"No scientific basis" - Here's the Proof

[Nucking_Futs]

Originally Posted by Dave123

Its been brought to my attention that some members do not know how to use their Ignore option.

Thanks, someone has to read every post to keep things in order.

I just posted a non FDA approved drug on the market for OCD, and Concerta being illegally exported. Does anyone here do anything about patient safety issues? I tried, the FDA is huge and it takes an hour to reach a desk.

I assure you that many members are reading every post in this thread. Myself as moderator included. I will admit that I have learned far more then I really had the intent of learning during the process and have had to use my dictionary far more then usual but I'm sure the knowledge will serve me well later on down the line.

It has been brought to my attention that some members are uncomfortable with the route this thread has taken and find offense with some of the participants who seem to only hear what they wish and do not feel the need or urge to even consider posts that may differ from their own personal belief.

While that is rude, it is not a break in forum guidelines. Leaving them with one option which is to ignore those whom they are uncomfortable or offended by. The option is there to keep tempers in line and to keep members from abusing the forum guidelines and other members.

I do not see what my orignally quoted post by yourself has to do with banned meds still on market. Though that is interesting information. I was of the impression that just because a med is banned within the United States did not mean that it could not be produced and sold overseas.

Cherity

[Dave123]

I just thought there was strength in numbers trying to report an unapproved drug (Luvox) board members may uncomfortable taking. Imagine if it were an ADD drug. There would be concern. It's a US discontinued drug, and I tried FDA for that reason even though I don't take it.

The website is international (despite the US being the only country that allows pharmaceutical marketing) but people in the US are talking about Luvox in other threads, and it is in US pharmacies. Check drugstore.com online or a search engine to verify if you choose.

The fact one thing mentioned had Barkley (who was mentioned by many as authoritative) on the website shouldn't blind them to patient safety. The ignore button ignores quite a few.

[Scattered]

Originally Posted by scuro

I will comment that I would love to see genetic information being used to "discriminate" ADHD people. The answer would be chop chop. Institutions could no longer hide their wallets behind nebulous clouds. Parents would get a straight answer and not be shackled by those who sell fear or have an agenda. Best of all the individual would know conclusively what they have and that is what people want. They just want to know. Would that be such a bad thing?

Hmmmm ... I wonder. For myself, I would love to know definitively. I like things nice and cleanly cut -- it would help to stop second guessing myself. It would also facilitate the things you mentioned above. I'm just not sure I would necessarily trust everyone with that information. In the limited time (7 months) that my daughter and I have had a AD/HD diagnosis, I've already come across some people whose preconceptions about AD/HD have led them to treat us as less than -- stereotyping us into a box and basically holding it against us. I also wonder in what ways a definitive diagnosis based on gene studies might be self limiting. While I was diagnosed as a child with "hyperactivity", I didn't know that meant anything other than that I had a bad case of the wiggles and talked too much. If I had had a definitive explanation back then, would I have had the belief or courage to attempt and succeed at the things I've done (no one told the bumble bee it couldn't fly)? When as an adult I found out that I had been the product of a violent stranger rape, my adopted mom said that if she had known she would have treated me differently. Would that different treatment have assumed I was capable of less and been a self fulfilling prophecy? Might handing parents a gene survey with their kids AD/HD profile do the same? Sorry, it's the middle of the night and I can't sleep and all this heavy science while very interesting and much appreciated is making my brain wander off in more philsophical directions asking questions I don't have the answer to even for myself.

Scattered

[Stabile]

Originally Posted by scuro

Dense "black forest" like packets of information as always, Stabile....although I do find it much more readable and actually this time I digested everyone of your posts on this thread. There seems to be more order in your ideas. I follow some of what you say but then disagree with a fair bit more. There are far too many points to attempt to make a coherent encompassing response.

Good points.

We’ve been gone from the forums for a while, a self-imposed exile. Part of what we’ve been doing is cleaning up the foundations of our work, so it should seem a bit more concise.

But it’s still extremely dense stuff. Think about it: our theoretical work didn’t do a thing to make the immense complexity of AD/HD go away, and in turn AD/HD is just a small part of a much more complex whole.

Our work includes a complete context for the rise of conscious experience and complex abstract communications between individual members of a social group. It encompasses the rise of the group, the forces at work on both an individual daily experiential level and over a long term evolutionary scope, the structure and nature of human experiential reality, and much more.

It’s a lot of stuff to try to put into a few posts. The best we can do is imply the existence of the greater whole.

Incidentally, our experience here has been instrumental to our understanding of how we need to present various elements of our work. Comments like yours allow us to clearly define the dividing line between stuff that’s just unclear, and stuff that needs a metamodel web in place before we can talk about it at all.

That’s what made Steve’s quote seem so uncannily appropriate:

…While this shift is just beginning to be appreciated in the basic research community, where it and the accompanying revolution will certainly take some time to complete itself, the implications for medicine and for the further evolution of our concepts of health and wellness require immediate attention.

(You might ask how Steve came up with it, and what he was trying to communicate by posting it. Interesting, isn’t it? It certainly communicated in several dimensions outside the normal limited verbal space.)

The shift cited is to a more complex model incorporating metalevels; in the brain, this will take the form of a metamodel web. Forming that is where the time goes, but meanwhile, the bits and pieces that don’t require this dramatic shift should be available for anyone that can use them.

So your assessment is exactly to the point, and it tells you exactly where our models differ from yours by incorporating metalevels. That is highly useful information for both of us.

Some fun, eh?

--T&K

[Stabile]

Originally Posted by Scattered

While I was diagnosed as a child with "hyperactivity", I didn't know that meant anything other than that I had a bad case of the wiggles and talked too much.

It could have been worse. I was diagnosed in college with “Minimal Brain Dysfunction”, and there couldn’t have been a better impetus to rejecting the diagnosis and forsaking the Ritalin I was prescribed.

Part of the problem for everybody, ADDer and normal alike, is the impulse to seek an answer that is “nice and cleanly cut”, as you nicely and cleanly put it. In our work we recognize that as a kind of code for the deeply rooted and highly active mechanisms that cause us to try to limit our internal logic to a simple and stable form.

Simple and stable are a good thing, far more important to being recognizably human than commonly understood. But it’s an old, old mechanism; it evolved when there was no alternative, and so it’s activated by models incorporating metalevels, even though the metamodel web they form is inherently stable (and in fact, more stable than the traditional form).

So we all face a dilemma in recognizing and separating two different classes of “nice and cleanly cut”. Sometimes, the impulse leads to clarity. But for some issues, the impulse is counter productive, seeking to suppress the models that would allow a clear understanding of a complex subject.

And AD/HD is firmly in the latter class.

No genuinely clean and consistent model of any aspect of the experience of having/being AD/HD is nice and cleanly cut in the traditional sense. We worry that those that insist on forcing a traditional model are also forcing ADDers into a situation that is untenable, that would suppress and deprive us of our unique (but non-conforming) personal attributes.

The dilemma of having two different classes of logical models representing the same thing (in this case, AD/HD) is what this thread was created to address. Robert is entirely correct in his instinct to try to nail down the diagnosis of AD/HD, if not the definition, and also correct in his sense that there is something there that can be cleanly and solidly defined, even if it seems to hover slightly beyond our ability to express it.

The key is that frustrating failure of the linguistic faculty when it comes time to speak about what he (or any of us) sees when we look at the problem. That’s where we come in; these linguistic problems are our field, what we’ve been trying to understand for over thirty-five years.

And they are very much intertwined with the experience of having/being AD/HD, so this entire thread is right on point, in a way perhaps the most direct intellectual attack on the problem anywhere.

We’re certain of this: there are two different ways to come to a “nice and cleanly cut” understanding of anything you might care to think about. Some stuff can be addressed either way with success. But some things, AD/HD included, require the more complex model that can only be defined by incorporating metalevels.

So we don’t expect the pot to stop simmering anytime real soon. It will take us all a while to come to a common acceptable form of this complex model, because it is, after all, a complex issue.

We’ve been speaking directly to this since we joined the forums, and we probably won’t shut up about it until it starts to sink in. And then it won’t seem like we contributed anything at all. (grins…)

Good luck, BTW. –T&K

[Stabile]

BTW, Futs:

Nice job of stepping carefully around the cracks and not getting caught in one or the other of the two different views.

One of the most difficult problem we’ve had is trying to explain that both views afforded by the two different classes of logical models are inherently correct and appropriate, by definition.

The determination of ‘correct and appropriate’ depends only on consistency, and despite the dramatic differences, honest models formed with or without the incorporation of metalevels are at least that.

It’s a tough meta-view to grasp, looking at a world in which two drastically different opinions can each be seen as inherently correct. But it’s necessary, because it’s the only way to get the really benevolent view of the whole.

About the most we can do from up there is say that one view offers advantages over the other, and often the only quick advantage is understanding each others opinions, so they don’t seem as threatening.

But anyone working with either valid model is doing the right thing by definition, and that has to be respected. It’s a new kind of tolerance for individual differences, one that challenges all of us to rise to a new level.

Like I said, it’s tough, and you did an exemplary job of it here.

Nice.

[scuro]

Originally Posted by Stabile

That’s what made Steve’s quote seem so uncannily appropriate.

Yes, it did sounds like you're sort of on the same page. I'm open to this and will always consider it.

[mctavish23]

Dave,

You are obviously quite bright and have done some reading on ADHD. In addition, some of the things you've said I've even agreed with. However, you've crossed the line in implying Joe Biederman & Russ Barkley are somehow being monetarily influenced by the pharmaceutical companies. You didn't come out and say that but you've insinuated as much.They are two of the world's leading authorities and among the most resepcted researchers in the world.

Grants from drug companies are "unrestricted." These people have devoted their lives to researching ADHD.Their work is impeccable.It has to be, their reputations hinge upon it.

In terms of the sample population used for the DSM criteria, it seems to me that you're trying to trivialize this into another concrete, black and white point of view.

The diagnostic criteria has flaws but it is NOT invalid as you seem to be hinting at.
Once again, you didn't come out and say that, however, it is clear that you have little respect for it, as well as the DSM in general.

The creation of an ADD syndrome didn't just happen one day when they threw a group together and came up with the criteria.This has been building up since George Still's original study in 1902.The progession of the science of ADHD over the years is fascinating for someone who's interested in seeing how things have arrived at this point.The different names that have been used to classify ADHD over the years help show that progression.

This is from the ADHD: Handbook,Second Edition (It's also acknowledgement of Canada's involvement in advancing the science of ADHD that doesn't get enough credit).

The Emergence of Attention Deficits :

"At this time,disenchantment with the exclusive focus on hyperactivity (he's referring to the "hypekinetic child syndrome") developed as the sine qua non of this disorder( Werry & Sprague,1970).Significant at this juncture would be the presidential address of Virginia Douglas to the Canadian Psychological Association (Douglas, 1972), in which she argued that the deficits in sustained attention and impulse control were more likely to account for the difficulties seen in these children than just hyperactivity."
(p.12)

Jumping ahead to Chapter 2: PRIMARY SYMPTOMS, DIAGNOSTIC CRITERIA, PREVALENCE,AND GENDER DIFFERENCES

In addressing the purpose of this chapter, Dr.Barkley indicates that he wants to "glean from the literature that which has a direct bearing on the clinical diagnosis, assessment,and management of ADHD." (p56).

This chapter reviews the research that led to the development of the diagnostic criteria.

Inattention:

"...attention is a multidimensional construct that can refer to alertness,arousal,selectivity,sustained attention,distractibility, or span of apprehension.among others ( Barkley,1988,1994; Hale & Lewis,1979;Mirsky,1996 ).Research to date (this edition is from 1998) suggests that ADHD children have their greatest difficulties with persistence of effort,or sustaining their attention (responding) to tasks (or vigilence) (Douglas,1983)."

He goes on to say that the problem is not so much heightened distractibility.In the process he acknowledges some of those data were contradicitory. What he says is,"Instead, the problem appears consistently to be one of diminished persistence of effort or sustained responding to tasks that have little intrinsic appeal or minimal immediate consequences for completion (Barkley ,1989a,1997a)." (p.57)

THAT'S WHERE THE FOUNDATION WAS LAID FOR THE SECOND DSM-IV SYMPTOM UNDER "INATTENTION"....."Often has difficulty sustaining attention in work or play activities."

When diagnosing ADHD in children, which is what I do for a living using the DSM-IV criteria as a guideline (and not the determining factor), this is where I educate parents on things like "hyperfocus" and the dimensional aspect of the disorder;with emphasis on "impairment."

Impulsiveness or Behavioral Inhibition : (p.58)

"ADHD is frequently associated with a deficiency in inhibiting behavior in response to situational demands,or what may be called impulsivity,again relative to others of the same mental age and gender (this is what makes ADHD a developmental disabilty).Like attention,impulsivity is also multidemensional in nature (Kindlon,Mezzacappa & Earls ,1995; Milich & Kramer,1985)."

Later on p.59, he gets into more of an operational definition for impulsivity with, "The problem of impulsivity is sometimes scientifically defined as a pattern of rapid,inaccurate repsonding to tasks (Brown & Quay,1977)." He then discusses some of the neuropsych testing done to derive those data.

Later on he says (and this is important) "Evidence that behavioral inhibition of behavior,is the hallmark of this disorder is so substantial that it can be considered fact (see Barkley,1997a,Pennington & Ozonoff,1996, for reviews.)" He then breaks it down as follows:

1) "First,studies typically show that it is not inattention that distinguishes ADHD children from other clinical disorders or from normal children as much as it is their hyperactive,impulsive, and disinhibited behavior (Barkley,Grodzinsky & DuPaul, 1992;Halperin,Matier,Bedi, Sharma & Newcorn,1992)."

2) "Second, when objective measures of three symptoms of ADHD are subjected to a discriminant functional analysis (a statistical method of examining the variables that most contribute to group discrimination), it is routinely the symptoms of impulsive errors,typically on vigilence tasks or those assessing response inhibition and excessive activity level that best discriminate and classify ADHD children from non ADHD children(Barkley,DuPaul,& McMurray,1990;Corkum & Siegel,1993; Grodzinsky & Diamond,1992;Losier,McGrath, & Klein,1996)."

(NOTE: this is where 3 more symptoms were established as valid).

3)"A third source of evidence derived from the field trial (Spitzer,Davies,& Barkley,1990)that tested the sensitivity and specificity of the 14 descriptors that comprise the DSM-III-R diagnostic criteria for ADHD."

He adds "These descriptors were rank-ordered by their discriminating power and presented in the DSM-III-R in that descending order."

I could go on because the Chapter is devoted in part to explaining how much work went into the process of developing the criteria. Trying to trivialize that won't change the fact that these data are both valid & reliable.

Are they perfect (far from it)?" or "Can they be improved upon"? Absolutely. They definately need to be "aged referenced" in terms of the symptoms applying to adults over the course of their lives . The point is they were empirically derived and that it was a hell of a lot more thorough and concise than just the field trial alone.

Some of the things you say are indeed true, however, they're intermixed with misleading remarks and insinuations that are not true.

I just took corrected you on Zametkin,genetics,"neurobiological" and use of the term "landmark."
You were mistaken about those, as well as my original post.

But now you're criticizing Dr.Barkley over things you are once again mistaken about.

He derives 1% of his income from consulting with Lily on Straterra. He is on their global review board. My impression (meaning I don't know this for a fact) is that he is there to check the research.

He teaches at the Medical College of South Carolina. As of a couple of years ago, he was working on how ADHD impairs driving. At that time (August of 2003), he had the largest virtual reality driving lab in the South.

He is obviously a prolific researcher and author. As I said in my earlier post, his Third Edition of the ADHD Handbook should have just come out.

He also has a private practice. I would not be surprised at all to learn he might be on the editorial/ review panel(s) of professional journals. I don't know that though.

In addition to all of the above, he presents workshops all over the world.

He does so much for both the clinical & ADHD communities by advancing the science of ADHD.

He takes on all comers in terms of defending us (ADHD community). I am very grateful for his help;personally and professionally.

Russ Barkley is a "pure scientist." He is all about "show me the data." His ethics are beyond reproach and your criticism of him is simply not true.


You have potential to contribute a lot to the Forum and you have raised some interesting points. I hope that you (and others) can learn from some of the more accurate info that Forum members have taken the time and effort to post.

I have nothing personal against you. This is about providing the most accurate information we can.
Actually, I'd like to thank you because you motivated me to make what I think are some of my best posts.

I still have some refererences and some definitions to post when I get a chance.

Take care.

mctavish23 (Robert)

[scuro]

Originally Posted by mctavish23

Dave,

I have nothing personal against you.

mctavish23 (Robert)

It's personal on my side of the fence. Dave asked me a question and asked me to back it up with Science. I take the time to research and post. His response has nothing to do with my post. In his reply, he simply took pot shots at Barkley.

The thing is, what he posts is outdated, 1/2 right, or just plain wrong....but it's all meant to create doubt, fear, and uncertainty. I'm not going to dignify his posts with a response. He has clearly shown he's not interested in communication. It's about bashing, it's about harassment, it's about making parents squirm....just like we have seen from all the other antipsychs.

And the iggy button is not the solution, unless we have a entire board iggy button. I could iggy him but people who don't know better will take his information at face value.

[mctavish23]

I think continuity of content is important, especially if it's helping to try and clarify some relevant point. As far as answering questions with more questions or asking a question and then not answering the repsonse, that is something no one has control over on the internet.

When I originally posted the "Here's the Proof," it was in reference to another Forum member who never read any of the references and simply reposted what I had just said. I believe he eventually left. My sense is that he was either a complete "zealot" and/or had a hidden agenda. Either way, his mind was made up long before he got here. People like that can actually become delusional in their fixed belief systems.

There will always be concerns about accuracy,especially with the internet. I think that the Forum tries hard to promote that.

I have to say though that the strenghts outweigh the weaknesses when it comes to the Forum. There are so many bright,motivated and sophisticated consumers who've paid their dues to become so, that there is usually an outpouring of what I think is, in most cases, polite confrontation. That of course, is due in large part to the moderators .


I try and learn from my mistakes and hopefully own them when they occur. There is a lot to be learned in here and it's usually fun in the process.


lol... when first I saw that you had posted something else I thought that it might be about Canadian contributions to the science of ADHD.

Take care.

mctavish23 (Robert)

[speedo]

I think it may be best to close this thread for now.

Me

[meadd823]

Now it has been four years surely some thing some where had changed plus I see no reason to sticky a thread that is closed - thread reopened for now.

[AmberMommyof2girls]

Thank you so very much! I am printing this out. Some people just don't understand and I feel sorry for them. Those are the people who never get to know who I really am.

[lctrfly]

Excellent! Thanks so much!

[Imnapl]

Originally Posted by Andrew

where's the reputation system when you need it? Great post!!!

Thanks for the reminder. I was looking for this thread in order to direct some new members to it, saw your post and discovered that I didn't give Robert, aka McT's Tool Town, rep points for this thread topic.