New York Times article - ask them to retract

There's a newly published story in the New York Times about feuding that perpetuates the misinformation in last spring's AP article.



Here is the message I sent to the author of the article. If you would like to send her a note, or to send a letter to the editor of the New York Times, that would be great. I think the more they hear this message -- in your own words, from your own perspective -- the more they will realize the damage this "colorful quote" is doing.



I will post this also in the pheo list.



The article: http://www.nytimes.com/2007/12/09/weekinreview/09goodnough.html?ref=weekinr eview


To write to the author, click on the author's name and then on "send an e-mail to the author", or click here
http://www.nytimes.com/gst/emailus.html


To send a letter to the Editor of the New York Times, please send to letters@nytimes.com


Article title: No, We don't want to kiss and make up



TO: Abby Goodnough



Your article about feuds is very entertaining. However, I do have a bone to pick with you.



You quote the colorful but ENTIRELY WRONG quote from the AP article last spring that VHL is a rage disease. This was a quote from a family member, repeating colorful family lore. However, it is NOT SCIENTIFICALLY ACCURATE.



I have been living with VHL since 1962, and heading this organization since 1993. When I read that in the press, I had only heard rarely about outbursts of anger associated with pheos, so I contacted two of the country's top experts in VHL and pheochromocytoma. Dr. W. Marston Linehan, Chief of urologic oncology at the U.S. National Cancer Institute said to me, "RAGE IS NOT A FACTOR IN PHEOCHROMOCYTOMA." Dr. Mary Lee Vance at the University of Virginia, another of the country's top experts on pheochromocytoma and VHL, was offended at the very question.



Only 15% of people with VHL ever even get a pheo.



85% of people with pheochromocytoma do not have VHL.



The doctor quoted at Vanderbilt University mis-characterized the hormonal surge as being caused by VHL -- it is caused by a pheochromocytoma, a tumor that can occur in VHL or one of four other genetic conditions, and also (70%) in the general population.



AND "rage" is not at all a common occurrence with pheos. The hormonal surge is much more frequently interpreted as a PANIC ATTACK -- in other words, a person with a pheo is much more likely to RUN or harm himself than to strike out at others.



Don't take my word for it, please call


Dr. W. Marston Linehan, NCI


Dr. Mary Lee Vance, University of Virginia



We would appreciate a formal retraction in the New York Times. This misinformation is very hurtful and demoralizing to people with VHL and also to all people with pheos. They have enough to cope with in dealing with this very difficult medical condition. They do not also need the burden of this stigmatizing misinformation.



How would you feel if you knew one of your colleagues had VHL, and you read in the New York Times that this person might flip out for no reason?



How would you feel if you had VHL and your colleagues and your boss read this in the New York Times?



It was bad in the AP article -- we posted replies and letters to the editor in newspapers all over the world. But when it appears in the New York Times, with the greater weight of the authority of the Times, it is dimensions worse.



Please print a formal retraction as soon as possible.



Many thanks,


Joyce W. Graff, Director, VHL Family Alliance, 617-277-5667 x 710, director@vhl.org


cc: Linehan, Vance