Question:
It’s also now pretty clear that they sent out the same badly crafted response to all those responding negatively to the Self magazine article regarding lupus. >>We hope this helps. Your comments have been forwarded to the editors of
the article, so you can be sure your voice has been heard.>> Since it seems very possible that no one edited the article before publication, I’m suspect the letters went straight into the circular file. Sandra
Response:
Here’s the address Helena_Mas…@condenast.com "KCat" <kcdoc…@ghg.net> wrote in message
news:s5uqnt02pjh1j84tfeakpr7h3qjhg85722@4ax.com… – Hide quoted text — Show quoted text -> [note: posted and emailed by intent] > Nicole – who do I forward this to? > it is aimed at Self – not at you. > On Fri, 17 Aug 2001 02:43:50 GMT, SELF "Editor" wrote: > >While we appreciate your taking the time to write with your point of view, > >we > >stand by the information in the article. > reconsider this stance please. > >Perhaps one of the points below > >will help to clear up the confusion. > The original correspondent was not "confused" – but *right*. I know > that in the interest of column space that some "facts" get lost. But > that shouldn’t prevent you from correcting the mistakes. And they > *are* mistakes. See below. > >* The lupus statistics referred to women whose disease has already affected > >their organs. > then this should have been stated clearly. Instead, it was left for > the reader to guess. Regardless of what was "meant" – the impression > is still *WRONG*! Is it just fun to scare people? > >* The schleroderma stats were for "systemmic" schleroderma which can attack > >organs, not ?limited? schleroderma. > a) it’s scleroderma not "schleroderma" > b) it’s systemic not systemMic (come on – what kind of editor are > you?) > c) "limited" scleroderma aka CREST syndrome is "less likely to cause > internal organ damage" but that doesn’t mean *unlikely*. In fact, > "People who have the CREST syndrome can develop pulmonary > hypertension, which can cause heart and respiratory failure." (Ref: > Merck Manual of Medical Information). > >We hope this helps. Your comments have been forwarded to the editors of the > >article, so you can be sure your voice has been heard. > No, I’m sure it wasn’t heard. Since you can pass off your statements > with justifications vs. facts. > >Thanks for your interest. > thank you for helping me determine that I will not subscribe to your > magazine. > Several hundred people have read this response – I hope that either > you strive to correct the problem or that at least your subscribers > are made more aware of the maxim "Don’t believe everything you read." > >Helena Massan > >Self Editorial > >jnhighto…@earthlink.net on 07/20/2001 01:56:07 PM > >Please respond to jnhighto…@earthlink.net > >To: Self letters/Self/CNP@CNP > >cc: > >Subject: lupus [Why Are All These Women Sick? June] >————————————————————————– – – > >—- > >Your article regarding systemic lupus was incorrect. > >"The disease eventually > >attacks the heart and kidneys; more than half of lupus sufferers die within > >15 years of diagnosis". > >This is NOT true! Lupus does not have to attack your internal organs. Many > >of us have no internal organ involvement. And as for dying, we almost > >always live a normal life and die at a ripe old age. Your misinformation > >has probably scared newly diagnosed patients. Lupus is very common in young > >women and we need the correct information out not misleading. > >From the Lupus Foundation of America > >" People frequently read in the literature that 80-90% of people with lupus > >live for more than ten years. Unfortunately, this is often misinterpreted as > >meaning that people with lupus live for only ten years. Let us clarify this. > >The studies that were done to arrive at this figure were done over a period > >of ten years. They followed patients with lupus from the time of diagnosis > >for ten years. At the end of these studies they were able to conclude that > >80-90% of the people enrolled were still alive. What this study did not look > >at is what happened in year 11, 12, 15, 20 and so on. We know that there are > >many people living with lupus and have been living with lupus for 15, 17, > >19, 25, 27, 30 and 40 years. This is not a disease that is universally fatal > >to all. THE MAJORITY OF PEOPLE WITH LUPUS TODAY CAN EXPECT TO LIVE A NORMAL > >LIFE SPAN." > >If you could do a correct story on lupus, you would help thousands of women > >who are suffering. > >www.lupus.org has lots of info > >Nicole
Response:
In article <Gx%e7.1724$D4.137…@newsread1.prod.itd.earthlink.net>, Nicole H. <jnhighto…@XXXearthlink.net> wrote [munch] >Helena Massan >Self Editorial
Self Ish! — Andy [Editor, Austrian Philatelic Society] For Austrian philately <URL: http://www.kitzbuhel.demon.co.uk/austamps/> For Lupus <URL: http://www.kitzbuhel.demon.co.uk/lupus/> For my other interests <URL: http://www.kitzbuhel.demon.co.uk/>
Response:
[note: posted and emailed by intent] Nicole – who do I forward this to? it is aimed at Self – not at you. On Fri, 17 Aug 2001 02:43:50 GMT, SELF "Editor" wrote: >While we appreciate your taking the time to write with your point of view, >we >stand by the information in the article.
reconsider this stance please. >Perhaps one of the points below >will help to clear up the confusion.
The original correspondent was not "confused" – but *right*. I know that in the interest of column space that some "facts" get lost. But that shouldn’t prevent you from correcting the mistakes. And they *are* mistakes. See below. >* The lupus statistics referred to women whose disease has already affected >their organs.
then this should have been stated clearly. Instead, it was left for the reader to guess. Regardless of what was "meant" – the impression is still *WRONG*! Is it just fun to scare people? >* The schleroderma stats were for "systemmic" schleroderma which can attack >organs, not ?limited? schleroderma.
a) it’s scleroderma not "schleroderma" b) it’s systemic not systemMic (come on – what kind of editor are you?) c) "limited" scleroderma aka CREST syndrome is "less likely to cause internal organ damage" but that doesn’t mean *unlikely*. In fact, "People who have the CREST syndrome can develop pulmonary hypertension, which can cause heart and respiratory failure." (Ref: Merck Manual of Medical Information). >We hope this helps. Your comments have been forwarded to the editors of the >article, so you can be sure your voice has been heard.
No, I’m sure it wasn’t heard. Since you can pass off your statements with justifications vs. facts. >Thanks for your interest.
thank you for helping me determine that I will not subscribe to your magazine. Several hundred people have read this response – I hope that either you strive to correct the problem or that at least your subscribers are made more aware of the maxim "Don’t believe everything you read." – Hide quoted text — Show quoted text ->Helena Massan >Self Editorial >jnhighto…@earthlink.net on 07/20/2001 01:56:07 PM >Please respond to jnhighto…@earthlink.net >To: Self letters/Self/CNP@CNP >cc: >Subject: lupus [Why Are All These Women Sick? June] >————————————————————————– — >—- >Your article regarding systemic lupus was incorrect. >"The disease eventually >attacks the heart and kidneys; more than half of lupus sufferers die within >15 years of diagnosis". >This is NOT true! Lupus does not have to attack your internal organs. Many >of us have no internal organ involvement. And as for dying, we almost >always live a normal life and die at a ripe old age. Your misinformation >has probably scared newly diagnosed patients. Lupus is very common in young >women and we need the correct information out not misleading. >From the Lupus Foundation of America >" People frequently read in the literature that 80-90% of people with lupus >live for more than ten years. Unfortunately, this is often misinterpreted as >meaning that people with lupus live for only ten years. Let us clarify this. >The studies that were done to arrive at this figure were done over a period >of ten years. They followed patients with lupus from the time of diagnosis >for ten years. At the end of these studies they were able to conclude that >80-90% of the people enrolled were still alive. What this study did not look >at is what happened in year 11, 12, 15, 20 and so on. We know that there are >many people living with lupus and have been living with lupus for 15, 17, >19, 25, 27, 30 and 40 years. This is not a disease that is universally fatal >to all. THE MAJORITY OF PEOPLE WITH LUPUS TODAY CAN EXPECT TO LIVE A NORMAL >LIFE SPAN." >If you could do a correct story on lupus, you would help thousands of women >who are suffering. >www.lupus.org has lots of info >Nicole
Response:
Thank you for contacting Self about the article ?Why Are All These Women Sick?? in the June issue. While we appreciate your taking the time to write with your point of view, we stand by the information in the article. Perhaps one of the points below will help to clear up the confusion. * The lupus statistics referred to women whose disease has already affected their organs. * The schleroderma stats were for "systemmic" schleroderma which can attack organs, not ?limited? schleroderma. We hope this helps. Your comments have been forwarded to the editors of the article, so you can be sure your voice has been heard. Thanks for your interest. Helena Massan Self Editorial jnhighto…@earthlink.net on 07/20/2001 01:56:07 PM Please respond to jnhighto…@earthlink.net To: Self letters/Self/CNP@CNP cc: Subject: lupus [Why Are All These Women Sick? June] ————————————————————————— – —- Your article regarding systemic lupus was incorrect. "The disease eventually attacks the heart and kidneys; more than half of lupus sufferers die within 15 years of diagnosis". This is NOT true! Lupus does not have to attack your internal organs. Many of us have no internal organ involvement. And as for dying, we almost always live a normal life and die at a ripe old age. Your misinformation has probably scared newly diagnosed patients. Lupus is very common in young women and we need the correct information out not misleading. From the Lupus Foundation of America " People frequently read in the literature that 80-90% of people with lupus live for more than ten years. Unfortunately, this is often misinterpreted as meaning that people with lupus live for only ten years. Let us clarify this. The studies that were done to arrive at this figure were done over a period of ten years. They followed patients with lupus from the time of diagnosis for ten years. At the end of these studies they were able to conclude that 80-90% of the people enrolled were still alive. What this study did not look at is what happened in year 11, 12, 15, 20 and so on. We know that there are many people living with lupus and have been living with lupus for 15, 17, 19, 25, 27, 30 and 40 years. This is not a disease that is universally fatal to all. THE MAJORITY OF PEOPLE WITH LUPUS TODAY CAN EXPECT TO LIVE A NORMAL LIFE SPAN." If you could do a correct story on lupus, you would help thousands of women who are suffering. www.lupus.org has lots of info Nicole
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