The information source I am talking about is Wikipedia, and while some of you may feel it is not a serious source for people to consult for health information, nevertheless, it is a fact that hundreds of thousands of people do use this online encyclopedia. It is therefore crucial that the Lyme info there is accurate.
Wikipedia was set up as a "people's encyclopedia" where anyone at all may edit entries. However, there are certain rules, for example, factual information must be referenced by reliable sources etc.. They have a small staff that checks these things, and whom you can alert when the rules have been broken.
Sadly a number of malicious Steerites have been continually editing the entry to remove material showing the true prevalence, chronicity, severity etc of Lyme, the uselessness of current diagnostic approaches etc.. In addition they have massively censored all information on conflicts of interest.
Because people are not required to give their real names, we cannot know for sure who the Steerite posters are, however, one of the worst offenders, who uses the name "Nighthawkj", has revealed that he is a microbiologist.
This microbiologist has been extremely active and has deleted for example, a 1970's quote from scientist Jay Sanford affirming that it is well known that borrelia persist in the brain and eye. He has also deleted many important paragraphs written by a member of LymeNet which details the connections of leading Steerites like Alan Barbour, Mark Klempner etc with biowarfare.
There is only the briefest mention of Blumenthal and NO mention of his finding that the IDSA Lyme committee was corrupt.
I have tried to make corrections today but found the uploading would not work, even though my computer seems okay otherwise. However it will take many hands to correct the amount of misleading statements and damaging deletions that the mysterious "microbiologist" and his friends have done.
You can easily register for free at www.wikipedia.org. You choose a username and password and although the rules may seem very complex at first, there are tutorials to help. It is not necessary to learn all these rules - you can simply click on the Edit link next to any section in the Lyme article you wish to change or correct.
There is a section called "Talk" where people discuss the changes they made, and you can also access the entire history of all changes ever made, with the dates they were made and the usernames of those who made them.
-------------------- Justice will be ours. Posts: 786 | From UK | Registered: Oct 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey 7 legs too many...
I just read the entire page... and it seemed to be not too bad. Quite good in most parts... and quite telling.
I didn't "count" but my guess is there are about 4-5 places with minor corrections that could be done.. but nothing earth shattering.
Maybe I am not seeing what you saw?
Also note... to even get the word "Lyme" printed anywhere for 20 years was nearly impossible... and I would have only dreamed of this kind of info ever being shared back then. So my acceptance levels may be a bit more relaxed than others.
If it were MY article I would correct those spots... but actually most of the stuff is quite accurate.
I was going to try to help... but I am not sure what exactly you think we should change. Please advise.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Yes I spend over 2.5 hours, editing and updating this page about 2 weeks ago. Most if not all of my edits are gone. Especially the info on Blumenthal and the IDSA.
I did however save a copy in word so I can repost.
One thing I found troublesome about the existing post is how scientific, mysterious and complicated it sounded.
And it was all about Ticks and technical BS- and as we all know Lyme is about People, not ticks.
I will update my posts again and will look into Wiki a bit more. I think there are ways to set alerts and I can also let the staff know this site continues to be defaced.
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
posted
FYI..This link will take you to a "Wiki-Like" page that will tell you who performed edits on Wikipedia pages, be they individuals,groups,or organizations. http://wikiscanner.virgil.gr/ Here is the related NY Times article from last year.. http://tiny.cc/3ZSVL It's a good insight into who's playing "Big Brother", be they corporate,government,or private...Joe
Posts: 249 | From Northern NJ | Registered: Jul 2005
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posted
Additional info about "WikiScanner", in case you're wondering about edits from 2008... http://virgil.gr/31.html Scroll down to "Why are there no edits from 2008?" ...Joe
Posts: 249 | From Northern NJ | Registered: Jul 2005
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posted
One more comment, and then I'll sit down. From the "Wiki-Scanner" FAQ page http://virgil.gr/31.html Scroll down to the "What kind of vandalism and disinformation have you found?" I rest my case...Joe
Posts: 249 | From Northern NJ | Registered: Jul 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
quote:Originally posted by Tincup: Well look at that! It has changed!
This is a nightmare!
I have managed to get in and do some repair work, but because there are people like the mysterious "microbiologist" constantly defacing it with Steere camp misinformation, it is a mammoth task to keep the article in good order.
If everyone on Lyme Net who feels well enough to do so, could commit to spending just 10 minutes a week checking for vandalism and correcting errors, we would have a good informative Lyme article up there for millions of viewers to read. The Steere camp have only very few people who are both knowledgeable and obsessive enough to keep removing our factual information and replacing it with their garbage on a daily basis. We outnumber them by thousands to one!
One way to see what changes have been made is to click the "History" tab at the top of the page. This shows a listing of all edits made in date order, the most recent at the top. You can then click various links which allow you to compare an edited version with how it looked just before it was altered. The the two versions are displayed side by side, with the changes highlighted in a different colour, so you can see exactly what has been done. You can also see the internet name of the person who made the change.
Those who have registered an internet name with Wikipedia have their IP address logged by the staff (it's not normally made available to the public). However staff may publicise the IP address in cases where someone commits serious sabotage of the site. So in theory we can report a Steerite who vandalises the Lyme article,if he has registered with them, and his IP will be revealed.
If a person has not registered, his IP address ***automatically*** shows up, which means his identity (or at least the institution/company whose computer he posted from) can be revealed using the Wikiscanner tool someone mentioned earlier.
Yesterday I removed a sentence claiming that 80% of Lyme cases begin with an EM rash. The true figure is less than 50%, of course. This type of misinformation, read by a person who is brand new to the world of Lyme, could make all the difference between that person seeking help in time to arrest their illness, or missing the tiny window of opportunity and going on to develop the nightmare of chronic Lyme.
That's why it is so important to keep this site, with its absolutely massive readership, up-to-date and accurate.
Elena
-------------------- Justice will be ours. Posts: 786 | From UK | Registered: Oct 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
6 legs too many said..
"Yesterday I removed a sentence claiming that 80% of Lyme cases begin with an EM rash. The true figure is less than 50%, of course."
Good for you! I am not real technical computer wise... so thank you for staying on top of it.
posted
Hi, Hope people don't mind if I continue a theme from this thread under a new title in Medical, rather than General Support. The pesky and anonymous Steere camp "microbiologist" has removed my info yet again and this time I am replying to him via an open letter which I am copying to Lyme forums.
My title on "Medical" section will be "Open Letter re Censorship of Info on the Lyme controversy"
Thanks to all who are helping keep Wikipedia's Lyme entry factual, despite the Steerite pests.
Elena
quote:Originally posted by Tincup: 6 legs too many said..
"Yesterday I removed a sentence claiming that 80% of Lyme cases begin with an EM rash. The true figure is less than 50%, of course."
Good for you! I am not real technical computer wise... so thank you for staying on top of it.
-------------------- Justice will be ours. Posts: 786 | From UK | Registered: Oct 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
In my prior post I mentioned I had an accurate version of the original article we had from 2006. We can reestablish correct data using this template. If you visit Wikipedia, you'll find the IDSA has completely absorbed our data, so let's get started.
Since we're starting from scratch again:
Teamwork:
We should put a team together to re-establish the original post. Each of us should pick a section and then one person should be responsible for the final edit to make sure all references are correctly linked to the correct citation, and that the table of contents and grammar are accurate. The key isn't to erase everything and replace it, but rather to reincorporate the correct data that "balances" the circumstances.
Individual Responsibility
Each person may choose two sections here. I will list the Table Of Contents for the original 2006 Update, and you can choose the one you want. I will also post the 2009 Table Of Contents which you will also choose a section that corresponds to your first. If a section is unique to only one version, such as the 2009 version has a section for "Documentary" -- you can choose to do just one alone.
Accuracy, Ethics, Credibility
It will be your job to accurately re-update the data using the old information and to then compare it with the latest IDSA altered data. You may keep some IDSA data if the facts support it's relevancy in the debate. Have integrity and support all facts with sources from both sources of the IDSA and ILADS. Ethics is crucial. Do not bias your data, because trust me, others will be reviewing what you write and it must reflect truth and facts.
2006 Version
Here was the original table of contents of the NOVEMBER 7th Update on WikiPedia Topic Lyme Disease.
Contents * 1 Symptoms ........o 1.1 Acute (early) symptoms that may occur ........o 1.2 Chronic (late) symptoms
* 2 Transmission ........o 2.2 Transmission by ticks ........o 2.3 Congenital Lyme disease ........o 2.4 Other modes of transmission
* 3 Microbiology ........o 3.1 Strains ........o 3.2 Genomic characteristics ........o 3.3 Structure and growth ........o 3.4 Mechanisms of persistence
* 4 Diagnosis * 5 Prognosis * 6 Treatment
* 7 The Lyme controversy ........o 7.1 Two standards of care ........o 7.2 The CDC case definition ........o 7.3 Testing ........o 7.4 Long-term antibiotic therapy .....................*7.4.1 Evidence from controlled studies .....................*7.4.2 Evidence from uncontrolled studies .....................*7.4.3 Implications for treatment
* 8 Prevention ........o 8.1 Proper Removal of Ticks
* 9 Ecology
* 10 Epidemiology
* 11 History
* 12 References
* 13 External links
2009 Version
Here was the original table of contents of the 2009 Update on WikiPedia Topic Lyme Disease.
Contents
* 1 Symptoms ........o 1.1 Stage 1 - Early localized infection ........o 1.2 Stage 2 - Early disseminated infection ........o 1.3 Stage 3 - Late persistent infection
Choose Corresponding Section of 2006 ver. with 2009 ver.
This is a review: Once you choose your content page section for the original 2006 section, you must then choose a corresponding section from the 2009 contents. Your job is to connect them, organize them, extract useful data to make them balanced and useful to readers who may come to Wikipedia as their source of information on this disease. Again, you may add new updated information to your section that is not available on the section I give you, but it must be cited, credible, and honest.
Example of sections chosen and what to post once you've made your decision.
REMEMBER, all updates are posted on another thread. Here is the link:
* 1 Symptoms ........o 1.1 Acute (early) symptoms that may occur ........o 1.2 Chronic (late) symptoms
"I chose the corresponding section for the 2009 version:
* 1 Symptoms ........o 1.1 Stage 1 - Early localized infection ........o 1.2 Stage 2 - Early disseminated infection ........o 1.3 Stage 3 - Late persistent infection
As you can see, one person would cover all these sections and edit them. You may choose bigger sections like these, or a smaller section for those who don't feel they can manage bigger sections. A smaller section might be:
"I chose Prognosis from the 2006 version"
* 5 Prognosis
"I chose Prognosis from the 2009 version"
* 7 Prognosis
Who Is Keeping Track?
We are. There will be a main editor, but it's up to each of you individually to work on your individual section and to them contact the editor once finished. Do not post your actual entire section here when finished, you will go to the webpage at the very bottom of this article to update us and to post which sections you chose. When you finish your version post it to Wiki, and then post the title of your section on a thread called "Wikipedia Battle In Full Swing" -- you'll find the link at the bottom of this post.
Let's Begin
So who wants to begin? Take your time with your update. Write it out in Word, Notepad -- or whatever you wish, and keep a copy of it until you're ready to finalize the data. Once finished, you can PM the person here who decides to handle the editing process. This way the changes are done incrementally on the Wiki page, not all at once, which would send a signal. I realize by discussing this here publicly, that it may raise a red flag, but suffice to say it's the best course of action.
Summary
*1: Choose your contents section from the original 2006 data. *2: Choose a second section from the content section of the 2009 data. *3: When you finish choosing your content section go to the thread titled "Wikipedia Battle In Full Swing" -- you'll find the link at the bottom of this post. *4: Fuse the two contents sections you chose from 2006 and 2009. Fuse them together using credible sources and intelligent writing. Do not speculate. Your data must rely on studies, and resources supporting both sides of the debate. *5: Contact the primary editor by PM and revise the data until it reflects accurate data that helps our cause while also being ethical and objective. *6: Once your section has been revised with the editor, notify us with a quick note that your section has been posted. Members should not attempt to continue revision at this time.
Most Important: Lead Editor
Who is up for the challenge of handling the entire editing process? Your job will be to work with each person who comes to you with their individual section. You will read and review both copies of the original 2006 and 2009 Wikipedia entry, and to be reasonable and ethical about it's application when the individual hands in their version.
Scientific Journal Background
My choice for an editor would be Oxygenbabe by default if she were still here and still willing. Someone with a scientific journalism background would be most helpful, though anyone confident in meeting the challenge can accept.
How To Review Copies Of 2006 Version and 2009 Version
To receive the original copies of the 2006 version and the 2009 version:
This thread will be where you document which sections you chose and all information will go here: Anything having to do with the Wikipedia team project should go to this post below.
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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