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!" ;-)

Janus of SpeechEasy is misleading us

Misleading stutterers is not just about claiming a cure in 9 minutes, in 15 days or only when you are working hard enough. That's the obvious way to mislead. Have a look at the Speech Easy device website produced by Janus Development. They are the masters in perfection. I'll expose two of their tricks: sublime messaging, and biased reports on success. And I spare you with the go-to-clueless-Oprah-to-get-approval trick; it is too obvious.

Read the message on the main page:  Do You Want to Stop Stuttering? You are not alone. While you will not stop stuttering completely (there is no cure for stuttering), we can help you take back control of your speech, and your life. A stroke of marketing genius.  At first sight, beautifully compensate speech. As their coporate mission state: We are passionate in our mission to help people who suffer with speech disorders. They say the right things: no cure, therapy is about taking control, and they acknowledge our pain and fear. Now switch on your Karl Rove, and read the passage again: Do You Want to Stop Stuttering? You are not alone. While you will not stop stuttering completely (there is no cure for stuttering), we can help you take back control of your speech, and your life. That is what the brain reads, because that's what the brain wants to read. And, acknowledgement of our pain and fear turns on the fear and pain of the reader. Read on: You'll no longer fear social functions, avoid ordering food at a drive through, or keep quiet when you really want to speak out. Passionate about people who stutter? Or passionate about lowering the inhibition of stutterers and their families to make informed decisions?

You might disagree with me on sublime messaging, but you cannot disagree with me on the misleading presentation of evidence for efficacy. Let's bit a bit nerdy and go through the Professionals section and Efficacy/Research subsection. There are four topics: Published Abstracts, Bibliographies, Ongoing research, Case Studies, and FDA Information.

Let's start with the Published Abstracts. The website states: The treatment of stuttering and the Speech Easy fluency device are the subjects of the following abstracts of six selected published articles, and then they list the six articles' abstracts. The first five articles are from the East Carolina University group based in Greenville. Note that Janus Development, the seller of the Speech Easy device, is also based in Greenville. This is not a surprise because it is a spin-off from the university as far as I know. Are there conflicts of interests?  Should they not at least make public this relationship? There is only one non-Greenville article from a Canadian group that I have never heard of. But, be aware they have done nothing wrong, they just point us in a direction. Everyone has the right to point someone in a direction, right?

The bibliography is a misnomer as it seems to be the list of publication of the Greenville group. A simple link to Pub Medline gives a much better overview of the field: click here. I find 40 different published articles, notably from Professor Howell at University College London. The idea of the device is not new, and other groups have done efficacy studies. Why only the Greenville group's research? Again, nothing is legally wrong, right?

Let's move on to the Archilles' heel, Ongoing Research. Again, it is factually correct, but highly highly misleading. The website mentions two efficacy studies: one by Molt, and the other related to Parkinson. First, we can agree that the Parkinson study is useless in the context it is presented, especially because other relevant outcome studies are completely ignored! So let's look at the Molt study. The Molt study started in November 2004 (according to press release). It is funded by Janus and there is still no published article four years later.  I attended a lecture where he presented preliminary results, at the Dublin IFA conference. His talk and approach to research did not strike me as particularly rigorous, especially the way he represented his data graphically was very atypical to a trained scientist. He is more a speech therapist than scientist and intended well, and clearly warned that the results are preliminary. There were only 12 patients. What happened afterwards? I vaguely remember that someone told me that he was ill. Does Molt agree with the way they are characterizing his research. The key question is: Why do they not mention the other studies that have started after Molt's study and that are published?  The answer is easy: the result is less than promising. Forget the Molt study. They should publish those two recent studies.

Effects of the SpeechEasy on objective and perceived aspects of stuttering: a six-month, Phase I clinical trial in naturalistic environments. Pollard R, Ellis JB, Finan D, Ramig PR. J Speech Lang Hear Res. 2008 Aug 11.

The effect of SpeechEasy on stuttering frequency, speech rate, and speech naturalness. Armson J, Kiefte M. J Fluency Disord. 2008;33(2):120-34. Epub 2008 May 7.

They are creating the illusion that the device is well supported by evidence, and that the actively seek the evidence. It is obvious that they don't. They are effectively hiding those two articles from the reader by not quoting them, and thereby mislead people. But again, it is legal. Every single statement is factually correct.

Let's talk about the last two topics briefly. Case Studies: They are reports from therapists. Most refer to short-term effects: we tried it and that's what happens. I wonder how many therapists wrote positive fluency  reports about me, and here I am...   FDA Information: As far as I understand, the FDA says that the device is not causing death or something like that and so you can sell it. Nothing about efficacy, but it sounds good.

To summarize, Janus is clearly misleading customers by not referring to ALL published outcome studies. 

If you are interested in the latest review, check this article and discussion by Ellis and Pollard, the researchers with cool sunglasses.

Important study by Onslow/Packman group

I am known for being highly critical of the Onslow/Packman group for their outcome trials (especially the pseudo random control trial) and other research conducted to prove Lidcombe treatment efficacy. However, this time I have to praise them for their recently published article: Reilly, Onslow, Packman et al. Predicting Stuttering Onset by the Age of 3 Years: A Prospective, Community Cohort Study. Pediatrics. 2009 Jan;123(1):270-277. See abstract here and below:

METHODS. 

Participants included a community-ascertained cohort of 1619 2-year-old Australian children recruited at 8 months of age to study the longitudinal development of early language. The main outcome measure was parental telephone report of stuttering onset, verified by face-to-face expert diagnosis. Preonset continuous measures of the child's temperament approach/withdrawal) and language development were available. Information on a range of predictor measures hypothesized to be associated with stuttering onset was obtained (maternal mental health and education levels, gender, premature birth status, birth weight, birth order, twinning, socioeconomic status, family history of stuttering). 

RESULTS. 

By 3 years of age, the cumulative incidence of stuttering onset was 8.5%. Onset often occurred suddenly over 1 to 3 days (49.6%) and involved the use of word combinations (97.1%). Children who stuttered were not more shy or withdrawn. Male gender, twin birth status, higher vocabulary scores at 2 years of age, and high maternal education were associated with stuttering onset. The multivariable model, however, had low predictive strength; just 3.7% of the total variation in stuttering onset was accounted for. 

CONCLUSIONS. 

The cumulative incidence of stuttering onset was much higher than reported previously. The hypothesized risk factors for stuttering onset together explained little of the variation in stuttering onset up to 3 years of age. Early onset was not associated with language delay, social and environmental factors, or preonset shyness/withdrawal. Health professionals can reassure parents that onset is not unusual up to 3 years of age and seems to be associated with rapid growth in language development.

I do not have the full article but here is the key message:

1) The incidence is 8.5%. We can translate this into a recovery rate if we assume that 1% of adults stutter. 11.8% of 8.5%  do not recover and become the 1%, which means that 88.2% of kids who stutter recover. There will be some statistical error margin and the 1% is an estimate, but the recovery rate should be between 85 and 90%! This is high compared to other studies, but not too far from others sources which refer to a 70 to 80% recovery, and their study should be very reliable, especially considering the very decent sample size of 1600 and their expertise in identifying stuttering.

2) There is no clear and strong correlation with any hypothesized risk factors. They did find higher incidence for male, and other factors. But we need to be careful. I need to have a look at their statistical analysis, given that many variables were tested for and my generally bad experience in former statistical analysis by the group and the field in general. I would not be surprised if only the factor male is very significant.

Here is the implication in my view:

For 1) It must now be clear to everyone that the recovery rate is very high. No wonder therapists can claim such wonderful successes in treating children that would have recovered anyway. Ironically, the BSA and Leys wrote in support of early intervention by claiming a 90% success in treatment: see here. Well you could well get this without treatment, too! (You can still get out by arguing that only severe cases get to treatment where recovery rates are much lower.) The high rate supports my call for considering the natural recovery rate in outcome trials for kids, and this has not been done properly yet. They are all deluding themselves with their outcome trials. Oh and I forgot to say that the famous Lidcombe "random control" trial has also a recovery rate of 84% which fits nicely with their latest article if you assume no treatment effect for Lidcombe!

For 2) It is no surprise to me at all that there is no correlation, and this fits perfectly with the picture that kids start stuttering due to some internal mess-up, either genetic and/or neurological damage. It might correlate to some stages of development but only because this stage happened at the same time when the brain puts it all together to produce automatic speech.

It's the impact, stupid!

A common fallacy in ethics: well intended actions have a positive impact. If you mean well, your actions might well have negative consequences instead of the well intended. For example, a mother whose son is heavily indebted intends to do good by helping him out financially, but in fact only supports his bad behaviour. Or, an ecologist wants to eliminate nuclear power plants with the well intended aim to protect us from environmental damage, but what are the consequences? Bigger reliance on air-polluting coal plants.  Are other forms of energies better? I just read about the devastating consequences of a well-intended tax law by the German government: they support solar cells on private houses in cold Germany which has provoked an increase in the price of solar cells such that some very sunny African countries cannot afford them any more! It is a big big problem in our complex world as few see the hidden strings that intertwine our world: cut one and you affect others.

We must judge actions not by our intentions but by their impacts. Let's look at Leys' effort to make google filter out cure adverts for stuttering treatment. It is a well-intended idea in principle but what will be the impact?

Positive impacts:
a. The public hears less about cures on stuttering which helps us to change public perception on stuttering,
b. serious therapists can better compete with crackpot ones
c. the lack of cure adverts will force stutterers to study different offers in more detail.
d. stutterers will have less pressure from families or friends who refer them to these offers.
e. shows that the individuals in the stuttering community and NOT the consumer associations can make a difference and take on crackpots: using blogs and youtube.

Negative impacts:
a. less free speech on commercial ads hereby strengthening the establishment's view. What if someone suddenly found a cure, can he not advertise it?
b. we only hit the cure crackpots, but are treatments like fluency devices, medication, stuttering treatments proven to be better than those crackpot treatments? They might both be ineffective!

Null impacts (also negative because we could have spent our time otherwise):
a. Will the We will cure you not be replaced by I do not make cure claims but if you work hard enough you can achieve fluency? Is the cleaning lady better off as a facility assistant and the secretary happier as an executive assistant? Is it not the same? In fact, maybe we can detect crackpots better now, because they are the only one who make cure claims?

b. crackpots find always find other ways to trick people.
c. less stutterers will start a therapy because there is no cure claim to motivate them.
d. TV shows will still show cure-like therapies.

Decide for yourself. If you want to hear my opinion, I don't care about my analysis. It's about sending a signal to everyone who is dealing with stuttering: crackpots, therapists, researchers and the world. Get your act together: present the facts, check your evidence, engage in real debates, and take on board feedback. Or you get into trouble with us! Especially to the professionals, don't get too comfortable just because you can call yourself therapist or researcher! Your impact counts and not what you are.

How do we change Google's mind?

I have just listened to StutterTalk's interview with Leys Geddes. Leys is currently campaigning for google to refuse adverts that claim cures for stuttering: see also here and here . His arguments have convinced me that it is of utmost importance for us as a community to fight these myths. The Internet is everywhere and it shapes public opinion. We need to take over the control of the message, and educate the others. Every ad on cures that comes up during a search re-enforces the view that stuttering is easily curable and that we do not work hard enough to cure it. The desperate ones will fall for the ads, and our mothers or grannies will pester us to enrol!
How can we change Google's mind? I cannot believe that they feel strongly about this. Revenues will hardly be affected. Ever heard of Google's maxim? Don't be evil. It is probably just one person within who currently blocks it. Maybe it was Friday afternoon and she wanted to start the weekend break early. Maybe she doesn't know someone who stutters.
If you have any idea or inside contacts to google, let me or Leys know. If you are a self-help group close to the headquarters, go there with a sign post saying STOP CURE ADVERTS! :-)

Can we trust pharmaceutical trials?

Ora sends me this interesting email:

You might be interested in this article from the New York Review of Books, titled “Drug Companies & Doctors: A Story of Corruption” (http://www.nybooks.com/articles/22237?email)

A main point of this article is that positive results are far more likely to be published than negative results. Although this article concerns the distorting effect of drug companies’ sponsorship of drug trials on the published results of those trials, the same effect is likely in other fields (such as stuttering research) because of the tendency to publish positive results and ignore negative results. And of course, even without the corrupting influence of the Big Pharma money, stuttering research is pervaded by conflicts of interest simply because people have a personal interest in positive results.

Here are a couple of highlights (italics added):

• “In view of this control [the control that drug companies typically have over drug trials] and the conflicts of interest that permeate the enterprise, it is not surprising that industry-sponsored trials published in medical journals consistently favor sponsors' drugs—largely because negative results are not published, positive results are repeatedly published in slightly different forms, and a positive spin is put on even negative results. A review of seventy-four clinical trials of antidepressants, for example, found that thirty-seven of thirty-eight positive studies were published.^[8] But of the thirty-six negative studies, thirty-three were either not published or published in a form that conveyed a positive outcome. It is not unusual for a published paper to shift the focus from the drug's intended effect to a secondary effect that seems more favorable.”
• “Many drugs that are assumed to be effective are probably little better than placebos, but there is no way to know because negative results are hidden. One clue was provided six years ago by four researchers who, using the Freedom of Information Act, obtained FDA reviews of every placebo-controlled clinical trial submitted for initial approval of the six most widely used antidepressant drugs approved between 1987 and 1999—Prozac, Paxil, Zoloft, Celexa, Serzone, and Effexor. They found that on average, placebos were 80 percent as effective as the drugs. The difference between drug and placebo was so small that it was unlikely to be of any clinical significance. The results were much the same for all six drugs: all were equally ineffective. But because favorable results were published and unfavorable results buried (in this case, within the FDA), the public and the medical profession believed these drugs were potent antidepressants.”

Mmmmerry Christmas!

Speakers at IFA 2009

The list of the key note speakers of the International Fluency Association (IFA) congress in Brazil in August 2009 is public: see here.

Claudia de Andrade: The familial profile of stuttering

(Department of Physiotherapy, Communication Sciences & Disorders and Occupational Therapy, University of Sao Paulo, Brazil)

Elizabeth Harrison: Technology in stuttering treatment for children and adults

(Department of Linguistics, Macquarie University, Sydney, Australia)

Luc De Nil: Multiple facets of stuttering: Insights from brain and behavioural research

(Department of Speech-Language Pathology, University of Toronto, Canada)

Suzana Jelcic Jaksic: Comparing the needs of consumers in developing and developed countries

(Children's Hospital, Zagreb, Croatia; ISA)

Registration for talks and seminars is February 28th, so you still have time to get your proposal done. I am not sure whether I will attend or not. It is a lot of money to go to Brazil, and I am self-financed. I probably decide in the last minute, as usual.

Luc de Nil is the only scientist talking. He is a professor in Canada and has done a lot of brain imaging research on stuttering. He will talk on brain and behavioural research. Certainly his brain research is interesting; his students and research staff currently look at dual tasks performance in stutterers. However, I am more sceptical on the recent research on temperament which he supervises; I hope he is not going in that direction in his talk. Then, we have Elizabeth Harrison talking on technology in treatment, which could be interesting. However, I hope she is not diverting to Lidcombe outcome research on which she worked and which she not convincingly defended in an on-line debate I recently had with Susan Block: see here.

Bad Google

According to Leys, google refuses to block adverts with cure promises for stuttering. Though having read his emails to google, he could maybe have been a bit more diplomatic:

Following various email exchanges over the last two weeks, Google have today announced that they will continue to allow advertisers to claim that they can cure or eliminate stammering.  For example, one current Google AdWords ad reads ‘Breakthrough cure takes 9 minutes - 100% guaranteed - eliminates cause’.

As the root cause of stammering is a neurological condition, it is not possible to 'cure' stammering, in the accepted medical sense of the word.  So, whenever they say this, Google advertisers give false hope to those who stammer, and give people who don't stammer the false impression that stammering can be cured very easily.

Respectable healthcare companies carry out independent trials on large numbers of people, over long periods of time before they are allowed to claim any kind of benefit for their products or services.  It should be the same with stammering.

Google AdWords have a general policy against what they describe as 'miracle cure' advertisements.  But, although they check the wording of ads submitted for ‘specific diseases such as cancer, AIDS, psoriasis, arthritis, fibromyalgia, cystic fibrosis, multiple sclerosis, leukaemia, bipolar and schizophrenia’, they do not do so for ads claiming to cure other conditions.  Thus ads which claim to cure stammering will still be approved to run.

Google say that their terms and conditions make it clear that all adverts must not violate any applicable law, regulation or code of practice (including the Committee of Advertising Practice Code in the UK, which is enforced by the Advertising Standards Authority).

These kinds of ads, however, clearly DO violate the UK CAP Code, because the ASA have already taken action successfully against one advertiser who was claiming to cure stammering - and is keen to act against others.

Unlike most advertising mediums, Google take no responsibility for the content of the advertising they feature.

Earlier today, I replied to Google, asking to arrange to speak directly to their Policy Team.

I then emailed the Stuttering Foundation of America and the NSA to let them know the situation.

I then reported Google to our Advertising Standards Authority.

I have also contacted various journalists who have been kind enough to support our campaigns in the past.

It started with a whistle

Apparently, Orangutans are able to whistle voluntarily leading to speculations that it is a precursor to speech and language: see here. Maybe early humans first started to whistle, associated a piece of information to a specific whistle, and created their within-group set of whistles. At some point, different whistles were combined to form sentences and language. First, speech was just whistles and all attention was on the whistle: so you have a thought you want to communicate and then you whistle it. Then speech production became more complex and thinking and speaking happened at the same time, leading to automization of speech. You do not have to focus on speaking but just think and it comes out automatically. And stuttering is a problem with this automatism. So first were the whistles, and when humans stopped whistling they started stuttering! ;-)  (Though, I have to admit that I am a bit puzzled why we don't still whistle our speech if the speculation is correct. We could do that, no? Maybe it is not possible to create as many different whistles as we are able in our human voice?)

Vancouver Film School Documentary

Check out this well-done documentary movie on stuttering by Vancouver Film School students through the following VFS production program:

Director Bruce Oothout

Director of Photography Shane Smith

Producer Youssef El-Khoury

Editor Raymund Santos

Political correctness madness

A writes in response to my last post:

This is a horrible idea. It frustrates me to no end that people think that stuttering is something that you can "overcome". To add a competitive edge to it will make those who feel a great shame and pain about their stuttering feel even worse. The movement should be towards a greater acceptance of stuttering in the society. Not changing the stutterers to fit the society's expectations of "normal" speech.

A's statement is a good example of the political correctness madness that distorts current day thinking.

First of all, A asks for greater acceptance of stuttering in our society, when in fact he or she is not even able to give his or her real name but chose to remain anonymous! A puts me down for thinking the politically incorrect, when in fact I do a million times more about greater acceptance and transparency of stuttering by putting my life (including my stupid picture :-) and thoughts on the Internet. Everyone can read my blog including future clients or employers.

Second, I refuse the notion that we are helpless victims of a bad society that puts us down (blame-it-on-society syndrome) and creates the handicap that we experience. What non-sense! The vast majority of people only want to help us, but do not know how. In fact, we do not even know ourselves! Yes, there are some who might laugh or not be accepting of our handicap. So what? Is such behaviour so special? No it is a generic feature of humans. People (including and especially stutterers) laugh or are not accepting of all kinds of things: political attitudes (he is a neo-con republican), beliefs (he believes in the bible), weight (she is really fat), height (he is so small), beauty (she is really ugly), social status (she is white trailer trash), and so on. And yes there are discrimination in the job market. Why? Because stuttering does not help business. So we need to convince our employers that we have compensating strengths or that stuttering is not relevant to the specific job. The same is true for small people, dumb people, over-weight people, and so on.

Third, A seems to imply that somehow society creates stuttering. I say: Complete Delusion. Our genes and other influences have caused our stuttering in the first place with or without society. And we all feel a physical handicap with or without society. We cannot say what is on our mind all the time like a child without legs is restricted. It is not imposed by society, and it is physically experienced. Society reacts to the handicap, and its reaction is to 95% determined by our reaction to society! It reminds me of the talk shows with obese people who say things like "I want people to accept me how I am", "I am happy who I am", and "men find big women sexy", and of course it is society that makes us feel bad. Come on. The vast majority of men and women who are overweight hate it and want to be slim. Not because society wants them to (though it adds pressure), because they want to because you have restricted body movements, you are always out of breath, you have a very restricted sex life or none, diabetes and so on. They are deluding themselves: "I can't loose weight and now I just tell myself I actually feel good about how I am". I am not going to say that I feel good about stuttering, because I do not feel good about stuttering because I experience a physical handicap. What I can say is that I acknowledge that I stutter and that the propensity to stutter will stay with me for the rest of my life. And I also do not accept that I cannot improve my speech. I can if I work on it.

Fourth, the movement should not be about greater acceptance, but about greater knowledge about stuttering. I am not sure it is healthy for society to accept us like we are; should be accept overweight people to be overweight? I do not think so. We should help everyone with a handicap to improve as much as possible and educate others about the handicap, but how can I say something is OK when it is not OK. My speech is not OK, I cannot say what I really want to say. (If I only stutter slightly but say exactly what I want to say, then it is OK for me personally.) I am just deluding myself if I say it is OK. Not a single person in their right mind will listen to stuttered speech and say: Well that's OK even though they might publicly say so. I want them to think: "That's not OK, but it is not his fault. He is a person with strengths and weaknesses of which stuttering is one. I admire his courage to live life despite his handicap and if I can help him to improve, I will."

We need more competition!

Becoming more fluent is hard work over a longer period. You can also say that becoming fluent is like achieving mastery in a sport; the skill of controlling our propensity to stutter. How do you become a top tennis player at your local club? You need to be focused, live in the right environment, have spare time, be motivated, have a competitive spirit, some talent, receptive to coaching and ability to practise regularly and hard. For example, I am a strong tournament chess player and spent hours and hours playing chess. Much more than I ever spent on treatment. Is it no surprise that I am not a master in more fluent speech? Why did I not spend more time on stuttering? I would happily be the worst chess player ever for stable fluency.

I guess one reason is that the rules of chess are laid down. You know what you have to do to win, and you know what you have to study to become better. And most importantly, you have constant competition. Other people are challenging you, and I do not take it well when I loose after a hard fought hour-long game! It motivates me to get better and beat my opponent next time! And I know just how bad I am, and no therapist putting on a positive spin. In stuttering treatment, there is no competition. There is no declaration of a win or a loss; you have to make the judgment call.You have only yourself to fight against, or if you wish against the unknown enemy that makes you stutter.

Maybe we should establish a stuttering league where stutterers can compete against each other. In speech, reading and debate contests. We could also have a first-block-out competition. Two people are talking and the first who stutters looses. Another competition could be the-best-secondary-symptoms contest, but I guess that's a bit counter-productive. Well, we can just change it to the-best-simulated-secondary-symptoms contest, and that it is about voluntary stuttering. How about establishing a rating system? So if you win, you get extra points, and the more so the higher rated your opponent was. We could even have national teams that compete against each other. How about club names like Stuttering Sox, Stuttering United, Real Stuttering?

I tell you already you now. If you ever compete again me, you will loose! I am the best! ;-)

Connectionist modeling for stuttering?

I am currently doing a postgraduate Open University course on Exploring cognition: damaged brains and neural networks. The course explores two methodologies to study the brain: case studies on damaged brains, and connectionist modeling. We learn much more about the brain when it does not work properly as opposed to when it works well!

Think of your car. After any breakdown be it the battery or gears, you know much better how the damn thing really works! Or go back to the pain and handicap from your last toothache or back problems. Now you really know what and how teeth or backs do every single day. Stuttering is no different. A speech scientist should see the disorder as a blessing. Any scientist who claims to know how the brain speaks must be able to explain why the brain does not speak fluenty for some people. In fact, stuttering is key to understanding normal speech production. If we know why we stutter, we also know much more about the normal brain processes underlying speech and related activities.

The second methodology is connectionist modeling which models brain processes by constructing mathematical models that mimic features of networks of neurons and "injures" them to see the effects. I do not know of any group working on this topic in stuttering. I vaguely remember Pete Howell, professor at University College London, trying to get a group in connectional modelling to work on stuttering. The Boston group around Prof Guenther does mathematical modeling, especially his PhD student Oren Civier: see here. However, they use the differential equations approach which is a very different modeling technique. Ludo Max has worked on models together with them, but I think they agreed to disagree on the right approach. Within the research community their work is completely ignored, simply because no-one understand what they have done or are doing! It took me some time to understand what they have done, but I would need to play around with the equations myself to give good feedback on the usefulness of their models. My intuition tells me that the models are too simple to capture the essentials, and that even if a model reproduces the essentials of stuttering, it does not necessarily imply that it is implemented in the brain in this way.

Easier said than done: what makes someone implement change?

What makes someone change? Here, I might align myself with the soft thinking side of many therapists. Science says relatively little about what creates change in a person. I have seen this documentary on this slimmed-down woman who lost 30 kilos and has kept her new weight ever, for several years. The journalist asked her: So what has made you change? She said that she was on a hike and just couldn't make it up the hill without constant stops. And at that moment she swore to loose weight by keeping on walking up this hill every weekend until she can do it without stops. And she never stopped pushing herself, and her weight dropped slowly. She also said that it was not about the diet because any sensible diet will work: eating a bit less, a bit more healthy, and exercise more and keeping it at this pace for ever will do the job.

What creates such a moment that sets in motion such a change? I am not sure. But it is not about that moment. That moment is only the start, the first spark. If you do not have the dried-out land with a hill next door, hiking- friendly social setting, competitive attitudes, friends with similar aims, no life-changing events like death of partner, the right genes, the ability to change quickly, right personality traits, and tools like sensible diet, the spark cannot live on and create a fire. You cannot model such behaviour in a sensible way in the same way as it is difficult to predict revolutions, wars or economies. 

So how can you as a therapist induce change? I have no clue. I fear that the answer is that they cannot. Maybe induce the spark, for who is not excited about starting a potentially life-changing treatment. But will it light the fire? Only the patient can. But actually not even the patient can. The time and place must be the right one. And then the right spark at the right time will light it up. However, therapists can help in that they create treatment that requires as little change as possible to be successful. Like a pharmaceutical treatment. Or improved behavioural therapies.

Therapy is an implementation issue

How do you win the 100 meters? Run faster. How do you become slim? Eat less. How do you pass an exam next time? Study more. How do you stutter less? Speak slower, avoid secondary symptoms and make more pauses. The issue is not in that we do not know what to do, but in us not being able to implement what we should do.

Live from ASHA

StutterTalk.com has broadcast from ASHA: see here. Listen to the first 15 minutes. It reminds me of giggling teenage girls. A brilliant snapshot of the atmosphere in which therapists interact. Laden with the following commandments:

• do no criticise your colleagues
  
• always praise your colleagues
  
• always accept everyone's ideas (even if wrong)
  
• never publicly admit that you have made a mistake
  
• we are all a big family of friends
• smile, smile, smile, smile, smile, smile, smile, smile, smile, smile, smile, smile.
  
• displeasure is shown by a shorter-than-usual smile

These taboos cause discussion rounds with most therapists to be completely and utterly useless unless you talk to them one on one! And filters through to research and debate on research. There is this immense strong emotional desire for harmony and peace (though if you know them personally, you realize that many don't like each other and bitch all the time! :-). Listen to the first 15 minutes again. Not a SINGLE CRITICAL THOUGHT on their own work. Their sentences contain virtually no information. Their workshops are brilliant, wonderful, I have learned so much, exceptional experience, I was so lucky to have X, amazing exhibition, so valuable, though i am confident of my skills I learned so much more. Let's do the reality check. Let's now compare what people who stutter write to me in tens and tens of emails: I am still stuttering (that's like 95% of emails), I am desperate, speech therapy was pretty useless for me, she saw me fluent but then my stuttering came back, and the only thing she did was smile all the time.
As I have said many times before, this atmosphere of forced harmony and peace is counter-productive to real constructive debates, because therapists are scared to speak out and from the beginning as students their brains are forced into into intellectual schizophrenia as it has to spend 99% of the resources in adhering to the prevailing social atmosphere (what should or can I say in this situation, how do others expect me to react) instead of speaking out (what do I think and what do I feel)
And regarding StutterTalk, from now on I call them the Larry Kings of stuttering. Whoever you are, from saint to dictator, you feel comfortable in their interviews, and leave with your world view intact!

Learn more about our brain

Looks like an interesting website on the human brain: see here. Sorry for the few posts, I am preparing an exam with 3000 pages to learn and understand...

Two types of genes?

I have spoken about my view before, that stuttering might well be a two-phase disorder, see here . Adult stuttering is the result of causes that lead to onset of stuttering and causes that lead to non-recovery from onset of stuttering. Maybe this structure extends to genes. There are stuttering genes and there are recovery genes. Put yourself in nature's shoes, you have all these early humans stuttering and it affects survival rates. Nature can either select out the bad stuttering genes, OR it can select in good recovery genes. If we assume stuttering is only genetics, then from 100 babies 5 have the stuttering genes, and 4 have recovery genes, which leaves us with 1%,  the adults who stutter. The picture is of course more complicated, because it is not 100% genetics but you get the twist. If this dynamics is dominant, the search for genes will be more complicated, because currently the trait is adult stuttering whereas the trait should really be ever-stuttered-as-a-child.

ASHA2008

The American Speech and Hearing Association (ASHA) holds its annual meeting End of November: see here . It is a very big conference, and a small part of it is on stuttering. I never went. Too expensive for a non-member. I was unable to get the program from the web. If you can find it, let me know!

Myth Creation

This cartoon illustrates well myth generation and it is no different in stuttering research. Through subtle changes of findings, summarizing of findings, and discussing based on these derivates, the story changes. Whenever you hear any statement, try to follow it back to the roots and you will be shocked to see that in 99.99% of all cases it is far more complicated. The absolute climax in my life was when I asked a therapist on the source of a claim and she referred me to the British Stammering Association (BSA). And I suddenly realized that as a member and chair of the BSA research committee I/we were actually her source of something I never heard anyone in the committee claiming let alone believe in!

Obama a stutterer?

Obama is at best a marginal stutterer. He just has a tendency to use fillers when he is under stress or tired. Maybe his brain is slower to give him the words he needs and so he uses fillers. He just has to train himself to slow down a bit, and I think this is what he has done recently. What is your opinion?

(Thanks for Dave for the tip).

Blog from research team

The research team at the Brain Imaging Lab of Columbia University, New York State Psychiatric Institute, had an interesting new idea, namely to create an Internet blog which aims to inform and recruit stuttering adults and children for brain imaging studies and reporting on its findings. I have already written this post on them. It is always great to have new independent team working on the neurosciences of stuttering, and please if you live in the area get in contact with them and get them in touch with self-help groups.

Did Dracula stutter?

I will be in Romania from Thursday to Sunday visiting Timisoara, Sibiu, and Brasov, and checking out whether Vlad Dracula stuttered and whether being impaled does really make you more fluent. If you are living in the region, let me know and we can meet up.

Good initiative

I 100% support Leys Geddes' initiative to fight claims of cure without any substantial evidence. (Though I still disagree with his early intervention "cure" claims! :-) If you know of any such cure claims, please send Leys or myself an email. Please also check out my Crackpot Posts highlightening similar issues.

Hello, Tom

...

We’ve all seen ads claiming to cure or eliminate stuttering. But as my company does a lot of consultancy work in the UK, in healthcare marketing, with big companies like GlaxoSmithKline, I know that the words used in advertising, and particularly in healthcare advertising, are normally very carefully written and policed.

So my feeling for some time has been that any organisation which claims it can cure or eliminate stammering gives false hope to people who stammer and gives people who don’t stammer the false impression that stammering can be dealt with quite easily.

Not only is the word ‘cure’ not used by speech therapists, but also it is not used in any other form of healthcare advertising, for any other condition, of which I am aware. No company, for example, is allowed to claim it can ‘cure’ even something as simple as a cold.

We had a Trustees Meeting of the BSA in the summer and discussed this issue. It was agreed unanimously that I should contact all the UK advertisers who are making doubtful claims and ask them to reconsider. If there was any disagreement, I would then refer them to our Advertising Standards Authority who, I know, are keen to stop advertisers making doubtful claims.

This simple plan is working out very well: all except one of the UK advertisers I have contacted so far have agreed to stop using the words ‘cure’ or ‘eliminate’ in their ads. The one which disagreed was passed to the ASA - and they agreed with us, and told them to stop it.

But a lot of ‘cure’ claims are being made in other countries and, with the increasing use of the web as an advertising medium, this can spill over into all other countries.

If you stutter, and the frustrations are immense, you might reasonably go to Google and enter ‘stutter cure’. You will then be greeted by a massive list of doubtful claims. Here are some examples:

- Loggita, who claim a 100% cure for stuttering in 25 days
- StammeringFree, who offer a stammer no more’ treatment, effective in 97% of cases
- JustBeWell, who will cure your stutter
- Stop Stuttering Secrets can cure you in three easy steps
- Stutter Cure, who, as you might imagine, will cure your stutter

This kind of slack and easy-going culture also affects the media, so that when they get served up a good story by the PR department of a stuttering ‘help’ organisation, they think they can talk about ‘miracles’ and ‘cures’ for stuttering, as everyone seems to do the same. And nobody stops them, because everyone is keen to sell their stuff, hype the outcome and give us a good happy story - and, hey, nobody does anything to say they shouldn’t. If you now put ‘stuttering cure’ or ‘stuttering miracle’ into YouTube, you’ll see what I mean.

What is coming up?

Not much is happening at the moment. Here are a few future events that should happen at some point. In genetics, Drayna's team is still working on tracking down genes in stuttering families and the stuttering population. I would expect results within the next year. In brain imaging, we should soon hear more from Ingham and Fox's team, and the groups in Oxford (Watkins) and in Paris. And the Finish group with new scanning technology. And others. And in treatment trial, Franken's group is comparing Lidcombe and an alternative, demand and capacity treatment. They have now 66 kids registered and are going to 100 or more I believe. But it will take more than a year before the first results I would guess. Then Ingham's group is also running a trial on their treatment for adults. And Onslow's group is running a study on kids before they start stuttering.

Placebo or not?

Ora from New York City sent me an interesting article on the use of placebo by doctors: see here. The article explains that many doctors are using placebo (pills without any effect on the condition) to improve patients' well being by exploiting the placebo effect. The placebo effect is quite powerful. For example, let us take 900 patients with chronic headaches and divide them in three groups and give them either: nothing, a pill that does not contain an active compound, or Aspirin / Paracetamol. The winner is Aspirin / Paracetamol, but the second place is not shared but won by the placebo pill even though it contains no active compound. How is this possible? Here are possible explanations: you convince yourself that you feel better and override your body's feedback (it is a bit like putting your headphones on mute for 20 seconds when your girlfriend or parent launches into a tirade! :-), you feel better and more confident and your brain might release pain-killing neurotransmitters (putting yourself on drugs or natural painkillers), and so on. Placebo works better for some conditions than others.

An interesting challenge is the following: so if placebo works well, should doctors not use placebo, i.e. tell their patients that a pill works and then it works! Most alternative medicine is probably due to the placebo effect: you go to the practitioner, s/he talks to you, makes you feel better, and then gives you a placebo which he and you of course genuinely believe is working. And in the end it really helps. That's the paradox.

How about stuttering? There is a clear effect in the drug trials. I am convinced it plays a role in altered auditory feedback devices and conventional speech therapy. So does this mean that we should not use them? Someone could argue: Well they give more fluency, so who cares that it is placebo! My answer would be: yes short-term fluency gains but not long-term. And that's the key issue: placebo works well in the short-term.