posted 26 January 2005 14:30               

However, since it has happened we need to do some form of damage control. Obviously, we don't have many options. The article posted on Yahoo does give an option to rate their article. Please, go there and give it a "1" out of 10 because a 1 means it is not worth the read. It's not much but maybe it will influence them a little about what to post in the future.

The yahoo article is at:
http://story.news.yahoo.com/news?tmpl=story&u=/nm/20050125/hl_nm/lyme_web_dc_1

I can't get the UK copy of the article to pull up so I don't know if it gives the opportunity to rate the article there or not. However, if anyone is given such an opportunity, please do rate it low. It is located at:
http://www.reuters.co.uk/newsArticle.jhtml?type=healthNews&storyID=7428009

Also, does anyone know where a letter to the editor can be sent about the writer of this article? I think she did a horrible job reporting this "study" because she completely neglected to contact any of the groups who were knocked in order to give them a chance to respond to the study. Of course, that also leads me to believe that she was likely paid by them to do the reporting. What a mess. No doubt in my mind Feder and these nasty men and sitting back and laughing at the mess they've created. I hope it comes back to bite them in the a$$!

Here's the link to my original post when they published the study.
http://flash.lymenet.org/ubb/Forum3/HTML/011748.html

Here's the article as written by that fluke of a journalist Amy Norton

Some Lyme Disease Web Sites Misinform -Study

By Amy Norton

NEW YORK (Reuters Health) - People who turn to the Internet with questions about Lyme disease may come away with as many wrong answers as right ones, a study of 19 Web sites suggests.

According to researchers at the University of Connecticut Health Center, nine of the Web sites they analyzed gave inaccurate information on at least two key elements of Lyme disease, a bacterial infection transmitted by certain ticks.

The problems included flawed information on such basics as diagnosis, treatment and the potential for long-term complications, according to findings published in the Pediatric Infectious Disease Journal.

Lyme disease has long been the subject of controversy, with some patient advocacy groups and doctors arguing that long-term complications from the infection are common, and that, accordingly, prolonged use of antibiotics is often necessary. Medical research, however, has not supported those contentions, noted Dr. Henry M. Feder, one of the co-authors of the new study.

Still, he and colleague Dr. James D. Cooper found, such (mis)information was readily available on several of the sites they studied -- particularly those with the word "Lyme" in the title.

"The problem," Feder told Reuters Health, "is that some of these sites may have had an agenda other than education."

In particular, some sites "make the unusual seem common," said Feder, referring to the long-term health problems that sometimes arise with Lyme disease -- such as recurrent arthritis.

In the U.S., Lyme disease is seen mostly in the northeastern and north-central states -- where it is transmitted by deer ticks infected with the bacterium B. burgdorferi -- and on the Pacific Coast, where it is transmitted by western black-legged ticks carrying the same bacterium.

In most cases, the first sign of Lyme disease is a red, slowly expanding rash that has a clear center, making it resemble a "bull's eye." Symptoms such as fatigue, fever, headache, stiff neck, and sore muscles and joints typically arise at this point.

If the disease is not treated with antibiotics, some people may, weeks to months later, develop complications including arthritis, nervous system conditions such as facial paralysis and inflammation around the brain, and, rarely, cardiac problems such as an enlarged heart.

In addition, some patients complain of more vague ongoing symptoms, including fatigue, memory problems and muscle pain.

Compared with the objective complications of Lyme disease -- such as arthritis, which most often causes swelling in the knees -- the more subjective long-term symptoms are hard to pin on the Lyme infection, Feder said, since problems like fatigue and aches and pains are common in the general public.

In addition, he noted, there is no evidence that any of the lingering problems associated with Lyme disease are the result of persistent infection with B. burgdorferi -- making months of antibiotic treatment needless at best. Standard treatment calls for around 20 days of oral antibiotics.

Beyond being unproven in terms of effectiveness, prolonged antibiotic use can be dangerous, Feder noted. When given through an IV, he said, the therapy exposes patients to the risks of infection and blood clots. In addition, any overuse of antibiotics can change the environment of the gastrointestinal tract, and promote antibiotic resistance.

For their study, Feder and Cooper looked at 19 Web sites with general information on Lyme disease. They focused on eight topics, such as managing a tick bite, diagnosis of Lyme disease, treatment and long-term effects. Information was considered inaccurate if it differed from "evidence-based information" like that in guidelines established by several medical societies.

The researchers found that nine of the 19 sites had inaccurate information in at least two categories. Among the errors were statements saying that preventive antibiotics should be given for all cases involving a tick bite, and that antibiotic treatment lasting months to years may be needed for confirmed Lyme disease.

Of the Web sites the researchers studied, the two from government agencies -- the Centers of Disease Control and Prevention (news - web sites) and the Food and Drug Administration (news - web sites) -- were deemed accurate, if not all-encompassing. The same was true of the Web site of the American College of Physicians and two academic-affiliated sites.

In contrast, seven of the eight sites with "Lyme" in their titles -- something that may imply authority to Internet users -- contained flawed information, according to Feder and Cooper. The exception was the American Lyme Disease Foundation.

SOURCE: The Pediatric Infectious Disease Journal, December 2004.

posted 26 January 2005 14:38               

quote:

---

Originally posted by twoangie:
By now, I think most are aware of the flawed study put out by the other side stating that the information found on the internet (translation - OUR sites only) is flawed. Total bogus and a waste of money spent on a worthless "study" when the money could have been spent on a real study that could have been beneficial.

However, since it has happened we need to do some form of damage control. Obviously, we don't have many options. The article posted on Yahoo does give an option to rate their article. Please, go there and give it a "1" out of 10 because a 1 means it is not worth the read. It's not much but maybe it will influence them a little about what to post in the future.

The yahoo article is at:
http://story.news.yahoo.com/news?tmpl=story&u=/nm/20050125/hl_nm/lyme_web_dc_1

I can't get the UK copy of the article to pull up so I don't know if it gives the opportunity to rate the article there or not. However, if anyone is given such an opportunity, please do rate it low. It is located at:
http://www.reuters.co.uk/newsArticle.jhtml?type=healthNews&storyID=7428009

Also, does anyone know where a letter to the editor can be sent about the writer of this article? I think she did a horrible job reporting this "study" because she completely neglected to contact any of the groups who were knocked in order to give them a chance to respond to the study. Of course, that also leads me to believe that she was likely paid by them to do the reporting. What a mess. No doubt in my mind Feder and these nasty men and sitting back and laughing at the mess they've created. I hope it comes back to bite them in the a$$!

Here's the link to my original post when they published the study.
http://flash.lymenet.org/ubb/Forum3/HTML/011748.html

Here's the article as written by that fluke of a journalist Amy Norton

Some Lyme Disease Web Sites Misinform -Study

By Amy Norton

NEW YORK (Reuters Health) - People who turn to the Internet with questions about Lyme disease may come away with as many wrong answers as right ones, a study of 19 Web sites suggests.

According to researchers at the University of Connecticut Health Center, nine of the Web sites they analyzed gave inaccurate information on at least two key elements of Lyme disease, a bacterial infection transmitted by certain ticks.

The problems included flawed information on such basics as diagnosis, treatment and the potential for long-term complications, according to findings published in the Pediatric Infectious Disease Journal.

Lyme disease has long been the subject of controversy, with some patient advocacy groups and doctors arguing that long-term complications from the infection are common, and that, accordingly, prolonged use of antibiotics is often necessary. Medical research, however, has not supported those contentions, noted [b]Dr. Henry M. Feder., one of the co-authors of the new study.

Still, he and colleague Dr. James D. Cooper, found, such (mis)information was readily available on several of the sites they studied -- particularly those with the word "Lyme" in the title.

"The problem," Feder told Reuters Health, "is that some of these sites may have had an agenda other than education."

In particular, some sites "make the unusual seem common," said Feder, referring to the long-term health problems that sometimes arise with Lyme disease -- such as recurrent arthritis.

In the U.S., Lyme disease is seen mostly in the northeastern and north-central states -- where it is transmitted by deer ticks infected with the bacterium B. burgdorferi -- and on the Pacific Coast, where it is transmitted by western black-legged ticks carrying the same bacterium.

In most cases, the first sign of Lyme disease is a red, slowly expanding rash that has a clear center, making it resemble a "bull's eye." Symptoms such as fatigue, fever, headache, stiff neck, and sore muscles and joints typically arise at this point.

If the disease is not treated with antibiotics, some people may, weeks to months later, develop complications including arthritis, nervous system conditions such as facial paralysis and inflammation around the brain, and, rarely, cardiac problems such as an enlarged heart.

In addition, some patients complain of more vague ongoing symptoms, including fatigue, memory problems and muscle pain.

Compared with the objective complications of Lyme disease -- such as arthritis, which most often causes swelling in the knees -- the more subjective long-term symptoms are hard to pin on the Lyme infection, Feder said, since problems like fatigue and aches and pains are common in the general public.

In addition, he noted, there is no evidence that any of the lingering problems associated with Lyme disease are the result of persistent infection with B. burgdorferi -- making months of antibiotic treatment needless at best. Standard treatment calls for around 20 days of oral antibiotics.

Beyond being unproven in terms of effectiveness, prolonged antibiotic use can be dangerous, Feder noted. When given through an IV, he said, the therapy exposes patients to the risks of infection and blood clots. In addition, any overuse of antibiotics can change the environment of the gastrointestinal tract, and promote antibiotic resistance.

For their study, Feder and Cooper looked at 19 Web sites with general information on Lyme disease. They focused on eight topics, such as managing a tick bite, diagnosis of Lyme disease, treatment and long-term effects. Information was considered inaccurate if it differed from "evidence-based information" like that in guidelines established by several medical societies.

The researchers found that nine of the 19 sites had inaccurate information in at least two categories. Among the errors were statements saying that preventive antibiotics should be given for all cases involving a tick bite, and that antibiotic treatment lasting months to years may be needed for confirmed Lyme disease.

Of the Web sites the researchers studied, the two from government agencies -- the Centers of Disease Control and Prevention (news - web sites) and the Food and Drug Administration (news - web sites) -- were deemed accurate, if not all-encompassing. The same was true of the Web site of the American College of Physicians and two academic-affiliated sites.

In contrast, seven of the eight sites with "Lyme" in their titles -- something that may imply authority to Internet users -- contained flawed information, according to Feder and Cooper. The exception was the American Lyme Disease Foundation..

SOURCE: The Pediatric Infectious Disease Journal, December 2004.

[/B]

---

The ALDF Site heads of Ducks.

BOARD OF DIRECTORS

Executive Director
Mr. David L. Weld

Directors
Mr. Jeffrey Black Mr. David G. Nichols, Jr.
Mr. Thomas P. Farrell Mr. Red Pfohl
Durland Fish, Ph.D. Mr. Bob Proctor
Mr. Tony Langham Mr. Arthur C. Romaine
Mr. Michael Marrus Ms. Marcia Saunders

Ex Officio
Mr. James Handelman

NATIONAL SCIENTIFIC ADVISORS

Alan G. Barbour, M.D.
Professor of Medicine
Department of Microbiology and
Molecular Genetics
Univ. of CA at Irvine Med. School Andrew Pachner, M.D.
Professor of Neurosciences
Department of Neurology
Georgetown University
Stephen Barthold, D.V.M., Ph.D.
Director of the Center for
Comparative Medicine
University of California at Davis Robert T. Schoen, M.D.
Clinical Professor of Medicine
Yale University School of Medicine
Jorge Benach, Ph.D.
Professor of Medicine & Microbiology
Department of Pathology
State Univ. of NY at Stony Brook Eugene D. Shapiro, M.D.
Professor of Pediatrics and Epidemiology
Yale University School of Medicine
Durland Fish, Ph.D.
Associate Research Scientist
Dept. of Epidemiology & Public Health
Yale University School of Medicine Leonard Sigal, M.D.
Chief of Rheumatology and Connective
Tissue Research
Director of the Lyme Disease Center
Robert Wood Johnson Medical School
Russell Johnson, Ph.D.
Professor of Microbiology
Department of Microbiology
University of Minnesota
School of Medicine Daniel E. Sonenshine, Ph.D.
Professor of Biology
Department of Biological Sciences
College of Sciences
Old Dominion University
Robert Lane, Ph.D.
Professor of Entomology
Division of Insect Biology
College of Natural Resources
Univ. of California at Berkeley Allen (((((Steere))))), M.D.
Director of Rheumatology
Massachusetts General Hospital
Dennis White, Ph.D.
Director of the Tick-Borne
Diseases Institute
State of New York Dept. of Health

Remember the ones in red

posted 26 January 2005 15:09               

quote:

---

Originally posted by Areneli:
She also teaches ballet and modern dance.

---

I gave my rating of "1".....Her article's current rating is 1.67 with ONLY 12 votes.

Get there and place your vote!

posted 26 January 2005 16:41               

Amy Norton
Brooklyn, NY
USA

E-Mail: norty01@earthlink.net

You may also see her face at: http://www.facetoface.org/home_pg5.html#53

posted 26 January 2005 18:16               

Dear Amy Norton,

The viewpoint of your article is totally one- sided. Even though you are upfront about the "controversy" aspect of Lyme, you go on to look at things from only one side when obviously there must be other viewpoints.

You committed classic journalistic error by not even trying to being objective.

Just to give one example of what I'm talking about:

Amy Norton wrote:
"The researchers found that nine of the 19 sites had inaccurate information in at least two categories. Among the errors were statements saying that preventive antibiotics should be given for all cases involving a tick bite, and that antibiotic treatment lasting months to years may be needed for confirmed Lyme disease."

Information does NOT become inaccurate just because 19 researchers say so. Obviously the 19 researchers don't subscribe to the idea of long-term antibiotics. But that does NOT make that treatment wrong! It only makes it NOT supported by those 19 individuals.

Do you want me to find 19 researchers who DO subscribe to long-term antibiotics?

Lyme literate MDs do! For the obvious reason that it helps!

For years mainstream doctors, and experts, also thought that you should stay in bed and rest if you had backpain.

Guess what? They were wrong!

For years mainstream doctors, and experts, also thought that you should avoid fatty foods at all costs if you wanted to loose weight.

Guess what? They were wrong!

You should educate yourself, objectively, about chronic Lyme disease and the socalled co-infections that accompany it (also transmitted by the deer tick.)

Lyme disease is extra-ordinaryly difficult to treat. There's a lot of "trial and error" associated in finding the right combination of antibiotics, helper drugs and nutritional supplements.

Another unknown fact about the Lyme bacteria is that it reproduces over a 4-week period. For this reason alone, time to recovery will necessarily be slow. It also means a correspondingly longer antibiotic treatment program.

In contrast, the more common bacteria found in strep throat, infected wounds and in most other bacterial infections, have reproduction cycles of 2-4 days.

Lastly, the Lyme bacteria is, I believe, one of the most complex pathogens known to man. It is very crafty in hiding from our immune system and antibiotics and is thus a bastard to kill.

I hope you don't feel like you have backed yourself into a corner. Cause you have NOT.

It's human to err. It's human to listen to esteemed experts. How could they be wrong?

You're a journalist, right? Here's a challenge for you:

Do you believe everything the president of the US says?

No, right?

If you're willing to admit this, then why should you believe everything your "experts" say?

I can assure you that your experts have an agenda...just like anyone else does, incl the president.

Why don't you join the "other" side of the Lyme controversy for a week or so, and then write another article for their side?

posted 26 January 2005 18:56            

I ask that you spend one hour with the child who can't read in the 5th grade due to the cognitive problems they are having from a Lyme disease infection.

I wish you could explain to the 16 year old boy why he unable to keep up with the other kids in school when he is placed in special classes, all due to a tick bite.

I want you to explain to the children why their belongings have been sold to pay for the medicines needed to keep the family alive.

I want you to tell the kids why their family pet of 5 years suddenly died from tick borne diseases... at Christmas time... and why their mother lays in bed too sick to move.

I want you to speak to my nephew.. age 11 .. and tell him he will be ok after his mother died from Lyme disease.

Or maybe simply spend some time finding out the real story before insulting those who are fighting for their lives?

posted 26 January 2005 20:06               

Dear Amy,

I was saddened to read your report on the erroneous "research" of websites on Lyme. Drs. Cooper and Feder have done a disservice to people who suffer with Lyme disease, one of the fastest-growing infectious diseases in this country. I suspect that they may in fact be the ones with an "agenda other than education."

Because it attacks so many body systems, and is prevalent in the areas immediately surrounding New York City (Westchester County and Fairfield County are hugely endemic), I am sure that many dancers could be helped by giving out accurate information.

I understand you are a dance teacher, so I know you understand what body awareness is. We have to have it, or we cannot keep our instrument in good shape to do what we do: dance. As a dance performer, choreographer, and instructor myself for over 20 years, I know plenty about fatigue. The kind of fatigue I have had while Lyme infected is NOT the same. It is debilitating fatigue. For me, it feels like what you feel when you have swum for hours and then try to climb out of the pool by a ladder, as if your own body is too heavy to move. It is the kind of fatigue that makes it necessary to nap just to get through a day, or to sleep the whole next day. It means changing how I teach, and curtailing a lot of hours that I used to teach. It is NOT the "fatigue and aches and pains that are common in the general public."

You and I know what fatigue and aches and pains are. It is NOT the same. And the days when I am not affected, which have NO correlation to how hard I've worked, convince me that I not just getting older, nor is it all in my head.

I would welcome some time to speak more about this subject. Then perhaps you can write an article in "Dance Spirit" that would help young dancers get proper treatment, before a stupid tick ends their careers before they've even started.

Feel free to contact me for more info.

posted 26 January 2005 21:20               

Responding to this story and others like it, in any venue in which they appear, is helpful. If I see this in my local paper, I'll write the same response as I did on the yahoo site. But I'd rather have that response on record somewhere than give up because there are thousands of venues that I can't get to.

posted 26 January 2005 21:53            

You said..

"These Yahoo page where you all post is unlikely to be ever seen by Amy as Yahoo merely reports the news."

Maybe so?

But it sure beats kicking the screen out of the computer.

GREAT job you guys!

Sock it to 'em!

------------------
If you get the choice to sit it out or dance...

posted 26 January 2005 23:10            

Bill Robinson hiked all three long-distance trails that year--AT; Pacific Crest Trail; and Continental Divide Trail. He was featured in Sports Illustrated as the first "Triple Crown" (in one year) hiker.

Bill began Jan.1st from Georgia. I began Feb4 from Georgia. Our time to the half-way point--Harpers Ferry--was appx. 6 weeks.

That means had I had the money, I might have been able to challenge him as the only hiker doing the Triple Crown in one year.

60 year old "Lindy" hiked the entire AT in 2-1/2 months. 60 years old! That's an AVERAGE of 30 miles per day.

I had hopes of improving towards Lindy's time, and becoming a long-distance marathon hiker, perhaps raising money for charitable causes.

Huge incentive to do so.

In 2002 diagnosed with Lymes after tick bite/EM rash in Santa Rosa, CA.

My long distance hiking days are over. A doctor told me so. And I've yet to prove him wrong. The fatigue on my body is tremendous. And I know how to walk through fatigue from hiking 30+ mile days. This is worse.

Think again, Amy.

Bruce Deile

posted 27 January 2005 01:04               

Chances that she will read your letters on Yahoo site is low or close to zero.

She writes daily several articles like the one in question. Just check Reuters news and you will find her name everywhere and she also produces for other agences and organisations. As I have mentioned she's a very prolific writer. She has most likely several assistances who help her and some of 'her' writing is in reality written by somebody else. She probably supervise some ghost writers.

I don't think she has time to follow them (ther articles) up on some remote internet servers.

posted 27 January 2005 05:08               

Ok, if she puts out so much then there has to be a place to write to her, or to write to the place that employs her. It can't just be these "response to article" things. There has to be an address to her or her editor somewhere. Let us know if you find anything. Thanks!

To everyone else,

We're at "...current average rating is 1.27 with 78 vote(s)." It would be cool to break 100. We can't double vote so if anyone is out there who has not voted, please do on the skinny chance that it gets looked at somewhere. Hey, and if nothing else, if no one "important" catches the poor rating...maybe someone out there looking for help will. Maybe that poor rating will help them to realize that they should keep looking and not stop at the ALDF, WebMD, and all those other worthless sites.

Thanks,

posted 27 January 2005 07:43               

I have got it from the business that advertises freelance writers - that is what she is, right? She is popular but always looking for new orders and gave up her email to Internet users.

posted 27 January 2005 12:20               

The yahoo article is at: http://story.news.yahoo.com/news?tmpl=story&u=/nm/20050125/hl_nm/lyme_web_dc_1

posted 27 January 2005 16:26               

To: norty01@earthlink.net

C.C. health.editor@reuters.com

Dear Ms. Norton,

Reference this article of yours:

Some Lyme Disease Web Sites Misinform -Study
By Amy Norton

This is not only poorly researched, it is dangerous.

Perpetuating the myth that chronic Lyme disease is a rare occurrence impedes the diagnosis of many very very sick people.

Your article did not explore the possibility that the authors of this 'study of websites'
may be a self serving group who must take a particular position on this matter because of their past mistakes or their compromised status.

Legislation has had to be enacted in several states to protect doctors from this very nonsense and more states now have legislation in the works.

Some rather alarming comments made by the authors show their wilful lack of knowledge of the disease process.

Arthritis occurs in only 30% or less of Lyme disease cases and can involve any joint, not necessarily the knees. Of those who get arthritis many have it in the hands, hips, back, shoulders, collar bone, feet etc.. Once again this is indicative of researchers with little exposure to the public... and the real world presentations of the disease.

More of their incompetent diatribe spewed this; "there is no evidence that any of the lingering problems associated with Lyme disease are the result of persistent infection with B. burgdorferi -- making months of antibiotic treatment needless at best. Standard treatment calls for around 20 days of oral antibiotics."

The standard treatment they refer to of 20 days of antibiotics has led to thousands of treatment failures. It is however, good for those who underwrite the prescription coverage to limit the amount they have to pay.

Perhaps the authors' have no access to the research world at their institution.

For just a small sampling of research done in this regard see:
www.lymeinfo.net/medical/LDPersist.pdf

and

"Wien Klin Wochenschr. 1999 Dec 10;111(22-23):961-3.

Lyme meningitis: a one-year follow up controlled study.

Cimperman J, Maraspin V, Lotric-Furlan S, Ruzic-Sabljic E, Strle F.

Department of Infectious Diseases, University Medical Centre, Ljubljana, Slovenia.