Talk:International Lyme and Associated Diseases Society

Changes tonight

Dr. ShapiroWormser please discuss your proposed changes, per WP:BRD. Thanks. Jytdog (talk) 04:28, 22 March 2016 (UTC)

changes today

The entry for the International Lyme and Associated Diseases Society contains subjective, biased opinions and should be revised. Specifically:

Problematic (false) claim number one:

"Controversy exists as to the existence of "chronic Lyme disease", with some advocating for the use of long term antibiotics for treatment of a postulated persistent infection. However, the assumption that there is a persistent infection is not supported by high quality clinical evidence, and the use of long term antibiotics is not recommended.[6]" This is not factual. Persister forms of Borrelia burgdorferi bacteria have been observed and studied in laboratories for years, as evident in each of the following studies (cited below are only a few of a growing body of research), published in peer-reviewed journals. This information has been cited in multiple updates to the International Lyme and Associated Diseases Society Wikipedia article, but all revisions have been overwritten by the same user, Jytdog.

Borrelia burgdorferi, the Causative Agent of Lyme Disease, Forms Drug-Tolerant Persister Cells.

Persister Development by Borrelia burgdorferi Populations In Vitro.

Drug combinations against Borrelia burgdorferi persisters in vitro: eradication achieved by using daptomycin, cefoperazone and doxycycline.

Further, the statement "the use of long-term antibiotics is not recommended" is a biased statement. Recommended by whom? The International Lyme and Associated Diseases Society--the organization that this entry is supposed to describe--in fact does recommend long-term antibiotic use, varying among individual patients and at the discretion of Lyme-literate physicians.The existing Wikipedia entry about the International Lyme and Associated Diseases Society states absolutely that prolonged antibiotic treatment "is not recommended" when, in fact, it is recommended by the organization.

Problematic claim number two:

"Major US medical authorities, including the Infectious Diseases Society of America,[7] the American Academy of Neurology,[8] and the National Institutes of Health,[9] are careful to distinguish the diagnosis and treatment of "patients who have had well-documented Lyme disease and who remain symptomatic for many months to years after completion of appropriate antibiotic therapy"[7]:1116 from patients who have not had well-documented Lyme disease; the consensus accepts the existence of post–Lyme disease symptoms in a minority of patients who have had Lyme. The consensus rejects long-term antibiotic treatment even for these patients, as entailing too much risk and lacking sufficient efficacy to subject patients to the risks.[7]:1115[8]:99[9] The consensus calls for more research into understanding the pathologies that afflict patients with post-Lyme syndrome and into better treatments.""

This paragraph is problematic for a number of reasons. First, this article is about the International Lyme and Associated Diseases Society--yet an entire paragraph here is dedicated to positions taken by other organizations, not ILADS. These contrary points of view belong within each of these organizations' respective entries, and not within the ILADS article. Placing this information as it is currently worded within the main body of the ILADS article undermines the ILADS organization and thus has a clearly biased political agenda. Further, the author of the above paragraph positions three randomly selected medical organizations--the Infectious Diseases Society of America, American Academy of Neurology, and National Institutes of Health--as "the consensus," implying that these three bodies together represent an unchallenged medical/scientific consensus. This is not the case. The International Lyme and Associated Diseases Society, to begin with, is a legitimate association of medical professionals, and as such it has a voice in the collective opinion of medical treatment--yet even within its own Wikipedia entry, its opinion is denigrated in biased favor of three selected medical organizations that the article's author and editors describe as "the consensus." If the above information is to be kept within the Wikipedia article on the International Lyme and Associated Diseases Society, then this information should be included under a "controversies" heading, as is done in other Wikipedia articles, and not within the body of the description of the ILADS organization, which serves to undermine the organization's credibility.

"ILADS also calls for more research into better diagnostics and treatments. However, ILADS has questioned the generalizability and reliability of some of the trials referred to by IDSA and the reliability of the current diagnostic tests.[10] As a result of this fundamentally different view of the nature of long-term effects and persistence of Borrelia infection, and in its role as an advocate for aggressive treatment of patients it identifies as having Borrelia infection, ILADS has produced diagnostic and treatment recommendations that lead to long-term antibiotic treatment of patients with "chronic Lyme disease" that directly contradict the consensus positions. For example ILADS recommends a clinical diagnostic approach to Lyme (as opposed to a diagnosis based primarily on laboratory tests).[11] Additionally it calls for laboratory tests that the consensus deems unreliable.[12] Having diagnosed a patient as having a Borrelia infection, it therefore recommends variations of antibiotic treatment, such as longer term or pulsed treatment, since these patients have already failed the standard treatment.[13]"

The above paragraph continues to undermine the ILADS position by juxtaposing it with "the consensus" opinion, which is a consensus only among other organizations that have reached a consensus with one another. The scientific and medical communities have not reached a consensus about this, particularly given that ILADS is a part of the medical community and that ILADS takes the opposite position. This paragraph, again, is biased and subjective, and its sole purpose within the article appears to be to discredit the ILADS organization.

Perhaps most problematic claim from the above paragraph is the statement, "For example ILADS recommends a clinical diagnostic approach to Lyme (as opposed to a diagnosis based primarily on laboratory tests).[11] Additionally it calls for laboratory tests that the consensus deems unreliable.[12]" First, both references 11 and 12 are broken links and therefore are useless references. Secondly, the claim that ILADS "calls for laboratory tests that the consensus deems unreliable" again invokes an invented "consensus," it does not specify the diagnostic tests that it claims are unreliable, and most problematically, it includes a great error of omission: it does not mention that the two-tiered blood tests for Lyme recommended by the U.S. Centers for Disease Control and Prevention--the ELISA test and the Western blot test--have been proven in eight separate research studies to have only between 18-67 percent sensitivity. If this article states that ILADS-recommended alternative tests for Borrelia burgdorferi or coinfections are "unreliable," the article must cite its sources, and it must put this statement into context by also disclosing that the two tests recommended by what this article has been calling "the consensus" are highly unreliable. This last point must not be overlooked: Both the commonwealth of Virginia and the state of Maryland have passed laws requiring that physicians disclose the unreliability of Lyme disease tests that are recommended by the organizations that the author of the existing ILADS Wikipedia article calls "the consensus."

The final paragraph states:

"A 2004 article in the Pediatric Infectious Disease Journal on the prevalence of inaccurate online information about Lyme disease cited the ILADS website as a source of such inaccurate material.[14] One source reported that several current and former phsyician officers of ILADS had been sanctioned by federal agencies or state medical boards.[2]"

First, I corrected the incorrect spelling of "physician," but the incorrect spelling was overwritten by "Jytdog," the individual who appears to have full oversight over the ILADS article. Secondly, Reference 14 that supposedly substantiates this statement links to the U.S. Centers for Disease Control and Prevention's default web page on Lyme disease, with no indication of, reference or link to the alleged 2004 journal article. For this reason, the statement should be removed. If the article does exist and is correctly cited, then the statement should be relocated to a subheading about controversies or criticisms of ILADS, as is done in most other Wikipedia articles. As a reference, the Infectious Diseases Society of America entry included a subheading on "Lyme disease treatment guidelines" in which the specific controversies are discussed; the entire IDSA is not undermined or criticized in the IDSA article because of these controversies. The ILADS article should follow the same model.

Finally, the statement "one source reported that several current and former physician officers of ILADS..." is severely problematic for a number of reasons. "One source" is nonspecific and the citation of a single source of criticism amounts to hearsay, and potentially slander or libel. If the information stated here is documented, then the documented fact should be presented as such, not as "according to one source," and correct citations must be given to substantiate the statement. Beyond this, the sanctioning of individual members of a group--whether true or not--cannot fairly be construed to imply that these individuals somehow reflect on the ILADS organization. As an example, more than several current and former members of U.S. Congress have been sanctioned, prosecuted and found guilty of various felonies; however, the WIkipedia entries on the U.S. Senate and the U.S. House of Representatives obviously do not state that these legislative bodies as a whole are condemnable because of the actions of individual members.

Overall, the article as written is biased and irresponsible and does not adhere to Wikipedia standards. I and others have updated the article's grammar, references, and body with more accurate and more objective information, and every one of these revisions has been immediately overwritten by a user called Jytdog who appears to have full editorial authority over the ILADS entry.

In reality, the first two paragraphs of the existing entry are both factual and objective, neither supporting nor condemning the ILADS organization, and these serve as a sufficient means of describing the organization in an encyclopedic style. Wikipedia should adhere to its standard of encyclopedic content, rather than the biased editorial direction of this article.

References

ArtistLike (talk) 12:10, 15 May 2016 (UTC)

in general in Wikipedia, you are going to find that write a WP:WALL on the talk page and then making dramatic changes is going to get you no where. Things work by policy-based consensus here, and changes that dramatic are not going to get consensus. So please pick one thing to discuss changing. Thanks. I did fix the broken links you pointed out. Thanks for that. I took at link at the sources you cite. The three scientific papers are all primary sources and we don't use them. We don't use sites like lymedisease.org either -- please do see WP:MEDRS for the kinds of sources that are OK for sourcing biomedical content. Jytdog (talk) 12:48, 15 May 2016 (UTC)

arbitrary break

Jytdog, if the bulk of the article is biased and full of easily provable errors, then your policy should not be to wholly reject revisions because there are many of them. That stated, let's start with the opening paragraph. ILADS is a professional medical society, not an advocacy group. Just like the Infectious Diseases Society of America, which is correctly described on Wikipedia as a medical association, ILADS is a professional organization of board-certified medical doctors. Further, ILADS does not exist for the purpose stated in the Wikipedia description: The article should use the ILADS organization itself as the primary source when describing the organization. The ILADS mission is as follows: "ILADS is a nonprofit, international, multidisciplinary medical society dedicated to the appropriate diagnosis and treatment of Lyme and associated diseases. ILADS promotes understanding of Lyme and associated diseases through research, education and policy. We strongly support physicians, scientists, researchers and other healthcare professionals dedicated to advancing the standard of care for Lyme and associated diseases. Using secondary sources, particularly if those sources are journal articles that state authors' opinions, is not a legitimate surrogate for describing the organization as it describes itself.

References

-- ArtistLike (talk) 13:15, 15 May 2016 (UTC)

Please have the courtesy of threading your comments, which is standard talk page protocol in Wikipedia. Actually we don't usually allow any one or any organization to define itself in Wikipedia. We look for independent sources for that sort of thing. Jytdog (talk) 13:21, 15 May 2016 (UTC)

That is absolutely false. See the Wikipedia article on The Infectious Diseases Society of America, which cites the IDSA's own "Forming the Society" history on the IDSA's own website as the description of the society. Further, even if Wikipedia's policy is only to use secondary sources, then your selection of sources is clearly biased anyway. You have chosen to cite articles by researchers who have clearly stated their disapproval of ILADS as an organization; other medical journal articles describe ILADS differently. So please address in your reply 1) why ILADS cannot be described as a medical society when it describes itself that way, and when the IDSA article describes the IDSA as a medical society based on the IDSA's description of itself; and 2) why the article cites only journal articles that are clearly biased against ILADS. If another contributor cites medical journal articles that are not condemning of ILADS, will you permit those to be cited, or will you override those revisions as you have done all others to maintain the article as it is currently written? I look forward to your reply.

References

ArtistLike (talk) 13:33, 15 May 2016 (UTC)

That ref is not used to define the society's mission; it is used once to give membership numbers and again to reference that they publish a journal. If you are going to use refs it would be great if you used a {{reflist-talk}} tag so the bottom of this page doesn't get cluttered. thx Jytdog (talk) 13:37, 15 May 2016 (UTC)

You are avoiding the substance of the question/concern: IDSA is a medical society. IDSA is referred to as a medical society in its Wikipedia page. ILADS is a medical society. ILADS is described as an advocacy group in its Wikipedia page. This Wikipedia article overall is made up of exclusively anti-ILADS/chronic Lyme disease opinions that are rooted in selected citations that support those these opinions, entirely neglecting differing and well-substantiated medical and scientific opinions. A review of the talk archive for this article reveals that many others, including medical doctors and researchers, have made repeated attempts to revise this article to make it objective and reduce bias, and you have personally overwritten reasonable edits to maintain the page as it stands today, which is riddled with inaccuracies, hearsay, and other misleading or patently false information. Before anyone makes any updates that cite peer-reviewed journal articles that are not malicious toward ILADS, please acknowledge that you will not override these revisions because they do not meet your evident personal opinions. ArtistLike (talk) 14:07, 15 May 2016 (UTC)

We follow sources in Wikipedia; the current content has nothing to do with personal preference. There are two sources provided for describing it as an advocacy group. Yes there has been struggle on this Talk page; people who support advocacy groups often don't like them being described that way, but we follow sources. ILADS takes a minority position on Lyme and Wikipedia reflects that. Jytdog (talk) 20:31, 15 May 2016 (UTC)

ILADS is cited abundantly in peer-reviewed medical journals as a legitimate professional medical association, and not dismissed as an activist group. The two given citations on which you base your decision to call the organization an advocacy group are two journal articles among many, and they have been chosen arbitrarily. American Medical News, a newsletter published by the American Medical Association, describes ILADS as "a multidisciplinary medical society focused on the diagnosis and treatment of Lyme disease" (http://www.amednews.com/article/20061225/health/312259976/4/). Following are several sources that cite ILADS's treatment guidelines as they would any other legitimate medical association. The choice of the two cited references to justify dismissing the organization as an advocacy group is unfounded.

• https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4196523/
• https://www.ncbi.nlm.nih.gov/pubmed/22320049
• https://www.ncbi.nlm.nih.gov/pubmed/15581390

ArtistLike (talk) 00:43, 18 May 2016 (UTC)

Do you disagree that ILADS is trying to change the standard of care with regard to recognition and treatment of "chronic lyme"? Jytdog (talk) 01:20, 18 May 2016 (UTC)

I don't work for ILADS or have any affiliation with the organization, and so I cannot speak to the organization's motivations. And neither should you. I have attempted to correct misinformation about Lyme disease that is stated in this article, as many individuals including medical doctors have attempted to do before me, and you have overwritten all of them from a biased perspective. I have attempted to describe ILADS as a medical association, which it is, and you have repeatedly suggested that the two references you have elected to call valid exist in a vacuum, denying any other reference either from the ILADS organization itself or from medical journals or respected medical associations. This is not neutral editing; it's prejudiced editing. You've stated repeatedly here that your editing of this page is based on Wikipedia policies and on available information and not personal opinion or bias. Yet, you are ignoring available information that does not conform with your opinion of the ILADS organization, and that you asked me to confirm or deny your *personal interpretation* of the ILADS organization reveals that you yourself have a strong opinion and therefore are editing from a perspective of bias. This is not to mention that your user profile here discloses that you are employed by a company that develops medications to treat neurological health problems. Untreated Lyme disease progresses to a condition called neuroborreliosis in many patients, and so both your revisions of this article and your bias are undeniably suspect. I won't argue this point any further here because it appears that you personally have total domain over the ILADS Wikipedia page. I won't attempt to revise this page again, but this process and your insistence on maintaining false information on this page are troubling, to say the least.ArtistLike (talk) 01:33, 18 May 2016 (UTC)

So you don't understand what ILAD's mission is or how it fits in the landscape of Lyme treatment. Please then, do read the two sources provided that support the "advocacy group" description. Thanks. Jytdog (talk) 01:54, 18 May 2016 (UTC)

Added POV Template

This article represents biased anti-ILADS point of view. See discussion above for more details. 80.94.55.9 (talk) 00:03, 14 November 2023 (UTC)

No it doesn't. 2001:8003:512D:C201:5BE:954A:5BFA:798A (talk) 03:42, 26 December 2023 (UTC)