. To address this issue, Maguire teaches "voluntary stuttering" on non-feared words.
Maguire also teaches a costal breathing fluency technique to allow stutterers to get a good level of fluency ... a kind of Valsalva release.

I wanted to discuss this with Susan Block a few years ago. She is usually a very nice and gentle person, but as soon as I raised the topic of Maguire with her, she became highly agitated. She said things like, "they seem to get good results, but they have not provided any academic data so it is not a reputable treatment". Of the costal breathing technique, she said, "such forceful breathing might cause a problem with the articulators". She also said that Maguire was more like a "religious cult movement". I had intended to have to have an enlightening discussion with an expert but instead all I got was the defensiveness of a pre-Copernican obscurantist (to quote a former Australian prime minister).

George