Wednesday, June 25, 2008

Neurology is not all

My posts often focus on neurology and genetics of stuttering. I just want to clarify my stance: Neurology is a necessary but not sufficient part of the story. Beyond any doubt, we cannot explain the whole spectrum of stuttering with neurological and genetic concepts alone. The vast majority of stuttering symptoms from stuttered speech, secondary symptoms, psychological and social effects are not directly due to a neurological problem, but in my view the reaction of a normally functioning human brain to an underlying neurological problem in speech production. Moreover, I am loosing hope that a breakthrough in treating stuttering will come from focusing on the underlying neurological problems. Maybe in the distant future, but not in my lifetime. Medication might alleviate but not fix. At the end of the day, rather ironically I predict that after understanding the neurology better, we will realize that the best treatment approach are the old and current ways of treating stuttering namely changing our ill-adapted behaviour and training our normally functioning brain to better cope with the underlying neurological problems in speech production.

16 comments:

Olivier said...

Sorry, I'm writing this comment in the middle of the night..don't want to write in english.

Je crois que je suis plus enthousiaste que toi par rapport à l'avenir. Si j'ai bien lu, tu penses qu'il n'y aura pas de révolution dans le traitement de ton vivant ? Moi je pense que le bégaiement bénéficiera comme d'autres affections, des progrès de la science et de la médecine. Tout va aller en progressant, et personnellement je doute fort que lorsque je fêterais mes 80 ans, je bégaye encore comme je le fais aujourd'hui. Je pense qu'il y a toutes les raisons d'être optimiste pour le futur !

Olivier, your french translator.

Tommy said...

Tom, do you think possible that people who stutter can be stem-cells research beneficiaries in the future?

Tom Weidig said...

Oliver: He said that he believes there will be a major advance.

I see stuttering more and more as a transport system that is prone to traffic jams? How do you improve a transport system? It is not an easy thing to do.

Tommy: Stem-Cells

I do not see exactly how. Well, if there is a "defect" connection in the brain then maybe we can grow new axons (new nerve connections). But that is not going to be possible for decades in my view.

Leys Geddes said...

I know I keep going on about this, but if Early Intervention can save almost 90% of young children from a lifetime of stammering then, within several generations, the number of older children and adults who stammer in, for example, the UK, will have dropped from about 500,000 to around 50,000. Surely this is a very major advance which we can make now?

Tom Weidig said...

Hi Leys,

I was talking about adult stuttering and not childhood stuttering.

Your calculation is wrong. It will not drop from 500'000 to 50'000 because 80% recover anyway!! So if we assume that it goes from 80% to 90% with treatment, then the 500'000 goes to 250'000, because 20% persistent equals 500'000 people and 10% persistent (90% recovery) is half.

As I said before your statement that we can save 90% with early intervention is highly misleading, because 80% recover anyway. I am not sure this is a wise strategy in the long-run. Someone down the line will point this out.

Is it responsible to divert resources from the NHS to treat 8 out of 10 who would recover anyway in order to save 1 kids out of 10? And I am not even sure about this one kid. You keep on repeating 90% with reference to not very solid research / observation in my view (, and others are starting to take it as a fact.

It is also not clear which treatment to give. People talk about Lidcombe, but the trials have not compared Lidcombe to any other treatment. In fact, a pilot study be Francken has found no difference between Lidcombe and demands and capacity.

Olivier said...

Un exemple dans le futur est les "médicaments-vecteurs" : Les médicaments ne sont plus diffusés dans le corps entier, mais sont dans une capsule qui s'ouvre au bon endroit, grâce à la nanotechnologie. Cela pourrait être appliqué dans environ 20 ans, au Pagoclone et à ses successeurs.

Koki said...

I see stuttering more and more as a transport system that is prone to traffic jams? How do you improve a transport system? It is not an easy thing to do.

Well, as a citizen of Sofia, a city with a great problem with traffic jams, I know that it is extremely difficult to solve the problem :-) But there are certain steps which can alleviate the situation. Of course, there is a lower bound on the time you need to get from point A to point B but maybe we are still far away from this lower bound...

Leys Geddes said...

Tom, my point was that, until something really good comes along for adults, we can at least do something about the children now.

I know that 80% of dysfluent children recover spontaneously (although some are now querying that figure). So in all my more detailed statements I have been careful to talk about those children at risk of persistent stuttering: 90% of whom can be saved from a lifetime of stuttering, through Early Intervention.

It's not just Mark Onslow who is making research-based claims of this kind - we have SLTs in the UK who are actually doing it here and now, today. Ask the Palin Centre and particularly the Royal College of Speech and Language Therapists, who have just given an award to a SLT called Daniel Hunter who is achieving a 98.5% recovery rate - just about high enough to support that 9/10 figure even if there some childen amongst his patients who would have recovered spontaneously!

Incidentally, a few weeks ago I had a good email exchange about Early Intervention with Nan Bernstein Ratner, whose recent speech at the Antwerp Conference you so admired. She recently co-authored Oliver Bloodstein’s Handbook on Stuttering, sixth edition. Nan says it has an appendix with more than 5 pages of abstracts of programmes specifically for children, with full references and enlarged discussion elsewhere in the book. Each one describes the programme, and its documented outcomes, including long-term follow-up when available. The BSA has got three copies of the book, but they are all fifth edition, so she’s kindly sent us a signed copy!

So, if we can agree that currently about 1% of the older child and adult population in the UK stutter, which would be around 500,000 people, then, if 90% of those children at risk of persistent stuttering could recover through an EI programme then, surely, over several generations, the number of older child and adult PWS in the UK would reduce to around 50,000?

In the absence of any really effective solution for adult PWS, I think that is something for which it is worth fighting. So I hope that at least some of the people who read your blog will agree and support our campaign.

Tom Weidig said...

Hi Leys,

I do admire your efforts, but I have to disagree with every statement you made! You are simply misinterpreting the scientific evidence and commit logical fallacies. For example,

>>> So, if we can agree that currently about 1% of the older child and adult population in the UK stutter, which would be around 500,000 people, then, if 90% of those children at risk of persistent stuttering could recover through an EI programme then, surely, over several generations, the number of older child and adult PWS in the UK would reduce to around 50,000?

NO! The 500,000 adult stutterers are the 20% of kids who did not recover. You are claiming 90% recovery so only 10% of the kids will not recover. So the 500,000 will go to 250,000 (half), because the 20% went down to 10%. It is a simple calculation as far as I can see.

So saying it will go down to 50,000 is far far too optimistic at best.

You are forgetting that the 90% is only a 10% improvement to the 80% recovery rate, and a 50% reduction in persistent kids.

I reply to your other statements another time.

best wishes,
Tom

Tom Weidig said...

>>> I know that 80% of dysfluent children recover spontaneously (although some are now querying that figure).

Who is querying the figure?

Virtually all figures lie between 60% and 80%.

>>So in all my more detailed statements I have been careful to talk about those children at risk of persistent stuttering: 90% of whom can be saved from a lifetime of stuttering, through Early Intervention.

It is simply misleading. They are NOT saved through Early Intervention because they would recover anyway. You can say that treatment increases the recovery rate from 80% or 70% or 60% to 90% (assuming this is actually the case, which I am suspicious of).

>> It's not just Mark Onslow who is making research-based claims of this kind - we have SLTs in the UK who are actually doing it here and now, today.

Due to the high natural recovery rate, it is very tricky statistically to know whether treatment works or not.



>> Ask the Palin Centre and particularly the Royal College of Speech and Language Therapists, who have just given an award to a SLT called Daniel Hunter who is achieving a 98.5% recovery rate - just about high enough to support that 9/10 figure even if there some childen amongst his patients who would have recovered spontaneously!

As far as I know Michael Palin has not done any outcome study of all its kids.

I also have to point out that all the people mentioned have a conflict of interest as they are administering the treatment and getting paid for it.


>> who is achieving a 98.5% recovery rate - just about high enough to support that 9/10 figure even if there some childen amongst his patients who would have recovered spontaneously!

Your statements show that you have no understanding of how outcome studies are done. One needs to show that the result could not have resulted from statistical fluctuations and much more. Quoting results like this are meaningless.

And to be honest, the Royal College says are no experts in the field of outcome studies, and I think they have given him the award for his work as president of the focus group SIG and his good work on treating children. I am interested in data and not in endorsements.

Tom Weidig said...

>>> In the absence of any really effective solution for adult PWS, I think that is something for which it is worth fighting. So I hope that at least some of the people who read your blog will agree and support our campaign.

You are implying that there is an effective solution for children, and I simply cannot see this from the data yet.

I do support that children and parents should be seen by SLTs as soon as possible after onset, but mostly to inform about stuttering and to wait for a while unless other issues are present. If they persist, treatment options should be considered but are in my view more about symptom control than true recovery.

However, the 9/10 claim is over-doing it. And you are putting pressure on those kids and parents that do not recover.

You can of course argue that this is all irrelevant after all it is a political campaign, and Tom should just shut up. However, I think that more cautious statements combined with passionate appeal would be better.

Of course, the case looks good because all the experts support the case, and who is Tom anyway.

ig88sir said...

Hello Tom,

I hope you don't stop this blog! Then I'll have to create my own and hope for donations!

Tom Weidig said...

>> Incidentally, a few weeks ago I had a good email exchange about Early Intervention with Nan Bernstein Ratner, whose recent speech at the Antwerp Conference you so admired.

Admiration is much too strong a word, and it is a word that is absent of my active vocabulary. :-)

I respect her work, and she does a better job compared to many of her colleagues, and she takes on board some of my arguments!

I would have to see her arguments to be able to respond.

But as far as I remember she wrote an article on the pitfalls of outcome studies.

>>> She recently co-authored Oliver Bloodstein’s Handbook on Stuttering, sixth edition. Nan says it has an appendix with more than 5 pages of abstracts of programmes specifically for children, with full references and enlarged discussion elsewhere in the book.

Yes, and if you actually exclude all the ones with bad methodology (especially stat treatment on natural recovery and control for placebo) the 5 pages are reduced to ZERO!

That is a big big weakness of the book. They include far far to many research articles, when in fact you probably have to exclude most of it due to bad methodology.

Anonymous said...

I agree with Tom when he says that Neurology is not all.

I am sure that in the distant future that there will be some neuro breakthroughs, however things like this take time, indeed generations.

There will be at some point a medication that offers some relief from stammering, but it will not be a cure per se. It will be something used in conjunction with "conventional" therapy.

In my view the best way is to change the behaviour and to reduce fear and accept that you are a stammerer and this will reduce the effects of stammering.

The change of behavior will be hard work - daily work to break down barriers, however its hard work to speak badly as we do.

The McGuire programme, I believe offers such a service. It will mean work daily on your speech, it is not a cure, but it will give you freedom from the stammering cycle that we are all in.

Any program that changes behavior will work to some extent, we just have to look at stammering in a different way - dont avoid situations, face them head on and face the fear.

Synapticflatulence said...

Stuttering,regardless of the flaw mechanism is the symptom of neurochemical deficiencies/surplus's.
For example, stuttering can be completely and utterly relieved for 24 hour periods throught the ingestion of MDMA ..(not ideal but is 100% effective in even the most severe of cases and illustrates a point)
This fact to me indicates (in my completely unprofessional opinion) that an increase or inhibition of certain neurotransmitters is the key to achieving fluency.
We can deal with fixing the instigating flaw down the road.
i just want to speak now..

Anonymous said...

Re: The Research of Nan Bernstein Ratner - There is less to it than meets the eye. Although they work in different circles, one could view her research as one might view Onslow's.

To Leys - FYI...In another thread, Tom spoke of "intimidation" as a tool of researchers in the field of stuttering. In some professional circles, Ratner carries the moniker of "The Fuhress".