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» LymeNet Flash » Questions and Discussion » Medical Questions » Open Letter re Censorship of Info on Lyme Controversies

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Author Topic: Open Letter re Censorship of Info on Lyme Controversies
Eight Legs Bad
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Hi all

This relates to a thread originally being discussed in General Support. Basically it concerns anonymous individuals from the Steere camp who are removing/altering/defacing the entry for Lyme in Wikipedia, an online encyclopedia used by hundreds of thousands of people.

Examples of items removed include any discussion of Blumenthal's findings, the fact that EM rashes ar often absent in Lyme, and evidence of a link between Lyme and biological weapons research.

Below is my open letter to "Nighthawk J", a an anonymous microbiologist who has recently been removing material.

Elena

Open Letter to Nighthawk J

I am sharing this discussion with members of the Lyme community via online forums such as Lyme Net, because those most entitled to know all essential and relevant facts about this disease are, after all, those who have had their lives ruined by it.

That said, let's deal with the issues. This debate has been very long, and it would be unreasonable to expect people, especially Lyme patients, so many of whom suffer cognitive impairment, to concentrate on dozens of issues at once. I will therefore reply, for now, only to the points in your above comment.

You state that I have not provided proper references for my assertion that that ``a disproportionate number of leading Lyme disease researchers are involved in biowarfare research''.

My original Wikipedia paragraph gave examples, with proper references, of the biowarfare background of four highly important figures in Lyme disease science - Mark Klempner (whose 2001 paper is consistently used by doctors and insurance companies as the basis for denial of treatment for chronic Lyme); Alan Barbour, considered co-discoverer of the causative agent of Lyme; Allen Steere, so-called discoverer of the disease in the 1970's and the leading proponent of ``Steere camp'' thought; and Jorge Benach.

In addition one reference led to an article I wrote called ``Lyme Disease is a Biowarfare Issue''. While you may not be happy at me referencing my own article, nevertheless that article contains several more references supporting the same point - ie that a disproportionate number of the most important Steere camp Lyme researchers have a background in biowarfare.

They are all solid references and can be found at the website of NY radio presenter Dave Emory on http://ftrsupplemental.blogspot.com/2007/02/history-of-lyme-disease-as-bioweapon.html .


The Wikipedia Lyme article is already very long and I didn't think it necessary to add a lengthy list of examples; however, as you have implied that my evidence is not substantial enough, I am adding two more leading figures in the modern history of Lyme medicine, Edward McSweegan and Phillip Baker, both of whom have served as Lyme Programme Officers at NIH and who therefore had a massive influence on diagnostic, prevention and treatment policies.

Both have a strong biowarfare background and I have provided high-quality references regarding this.

If you require more examples, please let me know.

You also stated that:

``The claim that ``so many Lyme disease'' researchers are members of the EIS, also unreferenced, is not credible. It would be easy to find among the many hundreds of former EIS members some who now participate in Lyme disease research.''

First to recap - the CDC's Epidemic Intelligence Service was set up during the Cold War, to conduct what, at the time, was publicly and unashamedly admitted to be offensive biowarfare research.

If you examine your two statements above, Nighthawk J, you will see that they contradict each other somewhat. In the first, you are alleging there are not many Lyme researchers who are also involved with the EIS. In the second, you are stating that it would be easy to find some Lyme researchers among graduates of the EIS.

So, I'm not clear what you are trying to say. Are you saying that you think the proportion of Steere camp Lyme researchers with a background in the EIS is very small? If so, what percentage would you consider small?

If you are trying to say that the correlation is meaningless because there are many hundreds of ``former'' EIS members, then you are wrong here too.

The Steere camp advise that Lyme is ``hard to catch'' and ``easily cured'' with a short course of antibiotics. Most recently they advise us that chronic Lyme does not even exist.

They have alleged that serious neurological sequelae are extremely rare. Why then should America's most highly trained infectious disease specialists, the EIS, waste their precious time on it?


Scientists like Klempner, Benach and Barbour, who have been placed at the head of biowarfare research (funded by millions to over a billion dollars) are presumably some of the best brains in the US as regards infectious disease. Why then would such individuals have devoted, and continue to devote, hours and hours of their precious time to a ``hard-to-catch'', ``easily cured'' disease?

We would not expect experts in biowarfare to be spending a major part of their careers studying athlete's foot, for example. So why Lyme?

According to CDC itself : ``Currently, 60 to 80 people are selected annually for coveted EIS posts.'' www.cdc.gov/eis; http://www.cdc.gov/od/oc/media/pressrel/r010720.htm So, as I have said, this is a ***small, elite force***.

If Lyme was truly ``hard-to-catch'', ``easily-cured'' etc, it would be remarkable that even one member of such an elite force would want to specialise in it, much less many. Do the world's most highly skilled surgeons spend their time removing ingrown toenails?

Incidentally, your word ``former'' to describe EIS officers is misplaced. Where is the evidence that those Lyme researchers who are publicly known to have been trained by EIS have ``left'' and no longer retain any links, obligations or responsibilities to it?

Instead, common sense, and the evidence, indicates the opposite. Allen Steere, for example, downplayed the significance of his EIS membership during the 1970's, and told the media that he only joined to dodge the Vietnam draft. Yet three decades later, he was still deeply involved enough to be helping to organise an EIS gala event.

The militarily sensitive nature of the work makes it highly unlikely that scientists could simply leave this elite infectious disease unit, cut off all ties, and not retain any obligations to their senior officers within it.

You state:
``Moreover, the definition of ``biowarfare research'' used here is overly broad and casts a wide net that includes basic research of any microbe that can be a potential bioweapon...''

Why do you say that? The involvement of Klempner and Barbour is at the highest level, ie they are ***heads** of RCE's , which are biowarfare super-labs set up in the US in the aftermath of 9-11. Long before 9-11, Klempner studied ways of increasing the virulence of plague, and Barbour studied anthrax. (see refs in footnotes to my article at www.lyme-rage.info/bwsept06.html)

Benach studies tularemia. (see, for example, his published study at http://www.jimmunol.org/cgi/content/abstract/171/5/2563) Do you consider research on plague, anthrax and tularemia to be ``basic research on any microbe''? These are some of the most important and most feared bioweapons known to science.

Likewise, of the two most recent NIH Programme Officers in charge of Lyme disease, both have a background in biowarfare. Phillip Baker is a specialist in anthrax, and Edward McSweegan has worked, and still works, in the field of recruiting senior biowarfare scientists from the former Soviet - clearly top-level work.

While with the EIS, Lyme ``discoverer'' Allen Steere studied Aspergillus flavus, the fungus that produces deadly biowar agent aflatoxin, of which, according to UNSCOM, Saddam Hussein stockpiled huge quantities prior to the first Gulf War. (Christopher J. Davis,Johns Hopkins University Center for Civilian Biodefense Studies, quoted in Emerging Infectious Diseases:
ftp://ftp.cdc.gov/pub/EID/vol5no4/ascii/vol5no4.txt )

So clearly, the Lyme researchers' involvement with the EIS or ``biodefense'' was never limited to ``basic research of any microbe'' potentially useful in war, as you say, but instead included some of the most deadly agents known to mankind.

If you feel these examples are insufficient for you, I can provide more.

Nighthawk J, you removed information about Japanese WW2 experimentation with Borrelia genus microbes, saying that this was irrelevant because ``The Japanese were clearly working with relapsing fever Borrelia, not Lyme disease Borrelia, which was not discovered until decades later.''

First of all, the very fact that leading Lyme researchers like Alan Barbour have devoted hundreds of hours to studying relapsing fever, and have written articles outlining the parallels between this and Borrelia burgdorferi, shows that relapsing fever Borrelia are very much relevant.

Second, while there is proof that the Japanese worked on relapsing fever borrelia, you cannot state that they did not work with Lyme disease borrelia, because most of the details of their work was concealed from the public after the war.

It is now known that the US government protected leading biological warfare scientists from the notorious Japanese Unit 731 from prosecution for crimes against humanity. Their knowledge and expertise was recruited for American use, and as a result most of their research came under the aegis of (classified) American military science.

So, unless you happen to be an American or Japanese biowarfare scientist yourself , with access to the relevant classified material, you are not in a position to say exactly which Borrelia species were studied, or not studied, by the Japanese.

You state that Lyme borrelia were ``not discovered until decades later''. Several manifestations of Lyme disease , for example ACA, have been recognised since the late nineteenth century. Therefore, in theory, Lyme borrelia organisms could have been isolated for study long before even WW2.

Biowarfare agents such as glanders were used in the First World War and crude forms of biowarfare have been practised for thousands of years.

To say that WW2 biowarfare experimentation with relapsing fever borrelia is irrelevant to Lyme borrelia because the latter only become identified to civilian medicine in the 1980's is like saying that knowledge on retroviruses acquired prior to the 80's should be ignored by AIDS scientists, because AIDS was not identified until the 80's. It makes no sense.

Clearly in studying a new organism scientists would look at those organisms biologically closest to it.

And in fact Lyme researchers often cast their net even wider than Borrelia genus, when studying Lyme. Researchers frequently refer to the characteristics of the spirochetes in general, obviously a much wider grouping which includes the agents of syphilis, gingival infections, Weil's disease, and so on.

Finally, for some years it has been known that Lyme could be caused by many strains of borrelia other than B. burgdorferi. Recent research has shown that there are Borrelia which cause an illness identical to Lyme, which are genetically closer to Relapsing fever borrelia, than to the burgdorferi group, altogether. (Again, see www.lyme-rage.info/bwsept06.html for details and references.)

This lends weight to those who believe that Lyme should be seen above all as a ``borreliosis'', much like other borrelioses - serious, multi-system in nature, capable of infecting the nervous system, and of ``persistence in the eye and brain'', as military doctor Jay Sanford wrote in the 1970's - another point you, Nighthawk J, removed from the Lyme article.

In view of the above, your deletion of my information about Plum island and Erich Traub is misplaced too.

The fact that a study indicated the presence of one strain of Borrelia burgdorferi in the US, long before Nazi bioweaponeer Traub was involved with tick research on Plum Island, does not mean that his, or Plum Island's, involvement is therefore irrelevant. Does the existence of various natural strains of anthrax in American soil long ago indicate that anthrax is therefore unrelated to biowarfare?

Elena Cook (Wiki name ``Shine-a-lite'')

[ 13. June 2008, 03:04 PM: Message edited by: Eight Legs Bad ]

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Justice will be ours.

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lymielauren28
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I thought this was a great post with many excellent points.

I'm thankful there are other Lymies out there that have a sharper brain than I, and can delve into this type of stuff and still make sense - if that makes any sense!

Lauren

--------------------
"The only way out is through"

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sparkle7
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I'm not real familiar with how wikipedia works. If someone deletes info can it be added again? How does someone gain the authority to change the info?

I have heard this is being done with many listings on wikipedia. So, you really can't trust what you read there.

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dmc
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repeating lymielauren's sentiments. an awesome piece. thank you for being so diligent.
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cjnelson
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[woohoo]
[woohoo]
[woohoo]

--------------------
Seeking renewed health & vitality.
---------------------------------
Do not take anything I say as medical advice - I am NOT a dr!

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Cold Feet
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Wow, nice work Elena! For others, here's the wiki link:

http://en.wikipedia.org/wiki/Lyme_disease

--------------------
My biofilm film: www.whyamistillsick.com
2004 Mycoplasma Pneumonia
2006 Positive after 2 years of hell
2006-08 Marshall Protocol. Killed many bug species
2009 - Beating candida, doing better
Lahey Clinic in Mass: what a racquet!

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Dancer
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Thank you for keeping a watchful eye on this and all your time, effort and expertise!
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bettyg
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8 legs,

any chance you could break up your long solid blocks of text into short paragraphs for us neuro lymies ??

looks interesting but i have to SOB, SCROLL ON BY.. thanks for your consideration. [group hug] [kiss]

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Andromeda13
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Many thanks Elena for putting the history straight!

Best wishes,
Andromeda

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mojo
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Super Job!

Thanks for doing this.

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Allie
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Elena --

You are one smart cookie who isn't afraid to do the right thing!

Thank you sincerely for doing something most of us are unable to do!

[bow]

Let us know if you get a reply!

Allie

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Eight Legs Bad
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Hello Sparkle,

I'm pasting in below a post of mine from General Support with some info on how people can help keep Wikpedia's lyme entry accurate.

The sabotage that the Steerites do can easily be undone at the click of a button, but it takes perseverance as they seem to have a few people, like this microbiologist, who are on it all the time.

Betty, I have broken up some of the longer paragraphs - hope this is better now - apologies.

Thanks to all of you for your encouraging words.

Take care
Elena
-----------------------------------------
Hi all,

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.

The Lyme article is at http://en.wikipedia.org/wiki/Lyme_disease

Elena

quote:
Originally posted by sparkle7:
I'm not real familiar with how wikipedia works. If someone deletes info can it be added again? .....



--------------------
Justice will be ours.

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Andromeda13
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Just had a thought,

the name of the mysterious microbiologist, Nighthawk J, sounds kind of military doesn't it?

BW,
Andromeda

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bettyg
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8 legs, thanks for breaking this up for comprehension for us neuro lymies!! [kiss]
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Eight Legs Bad
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quote:
Originally posted by Allie:
...
Let us know if you get a reply!

Allie

The coward hasn't replied; instead he sneaked in to remove the word "chronicum" from erythema chronicum migrans. How the Steere camp hate anything that suggests Lyme is chronic!

Unfortunately it appears Nighthawk J has enlisted the help of someone arguably even more vicious than himself. Here is a copy of the comment by his anonymous friend "RetroS1mone" (who bears a curious resemblance in writing style to John Nowakowski), followed by my reply:

COMMENT BY RETROS1MONE:

:I deleted the biowarfare allegations. This kind of nonsense has no place on Wikipedia and violates like a whole laundry list of Wikipedia policies especially [[WP:BLP]] since some of these scientists are still alive. Please do not try to add this back in. There are many Internet forums where it would be appreciated and I encourage you to go there. [[User:RetroS1mone... 13:41, 18 June 2008 (UTC)

REPLY to NIGHTHAWK J by ELENA:

Nighthawk J, I have restored the word "chronicum" in "erythema chronicum migrans". That was the name used by the medical establishment for nearly a century, and even used initially by Steere himself, until a political decision was made to obfuscate the chronic nature of Lyme. By the 1990's virtually all Steere camp authors had dropped the word "chronicum".

Nighthawk J, the rash was given that name, and had its name maintained for nearly a century, for only one reason - because doctors observed the persistence of the rash. It's not rocket science.

REPLY TO RETROS1MONE by ELENA:

RetroS1mone, I have deleted all your edits, which range from vandalism to the insertion of dangerous medical misinformation to libel. Your wholesale disregard for the harm you are potentially causing to patients who might read this material is reminiscent of the style of Dr John Nowakowski, who was eventually convicted of libel for his anonymous internet activities.

I am sharing the details of what you have done with the Lyme community via internet forums such as Lyme Net, just as I have done with Nighthawk J's similar malicious edits.

You removed information I added, which informed people that the EM rash occurs in less than half of cases. This is highly important information. A person recently bitten by a tick, feeling ill but lacking the "classic" rash, could make a life-saving decision to seek medical treatment as a result of reading that information.

Instead you inserted a quote alleging that EM is found in 90% of infected patients. This figure has no factual basis, as it derives from old studies, some written by Steere, in which the ***very criteria for the definition*** of "infected patient" , in most cases, was the presence of an EM rash! Pure circular reasoning, in other words.

Your excuse for removing my statement was that my source (ILADS) is "not a reliable source".

ILADS is an association of doctors and allied health professionals, nearly all of whom have extensive clinical experience in treating Lyme. They have the support of tens of thousands of patients - clear proof that they are competent in their field.

What better indicator is there of physician competence in a modern society, than the continuing loyalty and admiration of tens of thousands of patients?

How then can you allege they ILADS are not a reliable source?! This is a flagrant violation of Wikipedia's "NPOV" (neutral point of view policy".

You edited a paragraph stating that the reliability of serology for diagnostic purposes remains controversial, replacing it with this:

"These tests are sufficiently reliable to support diagnoses."

Once again, a blatant violation of "NPOV". The reliability of the antibody tests is so controversial that scientists from BOTH camps have commented on the need for improved diagnostic methods.

While those in the Steere camp generally claim, publicly anyway, that existing serology can rule out Lyme, privately they hold patents in which they explicitly state that the genetic material, technique etc being patented is intended to address the problem of the ***currently unreliable tests***.

They mention problems not only with specificity but also with sensitivity. I am happy to provide examples of this if you require it.

You have removed reliably sourced evidence criticising the Klempner study without any grounds for doing so, other than your own bias.

You have removed an entire paragraph, which showed a very balanced point of view, providing information about both opposing camps, and replaced it with this biased remark:

"Disagreement has arisen in the medical community over the existence and definition of a condition known to proponents of its diagnosis as "chronic Lyme."...

"... This condition includes several different patient groups, according to investigators of the Ad Hoc International Lyme Disease Group publishing in the ''New England Journal of Medicine'"

You then quote at length from only ONE camp, ie the Steere camp, (represented by the self-appointed International Ad Hoc Lyme Group).

You have removed this factual paragraph:-

"However ILADS has accused AAN of simply repackaging the IDSA guidelines as three coauthors of the new guideline, including the lead author, were also coauthors of the IDSA Lyme guideline. There is significant disagreement with this guideline."

-and replaced it with an accusation that the ILADS policy is to diagnose Lyme disease in "patients with a well-defined illness that has nothing to do with ''Borrelia''".

This is a baseless and libellous statement against an organisation of professionals.


You have compounded the libellous allegation mentioned , with this unscientific and offensive allegation :

"ILADS advocates extended courses of antibiotics, lasting for months, years, or indefinitely, for what it calls chronic Lyme patients. ILADS also advocates for insurance companies to pay their members to administer long-term antibiotic treatments, despite a complete lack of evidence of efficacy."

Where is the evidence that any ILADS doctor has written a prescription for antibiotics "indefinitely"?

Further, why have you ignored peer-reviewed evidence, for example the recent Fallon study, documenting efficacy of repeated courses of antibiotics in ameliorating symptoms in chronic Lyme?

You have added material alleging that patients have been treated with dangerous bismuth compounds and with malaria (to induce fever, an early-20th century treatment for spirochetal diseases). How many people do you believe have been treated by these methods?

While there are charlatans in every medical arena, the number of Lyme patients who have died of malaria, or bismuth poisoning can probably be counted on the fingers of one hand, with several fingers left over.

Those who have died of complications of misdiagnosed or inadequately treated Lyme, on the other hand, are uncountable, as no epidemiology exists, but likely add up to a staggering toll.

Fatal outcomes from Lyme include third-degree heart block, stroke-like sequelae, MS and ALS-like syndromes, perinatal mortality of children born to infected mothers, road accidents due to fatigue and/or lack of concentration at the wheel, violent encounters/accidents due to neuropsychiatric illness, and Lyme-related suicides.

Further, recent studies by researchers such as MacDonald and Miklossy indicate that a proportion of Alzheimers cases may be due to Lyme. This could add hundreds of thousands more deaths to the figure.

You have removed the entire section on Lyme controversy, containing information on Blumenthal's findings that the 2006 IDSA Lyme guidelines were authored by a panel riddled with financial conflicts of interest, and containing much factual and relevant information documenting links between Steere camp scientists and biowarfare establishment.

Instead, you replaced all that important information with this:

"When the Infectious Diseases Society of America (IDSA) issued new guidelines for Lyme diagnosis in 2006, recommending actual evidence of Lyme before diagnosis and treatment, the ILADS and allied chronic Lyme advocacy organizations quickly condemned the guidelines...

"... Connecticut Attorney General Richard Blumenthal, who had received awards from chronic Lyme advocacy groups...began a probe into the IDSA panel responsible for the guidelines, putatively on anti-trust grounds....

" ...Although Blumenthal alleged conflicts of interest on the part of IDSA, he declined to name the allegedly conflicted panelists or detail what he considered their conflict to be....

"... The IDSA panel responded by stating they had been wrongly "accused of profiting financially by recommending to not treat with unnecessary and prolonged courses of antibiotics,"..."

The fact that someone of the standing of Ct. Attorney General alleged financial conflict of interest, coupled with the fact that the IDSA responded by agreeing to set up a brand new panel to review the original guidelines, is an indication that financial conflict of interest was clearly present.

Indeed some of the 2006 IDSA Lyme panel members have very openly revealed their conflicts of interest.

For example Raymond Dattwyler directs a biotech company developing recombinant Lyme antigens, which it has incorporated into a bioweapons vaccine against Plague.

Which brings us back to the biowarfare issue. This is arguably the greatest conflict of interest of all , with very many of the Steere camp's most prominent figures involved.

You have accused me of libelling "living scientists". I have provided solid references for all my assertions regarding Steere camp researchers and biowarfare science.

I challenge you to show me one example where I have accused even ONE scientist, living or dead, of being linked to biowarfare research ***without any factual basis***.

Elena Cook ("Shine-a-lite" on Wikipedia)~~~

--------------------
Justice will be ours.

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Vermont_Lymie
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Thanks -- you go girl!

You are speaking for many of us.

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oxygenbabe
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Elena, you can take your complaint to wikipedia itself. I had a weird attack on myself by a guy who was mad that I gave a friend of his a bad amazon.com review for a self published book. He tried to get my wikipedia entry banned. Various wikipedians who are in charge of disputes chimed in, and he was negated as a "sock puppet" and my entry was kept intact. I think a sock puppet is someone who just comes on to cause trouble to one person, I think.

If you have evidence his alterations are with malign intent or to obscure valid perspectives, you can take it to those who handle disputes at wikipedia. He cannot then keep defacing the page. They deal with this all the time, especially on controversial political issues.

Now, this guy is not exactly the right admin, but maybe he can get you to the right person. He seems to be a librarian with a specialty in science:

http://en.wikipedia.org/wiki/User:DGG

On the other hand, you can't reference your own article. This is an encyclopedia and they have fairly strict rules. They don't let you reference blogs either. So you have to reference reputable 3rd party sources such as scientific articles or mainstream news media.

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Eight Legs Bad
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Hi Oxygenbabe,

Thanks for your post. I will try to contact that person.

However I suspect that the whole Lyme debate will be too complicated for Wikipedia staff. I dont think they will understand that what the Steerites are doing is malicious, unless many many of us send in complaints all at once.

Another Lyme Netter private messaged me asking whether we can report the situation to a Wikipedia moderator. Here is the reply i wrote:

Wikipedia is a very anarchic kind of thing, they allow complete freedom to anyone at all to edit their encyclopedia. They seem to believe that if someone does something malicious, the "good sense" of everyone else will prevail and the damage will be undone by other editors.

Sadly it can be pretty complicated to edit articles and a lot of Lymies, weighed down by cognitive probs, are put off by this.

The Steere camp periodically send people in to do blatant vandalism, eg remove important phrases and substitute nonsense or pornography.

It's possible to report that to the Wikipedia staff, but they tend to do that completely anonymously, using different IP addresses each time and without setting up an account.

Where they pull out, for example, stuff about what Blumenthal found and substitute IDSA rubbish, they do use their personal accounts. This is still anonymous, but their static computer IPs, and possibly other identifying info may be known to Wikipedia technical staff, who can take action if their are enough complaints.

The matter is difficult though because, lacking Lyme-specific knowledge, Wikipedia staff will see this just as a dispute between two medical camps rather than he "vandalism" that it is.

It's necessary to show they have violated specific Wikipedia "policies" eg "Neutral Point of View". You can do this when you remove their garbage, by explaining why you have edited their edits. You do this in a section called "Discussion".

To get to the Discussion page, you just click on the "Discussion" tab on top of the page itself.

You then choose what section you want to add your comment to, click the link called "Edit", and add your comment.

The best way to keep the Lyme article accurate, is to visit the page frequently and click on the "History" tab at the top. This brings you to the History page, which lists all changes that have been made in chronological order.

The most recent edits are at the top. You can then click to compare two versions. If you see that someone has vandalised or added false info, you can click the link called "Undo".

Sometimes, if they have many changes or if several of them have collaborated in making changes, it's necessary to do what they call a Revert - this will revert to the last "decent" version which you indicate. Info on how to do this is in the Help section.

The best way to reverse their changes is to first register with Wikipedia so that you have an account (you dont have to give your real name).

Then go to this page which teaches you how to view the changes that have been made. Once you spot a malicious change, just click the Undo link next to its entry in the History page.

http://en.wikipedia.org/wiki/Help:Page_history#Quick_Tutorial

If even 5% of people on Lyme Net checked the History page once a week for malicious edits by the Steere camp, we could probably keep the article accurate permanently. The Steerites only have a few miserable sad cases working on this, probably Dr Nowakowski, McSweegan and one or two others.

Remember that this is a resource used by hundreds of thousands of people and misinformation could mean the difference between someone new seeking treatment and ending up disabled for life. That's why it's so important to keep it accurate.

Any help from LymeNetters is appreciated! it does look very complex when you first join, but once you learn a few simple rules from reading the tutorials, it becomes much easier.

Elena

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Eight Legs Bad
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One good thing about Wikipedia is that their software sometimes catches out people who are trying to be sneaky. After the vandal calling himself "RetroS2mone" added all the nonsense which I criticised above, he tried to make it appear he was being scientific.

But later he added this rant, in the "Discussion" section, which reveals his true colours. This time he did not log in to his account, and hoped it would appear anonymously.

But because he used the same computer which he has used when posting with his Wikipedia account, the software identified him and told the world it was the same man. This is his rant below. You may want to grab a plastic bowl, or other vomit receptacle, before reading this, however.

Also please note his crocodile tears over those who suffer chronic Lyme symptoms.

- - - -
Tirade by "retroS1mone":

"Let's be perfectly clear. IDSA is a org with 8000 members, then you have AAN. The CDC backs them.

There is the Ad Hoc International Lyme Disease Group. There is the medical literature.

ILADS is a few hundred docs and nurses who profit by giving people with unexplained symptoms months or years of very expensive antibiotics with no evidence they have an infection and no evidence the antibiotics work if they did.

And they want insurance companies to pay for them.

Talk about a conflict of interest! I have no idea if chronic lyme is real or not and I really don't care too much except for the people who suffer from symptoms.

I do know the medical community is almost unanimous on chronic lyme and the literature has gotten more clear in the past year, and that's what counts by Wikipedia.

I re wrote the major ILADS slant to reflect consensus in science and medicine. You can say there is evenly divided opinion, doesn't make it so. --Preceding unsigned comment added by RetroS1mone (talk * contribs) 13:38, 18 June 2008 (UTC) "

- - -
Anyone feel like replying to this lowlife? In my post above I give details on how you can write in to the Discussion section of the Wikipedia Lyme page. Thanks.

Elena

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Eight Legs Bad
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The same Steerite troublemaker has deleted our good info yet again, this time claiming, as his excuse, that ILADS is "not a reliable source" of info.

At the end of my post is his latest garbage - vomit bowls at the ready. I will respond to his lies and falsifications, but it would be really helpful if others could help out with this situation.

I think what we need is a little committee of people, ideally from more than one time zone, who can take it in shifts to guard that Wikipedia Lyme page and make sure Steerites cannot vandalise it in this way.

If anyone is willing to help, please p-m me or email me at elena444cook@yahoo.co.uk and I will be happy to explain the technical side of how to do it. Thanks.

Here's the latest crap from "Retros1mone":

Elena Cook/Shine a lite,

Did you change your name recently? I am new to this but I looked at the edit history of this article, there is an editor "Freyfaxi" who writes like you and says the same stuff until February and also goes by "Elena Cook" on other websites. In answer to your questions, I will say this once,

The ILADS website is a self-published source. It is kind of acceptable if your reporting what they say but not a RS for other information.

An essay by the ILADS secretary on the ILADS website and a position statement by the ILADS secretary and past president Stricker in a low impact journal does not support the statement there are two equal standards of care for chronic lyme a condition most scientists and doctors dispute.

You could say, "Two ILADS members claim there are two standards of care in the medical community" but not much more.

The fact that an Attorney General alleged conflict of interest means he alleged conflict of interest. The case was settled with no findings of antitrust violation.

Potential conflicts of interest by IDSA members are disclosed on papers they write. Compare to ILADS members who don't mention their organization wants to treat patients with no evidence of infection with months or years of antibiotics and insurance companies should pay for the unproven treatments.

A BSL-4 lab is a lab to work with dangerous pathogens. They don't have to be bioweapons. Work on a vaccine or on anthrax or other pathogens is not necessarily bioweapons research.

The CDC unit you refer to as an offensive bioweapons unit was a surveillance unit to detect emerging diseases.


Your bioweapons charges are based on two relevant sources, a book where the author raises the possibility of pathogens excaping Plum Island, and without any direct evidence as reviews say.

The second source is a radio talk show that mentions something you wrote under the pseudonym "Elena Cook." That is not a RS.

The book is also not a RS except to say, "Michael Carroll, in Lab 257, raises the possibility that Lyme could be an escaped pathogen from Plum Island."


The section on bioweapons allegations has no place on wikipedia without better sources (a better source), I said once before and I will not say again.

Wikidia is not a soapbox to indulge one's fantasies about government conspiracies unless those fantasies coincide with information in reliable sources.

RetroS1mone talk 14:45, 21 June 2008 (UTC)

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Keebler
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-

I'm just getting to this thread. It will take a while to read all this -


Elena, thanks for the links and for your efforts to facilitate easy reading.

-

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oxygenbabe
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Elena, they don't need to understand lyme to moderate the piece correctly.
If something has a legitimate reference (news, journal articles) you can reference it. Your statements should be objective reporting. If someone keeps changing that, then they are a vandal. They can be stopped.

http://simple.wikipedia.org/wiki/Wikipedia:Vandalism

Unfortunately--what you posted that he wrote is basically correct. Which doesn't mean I don't agree with you and admire many of the connections you've made. But in your most recent post, all that he said, he's actually right.

If I were trying to show both sides of the lyme controversy, I would reference the multitude of articles about chronic lyme that appear so often now. Such as the Philadelphia Weekly; Pam Weintraub's new book; etc. Also Under Our Skin. I'm pretty sure it was reviewed by a major medical journal, maybe Nature? I'm not remembering specifically now but *that* is a way to legimitately report the controversy--this new documentary, reviewed in a major medical journal. And when Pam's book gets reviewed in NEJM, another legitimate reference. You would then be reporting on a phenomenon that is emerging, and your reporting would be legitimate.

The biowarfare hypothesis is one that makes sense to me but that would have to be under, Controversial Theories, or some heading like that. Lab 257 would be an example of theories that abound, but citing it for actual evidence is dicey because though it was an interesting read, it was not well-referenced journalism. (This is just my opinion as a journalist).

That's what makes wikipedia as good an encyclopedia as the Britannica.

Even though created by the populace, there are pretty good rules in place for correct referencing.

So there is a way to outsmart your enemies and that's by using legitimate sources.

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Eight Legs Bad
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Hi Oxygenbabe

If the only references in the stuff this man is removing/defacing where what he said, you'd be right. But you've made the mistake of assuming this man has a shred of integrity - he doesn't. He's lying.

He's taken out whole sections at a time, as well as key phrases, to do with chronic Lyme, all of which were ***already*** supplied with detailed references, from the peer-reviewed medical literature.

He's tried to pretend that the only reference for the material he removed was the Ilads website -it's nonsense.

As far as ILADS themselves are concerned, they most definitely do meet Wikipedia's official criteria for a "Reliable source" - even for Ilads articles which have not yet been published in the med literature.

As far as the biowarfare info, this is actually listed under a section called "Controversy" anyway. His accusation that the only refs in there are Lab 257 and my article are again, a lie.

I've pasted in the existing refs from the section in the article that discusses biowarfare below.

They include a leading national newspaper; the NIH; official info from Boston University and Univ of California re directors of their associated biowarfare labs (Klempner and Alan Barbour respectively); the New York State Office of Science, Technology and Academic Research; and a letter from the head of a California public health department.

All of these sources easily meet the "reliable Source" criteria of Wikipedia.

I only referred to my article because within it there are additional equally hard references supporting other related statements.

You are right that Lab 257 is not well referenced in the sense that, although the author included a long list of heavyweight sources at the end, he did not index his work.

It is a very difficult job for the reader to try and match individual assertions in the book to some of the sources.

However I may just do some of that and add the specific sources in.

The man's goal is clearly to censor all material indicating the existence of chronic Lyme, as well as the Blumenthal investigation, the biowarfare aspect and many other issues.

Elena

List of References supporting the Biowarfare material in Wikipedia's Lyme article as of 22 June 2008:

Carroll, Michael ``Lab 257- The Disturbing Story of the Government's Secret Germ Laboratory'', Harper Collins 2004

^ Washington Post January 22, 2005

^ BUMC Faculty Webpage

^ UCI Medical Centre, June 1, 2005

^ NYStar News Publication of the New York State Office of Science, Technology and Academic Research, August 2004

^ "Lyme Disease is Biowarfare Issue" by Elena Cook, published/discussed by Dave Emory, WFMU Talk Show Host, 2007 http://ftrsupplemental.blogspot.com/2007/02/history-of-lyme-disease-as-bioweapon.html

^ http://www.yolocounty.org/org/BOS/agendas/2003/012803/46.pdf Letter from head of Yolo County health department, California

^ http://www.ctlymedisease.org
^ http://www3.niaid.nih.gov/news/events/balticWorkshopSeries/participants.htm#mcsweegan

^ http://www.nih.gov/news/pr/apr2006/niaid-23.htm

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Eight Legs Bad
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Hi Tincup,

First of all, congratulations on your imminent grandma-hood!

Second, thanks for your post- as always, it is full of wit and humour, something we Lymies really appreciate!

As for the Steerite ghosts haunting the Wikipedia Lyme article, unfortunately , there are at least two of them. [Mad]

I agree with you that the obsessive microbiologist might be McSweegan. The other character, whose style is even more abusive and vicious (if you can imagine that!) uses the name "RetroS1mone".

You said you only know of one obsessive nut in the Steere camp who is capable of spending his entire day hurting Lyme patients. Well, unfortunately I can think of at least one more.

Dr John Nowakowski, of NY Medical College, (and an author of the infamous IDSA 2006 guidelines) has this reputation.

He was successfully sued in court some years ago after libelling the director of Igenex lab online, whilst hiding behind the internet pseudonym of "jopn".

If you google that name, or his email address "jopn@aol.com", you will see that many of his abusive, harmful and even obscene posts remain in Lyme discussion group archives.

In particular he gave medical advice to a father of a child he had never examined, and, where, on his own admission, had not even bothered to read the background of the child's symptoms. His advice was to not give antibiotics.

Under most medical board regulations,I would guess he should be eligible for having his license removed for that one act alone. Perhaps one of these days some American citizens may report him?

Elena

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Eight Legs Bad
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quote:
Originally posted by Tincup:
Hey there 8... you're up real late!...

No, I am in London and it is 10:40 in the morning here.

It is sleep-time in Valhalla, NY (home of NY Medical College) but if McSweegan is in Siberia he may be tucking into a posh luncheon right now with some of his friends from the Vector biowarfare facility, where he goes periodically to recruit former Soviet bioweaponeers.

Let's hope their biocontainment is better than that of Plum Island or Klempner's Boston lab, which let tularemia escape some yars ago. Otherwise our microbiologist friend may be sipping some weird and deadly serovar from his samovar as we speak.

What a shame that would be. [Big Grin]

I'll try not to step in anything, as you said, when dealing with the swine-pit. Anyone want to pull on a pair of wellington boots and join me?

Elena

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Eight Legs Bad
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Here is my latest rebuttal to one of the two Steerite saboteurs. Looks like he is convinced I am Freyfaxi, who is a member of Lyme Net, just because she sometimes quotes my writings.
[Roll Eyes]

They really are too stupid for words, aren't they?

Elena
ps Sorry about all the repetition in this, but he keeps removing our material and repeating the same lies, so what can you do?
- - - - -

Retros1mone,

I am replying to your post by interspersing my responses in capital letters.
#### Elena Cook (username "Shine a lite" on Wikipedia)

::Elena Cook/Shine a lite,
::Did you change your name recently? I am new to this but I looked at the edit history of this article, there is an editor "Freyfaxi" who writes like you and says the same stuff until February and also goes by "Elena Cook" on other websites.

I AM NOT FREYFAXI AND WHILE I KNOW SHE HAS POSTED MY MATERIAL ON NUMEROUS WEBSITES, I AM NOT AWARE THAT SHE HAS IMPERSONATED ME. I WOULD BE VERY SURPRISED IF SHE HAS.

In answer to your questions, I will say this once,
*The ILADS website is a self-published source.
It is kind of acceptable if your reporting what they say but not a RS for other information. An essay by the ILADS secretary on the ILADS website and a position statement by the ILADS secretary and past president Stricker in a low impact journal does not support the statement there are two equal standards of care for chronic lyme a condition most scientists and doctors dispute. You could say, "Two ILADS members claim there are two standards of care in the medical community" but not much more.

ONCE AGAIN, YOU ARE OBSCURING THE TRUTH. AS CAN BE SEEN FROM MY VERY LONG POST ABOVE, I ACCUSED YOU OF MALICIOUSLY REMOVING WHOLE SECTIONS FROM THE LYME ARTICLE, AS WELL AS MANY KEY SENTENCES. THE VERY MANY FACTS YOU REMOVED WERE NOT SOURCED BY JUST ONE REFERENCE, BUT MANY, INCLUDING NUMEROUS ARTICLES IN THE PEER-REVIEWED MEDICAL LITERATURE.

AS FAR AS QUOTING THE ILADS WEBSITE, THAT MAY HAVE BEEN DONE TO SUPPORT ONE OR TWO STATMENTS. DOZENS OF OTHER RELIABLE SOURCES SUPPORTED THE REST, AS CAN BE SEEN FROM THE REFERENCE LIST NOW I HAVE REVERTED YOUR EDITS.

HOWEVER, THE ILADS WEBSITE ITSELF MEETS THE CRITERIA OF WIKIPEDIA'S RELIABLE SOURCES POLICY, FROM WHICH I QUOTE BELOW:

"ACADEMIC AND PEER-REVIEWED PUBLICATIONS ARE HIGHLY VALUED AND USUALLY THE MOST RELIABLE SOURCES IN AREAS WHERE THEY ARE AVAILABLE, SUCH AS HISTORY, MEDICINE AND SCIENCE, ALTHOUGH SOME MATERIAL MAY BE OUTDATED BY MORE RECENT RESEARCH, OR CONTROVERSIAL IN THE SENSE THAT THERE ARE ALTERNATIVE THEORIES. MATERIAL FROM RELIABLE NON-ACADEMIC SOURCES MAY ALSO BE USED IN THESE AREAS, PARTICULARLY IF THEY ARE RESPECTED MAINSTREAM PUBLICATIONS. WIKIPEDIA ARTICLES SHOULD STRIVE TO COVER ALL MAJOR AND SIGNIFICANT-MINORITY SCHOLARLY INTERPRETATIONS ON TOPICS FOR WHICH SCHOLARLY SOURCES EXIST, AND ALL MAJOR AND SIGNIFICANT-MINORITY VIEWS THAT HAVE BEEN PUBLISHED IN OTHER RELIABLE SOURCES..."


*The fact that an Attorney General alleged conflict of interest means he alleged conflict of interest. The case was settled with no findings of antitrust violation.

THE ATTRONEY GENERAL HIMSELF FOUND SERIOUS DEFICIENCIES. I HAVE ALREADY QUOTED THE OFFICIAL STATEMENT FROM HIS OFFICE REGARDING THIS.

Potential conflicts of interest by IDSA members are disclosed on papers they write.

I WOULD NOT BE SO QUICK TO STATE THAT THE IDSA 2006 LYME PANEL MEMBERS DISCLOSED ***ALL*** THEIR CONFLICTS OF INTEREST AT THE TIME, IF I WERE YOU. HAVE YOU EVIDENCE OF THAT?

Compare to ILADS members who don't mention their organization wants to treat patients with no evidence of infection with months or years of antibiotics and insurance companies should pay for the unproven treatments.

THIS IS A LIBELLOUS STATEMENT.

*A BSL-4 lab is a lab to work with dangerous pathogens. They don't have to be bioweapons. Work on a vaccine or on anthrax or other pathogens is not necessarily bioweapons research.

ARE YOU EXPECTING US TO ACCEPT THAT RESEARCHERS IN THE HIGHEST SECURITY LABS IN THE WORLD, IN THE AFTERMATH OF 2001, ARE STUDYING ANTHRAX BECAUSE THEY ARE CONCERNED FOR THE SAFETY OF THE FOUR OR FIVE FARMERS IN THE US WHO STILL SORT WOOL BY HAND, AND ARE CONSEQUENTLY AT RISK OF NINETEENTH-CENTURY-STYLE CUTANEOUS ANTHRAX?

The CDC unit you refer to as an offensive bioweapons unit was a surveillance unit to detect emerging diseases.

I HAVE ALREADY EXPLAINED THAT THE PHRASE "EMERGING DISEASES" IS A CATCH-ALL TERM, USED TO ENCOMPASS BOTH BIOWEAPONS AND UNEXPLAINED EPIDEMICS OF INFECTIOUS DISEASE ARISING FROM CAUSES OTHER THAN BIOWARFARE ATTACKS OR ESCAPES. OFTEN, IN THE INITIAL STAGES, IT IS IMPOSSIBLE TO KNOW WHICH ONE IS CONCERNED.

IN FACT, THE EXAMPLES IN THE ARTICLE AND IN THE REFERENCES LEFT REFER TO ***SEVERAL*** DIFFERENT BSL-4 LABS STUDYING LYME, NOT JUST ONE.

*Your bioweapons charges are based on two relevant sources,

SIMPLY NOT TRUE. I'VE PASTED IN THE EXISTING REFS FROM THE SECTION IN THE ARTICLE THAT DISCUSSES BIOWARFARE BELOW. THERE ARE FAR MORE THAN TWO.

THEY INCLUDE A LEADING NATIONAL NEWSPAPER; THE NIH; OFFICIAL INFO FROM BOSTON UNIVERSITY AND UNIV OF CALIFORNIA RE THEIR ASSOCIATED BIOWARFARE LABS (DIRECTED BY LEADING STEERITE RESEARCHERS MARK KLEMPNER AND ALAN BARBOUR RESPECTIVELY); THE NEW YORK STATE OFFICE OF SCIENCE, TECHNOLOGY AND ACADEMIC RESEARCH; AND A LETTER FROM THE HEAD OF A CALIFORNIA PUBLIC HEALTH DEPARTMENT.

ALL OF THESE SOURCES EASILY MEET THE "RELIABLE SOURCE" CRITERIA OF WIKIPEDIA.

a book where the author raises the ''possibility'' of pathogens excaping Plum Island, and without any direct evidence as reviews say.

THIS BOOK HAS BEEN ENDORSED BY TWO FORMER GOVERNORS, MARIO CUOMO AND LOWELL P. WEICKER.

IT BEARS 29 PAGES OF SOURCE REFERENCES, VIRTUALLY ALL OF WHICH WOULD BE CONSIDERED RELIABLE SOURCES BY WIKIPEDIA'S CRITERIA.

MANY OF THE SOURCES ARE DECLASSIFIED US GOVT DOCUMENTS. THOUGH THE US GOVERNMENT MAINTAINED FOR DECADES THAT THE LAB WAS A CIVILIAN FACILITY, THE AUTHOR HIMSELF , AS HE EXPLAINS IN HIS NOTE "TO THE READER", WAS BARRED FURTHER VISITS ON THE GROUNDS OF "NATIONAL SECURITY".

The second source is a radio talk show that mentions something you wrote under the pseudonym "Elena Cook." That is not a RS.

MY ARTICLE IS ONLY ONE REFERENCE AMONG MANY IN THE SECTION DISCUSSING BIOWARFARE, AND I ONLY MENTIONED IT HERE IN ORDER TO DIRECT READERS TO ITS REFERENCE LIST, WHICH CONTAINS DOZENS MORE SOURCES, SUPPORTING FURTHER STATEMENTS LINKING BIOWARFARE SCIENCE WITH THE PROBLEMS SURROUNDING LYME MEDICINE.

NEARLY ALL THE SOURCES QUOTED IN MY ARTICLE THAT I AM REFERRING TO MEET THE CRITERIA OF WIKIPEDIA'S RS POLICY TOO. I INVITE YOU TO HAVE A LOOK IF YOU DOUBT THAT.

The book is also not a RS except to say, "Michael Carroll, in Lab 257, raises the possibility that Lyme could be an escaped pathogen from Plum Island."

::The section on bioweapons allegations has no place on wikipedia without better sources (a better source), I said once before and I will not say again. Wikidia is not a soapbox to indulge one's fantasies about government conspiracies ''unless those fantasies coincide with information in reliable sources''.

YOU ARE BREAKING WIKIPEDIA'S POLICY ON BEHAVIOUR BY ADDRESSING ME IN SUCH AN ABUSIVE WAY. THE WELL-SOURCED ARGUMENTS I AND OTHERS HAVE INSERTED ON THIS ISSUE ARE IN NO WAY "FANTASY".

THAT YOU HAVE TO RESORT TO SUCH TALK, AND TO CLOUDING THE ISSUES AGAIN AND AGAIN AS ALREADY DESCRIBED, INDICATES HOW BANKRUPT YOUR OWN ARGUMENTS ARE.

LIST OF REFERENCES SUPPORTING THE BIOWARFARE MATERIAL IN WIKIPEDIA'S LYME ARTICLE AS OF 22 JUNE 2008:

CARROLL, MICHAEL ``LAB 257- THE DISTURBING STORY OF THE GOVERNMENT'S SECRET GERM LABORATORY'', HARPER COLLINS 2004
^ WASHINGTON POST JANUARY 22, 2005
^ BUMC FACULTY WEBPAGE
^ UCI MEDICAL CENTRE, JUNE 1, 2005
^ NYSTAR NEWS PUBLICATION OF THE NEW YORK STATE OFFICE OF SCIENCE, TECHNOLOGY AND ACADEMIC RESEARCH, AUGUST 2004
^ "LYME DISEASE IS BIOWARFARE ISSUE" BY ELENA COOK, PUBLISHED/DISCUSSED BY DAVE EMORY, WFMU TALK SHOW HOST, 2007 HTTP://FTRSUPPLEMENTAL.BLOGSPOT.COM/2007/02/HISTORY-OF-LYME-DISEASE-AS-BIOWEAPON.HTML
^ HTTP://WWW.YOLOCOUNTY.ORG/ORG/BOS/AGENDAS/2003/012803/46.PDF LETTER FROM HEAD OF YOLO COUNTY HEALTH DEPARTMENT, CALIFORNIA
^ HTTP://WWW.CTLYMEDISEASE.ORG
^ HTTP://WWW3.NIAID.NIH.GOV/NEWS/EVENTS/BALTICWORKSHOPSERIES/PARTICIPANTS.HTM#MCSWEEGAN
^ HTTP://WWW.NIH.GOV/NEWS/PR/APR2006/NIAID-23.HTM


####

[[User:RetroS1mone|RetroS1mone]] [[User talk:RetroS1mone|talk]] 14:45, 21 June 2008 (UTC)

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slappy2779
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this is very good, he must have recently been changing it cause I happened to check widipedia on a whym a couple weeks ago and everything looked in order.

I think the best way to fight this is fire with fire. Anything he can change, we can change back simple as that. I for one will now be vigilent in looking at Wikipedia.

Oh and maybe we should move this to activism page also.

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C.D.C = "Country Doesn't Care"
Ticks are like Snipers, you don't know they're there, until you see the bullseye.

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oxygenbabe
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Hi Elena. I don't believe you are engaging in the battle in this one case in a fruitful way. You have done so much work. Please consider my suggestions. At a time when the entire MMI group (including the psychiatrist who started it, various pathologists, LLMD's, journalists and some patients) were saying that the media would never cover the infectious aspect of the psychiatric problems in lyme, I covered it in a major magazine with no problem. They didn't know who I was on the list so when I suggested it was possible to deal with the media in a more fruitful way (at the time, I believe NY Times was going to write about Igenex, and everybody was bombarding the reporter in advance of the reporting, not a good idea), I was seen as a "black op" and treated with great suspicion and ire on that list, it was pretty funny, since I was not only on their side, but about to write and publish a piece that supported their entire thesis. I've done this with other controversial issues, too.

There is a way to do it.

Engaging with your enemy in long dialogues is not the way. They just love that and they will keep up their deletion war.

First, fix your article. Never cite yourself. To show the ever-more emerging conflict on lyme and its chronicity, maybe get the help of Robbyn at Robbyn's Lyme List, or LymeAid since she posts articles int he media constantly. Somebody may be able to count up the # of mainstream articles published in the last year, as opposed to the last 5 years, and then the last 10 years, indicating a sea change in reporting. Cite major sources such as Under Our Skin, legitimizing it with a reference to the Nature review. Cite Pam's book, and keep an eagle eye out for the NEJM review (which given NEJM's worship of Wormser, is likely to either damn her with faint praise, or damn her entirely, lol, but that doesn't matter. In the mere fact that reputable journals review these works, is legitimization of the controversy. He can attack you, probably speciously, on Blumenthal, but he's hopelessly out-maneuvered if you do the above. He cannot delete references citing Nature or NEJM. They have legitimized the controversy by reviewing it. Cite cover stories, cite media attention, cite celebrities if you want (Darryl Hall) who are still suffering 3 years later after collapsing onstage. Check and see whatever happened to Wyatt Sexton, who lost his career. It is a completely legitimate way to report the controversy and believe me, your reader will end up being on your side. You need to do nothing more.

Also, sorry but I didn't read the entire Wiki page, but did you put in the recent mouse research where they inoculated them with spirochetes, gave them antibiotics either immediately or a few months later, and then did tissue biopsies? There were live "nondividing" spirochetes in the tissue. Well that just means they weren't dividing at the time. The research is fascinating and indicates, as per other older research, that spirochetes persist. And this would suggest it is possible infeciton persists (again, you can't say for sure--we all get chicken pox as kids, and we don't all get periodic pox outbreaks as adults, though sometimes we get shingles etc....so again, even here, one has to respectfully cite all possible interpretations of the data.) Nonetheless, there are live spirochetes after a month of antibiotic therapy even initiated immediately.

I would put the whole biowarfare thesis into an interesting section on controversy. Don't show any partisanship toward that thesis. Unfortunately, it's not evidence to cite these lyme experts as running biowarfare labs. Yes I agree its highly suspicious but that doesn't cut it for Wikipedia--that would be for an essay or personal article wherein you raised troubling questions. Wikipedia is an encyclopedia. A possible legitimate way to "report" the biowarfare hypothesis, which I know is what you are highly interested in, is to note that with the emergence of modern plagues like Gulf War Illness, AIDS, and Lyme, some people are worrying that government work on bioweapons may have backfired on us. Who can you cite there? Ken Alibek is a good one I suppose. Now I believe lyme has been classed as a potential bioweapon, hasn't it? Recently I think. I think the best way to get away with suggesting biowarfare is to enclose it in a bigger section on modern plagues and people wondering whether there is a link. Even so, that's where you'll get attacked the most.

Once you've retooled the article and it's really solid by Wikipedia standards, then go to the vandal monitors and get rid of this guy.

If you keep going at it this way my opinion is it'll be an endless boxing round.

I'm wishing you the best. And I'm grateful for all you've done and all the effort you put into it. I'm just talking from professional experience.

I suffer from chronic lyme, caught within 2 weeks of the bite, and believe me, I know it's no picnic. Oh and another thing, I'm not sure if its legitimate reporting but it is very interesting that syphilis was battled over for 50 years and parasyphilis was touted as the cause of late stage madness ('madness after the bug had come and gone'). It took a long time for them to admit it was ongoing infection. Maybe they did when penicillin was discovered, I don't know. If I remember correctly Alan MacDonald had some ideas about that? In any case, one reason it's easy to fight about lyme is it's so murky, so protean, and there are coinfections involved. Could cite Eva Sapi on that.

[ 22. June 2008, 02:53 PM: Message edited by: oxygenbabe ]

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Eight Legs Bad
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Hi
Excuse this hurried reply as I'm in a dead rush to go to work.
Wrote to the Wiki contact you suggested Oxygenbabe, but it looks like this has badly backfired. He seems to believe the purpose of Wikipedia is to express the US government's line on health, despite the medical evidence.
Here's what he wrote - looks like he's now going to help the Steere camp against us! [cussing]
Elena

[edit] I was asked to have a look
by User:Shine a lite. I'm more than a little disturbed by some of the editing that I have been seeing here.

I recognize there's a controversy here, and that both sides must be presented fairly. The general practice at Wikipedia is to consider that the official position of qualified government agencies as likely to represent the consensus, absent a clear agreement in the pertinent profession that they are likely to be wrong.

We also do not go into extensive clinical detail in presenting the primary results of research studies, but give the conclusions as they are discussed by authoritative review sources. Not all peer-reviewed sources are equal, and the leading medical review journals and general journals of established importance have much greater weight as a reliable source than journals connected with a particular organisation that represents only a portion of specialists.

We also strongly discount conspiracy theories as likely to be fringe, and treat them rather briefly, giving a reference or two for those who may want to inquire further, unless of course these theories seem to be substantially discussed by 3rd party independent reliable published sources, print or online (but not blogs or press releases), where "independent" means independent of those who have promulgated them.

But in all this, we do not attempt to hide that there is a controversy, and we do not attempt to decide which side is right. We present the available material in terms that educated general readers can understand, and expect that they will draw conclusions for themselves.

At this point I am confining myself to general principles, and have no immediate intention to do any editing myself, at least not just right now. There seem to be various accusations of COI, & personally, what I find helps such situations is a frank statement of what they are by the people involved, not by their opponents--though of course this is not required -- & any attempt to insert the names of pseudonymous editors is very strongly against policy.

For the record, I'm acting as an editor, not an admin. I am doing one admin action right now, though--there seems to have been a burst of ip vandalism, and I'm semi-protecting against its continuation. I don't think it will inhibit discussion. DGG (talk) 19:58, 22 June 2008 (UTC)

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METALLlC BLUE
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I kept a copy of Wikipedia over the months. I do this with all resources that are ever changing. This way I have back-up copies of everything if something goes wrong or is changed in appropriately.

Guess being an information pack-rat has it's value. 500 gigs of data can't be wrong. teehee

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: sbauzys@comcast.net

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Tincup
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"He seems to believe the purpose of Wikipedia is to express the US government's line on health, despite the medical evidence. "

This is why you use their stuff to make YOUR points.

There are plenty of studies funded by the government saying what you need.

[Big Grin]

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www.MarylandLyme.org
www.LymeDoc.org

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oxygenbabe
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I'm sorry you feel it backfired, Elena. I know how I would do it, so that's the best I can offer.

RE: Under our Skin. If it's reviewed in Nature, Nature is one of the respected journals he's talking about.

Perhaps Wikipedia is not the ideal place to fight this battle anyway?

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Andromeda13
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Hi folks,

I'm posting this on activism as well as in the medical thread.

What Elena is doing is marvellous. It's also very necessary. Wiki might be the first place that people turn to for info on Lyme. It really is so important to keep up with what's happening there.

I keep wishing I could volunteer to help her, but I am seriously compromised by the neurolyme and just cannot concentrate for long enough to help with the editing.
It will take me an hour to write this message, so I am not confident enough to do something as crucial as editing Wiki.

Elena is really struggling at the moment as she is up against 3 of the Steerites; an extra person has suddenly joined in after her appeal to the wiki official.
Perhaps, (and this is just my imagination working overtime perhaps,) someone saw the post by oxygenbabe on here about this official, and gave him a pre-emptive call, getting their point of view across before any of us contacted him. Perhaps the official was over-awed by the power and position of someone like nighthawk j. Who knows, but whatever has happened, it must be of supreme importance for the Steerites to keep changing wiki, so it's of even more importance to us.

Every time Elena removes the bad biased stuff, it gets replaced with the Steerite dogma, such as the EM rash being there 90% of the time. All of the Blumenthal info gets removed, as does the links to bio warfare, despite their legitimate position under the Controversy chapter.

The trouble is, although she has already today re-instated her good edits, within a couple of hours it has been undone. No one is allowed to re-instate or edit more than 3 times in one day, or else they get thrown off Wiki forever. Elena has used up 2 of those 3 daily edits already today.

So can someone with the brainpower to do this please help?

It would be easy in a way, except I can't concentrate when reading all of the stuff to get to the right button etc.

If just a few people volunteered to cover certain times of the day, and learned how to go into Wiki and press the ``revert to previous button'', then it would be an ongoing thing and we could keep a good version going all of the time.

We can't let them get away with this censorship any more. Wiki is supposed to be the People's Encyclopaedia - don't let the furtive and secret Steerites ruin one of the best outlets we have for putting the truth out there.

Best wishes,
Andromeda

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oxygenbabe
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I wish I had time to help. I just don't right know (some knee problems going on). I would leave the bioweapons aside and not fight that battle even though its a meaningful one it must be fought on other levels and in other ways. I hate to say it but even to make meaningful associations btw EIS experience and lyme you'd also have to look at EIS experience and other chronic infections and see if there is the same distribution. And even then you have merely a correlation and no proof of anything. The bioweapons thesis is unfortunately hard to prove without more data even though I favor it as a strong possibility.

However, the current statements about long-term antibiotic treatment being ineffective and disproven are biased. Maybe I will have time in the next few weeks to rewrite in a way that can't be screwed up. If anyone feels like PM'ing me with specific references I need abstracts of:

1) Fallon's study (isn't that the one where longterm antibiotics were helpful?)
2) That older study in dogs indicating persistent infection
3) Recent study in mice indicating persistent infection with "nondividing" spirochetes
4) Any relevant studies in syphilis, as to when it was realized late stage madness could be caused by ongoing infection and was not "parasyphilis" ie postlyme syndrome.
5) Any relevant research/statements by Lynn Margulis about spirochetes' persistence
6) Any studies about other spirochete infections of any kind requiring longterm antibiotics, I don't care where (leptospirosis, whatever).
7) There is new research but I'm unaware if published yet specifically about borrelia pumping out most every antibiotic. If it is published that abstract, too (I hear about stuff through an educated grapevine and don't follow exact publication dates as sometimees I hear about completed studies scheduled for publication in major journals ahead of actual pub or epub date)

I'm sorry but I don't have time to find the abstracts, but Elena or others may have them at their fingertips. Then if I have time I'll write it in a way that can't be screwed with. This may require a subsection the biology of spirochetes, a little biology tutorial [Smile] .

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Andromeda13
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Hi Oxygenbabe,

Wish I could help more, can only do a little each day.
However, if the definitive truth emerges from our efforts, even if a bit slowly, it will be a perfect wiki piece and much harder for it to be taken away by the phantom nighthawkj

Here is the paper by Straubinger on the persisitence in dogs:


Journal of Clinical Microbiology, June 2000, p. 2191-2199, Vol. 38, No. 6
0095-1137/00/$04.00+0
Copyright 2000, American Society for Microbiology. All rights reserved.

PCR-Based Quantification of Borrelia burgdorferi Organisms in Canine Tissues over a 500-Day Postinfection Period
Reinhard K. Straubinger*
James A. Baker Institute for Animal Health, College of Veterinary Medicine, Cornell University, Ithaca, New York 14853


Received 19 October 1999/Returned for modification 27 February 2000/Accepted 25 March 2000

Borrelia burgdorferi infection in beagle dogs was studied quantitatively with skin punch biopsy samples and blood samples collected at 4- and 2-week intervals, respectively, over a 500-day period. Thereafter, 25 tissue samples of each dog were collected for further analysis.

Starting at day 120 after tick challenge, 12 dogs were treated with antibiotics (azithromycin, ceftriaxone, or doxycycline) for 30 consecutive days. Four dogs received no antibiotic therapy.

Quantification of B. burgdorferi DNA was done with an ABI Prism 7700 Sequence Detection System with oligonucleotide primers and a fluorescence-labeled probe designed to specifically amplify a fragment of the ospA gene of B. burgdorferi strain N40.

All 16 dogs became infected with B. burgdorferi after tick challenge. In skin biopsy samples, spirochete numbers peaked at day 60 postinfection (<1.5 106 organisms per 100 g of extracted DNA), at the same time when clinical signs of arthritis developed in 11 of 16 dogs, and decreased to almost undetectable levels during the following 6 months.

The number of B. burgdorferi organisms detected in skin biopsy samples was inversely correlated with the antibody levels measured by enzyme-linked immunosorbent assay.

Antibiotic treatment reduced the amount of detectable spirochete DNA in skin tissue by a factor of 1,000 or more. At the end of the experiment, B. burgdorferi DNA was detectable at low levels (102 to 104 organisms per 100 g of extracted DNA) in multiple tissue samples regardless of treatment.

However, more tissue samples of untreated dogs than of antibiotic-treated dogs were positive, and tissue samples of untreated dogs also were positive by culture. Only 1.6% of 576 blood samples of all dogs were positive for B. burgdorferi by PCR.


Here's the one really recent one in mice, by barthold's tream. No denying the persistence, and the infection could be passed on to other mice, via ticks biting them.

Antimicrob. Agents Chemother. doi:10.1128/AAC.01050-07
Copyright (c) 2008, American Society for Microbiology and/or the Listed
Authors/Institutions. All Rights Reserved.

Persistence of Borrelia burgdorferi Following Antibiotic Treatment in Mice

Emir Hodzic, Sunlian Feng, Kevin Holden, Kimberly J. Freet, and Stephen
W. Barthold*

Center for Comparative Medicine, Schools of Medicine and Veterinary
Medicine, University of California at Davis, One Shields Avenue, Davis,
CA 95616

* To whom correspondence should be addressed. Email: swbarthold@....


Abstract

The effectiveness of antibiotic treatment was examined in a mouse model
of Lyme borreliosis.

Mice were treated with ceftriaxone or saline for
one month, commencing during the early (3 weeks) or chronic (4 months)
stages of infection with Borrelia burgdorferi. Tissues from mice were
tested for infection by culture, polymerase chain reaction (PCR),
xenodiagnosis, and transplantation of allografts at 1 and 3 months after
completion of treatment.

In addition, tissues were examined for
spirochetes by immunohistochemistry.

In contrast to saline-treated mice,
mice treated with antibiotic were consistently culture-negative, but
tissues from some of the mice remained PCR-positive, and spirochetes
could be visualized in collagen-rich tissues.

Furthermore, when some of
the antibiotic treated mice were fed upon by Ixodes scapularis ticks
(xenodiagnosis), spirochetes were acquired by the ticks, based upon PCR,
and ticks from those cohorts transmitted spirochetes to nave SCID mice,
which became PCR-positive, but culture-negative.


**Results indicated that following antibiotic treatment, mice remained
infected with non-dividing but infectious spirochetes, particularly when
antibiotic treatment was commenced during the chronic stage of infection.**


Best wishes,
A.

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Andromeda13
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Here's a very old paper in which they begin by saying we hadn't better tell the patients that we couldn't get rid of the treponemes, ie the spirochetes of syphilis.

Deceitful attitude, just like now.

http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=1788090&blobtype=pdf


The whole paper is very interesting, and this is the para at the beginning :

Syphilis in England and Wales

Syphilis is a very well-controlled disease here, 57 58, unlike gonorrhoea and non-gonococcal genital infection; thus the number of reported cases of infectious syphilis was only
1,628 in 1970, compared with the 4,986 cases in 1939.

Nevertheless, in the 25 years starting in 1946 over 178,000 cases of acquired and congenital syphilis were reported. If the number
of persons treated during the war is added it is clear that there are many people in this country who know that they have received treatment for syphilis.

If unnecessary doubts are raised now about the clinical effectiveness of treatment this will cause ill-founded anxiety, fear, and the reopening of long-closed problems for many people.

Lots of dirt to dig in when spirochetes are studied.

A

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Eight Legs Bad
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Oxygenbabe and Andromeda, thank you both for your efforts, but I don't think the problem here is a lack of evidence based material.

There is (or was, it's hard to know, as the Steerites remove this stuff several times a day), a ton of information supporting our point of view in there already, complete with references from the peer-reviewed literature. Some of the references in your list, Oxygenbabe, I believe were already there.

The backbone of the original article was written by a highly-respected LLMD currently engaged in cutting-edge research.

The problem is, the Steerites continually take the factual material out, replace it with their usual dangerous misinformation, and there are not enough of us stepping in to put the facts back in.

Tincup, you have a good point, ie that it's possible to prove many points on our side quoting old papers published by the Steerites themselves (ie before they decided to change their line on various things).

The problem is, IMO, neither Tincup's tactic nor the adding of additional well-sourced citations will succeed on their own. This is because at the moment they have drafted in others who are continuing to remove non-Steerite stuff and dominating the discussion with the views such as that Wikipedia exists to promote the views of "government agencies", and that "major" peer-reviewed journals are more important than minor ones.

I don't see anything in the Wikipedia policies stating that this is the case, but without anyone there to contradict them, those pushing that viewpoint (who unhappily now include your contact DGG, Oxygenbabe) will be able to enforce their views on the rest of us.

I think it is worthwhile people taking a little time to register as members of Wikipedia and learn how to reverse their edits.

I said earlier the encyclopedia gets hundreds of thousands of views. I was wrong. It gets ***million of views***. That is why it is a worthwhile goal to maintain an accurate Lyme article there.

Elena Cook

--------------------
Justice will be ours.

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oxygenbabe
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With all due consideration of everything you're saying, Elena, you have to work with general encyclopedia guidelines. So for instance, of course a major peer reviewed journal is given more weight. Oh well, I wish you luck, but I don't think editing wars is the right approach.
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WakeUp
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Hi Elena:
Thanks so much for taking up the torch so nobly on the Wikipedia page.... I edited the Wikipedia Lyme page for a long time last year.. (I created the original McSweegan page and the Erich Traub page...) but the dozens of paid shills over there just WORE me down.... and GROUND me into the dirt... and I needed a light in the darkness...

..... So I had to stop editing there for a while when my health relapsed... they are well schooled in demoralization "Delphi" psy op techniques... and if I had not been sick it would be easier for me to handle these evil men... but I have little energy for the lack of human dignity apparent over there..... What is needed is a warrior's spirit, heart and mental strength.

You are soooo right, though--- Wikipedia is an important and it has the potential to influence the national lyme debate.... That is why they watch it like hawks and insult and harass anyone who posts well researched, footnoted truth!!

They deleted our well sourced biowarfare budget information repeatedly... the relationship between Lyme researchers and biowarfare budgets seemed to threaten them A LOT!!!

Editing over there is like trying to nail down a thousand bits of wriggly jello while being constantly attacked and demoralized... These people are the epitome of evil prostitutes...
I have never faced such un-american evil in all my life... Our beautiful nation is being destroyed from the inside-- its frighteningly supernatural.

The rule of the jungle prevails over at Wikipedia ---- whoever has the bodies gets the edit.. with no regard for editorial balance or truth ---- they do a gang bang on solo editors at Wikipedia-- so you are right to say that there is strength in numbers.

It was almost like they had an alarm clock timed to my posts--- they'd come on (the Wiki shills) IMMEDIATELY and undo my solid references and material...(many of which were supplied in your wonderful paper and from critically accalimed books and scientific studies) it was spooky....

I have an MA from a prestigious university and I have experience as a journalist and a professor, but Wikipedia would rather trust a shill like Chip Berlet-- with no college degree!! So much for their standards.

They tried desperately to delete my well researched and cited "Erich Traub" page... and I accused them of defending Nazis-- so the page was eventually NOT deleted-- but I had to fight for it like a dog and it was exhausting.... They are terrified of anything to do with the CIA's Project Paperclip....the beast that infected our nation with Nazi scientific "values" ala Dr. Mengele.

My McSweegan page was well cited and factual... but they deleted it simply because McSweegan went on an insane thorazine induced rampage ---and I believe he threatened the Wiki lawyers with a national security violation, since he most probably works for the bioweapons intelligence community -- as we all know ----due to his numerous trips to visit Russian bioweapons facilities.

Its no secret that the US government-- the Defense Intelligence Agency and other intelligence agencies have BILLIONS of dollars available for PAID internet shills they call "infowarriors"... these paid shills hang out on every newsnet group, blogs and on Wikipedia and they edit and spin the Lyme debate constantly to suppress the truth.

Sadly, we no longer have a real free press in the US.... the intelligence agencies are attempting to control the spin online for issues they deem strategic..... They have whole classes on the subject of propaganda and infowars-- so we are all sitting ducks to their machinations, humiliations and misinformation.

Anyway, thanks again for holding down the fort at Wiki.. if you need me to jump back in...

....I'd be happy to as long as you are there as a Shining Light in the darkness ---so that i don't faint with weariness.

I can't face those monsters alone---


[dizzy] [confused]

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oxygenbabe
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"The rule of the jungle prevails over at Wikipedia ---- whoever has the bodies gets the edit.. with no regard for editorial balance or truth ---- they do a gang bang on solo editors at Wikipedia-- "

This is not true. My experience was that when this crazy guy tried to get my page deleted and started citing wikipedia policy and bla bla bla, that without my asking, wiki editors came, looked, thought about it, and came to the consensus he was a sock puppet and basically banned him to oblivion. I was amazed at the beauty of the democratic process and the fact that people from all over the world could lend a hand.

There are some pages that are vandalized every few minutes, esp politically controversial ones, and Wiki has, I think, had to institute a policy on some of those where you can't make instant changes.

Elena, if you want some help PM me. I'm positive this can be changed for the better. Frankly tho I would minimize the biowarfare stuff. It's all "correlation" and innuendo right now and no proof, and that is not what encyclopedias do. That's what essays and opinion pieces do. And what you really want from the lyme page is acknowledgement there can be chronic infection, and that coinfections need to be looked at (I mean, even wormly Wormser admitted that in NEJM) so that people with early infections get good aggressive treatment and keep aware of possible ongoing symptoms.

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Eight Legs Bad
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Oxygenbabe,

There is nothing in the official guidelines about "major" v "minor" peer-reviewed journals, as far as I can see. They even say that press articles are ok as "Reliable sources".

As far as I can see, the admin DGG is saying that because it is his opinion, not the site policy.

Those researchers whose ground-breaking information eventually overturns the "establishment" view, by definition, must start off in minor journals because the other doors are closed to them. I think that is the argument we need to bring out.

I just don't think we will win this fight by trying to outgun them with quotes from major journals. Of course the Steerites can beat us in that regard, because they have the US govt backing them. How often are we going to get in the NEJM, for example, when Klempner is on the board?

Elena

--------------------
Justice will be ours.

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Eight Legs Bad
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Hi again Oxygenbabe

Thanks for your offer to help. I will p-m you, but bear with me, as I am being p-m'd from all sides at the moment, and between this stuff, my job and family commitments, and other Lyme work I hardly have time to blink.

The original biowarfare material I put up was actually much less. Than McSweegan and co began attacking me on the basis that I did not give enough evidence. That's why I added a whole lot more. (And also to them a lesson for deleting it.)

Personally, I think the amount of evidence we now have, (and only a fraction of it was put on Wikipedia), ***is*** enough to prove the following statement:

"Lyme Disease is a biowarfare issue".

That statement is enough to explain why US federal agencies like CDC and NIH willfully ignore mounds of evidence and deny chronic Lyme.

If I am wrong, and if the denial is ONLY because of the corrupt involvement of doctors with ties to insurance , lyme test-kit companies etc, well, then, Richard Blumenthal has just ended decades of suffering for the global Lyme patient community.

Sadly , despite his good intentions, I dont think his Agreement has, as there is no provision in there to exclude those with ***MILITARY**** conflict of interest.

Elena

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Eight Legs Bad
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Hi Snapcrackle

Just wrote to you on another thread, not realising you were already here...

I am really glad you're prepared to have another go at this battle. I feel a bit as if I let you down before, as you did tell me what was going on.

I think McSweegan is using the name Nighthawk J at the moment. If it is him, he is actually being quite smart at the moment.

Because unlike the other Steerites, who are literally foaming at the mouth in a mad-dog rush to remove every trace of the truth about anything there, he has restored a sentence or two stating there is a controversy and there is an organisation called ILADS that begs to differ.

He is trying to trick those who are not aware of his past and to show how "reasonable" and fair he is. [puke]

One thing, I dont understand where Chip Berlet comes into this? I don't believe he is a shill. I know him very well personally, though it was some years back and my name was different then. But I've never known him to get involved in Lyme issues. Has Chip Berlet been writing on Lyme???

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Eight Legs Bad
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Here is another current debate on Wikipedia's Lyme "Discussion" section:

EM prevalence in Lyme

Harrison's says it's 80%. Apparently the other source said 50%. This is why I left it double sourced and said 50-80%. I'm fine with that, or I'm fine with going with just Harrison's and saying 80%. Any preferences? Antelantalk 19:10, 25 June 2008 (UTC)


I would prefer to go with Harrison's, as a leading internal medicine textbook, rather than ILADS, which is essentially an advocacy group for a particular view of Lyme disease. MastCell Talk 19:52, 25 June 2008 (UTC)


Sounds medically appropriate. I'll make the change. Antelantalk 19:54, 25 June 2008 (UTC)


"Mast Cell", you deleted my version of the paragraph which was an attempt to remedy your violations of the Neutral Point of View policy by listing three different sources - the Steere camp's 80% figure, the ILADS figure, and a figure of 60% published by the US Army Center for Health Promotion and Preventive Medicine, which falls somewhere in between the two.


My material which you deleted also raised the important points that the rash in people with dark skin is often confused with a bruise, and that people of any complexion may miss an existing rash because it is on a "hidden" area of their body, such as the scalp under the hairline, the axilla etc..


You appear to want to censor all information that presents the non-Steere camp point of view, even whem the two sides' views are presented together you are not satisfied.


Your claim that you're not from the Steere camp, and had never heard of Allen Steere before, jars with your claim to be able to conduct a knowledgeable discussion about technical matters such as the prevalence of the erythema chronicum migrans rash.


The fact is, as you are anonymous, no one has any idea whatsoever who you are. I at least have left a name which people could google, if they wished to know more about my background.


The debate about the rash is not JUST a technical matter, by the way. Let me give you all a vey realistic scenario so that you may understand the consequences of your random deletions of my and other people's material.


A member of the public, having been bitten by a tick and suffering vague flu-like symptoms, slightly anxious that he may have Lyme disease, but not unduly worried, as he has no serious symptoms yet, googles Lyme and lands on Wikipedia.


He reads that 80% of sufferers get this rash. Thanks to editing by users like Mast Cell, that is now the ONLY viewpoint on the question available to him.

He sees, on the website, photos of a large and pretty unmistakeable target-shaped lesion. He is 100% sure he has nothing like that on his body so, re-assured, he puts the whole matter out of his mind and does not consult his GP about his post tick bite "summer flu".


Several months later, he awakens in terrible pain, feeling weak as a baby, suffering intermittent spasms of his muscles and shockingly, finds he cannot talk properly.

He grabs his car keys and drags himself to his vehicle. This takes every ounce of energy he has.
His GP is just a few minutes away. But to his horror he finds that he now has cognitive disturbances so severe that he cannot remember the way there, even though he has been there many many times before - in a neighbourhood he has lived in his entire life.


Can he be helped at this stage? Maybe. But he has missed that window of opportunity when his chances of cure were very very good - at the beginning.


That is the responsibility you bear when you randomly delete peer-reviewed material that testifies to the fact that the EM rash often DOES NOT occur. Had our man in the above scenario read that, things might have been different. As it is, he may end up disabled for life.


Of course you and the other Steere camp people here will say that is impossible, chronic Lyme does not exist etc.. The (literally) tens of thousands of members of the Lyme disease patient campaigns out there beg to disagree.

Elena Cook (Username "Shine a Lite" on Wikipedia) Shine a lite (talk) 08:34, 28 June 2008 (UTC)

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riverpatrol
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I first read the Wikipedia description of lyme disease a few months ago (about March). I was extremely impressed with the thoroughness of the article, and the seemingly unbiased information portrayed there. I even followed the link and read about the lyme controversy (I never knew Steere had been stalked!), and followed several other reference links as well. I was so impressed with the degree and quantity of factual information available in one place that I recommended the article to several people who wanted to know about lyme disease, after they learned I have it.

Prompted by posts I have seen lately, this one included, I went and re-read the article this morning. I was horrified. The article totally sucks now. You practically need to have a Phd in biology just to get through the article. It is not informative in an 'encyclopedia' way any longer. Much of what is there now is far too in-depth for the casual reader wanting to learn something about lyme disease. That information should be left for those that want to dig deeper with their own research. Much of the valuable information has been removed, and of the total page content, about one third is allocated simply to references!

Yes, it has been 'Steered' down a very convoluted path. I wanted to submit a complaint to Wikipedia, but I didn't find a means to do so.

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WakeUp
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Hi Lisa:

You are absolutely right when you say:

quote:
I don't think the problem here is a lack of evidence based material.
... The problem is not a lack of evidence based material... it is simply the law of the jungle over there.. with all due respects to Oxygen.... who has never actually edited a seriously controversial page with national security or legal fraud ramifications.... such as the Lyme disease page at Wikipedia...

The way I deal with the law of the jungle over there is to simply immediately cite NPOV-- and verbally threaten the editor or an administrator who deletes a scientific source citing a lame reason for the deletion. Rather than start an edit war... the editors usually relent.

Oxygenbabe---Im sorry to disagree with you about the law of the jungle over at Wiki, but perhaps if you tried to edit the Lyme page you'd see what I mean... so give it a try and you'll understand what a 500 pound, patent-owning, scientific a$$ covering gorilla really feels like!

Hey--- ya gotta carry your weight on the Lyme page at WIKI if your gonna give lots suggestions to those of us who are being beaten up by 500 pound hairy gorillas over there-- no offense.. LOL!!

I will grant you. Oxybabe, that there are some good editors at Wiki, but much of the place has been taken over by paid corporate and intelligence community shills. The latest "Lyme disease controversy" page reads like a glossy vanity brochure for Steere and the IDSA...and makes no mention of Blumenthal.. What a spinzone crock.


I also disagree with Oxybabe that we should stop posting material on biowarfare and its connection to Lyme...its obvious.. and this is essential.. We need to keep at it and hit them hard... citing NPOV and every rule in the Wiki rule book.

I edited the Lyme disease controversy page today to add more of a neutral point of view ....I simply deleted the IDSA golden calf/worship material with one confident stroke... and then I aggressively challenged the editor who tried to put it back in (by taking the lazy way out and hitting the UNDO button), rather than by properly addressing my material and sources ..... He backed off, fearful of an edit war.. LOL...

You just need to be aggressive with these shills.. don't try to reason with them ---- with lengthy explanations or tomes... just sick dozens of their own Wikipedia RULES on them ... and then act tough...like Bill O' Reilly herxing on Zithromax!!!

I hung tough on my Erich Traub page.. and they gave up trying to delete it. Plus my McSweegan page is still up... I had to fight like a dog for that one, and luckily many of the editors agreed with me that it deserved to stay on Wikipdia.

The Steere page makes me vomit-- its so much glossy, self congratulatory fluff -- he set himself up as a scientific demigod!! Its so transparent.
[Big Grin]

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WakeUp
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Oh. Lisa.. about so called journalist "Chip" Berlet... wow... how weird that you know him personally... apparently he comes from a military intelligence community family, and he was at one time employed by the NSA.

I know from personal experience that intelligence agencies often recruit in families....

I once edited the David Ray Griffin page at Wikipedia, and Chip or one of his buddies tried to delete my well researched footnotes regarding former CIA agent Robert Baer's change of heart about the possibility of 9-11 being a domestic false flag event similar to Gladio or Ajax..

Anyway Chip is not who he seems to be-- an unassuming antifascist journalist...and its strange that he's named after John Foster Dulles --- one of Hitler's financiers, who helped get huge volumes of nazi money out of post war Germany.... how strange..... its also very strange that he apparently was once a stalinist... who wrote for High Times magazine.... these odd connnections confirm to me that he is indeed in the intelligence community.... and editing at Wikipedia as a part of his job....so I stopped editing the page as a result.....

As I said... there's no free press left in the US and Chip seems to be promoting the very fascism he claims to hate so much.

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Eight Legs Bad
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quote:
Originally posted by riverpatrol:
....
Yes, it has been 'Steered' down a very convoluted path. I wanted to submit a complaint to Wikipedia, but I didn't find a means to do so.

The way to do it is first register to join Wikipedia, then familiarise yourself a bit with their policies, then complain to the administrators about which policies have been broken.

As an example, they have a policy called "Neutral Point of View (NPOV for short)" which of course the Steerites have violated a thousand times over,but Wiki staff won't understand this till we bring the issues to their attention.

Also please read my comment below updating you all on the current situation there. Thanks.

Elena

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Eight Legs Bad
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quote:
Originally posted by snapcrackle:
Oh. Lisa.. about so called journalist "Chip" Berlet... wow... how weird that you know him personally... apparently he comes from a military intelligence community family, and he was at one time employed by the NSA. ....

Hi Snap

I did know Chip some years back...know nothing about his family. Maybe they are spooks but it doesn't necessarily follow that he is one too.

There are a few people in both British and American Lymeland with links to or family members in intelligence organisations, but they have come to reject the philosophy of those orgs because they have experienced first-hand the suffering caused by the jingoistic pro-WMD mentality of intelligence people.

Will talk to you off-list re Chip as I dont want to distract from the main discussion. Have news which I will post in a separate comment for everyone below.

Anyhow thanks again for helping out.

Cheers
Elena

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Eight Legs Bad
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Hi everyone

Am copying part of my post to "Activism" section to update people here about what's happened now at Wikipedia.

Elena

"...However it looks like the Steerites have ganged up to now block me from editing wikipedia material at all. They have told Wiki staff that I have broken the rules by discussing the situation with all of you guys here, and with other Lymies by email.

Apparently there is a rule that says "no recruitment" ie you are not allowed to inform other people about mistaken info on Wikipedia, and urge them to help you correct it.

The Wiki founders believe that somehow a natural "consensus" will emerge by people randomly reading the encyclopedia and correcting mistakes.

Personally I think the whole situation with the Lyme entry is ridiculous as the Steerites have obviously been recruiting, as well as creating multiple accounts for the same user.

The difference is, the Steerites do not discuss their intentions on a public forum like we are, but in a much more clandestine way, ie the same way they operate in general to do their mayhem.

The result is it is much harder to prove that they are doing this, even though it is obvious to those of us who have participated in the wiki editing.

The situation now, if I understand it right, is that we are all effectively blocked till 7 July as the Steerites have succeeded in lobbying Wiki staff to tell them there is an "edit war" between us and them.

Wiki staff's response was to freeze the page the way it is. Of course the Steerites made sure they had deleted all our material and pasted in their own noxious garbage before making the request.

So now the article is "frozen" just the way they like it - full of lies that can do major harm to the public who reads them.

However, all is not lost, as people can write in and protest both this temporary freeze of the page, and also the blocking of me and any other Lymies who receive the same treatment.

So I suggest that as many of you as possible take the time to register with Wikipedia, familiarise yourself a bit with the rules, look at the "History" and "Discussion" tabs on the Lyme article to see what has been going on, then write in to wiki admin staff with your views.

If a fraction of the people here wrote in, I am sure it would make a major difference. Remember that the victims of the Steerites' actions outnumber the swine themselves by thousands to one.

Just don't mention that Elena suggested you have a look, or they will block you too!

[cussing] Elena
"

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METALLlC BLUE
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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

* 2 Cause
........o 2.1 Transmission

* 3 Tick borne co-infections

* 4 Diagnosis
........o 4.1 Laboratory testing
........o 4.2 Imaging

* 5 Prevention
........o 5.1 Management of host animals
........o 5.2 Vaccination
........o 5.3 Tick removal

* 6 Treatment
........o 6.1 Post-Lyme disease symptoms and "chronic Lyme disease"
........o 6.2 Antibiotic-resistant therapies
........o 6.3 Alternative therapies

* 7 Prognosis

* 8 Ecology

* 9 Epidemiology

* 10 Controversy and politics

* 11 Pathophysiology
........o 11.1 Immunological studies

* 12 History

* 13 References

* 14 Bibliography

* 15 Documentary Film

* 16 External links

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:

quote:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/8/1286

"I chose from the 2006 version and then :

* 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:

E-mail me for the 2006 version: sbauzys@comcast.net

To read the latest version on Wikipedia visit:

http://en.wikipedia.org/wiki/Lyme_Disease


WHERE WILL WE KEEP TRACK OF WHO IS DOING WHAT?

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.

quote:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/8/1286



[ 03-25-2009, 11:41 AM: Message edited by: METALLlC BLUE ]

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: sbauzys@comcast.net

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