Topic: Bad study, bad article - need people to give "1" ratings
twoangie
Frequent Contributor (1K+ posts)
Member # 1636
posted
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.
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 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.
Posts: 1993 | From Charlotte, NC, US | Registered: Sep 2001
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
[QUOTE]Double post Thats Why in red alot of this has been on here its really Pi**ed alot of people off me included. More from DUCKS
[This message has been edited by treepatrol (edited 26 January 2005).]
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
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.
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 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.
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
[This message has been edited by treepatrol (edited 26 January 2005).]
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
I know it is all wrong and I have created a thread on it earlier today.
There is a problem: The publisher will consider seriously only letters from people with academic degrees - MDs preferred. These are the rules played by this journal.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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Areneli
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Member # 6740
posted
It is not good that Amy Norton gave this poor article so much fame. Writing to her may be more indicated but we don't have her email. All I know is: Amy Norton is a New York-based medical journalist who has written for Reuters Health news service, The Scientist magazine, and Dance Spirit and Dance Teacher magazines. She also teaches ballet and modern dance. Posts: 1538 | From Planet Earth | Registered: Jan 2005
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lymie tony z
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Member # 5130
posted
Hey Amy, If you're out there somewhere you better hope you or no one you know gets this disease. If you really believe what you wrote. Hope they paid you a lot....cuz when you or someone you know gets this disease and all the ducks(mainstream doctors) that read the crud and misinformation that comes from the cdc and ama and jama or whatever give you a month of antibiotics and tell you you're cured...then give you anti-depressants to cope with you're problems and you or someone you know slowly goes insane and finally dies....you can ask yourself....Hey maybe I should have listened to some of those folks that actually have this disease.....instead of the thick headed insurance money bought ducks out there........I give you a one rating on your article...hope you have the decency to come back at me and let me or us on this net set you straight.......equal time...the american way.............................zman
------------------
Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
OK guys, took me 30 minutes of work but I have it.
If you want to write to her so do it. Please note, however, that she is probably completely unaware of our situtation and she needs to be educated not offended. She is actually a good writer and very prolific too. It would be better to have her on our side than against us.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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ConnieMc
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Member # 191
posted
You guys, there is a place to post messages at the end of this article. Same part of the page where you rate it. Mine is the only one so far, so I guess people missed this? Consider posting as well.
Posts: 2276 | From NC | Registered: Oct 2000
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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
Great job, Mike! Posts: 96239 | From Texas | Registered: Feb 2001
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Tincup
Honored Contributor (10K+ posts)
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posted
I want you to hold my children in your arms when they are screaming in pain and suffering from multiple health problems caused by Lyme disease.
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?
shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
My reply on the Yahoo! site...
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.
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Areneli
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Are you all aware that Reuters Health News are repeated by hundred of newspapers and radio stations? Likely it made some news on TV as well all over the world.
These Yahoo page where you all post is unlikely to be ever seen by Amy as Yahoo merely reports the news.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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minoucat
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posted
"Reporting" has a specific meaning. Yahoo does not report the news, nor, in fact, does Reuters; they are delivery services for the story. (Although Reuters does also sponsor reporters, as well as picking up and disseminating news stories, which Yahoo does not).
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.
At the very least, Ms. Amy will get some feedback-- there isn't a writer in the world who doesn't look to see what reviews their pieces are getting. No doubt her family does too, and friends, and rivals.
Areneli
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posted
... and why don't you email her your responses directly.
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.
At least I wouldn't.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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DiffyQue
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twoangie
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Member # 1636
posted
Areneli,
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,
Angie
Posts: 1993 | From Charlotte, NC, US | Registered: Sep 2001
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Areneli
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Look a few posts up. I have submitted here for you guys her email.
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.
[This message has been edited by Areneli (edited 27 January 2005).]
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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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.
"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.
Thirty-six patients with Lyme meningitis diagnosed at the Department of Infectious Diseases, University Medical Centre, Ljubljana in 1993 and 1994 were enrolled in a prospective study. All patients had lymphocytic meningitis, negative serum IgM antibody titres to tick-borne encephalitis virus and met at least one of the following four criteria: i) isolation of Borrelia burgdorferi sensu lato from cerebrospinal fluid (2 patients), ii) intrathecal borrelial antibody production (22 patients) iii) seroconversion to borrelial antigens (3 patients) and/or iv) erythema migrans in the period of four months prior to the onset of neurological involvement (21 patients). All patients underwent antibiotic treatment and were followed up for one year. The results of our study revealed that Lyme meningitis frequently occurs without meningeal signs and is often accompanied by additional neurological and/or other manifestations of Lyme borreliosis. During the first year after antibiotic treatment, minor and major manifestations of Lyme borreliosis persisted or occurred for the first time in several patients. They were not infrequent even at the examination performed one year after therapy".
Oh, of course this research was not peer reviewed by their small group of peers so it does not qualify, correct?
Of the tens of thousands using long term antibiotic treatment where are these great risks patients are exposing themselves to? The risk is miniscule relative to not receiving proper treatment.
The only substantial risk, is to the bottom line of the insurance companies who underwrite treatment (prescription) coverages and to the huge over the counter pain killer industry. A little closer look at where research funding and funding of some of these disease publications and societies comes from would perhaps give a clearer picture of why some so obviously and heartlessly make misstatements.
It's no wonder the authors approve of the sites they do as they (these sites) perpetuate disinformation, mostly by omission of that information they do not want to be known.
It's amazing how many journalists play a role in the disinformation game either wittingly or otherwise.
Your grade is an 'F'.
Regards Jim Wilson A.I.I.C. President, Canadian Lyme Disease Foundation www.canlyme.com
Posts: 144 | From British Columbia | Registered: Sep 2002
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Tincup
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Sooner or later the truth will come out. They are the ones who should be scare to death. On our behalf we already found the truth (we are a step a head) instead they have a long work to do to realize whats going on...and usually that happen when someone that they love more than enything gets infected. No more comments!
Posts: 49 | From greenacres,Florida,USA | Registered: Nov 2004
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NP40
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posted
quote:Originally posted by virginia/anez: Sooner or later the truth will come out. They are the ones who should be scare to death. On our behalf we already found the truth (we are a step a head) instead they have a long work to do to realize whats going on...and usually that happen when someone that they love more than enything gets infected. No more comments!
Very true Virginia,
Eventually, even the arrogance of the Duck community will be steamrolled by the sheer number of lyme sufferers. It's inevitable, and lymies will become a political force. Ten or twenty thousand lymies in a few key states could swing congressional, senatorial, and even presidential elections.
My son was just hospitalized for some of his lyme symptoms, pain, vertigo, insomnia. Our LLMD placed him in a small town hopsital where he practices so he would have a few days to regulate his meds, and get his symptoms under control. Now mind you, this is a 20 bed hospital in the far reaches of northern WI. The nurses told us how they treat lyme patients on a daily basis. How their outpatient services are full of lymies receiving ABX IV's. The cat is completely out of the bag here, and Doc's are treating people regardless of what insurance companies, and ducks have to say about it. Told me some real horror stories about how, they're treating people that Ducks misdiagnosed with MS, etc. Many of these nurses have had family members who've had lyme. The 30 day doxy routine is laughed at here. Dedicated, caring medical professionals, who've seen the ravages of lyme firsthand. They've been giving IV ABX for over ten years here. Said their big problem is that blastosis is a huge problem, and their area isn't recognized by the establishment as an infected area. The nurses and doctors scratch their heads over this, saying "then why the hell are we treating blastosis on a daily basis" ?! Seems like lyme isn't the only politicized ailment. The truth is coming, and all the ducks and insurance executives in the world can't stop it !
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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Dear Health Editor, Please be advised that Amy Norton has caused quite a negative impact on Reuters. I cannot begin to tell you how her shoddy reporting has insulted and harmed many people. I can only direct you to see for yourself. At the very least, I feel that Amy Norton owes the Lyme Disease community a huge apology. Although, she really should write an article regarding the hell that lyme disease victims go through, to undo some of the damage she has caused.
I am curious though, as to why you would use her for your reports. I have researched many of her articles online, and have found that her articles do not involve much, if any, of her own research and do not demonstrate any in-depth reporting skills. Most of her articles seem to be just reprints of studies. It doesn't seem to me that it takes much talent-or skill to do her level of "reporting". (This is strictly my opinion)
This lyme disease article showed only one side-and one opinion. It did not show any willingness or ability to really "research" a story. Laziness? Maybe, but in the mean time she had done alot of damage.
Posts: 144 | From British Columbia | Registered: Sep 2002
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danq
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Member # 2126
posted
"You have given the news article Some Lyme Disease Web Sites Misinform -Study a rating of 1. Its current average rating is 1.27 with 108 vote(s)."
Posts: 2420 | From Davis, California | Registered: Feb 2002
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
quote:Originally posted by Lymetoo: NP....very interesting and sad. What is blastosis??
Good job, Wildthing! Where did you send the letter?
Lymetoo, "Blasto", as we call it here in Wisconsin is a microorganism type infection that people can get from water. Namely , rivers, lakes, that are somewhat stagnant, with algae growth. I believe they can get infected through breathing the small spore, or inadvertently drinking it while swimming, etc. It can be quite deadly, as a friend of mine's child died from it. I believe that it is treatable if caught in time. Very nasty stuff from what the nurses at the hospital told me. It certainly isn't on the scale of lyme as far as number of infections, but it can kill if not treated in a proper time frame. As if we don't have enough to worry about.............
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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Good idea, danq!!....update...."You have given the news article Some Lyme Disease Web Sites Misinform -Study a rating of 1. Its current average rating is 1.27 with 117 vote(s)."
posted
I just submitted this reply to Reuters (on the Reuters homepage.)
"I want let you know that the article by Amy Norton, Reuters on "Some Lyme Disease Web Sites Misinform -Study" from Jan 25, is stirring a lot of negative response due to its lack of objectivity and poor journalistic research."
I also included my email address. Let's see if they reply...
When I was first diagnosed with Lyme Disease, I searched the net for any information possible.
What I found were pages and pages of information that was posted 10 or more years ago.
It took months to find current info and I'm certain this article did not take months of reasearch to compile.
Please do not belittle extremely ill people by relying upon information that is prioritized by whatever particular search engine you happen to be using on a given day.
The doctors who are actually treating this disease in humans are a lot more knowledgeable about it than a professor in a laboratory treating mice.
There is a lot more research information being published as we speak that is backing up the need for longer treatment in chronic or late-disseminated Lyme Disease.
[This message has been edited by Corgilla (edited 03 February 2005).]
Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
Anybody who has sent their letters, any responses?
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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twoangie
Frequent Contributor (1K+ posts)
Member # 1636
posted
Current average rating is 1.31 with 212 vote(s).
There are 31 response letters to the article. I haven't read them but from the sound of the headings...if Amy is reading then she is getting an earful.
Did anyone find a good email address for her and get a response from her?
posted
Avg Rating: 1.31, 214 votes - Your Rating: 1
Not because I disagree with what she wrote, although I do, but because a journalist is supposed to impartialy review all of the facts and report on such. Not one side of the story.
And when I'm less foggy brained, I intend to write to her and her editors.
Posts: 91 | From Atlanta, GA | Registered: Jan 2005
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Cheryl
Frequent Contributor (1K+ posts)
Member # 75
posted
If they rely on articles such as Feder's, ``[p]eople who turn to the Internet with questions about Lyme disease'' most certainly will ``come away with as many wrong answers as right ones.''
As creator of the website http://www.lymeinfo.net , one of the websites targeted by Feder's article, I must say that the LymeInfo website is based both on sound medical literature as well as extensive patient experience.
But please don't take my word for it, just as you shouldn't take Feder's. I encourage readers to visit the website to come to their own conclusions. In particular, I direct readers to the medical literature summaries at http://www.lymeinfo.net/lymefiles.html . These summaries consist of peer-reviewed medical literature that disprove the statement ``there is no evidence that any of the lingering problems associated with Lyme disease are the result of persistent infection with B. burgdorferi.''
I further find Feder's statement that ``some of these sites may have had an agenda other than education'' highly offensive and inflammatory. Since 1997, LymeInfo has been a purely volunteer effort, and I find it both inappropriate and unscientific for Feder to opine as to motive. This website's ONLY purpose is to educate, promote early detection so that irreversible chronic illness and disability is not the result of ignorance, and to provide a comprehensive, reliable reference resource in one well-organized site.
LymeInfo is a collaborative work of highly educated and knowledgeable people. At the end of the day everyone who has contributed to the website can feel satisfied that the website has given people a place to turn to receive accurate information about tick-borne illnesses.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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