Wednesday, September 30, 2009

The faces of stuttering

My name is Tony and I live each and every day with a stutter that I have refused to let hinder my personal or professional endeavors.
(Make a statement. Send me your picture at tom dot weidig at gmail dot com! A picture and sentence on how you relate to stuttering!)

Tuesday, September 29, 2009

Join the fight! Hunt Curers!

Bloodthirsty Leys Geddes is on the hunt against. This time it's against YouTube videos claiming a quick cure for stuttering. We need to fight the curers, those evil people who put up promises of cures. The curers are our enemy. I am all for free speech (as you can see from my leaving nearly all comments on my blog undeleted!). So let's follow our Dear Leader in flagging the cure videos and leave a message of warning to fellow stutterers.
Tom, since we at the BSA - and you too - have been cracking down on those misleading stammering treatment claims, featured in advertisements, mainly on Google, a lot of these snake oil salesmen have migrated to YouTube, whey they seem to be allowed to make all sorts of claims, and no one is doing anything about it. So, as a part of our International Stuttering Awareness Day celebrations, we are encouraging our members to take action. But, even if your readers are not a member of the BSA (yet), they can still join in.

Examples of these misleading videos come up if you search on YouTube for phrases such as ’stammering cure’ or ‘stuttering cure’.

To help YouTube understand that videos advertising a stammering cure should be taken down, click the 'Flag' link below the relevant video. When you click the link you get a drop down menu. The most appropriate flagging option is usually 'Spam', then choose the 'scams/fraud' option. Use this when, for example, the video is a blatant ad for a treatment for which there is no supporting data.

Alternatively - or even additionally - you could post a comment on videos making doubtful claims, by simply saying, for example: "This claim is misleading. There is no instant cure for stammering."

You might also come across videos which show the, er, 'mickey' is being taken out of someone who stammers. In these cases you might want to flag them as 'Hateful or Abusive Content' - 'bullying'.

For more information, see And happy hunting!

Monday, September 28, 2009

Two stuttering talks in France

At the congress of the French SLTs on October 6th, there are two talks on stuttering: see here.
Bégaiement et langue des signes; réflexions autour d’une étude de cas.

Les bégaiements : nouvelles perspectives.
Données neuroradiologiques, génétiques et pharmacologiques.
I find it rather unfortunate that Dr Monfrais-Pfauwadel only speaks for 15 minutes on the neurology of stuttering. Then again in a country obsessed and possessed by psychoanalytic musing on case studies in correct Academie Francaise grammar, ethnically pure words and elegant style, fifteen minutes real science is better than nothing. The first talk is a case study on someone who is deaf and stutters.

Case studies can be sometimes interesting for science, but they are always interesting for our instincts. We love to watch out-of-the-ordinary stuff. My mind now fills up with Pigalle peep shows, the bearded fat lady from a turn-of-the-century fair or this poor  four legged guy from the Guiness book. Or who doesn't love the before therapy video of a heavy stutterer and the after therapy of the fluent cured person? Freak shows (see picture above) are always popular, aren't they? In any setting...

Sunday, September 27, 2009

Saturday, September 26, 2009

Talk in Zagreb

I am going to give a talk in Zagreb to the Croatian Stuttering Association organized by Suzanna. I am currently in Belgrade (Serbia) staying at my girfriend's, and we will extend our original short-trip to Bosnia with a one-night stay in Zagreb.
I will talk on Neurological vs. Psychological: How Does It Fit Together? I have posted an earlier version but this new one is with more details and nicer graphs. I am thinking of writing a proper paper with formulas and references and so on... ;-)

So if you live in Zagreb, I hope to see you at the talk.

Friday, September 25, 2009

Epigenetics in stuttering

A reader questions whether epigenetics plays a role in stuttering. Here is my quick introduction. Each cell has a DNA molecule which is a very very long chain of genes. The genes are the instructions to the cell on how to produce proteins, the building blocks of our body. At any moment a cell is only reading certain genes to produce proteins because these are the proteins the cell needs now. Thus two people with identical DNA might not express exactly the same genes because due to environmental difference the cells might be compelled to use gene A or use another gene B or none. For example, mice with a certain mutant gene leading to memory difficulties in normal environment recover from this memory dysfunction in highly enriched environment with lots of toys to play with.

The message is simple: Our DNA determines what proteins are produced in our body but the environment colours the cells' choices. Think of the DNA as a library with cookbooks (instructions to make meals) and of the environment and the cells as the readers influenced by their surroundings on the choice of the cookbook. You can only cook a meal from the cookbooks, but you have the choice.

Back to the reader's question. Does epigenetics play a role in stuttering? My answer: I don't know! Probably only marginally in some cases.

Thursday, September 24, 2009

Measuring treatment success

A reader commented:
Before Treatment: Oh, please, show us how you stutter....let your stuttering come out. 25% stuttering.

After Treatment: Now, we are going to tape record you reading a passage. 1-2% stuttering.

If you had spent $2000 going to a treatment program and the treatment director calls you for a follow up after treatment, wouldn't the PWS be afraid to show too much stuttering and just pick words carefully.

This is very true, even if you don't tell you patients this, your patient will intuitively think that that is what you expect. And even if you tell them not to think this way, their brain will. It is a real problem. It is the belly phenomena. Why are you here? Well, I have a belly and you show it. At the picture afterwards, of course you push it back your belly...

Gareth: misguided and misinformed by others

I have been the target of outrage for daring to highlight the fact that a journalist says that their hero Gareth Gates is in fact stuttering again. And for suggesting that his openess on stuttering and work on his stuttering is mostly a reaction to his circumstances and advisors; he had no other choice if he were to succeed in showbiz. Far from doing unselfish work. And suggesting that McGuire UK is hugely milking his popularity and they and his managers are shielding him from the BSA by misinforming him about the BSA. He could have been heading a BSA campaign for example to raise awareness to help children who stutter. Why is he not involved in such campaigns but instead in bowel cancer? It is because people around him are manipulating him for their own benefits, with the result that effectively he comes across as not caring about those stuttering kids in stutterers in general.

Listen I have never met him, and he surely seems like a nice and good person; probably better and more liked than myself! I am attacking the public image "Gareth Gates" on which McGuire UK and Gareth's managers are feeding. The main reason I wrote my last post is because the "why don't you fix your speech like GG has"-pressure stutterers get all over the UK. In fact he hasn't fixed his speech at all. And McGuire is just one approach you can try out, and not better than other approaches. Which stutterer doesn't hate those claims made by all kinds of people not just those watching Gareth Gates.

Here is what the BSA says. Actually that is what I wanted to say, though I have to admit that Norbert says it more eloquently and diplomatically. :-)

Just to be entirely clear, no-one on this thread so far has been speaking for the BSA. I am not sure where some of the Anonymous people are from and what if any their relationship with McGuire or Gareth Gates is, but Tom has no formal relationship with the BSA and I am sure he wouldn't claim one.

It is true we have asked GG on any number of occasions for support and have always been refused except for the one time he agreed to speak at the Conference in Stirling as part of a McGuire presentation which he then had to pull out of for medical reasons. It is also true that as an individual, it is entirely up to GG to decide which charities, if any, he wishes to support and which he does not wish to support and it does not do anyone any good to second-guess his reasons.

We have been impressed by the fact that he spoke openly about stammering on many occasions and on that count I am sure he is a role model for many teenagers who stammer, and others.

But in terms of raising awareness - it's the kind of awareness that leads to peope who stammer being asked "why don't you fix your speech like GG has". I know this is a terrible media simplification, and not his own message, but there we are. BSA's awareness raising campaign goes beyond "before the course and after the course" video tapes of miracle cures so beloved by journalists. The message is far more subtle and therefore less interesting to journalists and the media, but it's much more important and it's hard work, hard work that's not only done by us...

As you see from the BSA statement. They are working hard to change lives for ALL people who stutter, and Gareth Gates (or let's say those that surrounded him) has refused them every time. For God's sake, what is so difficult to head a campaign, for example for stuttering kids? And even his potential conference participation in Stirling was only due to heavy heavy lobbying by Graeme Duffin, the guitarist of Wet Wet Wet. A nice down-to-earth guy who is involved in McGuire without doing the preaching. I must know because I travelled in the car with him to Stirling. Yes, I travelled with a rock star in his jaguar to Stirling. :-) Gareth's PR company was against it. They felt that he should move away from the image of being associated with stutterers!! Let me say this again: they felt that he should move away from the image of being associated to stutterers. This strategy does not exclude talking about your stuttering (good PR: you get on TV shows with interview on your struggle: if you don't have a record to sell, you can always use stuttering to be still in the news!) and working on your stuttering (again good PR: everyone loves those who work hard to beat the odds!) Even Graeme was unhappy and lost for words when Gareth didn't turn up; not knowing whether he was really seriously hurt or they just looked for an excuse and ignoring Graeme.

Wednesday, September 23, 2009

Gareth Gates is stuttering again

As I have predicted before, British Pop Idol Rounder-up, former pop star and current Musical front performer Gareth Gates is unfortunately stuttering again. Check out this video of him becoming a father where the voice says that Gareth is stuttering again. So much for McGuire glory and his talk show appearances on telling everyone of us how to rid yourself of stuttering and what stuttering is really about: That stuttering is psychological, that the McGuire is the way out and so on. He was even a coach on McGuire. Of course, his answer is that due to the birth of his child and career commitments he has not had time to practise. How about just re-evaluating your theories of stuttering, your evaluation of McGuire and actually reading up on the topic more?

Anyway, I certainly wish him well, but talking about stuttering per se is not what he can do extremely well. He is great at singing and performing. So feeling the pressure of "see Tom why don't you do it like Gareth", I inexcusibly feel a bit of Schadenfreude when he is still stuttering.

He should do some charity work for the British Stammering Association on top of being a patron of the HIV/AIDS charity Body and Soul and of the Bobby Moore Fund in bowel cancer. Why on earth is he not helping the BSA to further the causes of stuttering in the UK. Does he care about fellow stutterers? Or does he care about himself mostly? Or is it his advisors that care for himself mostly?

Tuesday, September 22, 2009

Update on the Franken trial on Lidcombe and DC

I have been staying in touch with Marie-Christen Franken who is leading the largest outcome trial into early childhood treatment. Her team is based in the Netherlands, and they have set out to treat over 100 kids randomly assigning them to Lidcombe or Demands and Capacities treatment according to a treatment protocol.

They have now included more than 120 kids, and are processing the data. They are discussing when and how they should release results. In my opinion, they should not publish preliminary data (even though that sample would probably be higher than any other study!) and wait to have a complete dataset with 120 kids for a given observation period. Thus they could publish end of therapy data, one year later, three years and five years later. And once after puberty at age 18.

I am sure many people are interested in the data. My guess is that the short-term and long-term data will show no significant difference between both treatments, not clearly more recovery rate than natural recovery rate (though it is difficult to know which rate to use but one can use any rate and see at what rate it would be better). And had they compared both treatments to no treatment group, a reduction in secondary symptoms. The lack of a control group is a big issue, but maybe they can find a good group. The Reilly study might be such a good benchmark.

Monday, September 21, 2009

Mark Onslow's talk at BSA London 2009

Here is a summary of Mark Onslow's talk at BSA.

One aspect of his talk was social anxiety and fluency improvements after therapy. They found that the social anxiety scores went down significantly after a cognitive behavioural therapy but not the fluency score. I am not surprised after having been to many therapies: it is very difficult to stay more fluent over a long time (well actually until forever), but it is much easier to change someone's social anxiety levels and attitudes. It is most noticable in intensive therapy or self-help groups, newcomers are really scared to attend the self-help group or group therapy, but after a few sessions they loose up. I guess their body realizes that it's not going to die! The reason behind this is mostly neurobiological. Beliefs we have stored in our brain are just that statement. They are were different to individually learned memories like associations, motor code or episodes of our life. I can change some of your beliefs in a second, for example: show you a picture of your cheating wife. But I cannot change your individually learned memories like your fear of spider, your way of speaking fast, or your childhood memories easily. These need to be changed permanently if you want to have lasting fluency gains. Social anxiety is fuelled by beliefs that we are holding. Change them and your anxiety is gone or reduced. He also mentioned that a colleague has compiled a list of 66 beliefs on stuttering that contribute towards social anxiety.

Mark also talked about his study led by Reilly et al. that, according to his words, even Tom Weidig is agreeing with. Well, of course that doesn't mean that the study is correct or does not need to be carefully studied to be interpreted as their numbes are relatively high. I have been talking about the study here, and I discussed the study on StutterTalk here with Peter and Eric. He reported that a follow-on study is out to the reviewers. The first observation period stopped at age 3, and 8.5% of the kids had shown dsyfluent speech. And assuming 1% of the population stutters, you get to about 90% recovery of kids. Mark showed data from the one-year extension period; so they observation stops at 4. And the curve of kids starting to stutter climbed further to 12.5% or 13.5% (I cant remember), and then plateaued (i.e. decreased only very slowly). Clearly, most kids start stuttering before age of 3.5. The data further suggests a high recovery rate; now you have to divide 1% (adults) by 12.5% (kids), and you have more than 90% recovery. Of course, the 1% of adult population might be too low; covert stutterers might be missed. Still the recovery is very high. He also said that in this new observation period only 1 in 7 kids recovered from stuttering! That's very low. So I am looking forward to reading the article. And if you are one of the reviewers, review it now! I don't want to wait for months and months.

He also talked about telehealth, and on doing therapy over Skype. In principle a good idea but Skype is still too unstable to be very effective in my view. And I am not sure it is easily solved in the future as more users come onto the net and more data is pushed around.

And again he showed this meta-analyis graph of Lidcombe. Competely flawed graph. He should have shown the long-term outcome of the random control trial that is not so glorious but the only one coming close to a good outcome trial, except of course the low sample size. And he could have mentioned that Marie-Christen Franken is working on a large-scale trial.

Saturday, September 19, 2009

My evidence based intervention talk at BSA London 2009

Here are the slides from my talk on evidence based intervention talk. (apologies for several spelling mistakes, and the drug trial is not on 1000 but 300 people).

Thursday, September 17, 2009

Jerry Maguire on DSM-V

Here is the presentation of Jerry Maguire at IFA 2009. I took the freedom to comment each slide. Jerry can of course comment if he wants.

TOM: I would not have mentioned the autoimmune component. It is Jerry's idea. Might be valid, might not be valid. But it is not an accepted fact, and should not be part of a discussion for DSM V.

Here is what wiki says about the classification structure:
The DSM-IV organizes each psychiatric diagnosis into five levels (axes) relating to different aspects of disorder or disability:
Axis I: clinical disorders, including major mental disorders, as well as developmental and learning disorders
Axis II: underlying pervasive or personality conditions, as well as mental retardation
Axis III: acute medical conditions and physical disorders
Axis IV: psychosocial and environmental factors contributing to the disorder
Axis V: Global Assessment of Functioning or Children’s Global Assessment Scale for children and teens under the age of 18

Common Axis I disorders include depression, anxiety disorders, bipolar disorder, ADHD, autism, phobias, and schizophrenia.

Common Axis II disorders include personality disorders: paranoid personality disorder, schizoid personality disorder, schizotypal personality disorder, borderline personality disorder, antisocial personality disorder, narcissistic personality disorder, histrionic personality disorder, avoidant personality disorder, dependent personality disorder, obsessive-compulsive personality disorder, and mental retardation.

Common Axis III disorders include brain injuries and other medical/physical disorders which may aggravate existing diseases or present symptoms similar to other disorders.


TOM: The 9th criterion is reasonable, but the symptom as such is not easily observable. I would definitely not talk about feared speaking situations, because many fluent people have feared speaking situations. We need to talk about fear of stuttering in speaking situations, and fear of stuttering on certain speech utterances like words or syllables. Placing close to other speech / movement disorders is reasonable, too.

TOM: I completely agree with acquired stuttering being placed in Axis III. But I do not agree with psychogenic. Either it is neuro-biological or not. So for the extreme cases I would rather put it in Axis II with personality disorders. OR, maybe best label as a phobia? Actually, it might well be a phobia. A phobia to stutter even though the speech system is perfectly fine. And a technique like flooding should get rid of it.

TOM: I am not so sure about basal ganglia disorder. I have the impression basal ganglia is fine, but has to deal with bad neurology and so is in a sense dysfunctional due to input/output at best. But in the other disorders the basal ganglia has an issue.

TOM: I am highly supportive of the neurobiological basis of stuttering, but we cannot view the disorder of stuttering as only a disorder of neurobiology. As I say in my talk, we are biopsychosocial beings and stuttering is the prime example of how a neurobiological instability is blown out of proportion into a condition with strong psycho and social dynamics from a normal brain controlling a good part of the symptoms and associated handicap. So behaviouralists and other psychologists are relevant, especially if we cannot cure the bio part. At best we get smoothen out the bio with psychopharmacology.

TOM: Here I disagree with Jerry. It is not just social anxiety and avoidance. I am convinced that learned associations from classical and operand conditioning contribute towards the occurrence of dysfluencies and shape the content of all secondary symptoms. We should not forget them.

TOM: What would be the alternative to Axis I?

TOM: Money, money, money.

TOM: What is the difference between cognition and thought? I think we don't like the label psychiatric because we feel that our I is not impacted by stuttering. It is the periphery; the printer or screen is flickering but not the computer itself. Unlike depression, schizophrenia, bipolar.

TOM: We are very different to people with depression, bipolar, panic or schizophrenia. It is a fact that cannot be denied, and stating it clearly is just about pointing out the obvious. If the consequences are negative for others, it is not our problem what it is.We can also not state that Darwinian evolution is bogus just in order not to upset religious fanatics.

TOM: I do not mind being on Axis I as long as it is close to other periphery conditions like la Tourette. What about deafness or hearing difficulties? Is it in Axis I? Or not part of DSM?

Tuesday, September 15, 2009

Neurological vs Psychological? BSA London 2009 Workshop

Here is the presentation that I gave at the BSA conference. My goal is to show how a neurobiological basis for stuttering fits well into the diverse spectrum we see in symptoms of stuttering. There is no discrepancy between the psycho and neurobio!

Monday, September 14, 2009

BSA conference, London 2009

Here is a picture of Alan Falck (Voice Amp), Jan Anderson (SLT / BSA Scotland), Norbert Lieckfeldt (CEO BSA), myself, and Robin Lickley (university lecturer at Queen Margaret University in Edinburgh)

Please send me your picture from the conference!

Sunday, September 13, 2009

Keith Boss on ISA

Here is the interview with Keith, former board member of ISA.

(Disclaimer: the opinions expressed here as Keith's and not mine or that of ISA.)

Thank you for having this interview with TheStutteringBrain. I want to talk to you about your experiences as an ISA director and about your opinions on the future course of ISA.

Let me first give you the opportunity to introduce you. How did you get you involved?

In 2006, I decided at the age 69 to turn my stammering life around. I told myself to avoid avoidance and I looked on the Internet to seek ways to help me to reduce my stammer and increase my fluency. I learned about the BSA and the ISA. I liked what I saw on the ISA web page, so I emailed them to ask them if I could help. Mark Irwin asked me if I could represent the BSA so I asked the BSA if I could represent them. And they told me that I needed to be a board trustee to represent them with the ISA. So I stood for election to the board of the BSA and was elected as a trustee. Meanwhile, the ISA had asked me if I would raise stammering awareness in India and Pakistan. My initial reaction was: I cannot do this, but then I remember I was going to avoid avoidance so I answered: Yes, I will help you. I became a special friend of the ISA and was included in the majority of the board emails. I stood for election in May 2007 at Cavtat, and I was elected as a director then.

Can you explain us a bit more about how ISA works? It is an umbrella association?

It is an umbrella association of national stuttering associations. And in my opinion, national stuttering associations are the parents of the ISA. The ISA is their brain child. Member associations have responsibilities. ISA has a board of 9 elected directors who have an equal vote, and an advisory board who have a lot of experience world-wide and who are in a position to advise the board of directors. The board of directors makes the policy and use whatever means they are able to carry the policy through. In addition to raising Stammering Awareness around the World, the ISA has an objective to help local people in countries where there is no national association to begin local self-help groups, which when expanded sufficiently to more cities, will form a new national association. The ISA would welcome that new association.

Can I ask about how the election for the board is working?

It is worth mentioning that the members of the ISA are member associations, and there is an annual general meeting of member associations at the three-yearly congress. At Cavtat, in 2007, the member associations present at the annual general meeting elected the new board of directors. A director can stay in office for 9 years, then must step down for 3 years.

And at Cavtat, Benny was elected chairman?

That's right. The board of directors elect the chair and vice-chair, and appoint a secretary and treasurer.

So why did the board elect Benny? Were there other candidates?

Myself and John Steggles (from Australia who subsequently became vice-chair) offered our names as candidates. After there were three names given, the board meeting was suspended for a few hours. The past chair Mark Irwin had a word with me, to tell me that I was unknown to the board and advisory board and he would not want this election to be divided. He asked me to withdraw my name which I did. Benny was a strong recommendation by Mark, and was elected as chair.

Which kind of background did they have? And what kind of background do you think an ISA chair should have?

I only knew Benny through the emails I had received since I was a special friend of ISA. I knew that Benny had been webmaster, but I had no knowledge of his capabilities other than being the person Mark Irwin recommended as chair. And how about John? Again, I did not know much about John, but then I learned he had a lot of experiences in management of his Australian association and leadership.

I heard that he resigned. Is that true?

He resigned as chair of the Australian association, so logically he could not longer represent the Australian association. And the new chair of the Australian association said he did not want John to represent the association anymore. This was discussed around the board and the advisory board some time early last year. It was concluded that the spirit of the constitution implied that John should stay until the new board elections. This year in 2009 Benny and Thomas Krall, the coordinator, decided that John could not remain as a board member and took him off all the emails.

So was this a unilateral decision or a vote by the board?

This happened after I resigned, but I know some Directors and Advisory Board members argued against this action.

Tell me about why you decided to resign your directorship?

I resigned in March, because I had felt for the last 15 months that the directions of the board was in no way helping people who stutter in countries where there was no national association. I was chair of Outreach, and Outreach is specifically leading the help in other countries, I felt I could spend more time helping other countries outside the ISA than spending my time on a lot of administrative non productive type emails. So I resigned to enable me to do more productive work.

Why did you feel that ISA was not effective in reaching out?

The management team of ISA, the chair and vice-chair, needs management skills, leadership skills and motivational skills. They need to draw ideas from the board of directors and advisory board and melt them into plan that the can take forward. The existing Management team of Benny and Thomas was not effective in these areas.

What is your reaction to the recent resignation of Benny as a chair?

Benny's resignation as chair was the best thing he could do for the future of the ISA. Unfortunately, he did not possess the kind of skills needed to chair of an international association, so I am especially thankful to him that he did the best he could for ISA in the current crisis, which started with the blog post by Dave Rowley and the interview by Suzanna. He deserves our thanks.

So the interview and the post really changed the dynamics?

It changed the dynamics completely, because some of the problems which had been bubbling since the end of 2007 became public knowledge, and were no longer private to the ISA board. By this information becoming public, there was a serious risk that member associations who are the lifeblood of the ISA might question their ISA membership, and some are actively doing this.

Let's look at the future! What do you think need to happen now to ensure a stable future for ISA?

There is no doubt in my mind that there is a desperate need throughout the world for an international stuttering association. There are so many countries where there is inadequate or no professional help available, and whilst I was a director we even began discussing how we arrange help even if limited in the shortest possible time. And we also looked to expand the previous ISP-S projects .

What is needed at the moment is a strong management team who can spend the remaining months of this board rebuilding a team spirit and starting and completing one or two small project which will help stutterers around the world. They have to return to closer links with their member associations. The current number of the board is seven, my own personal recommendation is to bring the number of directors back to nine, which can be done by appointing people to fill the two empty slots in line with the constitution. Then and only then elect a new management team.

Thank you for your time.