Saturday, July 31, 2010

That's how you scam people.


I have formed a group of people who are willing to get more information about the scam. Please email me if you want to contribute time and expertise. I am looking for web expert, and ruthless lawyers. ;-)

Also, can someone find out which other website Arjun Lal runs? I found already several with the same design and pattern of fraudulent claims. I need to do a reverse whois, but there is not free option right now. I only know that he has 26 websites on godaddy.com, I think.

Friday, July 30, 2010

Hunting down frauds

Much has happened since the last posts. Several readers have helped me to untangle the web of deception surrounding the KillYourStutter.com website and its fraudulent claim to cure stuttering in ten minutes.

First of all, Arjun Lal has confirmed that he is the owner of KillYourStutter in an email with the words "Yes, I am the owner. How can I help you?" ;-) after John called his number numerous times over the last two days, and got his "wife" and "daugher" on the phone who claimed not knowing anything about such a website. Strange, strange.

Second, Deryk has launched a complaint for illegal speech therapy practise, and I am currently getting Canadian contacts together to consider further legal steps.

Third, he is mentioned in another lawsuit for copyright violations, and we are in contact with the lawyers to feed them with extra information for their lawsuit.


Thursday, July 29, 2010

Lal's wife didn't know

He must get into trouble now, because his wife didn't know or didn't want to know. Or someone has hijacked his name and address. I contacted a documentary maker who stutters, and he had the ingenious idea to call the number on the registration details! ;-)
Hello Tom

I phoned Arjun Lal's number but he wasn't in. His wife answered. I asked her if Mr. Lal owns KillYourStutter.com. She said that she didn't know. I'll try calling him again in the evening.

Wednesday, July 28, 2010

Complaint launched against Arjun Lal

Deryk is finally outing himself fully as a regular reader and supporter of my blog, and as a Canadian who has sent a complaint about KillYourStutter.com website to CASLPO. I wonder whether Deryk's newly found courage comes from his being awarded a PhD recently. Congratulations on your well-deserved PhD, Dr. Deryk S. Beal! :-)

Dear Brian and Colleagues,

I am writing you today to bring your attention to a possibly fraudulent stuttering program operating in Ontario. Dr. Tom Weidig is a person who stutters and the author of "The Stuttering Brain" http://thestutteringbrain.blogspot.com stuttering news source. Today, Dr. Weidig reported to his readers evidence that a possibly fraudulent stuttering program

Tuesday, July 27, 2010

Arjun Lal: a swimming pool from stutterers' desperation

Good Girls Go to Heaven (Bad Girls Go Everywhere). It is no different in the stuttering community. I might go to heaven (or hell) for my blogging activities, but Arjun Lal makes the $$$ and has a nice house with a swimming pool in a leafy area of Unionville. According to my humble opinion, he is the crook, fraud, thief, and creator of the website Kill Your Stutter that promises a cure in ten minutes.

A reader emailed me:
Tom, I am incensed by the Kill Your Stutter program, which posts 1-2 ads per DAY on various random sites, and which has zero documentation. The author hides in literally an unlimited number of sites, and presumably hits Google alerts daily by simply posting to the 1-2 new sites per day.

Is there some way to generate a similar posting asking people to be WARY of this scam? I

Monday, July 26, 2010

End of a self-help group


Jim Caroopen wrote to me about the end of Friends 4 Fluency, and thanked me for my support.

Sunday, July 25, 2010

The fallacies of the dear reader

My reader comes from all walks of life: university professors, clinicians, person who stutters, person who is affected by stuttering, and scientists. And some dear readers commit fallacies.

I have never in my life read such nonsense in relation to stuttering.
The dear reader is not supporting his statement "your statements about stuttering are non-sense" with arguments. I cannot reply to such comments, because I cannot study his arguments and refute or agree with them. Typically, such comments are more an expression of an emotional reaction, because my statements do not fit with his view of the world. Lesson: Say why I write non-sense.

Sounds like you are simply venting and not proposing any solutions.
The dear reader does not actually address my statement, because s/he claims that I should not be allowed to make the statement or that the statement is wrong, because I am not proposing a solution to issues made in the statement. So I cannot talk about HIV being a major threat to South Africa, because I do not propose a solution? The reader is in the wrong mind setting. In negotiations, business environments, clinical settings, and deadlines, it's often more important to propose solutions than to pinpoint the issue. But we are in a scientific / intellectual debate framework. Lesson: Grow up intellectually and forget about the consequences of your arguments.

You must accept other people's opinions.
The dear reader must be aware that such a statement would make a debate impossible. Of course, everyone should have the opportunity to voice their opinion. But often that opinion is simply wrong, and one needs to be able to express the opinion that someone else's opinion is wrong. The reader confuses this with matters of tastes or person experiences. I cannot disagree with opinions like "Tom's new blog design is awful and I prefer green wall paper" or "I felt anger at Tom's post". These are the reader's experiences and I cannot take them away from them. However, I can argue with their interpretation of their experiences. For example, if someone writes "Stuttering is a learned behaviour, because I unlearned X", I can disagree because the fact that he had the experience "I unlearned X" does not automatically mean that stuttering is a learned behaviour. Lesson: Many opinions can be challenged, because they are not first person experiences or matters of taste but verifiable ideas.

XYZ is a well-respected figure in the stuttering community
The dear reader should put arguments forward to support that figure's statements. Winning the popularity contest or the conference organizers over to give a key note speeches is not relevant to whether the statements made by those people is correct.
Again, statements needs to be supported by arguments and not by authority beliefs. Lesson: KILL ALL AUTHORITY. IF A PROFESSOR OR WELL CANNOT SUPPORT HIS OR HER STATEMENTS THEY ARE NOT WORTH BEING PROFESSORS.

Saturday, July 24, 2010

Holding your breath = Holding your stutter?

I have been writing before about my suspicion that mechanisms responsible for holding your breath longer also modulate the occurring and expression of stuttering symptoms: read Diving and Stuttering, and Swimming Crawl and Stuttering. Yesterday, I made a similar observation again. I felt much greater control over my speech and did not feel the need to get the words out immediately, was able to wait a bit to continue speaking, and able to control the expression of my symptoms more. And yesterday I was holding my breath for 2 minutes without much struggle. I just felt that the struggling behaviors while holding my breath were present but less severe and I was more able to ignore them. So what does this mean for stuttering?

Well, as I wrote many times before, I believe in a neurological deficit that increases frequency and length of internal jams in speech initiation. And I believe that most stuttering events are learned behaviors arising from conditioning processes due to neurological stuttering events, and easily triggered by different stimuli to which they have been associated with. The expression and occurrence of the symptoms and occurrence is directly related to the ability to control those jams in order to avoid a triggering of learned behaviors.

In holding your breath, your brain needs to override the strong reflex to take a breath, and this is only possible if the reflex is weak or the control of the inhibition of the reflex is strong, or both. On such days, the brain is probably also more able to resist the urge to react to a small neurological jamming and wait, or to resist triggers by stimuli conditioned on stuttering events.

Saturday, July 17, 2010

Some mothers are the worst for stuttering kids

I have listened to StutterTalk's chat with well-adjusted mothers. But when I think of mothers, I think of many as being the biggest hurdle for stuttering kids. In my private one-to-one conversations with speech and language therapists, I hear them bitterly complaining about mothers. Of course, publicly they would never say such things. Not even or especially not at a conference. Has any therapist ever talked about the issues of mothers? No, everyone says "We need to embrace mothers as co-therapists. They know best what's good for their kids". Bullshit! Here are the most common complains:

1. Mother knows exactly what is best for their child, because she is the mother.

2. Mother complains bitterly about therapist to the director but does not even follow the daily practice.

3. Mother has a strong world view on how to treat kids like alternative medicine.

4. Mother over-rides the more rational approach of father because she as the mother knows intuitively what's right for her child.

5. Mother spends the whole session crying and talking about her bad husband, how she is left alone, and basically blaming her troubles on everyone else except herself.

6. Mother is totally hysterical and out of herself with anxiety and runs around to millions of different places for help.

7. Mother keeps on saying that she feels guilty even though everyone including the rational father tells her a million times that that's obviously not the case.

Any more?

As I always say, you need a qualification for everything in life except for having children. Luckily or else humanity would have gone extinct for a long time...

Thursday, July 15, 2010

De-constructing Emily Blunt's stuttering and recovery

Here is an article on Hollywood actress Emily Blunt: How I Beat My Stutter. As I always say: You cannot take away people's experience, but you can take away their interpretation of their experiences. Here is my interpretation of Emily Blunt's experience on why she started stuttering and recovered:

It set in around age 10. “I remember that when it first started to kick in, I thought it was a habit,” she says, “but when it really starts to ingrain itself upon you, it becomes an anguished situation to live your life in, especially when you’re a kid, when you’re only trying to appear very cool. I was definitely not cool.”
Hormonal or physical changes due to the onset of puberty are the most likely cause leading to

Wednesday, July 14, 2010

Why stuttering at low stress/load levels

A reader asks the following question:
Can anyone explain how a late onset completely destroys a previous stable system even when going back to low stress-demand situations? I can almost fathom that when the stress/load is large enough the system jams and breaks down AT THAT LEVEL but why does the system break permanently in the previous lower stress/load levels? Is there a physical rewiring that sets due to the low plasticity? Is it like a breaking dam that once broken is never fixed? Any thoughts?
That is a good question leading to a good debate. I wish more people would ask such questions. Here is my answer:
  1. a person who has a late onset might already have an on-the-edge stable system. Such systems are very common in all kinds of situations. Think of a transport system, where you have not jam and just five minutes later there is a jam.
  2. a late onset is not destroying the stable system, but a relatively small change in neurotransmitter levels or neurological incident can push a stable system over the edge. And this is not destruction but modulation of the capacity of the system.
  3. the over-the-edge is not dramatic but just noticeably increases frequency and length of a jam in the brain under high stress/demand.
  4. this low capacity system leads to learned behaviours (secondaries or associations of letters with jams) and cognitive beliefs (I have trouble of those situation, I am scared that I will stutter.)
  5. those learned behaviours and cognitive beliefs lead to stuttering behaviours without a neurological jamming.
  6. I would not talk about a breaking dam but more like a dripping (a bit like Chinese torture: let water drip on a prisoner for a few hours) that will lead to maladaptive reactions.

Conferences are the best therapy.


(by Mike Bauer)

Monday, July 12, 2010

BREAKING NEWS: PAGOCLONE NOT SUCCESSFUL.

Endo has released a statement on its website
Endo Pharmaceuticals has completed the initial analyses of the data from an ongoing pagoclone study (IP456-041). Although the study did not meet its pre-specified criteria for success, there were some trends of interest that Endo will look at more closely by conducting additional analyses of the data. The last part of this study will continue until completion late this year. A second active pagoclone study (IP456-039) will be closed in an orderly manner over the next several months. Patients participating in that study will be encouraged to discuss other treatment options with their physicians.
For further questions, please call Endo Medical Information at 1-800-462-ENDO (3636).
Endo's statement is in line with my predictions. Pagoclone did not meet the pre-specified criteria for success. Re-phrased for common people: Pagoclone was not successful. ;-) Each trial needs to set a hurdle for success before the trial to avoid shifting the definition of success after data analysis. And the open-label trial of Phase IIa is closing, but the other one is running until the end of the year. They write that "trends of interest that Endo will look at more closely by conducting additional analyses of the data". There are two interpretations, both not mutually exclusive. First, every good PR will add some positive spin or anchor of hope to soften the blow of negative news. We humans need hope when our dreams are hit. They also want to smooth out any hit on their stock price, which has not yet seen a hit by the news. Interestingly, the stock price has been very stable: see graph. Given that the revenues for Pagoclone are now much more likely to be zero, reducing the company's future cashflows and thereby reducing the company value and its equity part. If you have stocks, sell. Or short the stock, sell a future, go long a put or short a call. Second, I would not be surprised if there were pockets of real hopes, i.e. deviations in the data. Some might have responded well while others didn't.The question remains then whether there is a sub-type reacting to Pagoclone. My gut feeling is probably. Maybe for those that are borderline anxiety/panic disorder, which in combination with a low capacity speech system develop significant symptoms. But that's pure and total speculation on my part. A rigorous statistical analysis combined with deep understanding of the nature of stuttering and its traps is needed.

To be crystal clear: Pagoclone is not the wonder drug for everyone many hoped for. At the very best, Pagoclone might be able to modulate the fluency of a sub-type of stutterers. I am sorry to tell you. You will all hate me for spreading the bad news, right? ;-) Tom is just so skeptical and negative. But listen it is not my fault. I am just telling you about reality. I am not creating or causing it!

What did Maguire say in his NSA speech?

Check out StutterTalk's interview with Jerry Maguire: here. Peter and Eric manage to go through half an hour without asking the question everyone wants them to ask. So go to 30:00 to spare yourself the non-essentials which on any other day would have been interesting to listen to! Like Jerry's new book: here. And Peter and Eric interviewing the author without having read the book!

Jerry said that the trial are finished. He is bound to confidentiality agreements, and is not allowed to publicly discuss the results. However, he expects the company to release a written press release or to answer individual questions at some point. Interestingly, as he announced, he did reveal the summary results at his NSA speech, but cannot publicly repeat it. So what did he say? They must be someone of you who attended. But to be honest, I sometimes have the impression that the majority just get lost with all those numbers...

In any case, the case for a negative/null outcome of Pagoclone study is becoming stronger. Had Pagoclone been a success, Indevus/Teva would have gone big on a press release. And if it was a success, they would need to fire their public relationship manager for not having a big press release!

Sunday, July 11, 2010

In defense of pharmaceutical companies

In the comments sections, some of you criticize the pharmaceutical companies of being greedy and doing the trials for the money. Let me ask you a simple question: Would you be willing to risk your savings in trials that take years and millions of dollars to complete with the risk getting no return whatsoever? Let's take Pagoclone. Let's assume the trials were not successful. Indevus and Teva have lost millions of dollars and years of their company's life. Not only did they loose millions, but they also had an opportunity cost in that they could not invest the money otherwise.
Sure, they can make millions or even billions with successful drugs, but they need to risk a lot. The restrictions are getting greater, and more costly. Only the desire of making money, i.e. greed, makes progress possible. No money, no progress. Without greed, no medication. Society needs to reward them. Of course, you can imagine that the companies are sometimes pushing the limits. Imagine you are stuck in a situation where you have invested millions and years, how would you react if the drug is on the edge from being licensed or not? You would do anything possibly to twist the drug into the market. So it's important that government but also bloggers keep watching them, so they do not stray from the right path.
You should also consider that human beings are working in the pharmaceutical industry, and they are not worse than any of us. They spent a lot of time and efforts to get the trials arranged. They spent time in labs or behind computers to get the compounds isolated. They might have spend years and get no return...

And more Pagoclone speculations

More unofficial news by Justin who attended the conference that the Pagoclone study has ended:
After he [Maguire] spoke, he opened it up for questions, and a guy from the back of the room had asked him if he knew that the 4 year study had come to an end.

Dr. Maguire said that he did hear that they were ending the study...

The guy making the comment said that the drug has been absolutely life-changing for him, and that he received a letter and a telephone call to fedex all remaining drugs back to the manufacturer, and that the study was ending.

Dr. Maguire said that the 4 year study was ending abruptly, but another one was ongoing.
Indevus/Teva should send out a press release to stop the speculations, and they should allow the publication of the raw anonymous data so we can learn what has happened.

Saturday, July 10, 2010

Become a follower

Fine.. Not everyone wants to donate... roughly 99.9% of the readers. ;-) However, I would be very grateful if you became a follower of my blog. So you show appreciation for my work. Just click on the Follow link in the top right border. Thank you!

Pagoclone study closed?

I am getting more and more signals of a negative outcome study. Can anyone confirm this comment left by a reader? And can the reader send me an email to confirm his name? Sounds like a reliable and sensible comment... Such calls must have been made or are being made if the study turned out not to be successful. They need to inform those on the open label phase that they will not receive any more Pagoclone. So did anyone of you get a similar call?
Been on the study for 4 years...first 2 years it was a miracle drug...stuttering disappeared. Then it came back and I became immune to my dosage and they wouldn't increase my dosage. Got a call yesterday that said that the company running the study Indevus has been bought out and the new company is closing the study.

From my understanding...they weren't have great success with the drug.

Friday, July 09, 2010

Disastrous NSA key note speaker?

The choice and message of the key speaker, Sander Flaum, at the NSA conference seems extremely popular with informed people who stutter. He is the typical key note speaker, the type that the informed person who stutters hates. They never studied stuttering in depth nor do they have the intellectual and scientific ability to realize their limitations in understanding, they never worked with many different people who stutter or followed them over several years, they never attended other conferences but are parachuted in (mostly because the organizers hope to get them to give them money!), they all stutter relatively mildly or not at all, and finally talk about their glorious interpretation on stuttering even though they have no clue whatsoever.

Why don't they let people talk who know what they are talking? Or if you really want to roll in those "successful" people, tell them to talk about their experience and not their glorious interpretation!

Why don't we start a campaign that allows NSA members to VOTE WHO THEY WANT TO HAVE AS A KEY NOTE SPEAKER!

Check out StutterTalk's conference chat, and this reader's comment:
The Keynote Speaker for the NSA Convention basically said that every person who stutters can become completely ---100%--- fluent if they will commit to all the practice that is required. It is the fault of the PWS that they "FAIL" in therapy. Fluency Training is the CURE...JUST PRACTICE. EVERYONE WHO STUTTERS CAN BE FLUENT; YOU MUST PRACTICE THE TECHNIQUES.

FANTASTIC message for all the speech pathologists out there and the parents of CWS demanding that their CWS practice more in order to stop stuttering!!!

CRUSHING message for all of us who stutter who know that this is not true...

ABSOLTELY EVIL message for 1st time parents to hear...For kids who stutter to hear. Totally F***** UP!

What is the NSA Organization thinking as they choose Keynote Speakers???

I feel like making like Lebron and leaving this thing...

Thursday, July 08, 2010

Be my journalist!

Are you attending the NSA research symposium, please send me your reports live. (Either to my email tom dot weidig at gmail dot com or leave comments.) So everyone of us can benefit from your news, and you become famous. ;-)

For the brave, here are questions that you could ask Jerry Maguire to get a good debate going!

1) How did the placebo group do over the nine months?

If the effect is not negligible, why? Does this not invalidate all outcome studies in that any intervention improves the condition?

2) How much money has so far been spent on the Pagoclone trials? If the outcome is negative as I suspect, could you consider any other company taking the risks of loosing millions of dollars?

3) What's next on the pharmaceutical battle field?

4) You are prescribing medication to people who stutter at your clinic. How can you reconcile your medical practice with the fact that no medication has ever proven to be effective in solid clinical trials?

Monday, July 05, 2010

Breaking News: Pagoclone study likely to be negative

I have just confirmed that Jerry Maguire, Chief Investigator of the Pagoclone trial, has indeed left this message on my blog:
Hi, Tom. I will be presenting the results of the Pagoclone Phase IIb study at this week's NSA convention in Cleveland. I'll be available to you and your readers for any questions. Jerry
The fact that Jerry is releasing the data at the conference on Friday and not the company in a press release strongly suggests to me, among other bits of information here and there, that the outcome of the Pagoclone study is likely to be negative. Here is my prediction: Effectively, the stuttering in the Pagoclone group was not significantly reduced in comparison to the control group. That's the end of Pagoclone as the miracle drug. There is no miracle, and much disappointment for those who are desperately looking for an easy way out...

The outcome would be inline with my predictions: see my recent posts on Pagoclone. But there is valuable information in the study, like the behaviour of the placebo group over the six months. Did the measurement tools show an improvement or not? If yes, ALL OUTCOME STUDIES ARE FLAWED! Why? Because all studies will have an up-lift due to the placebo effect.

I very much hope that the company Teva and Indevus is going to release the raw data (or at least to scientists). Maybe there are some signals in the data that would give us more clues about measurement tools and possibly about subgroups.