My letter to TSA on Jankovic in NEJM
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TSNW tsnwREMOVEC...@optonline.net
Please refer to the information here, and please WRITE. If you want to do even more to help, please contact me on TSNowW...@aol.com for a list of additional addresses.
http://pub23.ezboard.com/ftourettesyndromenowwhatfrm22 ********************************* Joseph Jankovic, M.D., who serves in an advisory capacity for the Tourette Syndrome ***ociation, published a diagram and definition of Tourette's in the New England Journal of Medicine with a misleading representation of Tourette's syndrome. "Figure 1. Clinical Hallmarks of Tourette's Syndrome. The diagnosis is based on the occurrence of tics along with behavioral disorders, including attention - deficit --
hyperactivity disorder (ADHD) and obsessive - compulsive disorder (OCD). Other behavioral disorders include anxiety and mood disorders, learning disorders, sleep disorders, conduct and oppositional behavior, and self-injurious behavior." (Jankovic J. Tourette's syndrome. New England Journal of Medicine, October 18, 2001; 345:1184-92.) Figure 1 makes an impressive first visual impact, with a Venn diagram showing Tourette's lying at the intersection of tics, ADHD, OCD, and behavioral disorders. When the misleading information was pointed out by another physician in a letter to the editor of NEJM, Dr. Jankovic's response acknowledged the correct diagnostic criterion for Tourette's, but defended his representation of Tourette's nonetheless.
The article was further picked up and endorsed in an article in the American Family Physician.
A family member of a client of Dr. Jankovic reported on an internet bulletin board that, when questioned about this article, Jankovic defended his article and she reports that he stated that "it was also approved by upward of ten leading professionals, including Dr. xxxxxxx, and the TSA." (Name xxx'd out as I have not verified this hearsay and do not consider it worthy of repeating.) To my knowledge, the TSA has made no effort to correct or refute the notion, put out nine months ago in a major medical journal, that a diagnosis of Tourette's includes behavioral disorders.
The entire incident, including the text of the article and letters to the editor, is elaborated here: http://tourettenowwhat.tripod.com/JankovicNEJM.htm I urge the TSA, its Board of Directors, and Medical and Professional Advisory Boards to take steps to correct and refute the widespread publication of this misrepresentation of Tourette's syndrome.
In its unique position to advocate for persons with Tourette's syndrome, it is shocking that the TSA has allowed this misleading definition of Tourette's to go uncontested, or to think that members of TSA Advisory Boards subscribe to these notions of Tourette's. The notion that a diagnosis of Tourette's must include the behavioral disorders, as listed in the article by Jankovic, can lead to further underdiagnosis and misdiagnosis of the condition, as well as further stigmatization of those who have Tourette's. It will not help family physicians recognize TS in family practice. It is incumbent upon the TSA and its spokepersons and representatives to publish accurate information about TS, to further understanding of the condition, and to help lessen the stigma already attached to the condition. These kinds of inaccurate representations of the condition have long contributed to the unnecessary stigmatization of persons with Tourette's: it seemed that this sort of thing had stopped since the mid-90s. I hope the TSA and its representatives will take a stand for accuracy in published information about Tourette's, and refute this misleading information in order to help minimize the already unnecessary stigmatization of persons with Tourette's.
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Tourette Syndrome - Now What?
http://tourettenowwhat.tripod.com Misleading info about TS published by Jankovic in NEJM http://tourettenowwhat.tripod.com/JankovicNEJM.htm Alert: forgeries have occurred on alt.support.tourette.
If you get e-mail which seems nasty or suspicious, it may be a forgery.
Blurt Durtwurd blurtdurtw...@worldnet.att.net
On Tue, 16 Jul 2002 10:45:05 -0400, TSNW <letter snipped> Suggestion, FWIW: A copy of the Jankovic Diagram (and the caption that appeared below it) on your Jankovic page might be helpful. It's not easy to convey the severity of the NEJM/Jankovic misbehavior with only a description and a link to a pdf file.
Acknowledgement: Thanks for keepin' at it!
Blurt
TSNW tsnwREMOVEC...@optonline.net
I'm fairly certain that including the Venn diagram could get me into deep copyright doo-doo, no ... ???? I do include the caption, though.
Thanks for thankin' :-)
Blurt Durtwurd blurtdurtw...@worldnet.att.net
Disclaimer: I am just an idiot playing with a computer, and my comments are not intended as a substitute for consulting with a licensed Venn diagram attorney.
On Fri, 19 Jul 2002 20:11:01 -0400, TSNW Although some people might call it intellectual property, I see more of an absence of intellect in it. At any rate, you'd be using it for clarifying your comments on it - a very different purpose from that for which it was published. You are selectively quoting from the article, with or without the diagram included, and only enough for commenting. The sentences you quote are more original than the diagram, which consists only of a few words and a geometrical drawing used by many, many people for many, many years - not an original work of art by any far-fetched measure.
Of course, NEJM could probably force you into spending a bit of money defending any bogus lawsuit they could slap you with and lose, but you don't really think they'd do such a stupid thing, do you? Their stupidity is probably limited to what they publish and what movies they like.
I vote for either putting the diagram just above the caption, or the caption just below the diagram. IOW, both together, for full yucky effect.
Never mind, I admit it. Yes, I was trying to trick you into "deep copyright doo-doo" (you make it sound even more frightening than an endless politeness loop).
<burp> Blurt
TSNW tsnwREMOVEC...@optonline.net
I can't "grab" the diagram from their PDF document, so I messed around a bit last night in Publisher trying to create my own. I'm creatively challenged :-) It doesn't work in black and white, and I don't know any software for doing it in color. If anyone can replicate an image of that Venn diagram in color in any software that will generate a gif or jpeg for me, I can look into ways to include it. I bet LisaViger can do it!
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Misleading info about TS published by Jankovic in NEJM http://tourettenowwhat.tripod.com/JankovicNEJM.htm
Blurt Durtwurd blurtdurtw...@worldnet.att.net
On Sat, 20 Jul 2002 07:29:05 -0400, TSNW Dear BB2, I made a Jankovic Diagram and I'll send it to you. Now don't worry about NEJM suing you. They'd have to be crazy to go around trying to squash criticism of what they publish. Can you imagine the uproar (not at all only from the TS community)? And it certainly would draw a lot of attention to how inaccurate the info is.
Politely Yours, Blurt
TSNW tsnwREMOVEC...@optonline.net
Blurt, I can't get what you sent ... whatever it was, as soon as I try to download it, AOL cuts out on me -- both of them completely kicked me out of AOL.
Is it your own version? I won't directly lift their diagram and include it in my website -- I won't risk an issue with them. If anyone can create a "facsimile thereof," or if that's what you've put together, I will look into the copyright issues of including that, but I can't download yours ... ?
--
Tourette Syndrome - Now What?
http://tourettenowwhat.tripod.com Misleading info about TS published by Jankovic in NEJM http://tourettenowwhat.tripod.com/JankovicNEJM.htm Alert: forgeries have occurred on alt.support.tourette.
If you get e-mail which seems nasty or suspicious, it may be a forgery.
TSNW tsnwREMOVEC...@optonline.net
P.S. - a question -- why is it that people can't just click on the pdf? Is it really slow to load on older computers, or is there another problem?
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Misleading info about TS published by Jankovic in NEJM http://tourettenowwhat.tripod.com/JankovicNEJM.htm
"Lara" kbu...@tpg.com.au
I was just looking at the pdf again before coming here to read news.
I had several tries. It finally did open though.
I have that problem with all pdf files unfortunately.
Lara
Blurt Durtwurd blurtdurtw...@worldnet.att.net
On Sat, 20 Jul 2002 19:18:32 -0400, TSNW Not sure if I should believe you about that. Probably not.
No, I opened the pdf document, got the diagram in view, pushed the print screen button on the keyboard (Prt Scr), pasted it into a new bitmap file using MSPaint, trimmed it, used software that came with my printer to convert it to a gif file, and sent it to you.
Look at the top of the page where you said that you tried to grab it from the pdf file.
You wouldn't be. It wouldn't matter if you were to copy it by drawing your own made to look identical to theirs, or by copying it electronically. But if you really believe it would make a difference, then use a comp*** to draw your own, and then scan it.
BTW, the only copyright notice appearing in that pdf document is: Copyright ?© 2001 M***achusetts Medical Society.
Try again, or draw and scan.
Blurt
Blurt Durtwurd blurtdurtw...@worldnet.att.net
On Sat, 20 Jul 2002 19:19:48 -0400, TSNW Not everybody wants to go clicking everything in sight. Also, many people don't have the software to open it. Another point to consider, is that your comments about the diagram would be much better served by having it on the same page, even if everybody could and would check it out in the pdf file you linked to.
Extremely slow on some with a dialup connection (plus, remember, some dialup connections are slower than others). With the old macintosh I had to use for a while recently, it really took some doing to get a version of Acrobat Reader that would work at all, when I needed to read a certain pdf document. And the first couple times I opened a pdf file, the computer crashed. It was on very shaky ground that way, so I had to download (takes forever on that machine, with that modem), and then open it.
Blurt
TSNW tsnwREMOVEC...@optonline.net
Huh?
Blurt, I am afraid to lift theirs -- right or wrong, it worries me.
And I don't know how to draw my own in some other software. I could draw and color one by hand and scan it ... but more to the point ... is anyone writing letters and does anyone care? I haven't been able to tell, although I recognize that this has been a very slow time for ast.
--
Tourette Syndrome - Now What?
http://tourettenowwhat.tripod.com
TSNW tsnwREMOVEC...@optonline.net
OK, you're doubting me made me so mad <g> that I went and tried again.
It worked -- but I did some major cleaning up of my hard drive the other day, so perhaps I fixed something that needed fixing.
Beautiful work -- but now how can I be convinced that I can use it without getting sued? I'm *really* not willing to take the risk ! I just do not see how I can directly incorporate their GIF file into my website?
TSNW tsnwREMOVEC...@optonline.net
your.
arrrgh ... I'm doing this sort of thing more and more lately.
I'm becoming convinced it's age-related ... anyone else?
userk ...@aol.com (Kimber)
Yes! And thanks for the example on your website.
~~Kim~~ "Making the decision to have a child-it's momentous. It is to decide forever to have your heart go walking around outside your body." ~ Elizabeth Stone
"Lara" kbu...@tpg.com.au
Making the error in the first place you mean? I think it's just part of being busy and typing fast.
Correcting the error you mean?? That's ast's fault LOL
TSNW tsnwREMOVEC...@optonline.net
In color? If so, send it on and I'll see if I can use it ...
Thanks K!!
--
Tourette Syndrome - Now What?
http://tourettenowwhat.tripod.com
userk ...@aol.com (Kimber)
Yes, it's in color and very simple, but it gets the point across. Sending it now.
~~Kim~~ "Making the decision to have a child-it's momentous. It is to decide forever to have your heart go walking around outside your body." ~ Elizabeth Stone
TSNW tsnwREMOVEC...@optonline.net
I got it, Kim.
(THANKS, Katie!) Now, how to use it ...
It's a doc file. I got it into MSPaint, and I figured out how to save it as a gif, but I don't know how to make it smaller (it's the size of a webpage, and I need it to be less than half of what it is now?). I don't know anything about this stuff, but I need to get it from a large doc file, to a much smaller .gif or .jpeg -- I don't what software to do that with, or how to do it in MSPaint ... ???? I've never learned how to manipulate picture files.
Here's how it looks now ... (I was working on the center color, and ended up with an awful color that I need to change, and I added the lettering about behavioral disorders).
http://tourettenowwhat.tripod.com/images/Venn.gif
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Misleading info about TS published by Jankovic in NEJM http://tourettenowwhat.tripod.com/JankovicNEJM.htm
"Jodi" hellofromj...@charter.net
Copy it, then open Word, paste and you can manipulate the size.
Jodi ...
TSNW tsnwREMOVEC...@optonline.net
It's grouped or something ... I can't find handles for manipulating the size in Word, and don't know how to manipulate it in any other software ?
"Jodi" hellofromj...@charter.net
Double click on the picture to get the Format Picture menu. Go to layout, and send behind text. I don't know why, but sometimes i have to do that before it will let you manipulate it.
Try that.
Jodi ...
userk ...@aol.com (Kimber)
Ok, let me try to figure out how she did it, she isn't home right now, but if I figure it out, I will let you know.
~~Kim~~ "Making the decision to have a child-it's momentous. It is to decide forever to have your heart go walking around outside your body." ~ Elizabeth Stone
tsnoww ...@aol.com (TSNowWhat)
Kim, I figured out how to manipulate the size, but then I can't see the lettering ... I'm tired and can't work on it any longer tonight, so maybe Katie can get it to a size that works on a webpage? Thanks for the help ...
userk ...@aol.com (Kimber)
I _think_ I sent you a smaller one, at least it looks smaller on word. I double clicked outside the circles but within the layout area and it brought up a box that allowed me to manually set the size.
~~Kim~~ "Making the decision to have a child-it's momentous. It is to decide forever to have your heart go walking around outside your body." ~ Elizabeth Stone
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