Talk:Chronic Lyme disease/Archive 1

Archive 1

Archive 2

Implications for treatment

It is not valid to sneak POV into this page by saying there is "no evidence" for persistent infection, when that evidence is quite clearly documented at Lyme_disease_microbiology.

It is also POV to say that we need a better definition for "post-lyme syndrome" - this is a statement right out of the IDSA guidelines. It presumes that "post-lyme syndrome" is in fact what we are dealing with, when the heart of the controversy is whether it is appropriately considered "post-lyme syndrome" or chronic infection.

Let's explain the controversy, not push sides. 75.41.71.106 14:10, 26 April 2007 (UTC)

I disagree. There is no consensus on whether there is on going infection or autoimmune reaction in the chroinic lyme page. May be different scenarios in different patients. This page is already 100% POV in the direction of persisting infection, when post lyme syndrome (meaning antibiotic refractic) is a real condition. Not all patients respond to antibiotics, even years of it. {67.82.232.151 18:39, 26 April 2007 (UTC)}

The page is not 100% POV in persisting infection; it explains the position of IDSA quite clearly. Meanwhile your previous edit was that there was NO evidence of persisting infection, so your POV is blatant especially given the evidence outlined at Lyme_disease_microbiology#Mechanisms_of_persistence.

This is key: the term "post-Lyme syndrome" does not simply mean antibiotic refractic. It suggests that the infection has been eradicated. VERY different, and that is at the heart of the controversy.

The point is that both sides have to be explained, and neither should be presumed correct. This means that "post-lyme syndrome" - a term newly pushed by IDSA with implications you failed to acknowledge - is not a given. You say antibiotic failures prove the existence of "post-Lyme syndrome." But ILADS argues that failure (particularly short-term) can mean ongoing infection, which is clearly not "post-Lyme". Even if long-term antibiotics do not work, this does not prove the infection has been eradicated when one considers the evidence that persistent infection sometimes occurs even despite long-term therapy. Some of this evidence was authored by several of the IDSA authors themselves, ironically enough. And I completely agree that there may be different scenarios for different patients. (I'd suspect ILADS would agree with you on this as well, whereas IDSA insists that ongoing infection is extraordinarily rare if it exists at all.)

Now I am not saying ILADS' view is correct, just that there are indeed two valid positions with support in the medical literature, and that "post-lyme syndrome" and "no evidence of infection" are terms that reflect only IDSA's position. That needs to be put in context, since this is an article on the controversy.

Please be aware that this is an encyclopedia, not the journal of the IDSA. In order to keep WP:NPOV, competing views need to be presented as such. The existence of something called "post-lyme syndrome" is reflective of ONE side, same with chronic infection. 75.41.71.106 20:40, 26 April 2007 (UTC)

Looking at the page again, "PLS" in the intro is entirely inappropriate as the sentence concerns the likelihood of a chronic infection existing -- such a chronic infection would NOT be PLS by the IDSA's own definition. Please see their guidelines, Table 5, for exclusions. 75.41.71.106 21:19, 26 April 2007 (UTC)

Chronic Lyme and Post Lyme syndrome

Perhaps there's some confusion here. I removed lines like "Patients with PLS may or may not have serologic evidence of continuing spirochete infection" for this reason: PLS by definition means no continuing infection. Evidence of infection is one of the exclusionary criteria. The IDSA's proposed PLS definition is not meant to encompass all late-stage lyme, just patients without ongoing infection. Since they don't believe in persistent infection, that's pretty much everyone who stays sick. If you don't believe me, please see the IDSA guidelines at [1], especially Table 5.

It's not anyone's place to talk about what evidence is convincing. This article is meant to describe the two positions, not what doctors or patients should do (i.e. no judgements and declarative statements about whether or not things "may persist" when the point of this page is to describe two sides). Please see WP:NOR.

I also found the comparison strange between no consensus on treatment for "chronic Lyme" and no treatment recommended at all for PLS. That's not parallel; in one case ILADS recommends antibiotics and IDSA doesn't, in the other case IDSA proposed a new "syndrome" with no treatment. 75.41.71.106 21:19, 26 April 2007 (UTC)

Reply:

The subject is broader than IDSA vs ILADS. Lyme is global, no just in the U.S., though the U.S. usually sets the international standards for treatment.

PLS does include ongoing infection by IDSA guidlines, and "symptomatic therapy" is suggested (unfortunately no symptomatic therapies are mentioned in either IDSA or ILADS guidelines). PLS and chronic lyme are now considered one and the same by IDSA.

I am trying to delineate that chronic lyme (continuous infection) and post lyme syndrome ("autoimmune") can both exist. It's not necessarily one or the other and needs to be reviewed on a case by case basis until more is known about the infectious agent, its subspecies and human host responses. That is the broader view and takes in all the science available without going into specifics. {67.82.232.151 00:38, 27 April 2007 (UTC)}

Fallon study

I am concerned about the manner in which Brian Fallon's 2004 randomized trial is discussed on this page. Apparently, this data has never been published, athough it was orally presented at a research conference. The section on this page makes claims which are not present in the only written reference cited (the LDA press release). Because those claims are not published, they fail the Wikipedia policy requiring content to be verifiable. I am not an expert on the topic of chronic lyme disease, and this is not intended as an attack on the science or the scientist - I merely point out that scientific claims should not be included on wikipedia until they are published. -Rustavo^{Talk/Contribs} 01:55, 9 May 2007 (UTC)

---

May I point out to Rustavo that numerous industry studies were published attesting to the safety of smoking during the 1960s. In fact, medical dent students were required to answer yes to a test question "is smoking is safe" on exams back in the 1970s..... a test question which was clearly misguided and wrong based on many "published studies..." Studies which turned out to be bogus.

So, my friend, publication does not necessarily indicate the merit of a study. Reputation of the scientist is of the utmost importance, and Fallon has been widely published in numerous journals and he is considered to be an expert on neuroborreliosis. His findings were delivered at a reputable conference. I question the validity of your concern about Fallon, and frankly would be interested in knowing the motivation, since you are admittedly not an expert on Lyme disease..

Perhaps you could employ your sharp editorial efforts on a Wikipedia subject like "Hormone Replacement Therapy," which is much more poorly footnoted and documented than this page is.. (only 4 weak footnotes on a page that has serious health implications for hundreds of thousands of women......)

I might point out that Hormone Replace Therapy has recently been indicated in a large number of cancers and has had great impact in public health, so I question why so many admitedly uninformed individuals are so interested in the Lyme treatment debate, when patients with neuroborreliosis are clearly benefitting from treatment as many studies have shown.

It seems quite odd, given the many other health concerns out there and the many other poorly documented/footnoted medical sites on Wikipedia.. It would be wonderful if we could explain our motivations for changes here... Thank you, Freyfaxi 20:06, 19 May 2007 (UTC)

I will answer your personal questions about me on your talk page. Please try not to turn these discussions into personal attacks - remember that assuming good faith is a fundamental principle of Wikipedia. -Rustavo^{Talk/Contribs} 03:23, 20 May 2007 (UTC)

Table

The two standards of care table is very hard to read and leaning towards POV. I think a general description of the debate is better, and that the table be removed and substituted with a more traditional format. I will wait on making changes (changes I make will be format, but keep wording verbatim), until this comment is responded too. If not responded within a week I will go ahead with changes. (Fredweis 17:41, 14 May 2007 (UTC))

I haven't really contributed to this page, but from having worked on pages with similar medical controversies, I can say that the most difficult task is keeping one side from trying to overwhelm the other with volume of writing - the result is an overlong, rambling, and unreadable article. Although the table is unconventional, I think it is actually quite readable and keeps things concise & balanced. You might want to look back and see what the discussion & issues were that lead to its creation in the first place - it may be a necessary evil. -Rustavo^{Talk/Contribs} 17:48, 14 May 2007 (UTC)

OK, now I have contributed to the page :-) -Rustavo^{Talk/Contribs} 19:00, 14 May 2007 (UTC)

I know the topic quite well, the info inside the table "leans" to POV, its not terribly brash conjecture by any means, its well cited material, just its presentation is a bit POV. I think a summary of the opposing view points may be better, and then have the table beneath. My dislike of the the table is there is a lot of info squeezed in the boxes. A summary with quotes, and the table displaying more simplified info may be more easily readible(Fredweis)

OK, but whatever new format you come up with, it would be good to have some built-in constraint on the relative amount of content for each "standard of care." -Rustavo^{Talk/Contribs} 22:32, 15 May 2007 (UTC)

The table is a VERY important source of information for Lyme sufferers and for the scientific commmunity in general. Science is a process of debating different theories and hypotheses with the scientific method. Might I remind readers here that the scientific "herd" is not always ultimately correct, especially when large research grants disort rational thinking processes and stymie the free flow of information. As I recall, the world did not turn out to be "flat..." though all reputable thinkers of the day insisted that it was flat. I vote that the detailed table REMAIN here, or preferably be reinserted back into the main Lyme disease page-- which is where it belongs in the first place. Those of you who wish to censor this information will not ultimately prevail in your attempts. Scientists in Europe are currently in the process of proving the persistent infection hypothesis and congenital transmission has already been documented. I would be happy to provide the footnotes. Thank you. Freyfaxi 19:03, 19 May 2007 (UTC)

Has nothing to do with censorship, there is NPOV literature in the table, such as the term "circular reasoning", whether true or not, this is not a presentation of facts, but someone's representation of the facts. Plus the table takes up almost the whole article. It needs to be more concise.

Jay Sanford's 1976 paper noting persistence of infection, published in the Biology of Parasitic Spirochetes.

Hi, I have inserted the following paragraph proving that military doctors had a consensus regarding persistent infection of the borrelia spirochete in the brain and eye as early as 1976:

About the time that the Lyme epidemic was identified in the 1970s, Dr. Jay Sanford, a former Walter Reed Army Institute of Research doctor, published a 1976 paper in a book titled “The Biology of Parasitic Spirochetes.” In it, Dr. Sanford stated: "the ability of borrelia, especially tick-borne strains, to persist in the brain and in the eye during remission after treatment with arsenic or with penicillin or even after apparent cure, is well known.” Although the notion of persistent neurological infection was identified early on by military researchers such as Dr. Sanford, later Lyme researchers curiously denied the possibility of persistent borrelia infection in the brain, with many researchers ignoring repeated evidence of persistent infection.

Before contesting the above paragraph for unknown reasons, please provide SOLID scientific evidence with footnotes proving that Mr. Sanford's early assertion about persistent infection is WRONG. It is not acceptable to delete a scientific a footnote without evidence to the contrary. Please also provide scientific proof that the syphilis spirochete, a relative of the borrelia spirochete, does NOT persist as an infection in the brain. Please provide footnoted evidence to the contrary BEFORE you plan on contesting this paragraph. Thank you,

References

Freyfaxi 18:46, 19 May 2007 (UTC)

Sanford says "Borrelia", he does not delineate between borrelia burgdoferi sensu lato (lyme) or borrelia of the relapsing type (borrelia recurrentis). The statement needs more context. Also the statement predates the Lyme controversy, so it is not particularly relevant in the contemporary argument. There is plenty of hard evidence of persistent borrelia burgdoferi sensu lato infection on Lyme disease microbiology page. Access to the article would be nice if you could post it. (Fredweis 23:44, 19 May 2007 (UTC))

University of Graz co-trimoxazole and roxithromycin treatment study: 76% recovery rate

Here's just one of many european studies asserting the benefit of extended antibiotic treatment for those with chronic infection. This kind of study coming out of Europe is very important for those who suffer. Thank you.

Oral treatment of late Lyme borreliosis with a combination of roxithromycin and co-trimoxazole--a pilot study on 18 patients. • Gasser R, • Reisinger E, • Sedaj B, • Horvarth R, • Seinost G, • Keplinger A, • Wendelin I, • Klein W. Department of Internal Medicine, University Graz. In this pilot trial, 18 patients participated in an investigation in which the combined therapy of co-trimoxazole and roxithromycin in late Lyme borreliosis was tested. The study has been performed as a result of earlier case reports in "The Lancet" where this combination has been used successfully in order to thwart late Lyme disease. The authors show that 76% of the patients recovered completely. In 2 patients, symptoms could be resolved with i.v. penicillin and 2 did not respond to any antibiotic therapy. These results show that oral therapy of co-trimoxazole and roxithromycin in combination provides similar results as i.v. antibiotics in earlier studies. PMID: 8798283 [PubMed - indexed for MEDLINE] Freyfaxi 19:25, 19 May 2007 (UTC)

This page has only been posting randomized studies, which the above is not, its an observational study, which the guidelines have not taken into account, they could be posted under a new heading for observational studies. There are some other studies worth posting here:

• Randomized placebo-controlled Studies

Steere, 1985 - 40 patients with established Lyme arthritis were randomized to receive weekly IM injections of benzathine penicillin or placebo. 35% of the treated patients had complete resolution of their symptoms and remained symptom-free during a mean follow-up period of 33 months. None of the placebo treated patients improved. As compared with nonresponders, penicillin responsive patients were more likely to have received antibiotics for early Lyme disease and less likely to have received intra-articular steroids.

• Randomized Trials:

Dattwyler, 1988 - 23 patients with clinically active late Lyme disease were randomly assigned to IV treatment with either penicillin or ceftriaxone. Of the 10 treated with penicillin, 5 were judged treatment failures; of the 13 who received ceftriaxone, only 1 patient did not respond. An additional 31 patients were subsequently treated with ceftriaxone with similar results. Patients that were unresponsive to ceftriaxone were more likely to have received corticosteroid treatment.

Pfister, 1989 -21 patients with radiculitis or neuroborreliosis associated with Lyme disease were randomized to receive a 10 day treatment with either IV penicillin G or cefataxime. There were no differences in the outcomes of the two groups. See Pfister, 1991 below.

Hassler, 1990 -135 patients with late-stage Lyme disease were randomized to receive IV penicillin G or IV cefotaxmine for 10 days. Cefotaxamine was significantly more effective than penicillin G with 87.9% vs 61.3% reporting full or partial remission of symptoms 24 months later.

Pfister, 1991 -33 patients with Lyme neuroborreliosis were randomized to receive a 10 day course of either IV ceftriaxone or Cefotaxime. Neurologic symptoms improved or subsided in 26/30 patients-there was no difference in treatment groups. At a mean follow-up of 8 months, 17/27 patients were clinically asymptomatic. Bb was isolated from the CSF of one patient 7 months after ceftriaxone therapy. Since 10 patients remained symptomatic, the authors concluded that a prolongation of therapy might be necessary.

Steere, 1994 -38 patients with Lyme arthritis were randomly assigned to 30 days of treatment with either doxycycline or amoxicillin plus probenecid. Patients who had persistent arthritis 3 months following treatment were given IV ceftriaxone for 2 weeks. 16/18 of the patients treated with amoxicillin and 18/20 treated with doxycycline had resolution of arthritis symptoms within 3 months of treatment. However, neuroborreliosis later developed in 5 patients. Of 16 patients with persistent arthritis who were treated with IV ceftriaxone, none had resolution of arthritis within 3 months. The authors concluded that even with resolution of specific manifestations of Lyme disease with oral antibiotics, there is still a risk of developing additional symptoms of Lyme at a later time. Persistent arthritis may be related to an autoimmune phenomenon (although they did not rule out persistent infection with PCR or culture). Others concluded that 2 weeks of IV ceftriaxone may be insufficient to address Lyme arthritis.

Wahlberg, 1994 -100 consecutive late-Lyme disease patients were treated with different antibiotic regimens and followed up for 12 months after treatment. Treatment outcome was successful in 4/13 patients treated with IV ceftriaxone for 14 days, 50/56 patients treated with ceftriaxone followed by 100 days of amoxicillin with probenecid, and 19/23 of those treated with IV ceftriaxone for 14 days followed by 100 days of cephadroxil.

Okski, 1998 -randomized 60 patients with disseminated Lyme borreliosis based on CDC diagnostic criteria to receive either cefexime and probenecid orally for 100 days or ceftriaxone IV for 14 days followed by oral amoxicillin and probenecid for 100 days. The immediate outcome after antibiotics was not different between the two treatment groups. However, after a year of follow-up, there were significantly greater relapses, treatment failures, and positive PCR tests. The results of this study support the use of intravenous antibiotics along with prolonged antibiotic therapy in patients with late-stage Lyme disease.

Fallon, 1999 -studied 23 Lyme patients who complained of persistent memory difficulties after IV antibiotic therapy of 4-16 weeks. Four months after their initial treatment, 18 of the patients received additional IV antibiotics and compared with the others who did not receive additional antibiotics. Those receiving additional IV antibiotics scored better on cognition tests, greatest functional improvement in energy, pain, and physical functioning than untreated patients. Based on the results from this pilot study, the authors concluded that there was enough evidence to plan a larger study investigating the utility of repeated courses of IV antibiotics (see Fallon, 2004).

Logigian, 1999 -a series of 18 consecutive patients with Lyme encephalopathy and symptoms of memory difficulty, minor depression, somnolence, or headache were treated with 30 days of IV ceftriaxone. At the beginning of treatment, 89% had abnormal memory scores, 89% had CSF abnormalities and all tested had perfusion defects on SPECT scan. Six months after treatment, memory scores were significantly improved, CSF protein levels were significantly less, and post-treatment perfusion was significantly improved. 12-24 months after treatment, all patients rated themselves as improved or back to normal.

(Fredweis 23:51, 19 May 2007 (UTC))

NEJM article

I added an external link to an NEJM article. Maybe someone more knowledgeable can incorporate the conclusions into the article itself? JH-man 12:11, 5 October 2007 (UTC)

POV tag

This article reads like a press release from ILADS. I changed some things but there is still alot to do. The views of Raphael Stricker get more weight here then the entire medical community. Yes there is real controversy but it is not fair to allege stuff against IDSA when you ignore the ILADS conflict of interest, they are the ones that get rich treating people with no evidence of infection with multi thousand dollar transfusions of stuff that is not proven to help them. And they want insurance to pay for it. This artcile needs some neutral eyes I will help for a while, I have no position on Lyme one way or another but it is obvious what the real mainstream medical one is and that needs to get more weight than a few hundred doctors who advocate chronic lyme for their livelyhood. RetroS1mone talk 13:10, 17 June 2008 (UTC)

POV section on testing

I have moved this section b/c it is just "Test says this, one sentence, ILADS critics say this, several paras". I don't see how to improve it w/o re writing. Go for it, here it is:

Testing==

The debate over Lyme disease testing remains a heated one, with concern over both false-positives and false-negatives (see Lyme disease#Diagnosis). Tests currently rely on indirect methods of detection (i.e. the body's immune system response), because it is very difficult to culture the bacteria directly from patients. Specific issues with regard to the testing controversy include the following:

• Sensitivity of the CDC's testing protocol.

Critics argue that the CDC's 2-tiered testing protocol (ELISA test, followed by confirmatory Western blot test if positive or equivocal) misses many patients who are infected. This criticism is not without merit. Several studies have examined this question and found that as many as 50 percent of definite Lyme Disease as defined by the presence of Borrelial DNA or Borrelial culture were negative when tested against the CDC's recommendations. Such studies have included both early and late stage Lyme Disease patients. A study from the College of American Pathologists concluded that "these tests will not be useful as screening tests until their sensitivity is improved."

• Inadequate lab standardization.

Standardization of testing has been found to be inadequate, with a high degree of interlaboratory variability.

• No diagnostic gold standard to determine sensitivity of tests in late disease.

Without a diagnostic gold standard to identify those with chronic Lyme disease, circular reasoning becomes a problem in studies that evaluate the sensitivity of serologic tests for this population. Bias is unavoidable if subjects are selected by CDC criteria, since late-stage patients must have tested positive previously in order to qualify for a study. In a study cited by the CDC to defend the tests' validity, the authors acknowledge this risk of selection bias.

References

False Negative Tests===

False negative test results due to the following, particularly in late and chronic Lyme disease:

• Immune system evasion by Borrelia burgdorferi.

Intracellular sequestration, antigen variation, immune suppression, the formation of immune complexes, and predominance of cystic forms have all been cited as reasons for seronegativity in late and chronic Lyme disease (see Lyme disease microbiology#Mechanisms of persistence).

• Positive test criteria is based on early Lyme disease.

The CDC's criteria for a positive Western blot were developed based upon on a study of patients with early Lyme disease. The serologic response of patients with late-stage Lyme disease was not analyzed and incorporated, despite that fact that such cases require a positive Western blot for diagnosis by CDC standards.

• Specific markers for late-stage Lyme disease left out.

Several highly specific antibody bands for Lyme (31-kDa and 34-kDa, corresponding to outer surface proteins A and B) were not included in the CDC criteria for a positive Western blot because they only appear late in the disease. These bands which have not been included on the CDC Western Blot are so specific to Borrelia Burgdorferri that they are being used/studied for the development of a Lyme Disease vaccine. As a result, the vast majority of laboratories do not report these bands, even if they are positive. This is one reason some clinicians use laboratories that specialize in tick-borne disease, as they usually report all antibody bands.

• Tests based on only one strain.

Current tests at most laboratories are based on only one strain of Borrelia burgdorferi (the B31 strain is used in the U.S.) despite the fact that there are over three hundred strains worldwide and over one hundred in North America (see Lyme disease microbiology). Several studies have found that this practice can lead to false-negatives - another reason some clinicians use tick-borne disease specialty labs, which utilize multiple strains of Borrelia burgdorferi in the preparation of test kits.

False Positive Tests===

Many physicians believe that Lyme disease is over-diagnosed and over-treated. One of the most widely cited studies from critics of Lyme Disease was written by Allan Steere. His study, published in JAMA concluded that 57% of patients diagnosed with Chronic Lyme in an endemic area did not actually have the disease.

References

comparison table

My opinion, the comparison table of ILADS vs IDSA is still misleading and has to get alot of work. I made some changes, please help! First it is not ILADS vs IDSA it is ILADS vs the rest of medicine. And it needs so many references for statements. Can we put a statement, it is not meant to say these are equal view, ILADS is a fringe group? RetroS1mone talk 03:58, 1 July 2008 (UTC)

• I say this article is a nearly unsalvagable POV fork, and should probably be deleted. Phlegm Rooster (talk) 05:35, 5 July 2008 (UTC)

I see no evidence to characterize ILADS as a "fringe" group when current and past presidents have been published in major medical journals. And given Attorney General Blumenthal's recent findings regarding the IDSA, it would seem especially inappropriate for Wikipedia to endorse one view over the other. Besides, User:RetroS1mone, I thought you had "no position" on Lyme disease? -Bapb (talk) 21:33, 6 July 2008 (UTC)

Not a soapbox, not a place for personal attacks. Please respect wikipedia and consensus. Thank you, RetroS1mone talk 21:39, 6 July 2008 (UTC)

Certainly not intended as a personal attack, just confused. You stated above under Talk:Lyme_disease_controversy#POV_tag that you had "no position," and here you call ILADS a fringe group, which sounded like a pretty clear position. Just thought you might like to clarify. I certainly agree that we should all respect WP:CIV. -Bapb (talk) 21:55, 6 July 2008 (UTC)

• Phlegm Rooster, agree, I will nominate for deletion. Everything here is on Lyme too except the POV table. RetroS1mone talk 21:43, 6 July 2008 (UTC)

Blumenthal

I added the actual findings from Blumenthal's investigation, because although this (now pro-IDSA POV) article implies that Blumenthal is mysteriously under the sway of a few physicians and advocates, he is in fact the Attorney General of the State of Connecticut. The findings of an investigation by his office is certainly relevant information. The IDSA press release remains as a response, and if someone would like to elaborate on the IDSA's response with more specifics (keeping in mind WP:NOR), go ahead. Bapb (talk) 21:22, 6 July 2008 (UTC)

I reverted bc the AG's opinions are opinions and allegations not findings. The legal system works this way, the AG makes allegations, files charges, there is a trial, a judge or a jury finds guilty or not. AG versus IDSA there was a settlement, no trial no findings, no admission of guilt. Innocent until proven guilty is for IDSA like everyone. May be the allegations are notable but it's not about IDSAs science anyway. RetroS1mone talk 21:33, 6 July 2008 (UTC)

The press release from the State of Connecticut (not an advocacy organization) says "Blumenthal's findings include the following." These are findings, not allegations. The IDSA will not have a chance to dispute them in court, because they decided to agree to a settlement instead. No admission of guilt, agreed. That's why both the findings and the IDSA's response are equally valid inclusions in order to keep this as NPOV as possible. Reverting back. -Bapb (talk) 21:39, 6 July 2008 (UTC)

Press release from the Attorney General/State of CT. Press release from IDSA. Each present their "side" of the story. Independent secondary source is then quoted to summarize. That's balance. Quoting the Attorney General's press release at length, and relegating the repsonse and independent coverage to a few lines, is not balanced and it's not particularly readable or informative either. Your other edits both added your editorial interpretations of the studies in question and also weasel words, again compromising the article's clarity and balance. MastCell ^Talk 22:53, 6 July 2008 (UTC)

First, I invited others to enhance the IDSA response section. There is no need to remove the Attorney General's stated findings, if you are able please go ahead and add content to support the IDSA's response. Quote from their press release if you like, I don't have a copy handy. I have no agenda, and merely quoted from the website of the State of Connecticut <http://www.ct.gov/AG/cwp/view.asp?a=2795&q=414284>. I believe this government website is a legitimate source of information for the Attorney General's findings, do you not agree?

Second, I did not add any editorial interpretations of the studies in question whatsoever, and this accusation of weasel words is frankly uncivil. The facts I added come directly from the published articles themselves, as I detailed at Talk:Lyme_disease#Intro.

I will now quote directly from the Krupp et al. study:

"However, although the patients with Lyme disease showed cognitive slowing compared to healthy controls, these deficits were relatively mild, which may have contributed to the lack of treatment effect on cognition." (Krupp et al., p. 1929)

And here's what you deleted (which I wrote), calling it editorializing and weasel words: "The authors note that cognitive deficits were only mild at baseline, which may explain the lack of treatment effect."

Clearly this was a fair summary. Meanwhile I made no attempt to delete the authors' suggestion that the improvement was due to a placebo effect, so I think it's pretty clear I'm staying NPOV here.

I am growing concerned that you either have an agenda, or are not familiar enough with these research studies to be deciding what is and isn't legitimate content. The abstracts alone do not make one an expert.-Bapb (talk) 04:16, 7 July 2008 (UTC)

The nice thing about an Akashic system like Wikipedia is that it's quite easy to figure out who has an agenda. Our respective contribution histories speak for themselves. Here on Wikipedia, I claim no expertise in anything. I find people who rely on claims of real-life expertise aren't particularly well-suited to this environment, so we can get that out of the way.

The Attorney General's website is a reasonable source, and should be included. My problem was in the manner in which the controversy is summarized, which was (in your edit) unbalanced. The AG's findings can be summarized briefly and readably, as can the IDSA's response. Your approach - inserting a laundry list of claims from the AG and then throwing down the gauntlet for someone else to insert a laundry list of counterclaims from the IDSA - is unlikely to produce a readable, informative article, in my opinion.

As to abstracts and expertise, I'll just say that if your arguments here rely on mining the paper for phrases which can be used to undermine the conclusions of the abstract, you're doing something wrong. Abstracts represent the authors' distillation of their most important points, and for Wikipedia's purposes we should respect that rather than search the text of the paper for more congenial phrases. MastCell ^Talk 06:41, 7 July 2008 (UTC)

There were specific findings from the AG's office that are of interest to anyone who would be seeking information on this controversy. I do understand your problem with balance, I just don't agree that all content should be deleted before balance is achieved. I suppose now it's my job to go research the IDSA's position and elaborate on it, so that both sides can be represented and we can have a truly informative article.

I absolutely disagree that these are "laundry lists", and think specific issues such as potential conflicts of interest and panel members being excluded or not excluded, depending on whom you believe, are central to this article regarding the controversy. After all these are the actual reasons that some don't trust the IDSA, while others think the IDSA is being unfairly persecuted. Glossing over these issues would be a very serious omission imo.

I do take offense to the "mining the paper" charge, as if I'm looking for phrases to distort the findings. Nothing could be further from the truth. Patient selection criteria is central to the treatment effect one looks for. This is a well-known issue with the Krupp study that has been publicly discussed by Fallon and other experts in the field.

Ironically, I dug up the quote only to refute your earlier erroneous accusation that I was editorializing! And now you're accusing me of searching too hard for quotes? This is absurd. Please refrain from baseless accusations in the future and assume good faith WP:AGF. -Bapb (talk) 07:42, 7 July 2008 (UTC)

I think we agree that the AG's findings are of interest; that's why I think they should be summarized here with a footnoted citation to the AG's press release where they can be read in their entirety. Perhaps we can some up with some text that concisely summarizes the AG's claims against the IDSA. The article will actually be more informative with a concise, readable description of the issue supplemented by a foontoted link to the entire press release. It will be less informative with a huge chunk of text lifted from the report and pasted here.

I am not "accusing" you of anything. I'm saying that we need to accurately reflect the study authors' conclusions, not the specific sub-findings which you choose to take away from the study. I do my best to assume good faith in the absence of evidence to the contrary, as the policy asks, and I've been presented with plenty of evidence to the contrary in the last couple of weeks on these pages. MastCell ^Talk 22:48, 7 July 2008 (UTC)

New article comments

1. I feel the title may be somewhat misleading or sensationalist, and having a "quote" in the title begs the question of whom is being quoted. Although "Lyme wars" of course comes up in searches and is used in print, a more accurate, honest, encyclopedic primary title might be "Lyme disease controversy" or "Chronic Lyme disease controversy", with "Lyme Wars" being a redirect and mentioned in the lead as a popular epithet for the controversy.
2. This article should not neglect the content in Lyme_disease#Chronic_Lyme_disease, and in fact, should significantly expand upon it if it is to warrant separate article status.
3. The citations are currently a confusing and incomplete assortment of citation styles, and should be completed and standardized right away to ensure that the claims are verifiable and reliable. Although there are some articles mentioned in text, I don't want to add them as citations because I'm not the one who read the sources or wrote the text.

--Animalparty-- (talk) 20:24, 3 February 2014 (UTC)

I agree with all of your points on the title.

This article is based on research in (my sandbox). I am not comfortable writing a Wikipedia article from scratch because I do not have a feel for it, and

User:The_Sceptical_Chymist has agreed to be the primary editor. But I am also participating in cleanup and any more research that is necessary. I will clean the citations immediately. Any help is appreciated. Bob the goodwin (talk) 21:57, 3 February 2014 (UTC)

1. Regarding expanding on the Lyme article, there is a question about how much of the medical side of the controversy should be exposed. There are those who push back on writing about minority medical opinions, even in the context of a controversy. The article could still be valuable without medical details, although would be better with the details.Bob the goodwin (talk) 22:03, 3 February 2014 (UTC)

Carriearchdale

I am volunteering to be the tertiary editor here if BobtheGoodwin thinks that is okay. I understand the SkepticalChymst guy/gal (not sure on that) is going to the the primary role.

I did find and put in already the reference for the senate hearings of the 103rd Congress that occurred in... I think maybe 9,3 that Senator Ted Kennedy chaired. I also after finding the file of the actual GPO printed congressional record of the hearing at archive.org have taken the time to upload the file to the commons and they have accepted it. I still need to send up the file or image of the front page to be used as the thumb image. I think that it is supposed to appear down in the references near the cite. I am not sure. If we don't like the image on the page we can always take it out later. I hope everyone is having a fabulous sochi kind of weekend!!!

ciao! Carriearchdale (talk) 20:12, 9 February 2014 (UTC)

The history of the misunderstanding

The section of the history of the misunderstanding was split into another section Several responses[3][4][5] pointed out to several shortcomings in Steere article. for clarity. Thanks User:Carriearchdale for the good edits and mindshare.

I was hoping that there could be a way to keep this under one section, and also try to keep a balance between the two points of view, especially in the early parts of the article (There could be later sections which drill deeper into either side.)

Without thinking too hard about the sources, we should assume that both sides have strong and legitimate perspectives, such as:

• The mainstream believes that there is an overuse of a diagnosis, and clinicians are doing harm through overtreatment.
• The minority believes that that mainstream is abusing their power to dismiss a diagnosis that cam help patients.

In the medical parts of Wikipedia, the mainstream must be given a prominent voice. So at minimum the mainstream should be given a balanced voice in the summary parts of this article.

When we add the medical parts of this story, we will need to use the MEDRS Wikipedia voice, which is to be sure to keep the mainstream view primary, even while contrasting it to the minority view. Bob the goodwin (talk) 21:38, 9 February 2014 (UTC)

Removed template which proposed deletion

This is a history of science article which seems to be backed by sources. A lot of content is here. This entire controversy does not merit more than a single mention in Lyme disease, but it seems to be standing alone as an independent article. There is hardly any medical content here and instead there is a story of a dispute between two organizations and moderation of this by government. The New York Times story gives a great summary and this is backed by other sources. If there is to be talk of deleting this then there should be discussion. Congratulations and thanks to the people who started this article. Blue Rasberry (talk) 15:52, 10 February 2014 (UTC)

Once the uncited and poorly-sourced material is removed, is there really more than can be handled as a section in the main LD article? I suppose though, that that article is already quite long ... Alexbrn ^{talk|contribs|COI} 16:36, 10 February 2014 (UTC)

I think that you could write a long article on it. It would be interesting to see whether there are any books on the subject that were published by mainstream presses, rather than self-publishing outfits (or by publishers that are so new and so tiny that they might as well be self-published). WhatamIdoing (talk) 18:13, 10 February 2014 (UTC)

History for content above

The history is found here. -- Brangifer (talk) 05:38, 16 February 2014 (UTC)

Orphaned references in Lyme disease controversy

Fixed
The following discussion has been closed. Please do not modify it.
I check pages listed in Category:Pages with incorrect ref formatting to try to fix reference errors. One of the things I do is look for content for orphaned references in wikilinked articles. I have found content for some of Lyme disease controversy's orphans, the problem is that I found more than one version. I can't determine which (if any) is correct for this article, so I am asking for a sentient editor to look it over and copy the correct ref content into this article. Reference named "cid-danger": From Lyme disease: Klein JO (November 2008). "Danger ahead: politics intrude in Infectious Diseases Society of America guideline for Lyme disease". Clin. Infect. Dis. 47 (9): 1197–99. doi:10.1086/592247. PMID 18821849. From Infectious Diseases Society of America: Klein JO (November 2008). "Danger ahead: politics intrude in Infectious Diseases Society of America guideline for Lyme disease". Clin. Infect. Dis. 47 (9): 1197–9. doi:10.1086/592247. PMID 18821849. Reference named "Stricker 2007": From Lyme disease: Stricker RB (July 2007). "Counterpoint: long-term antibiotic therapy improves persistent symptoms associated with Lyme disease". Clinical Infectious Diseases. 45 (2): 149–57. doi:10.1086/518853. PMID 17578772. From International Lyme And Associated Diseases Society: Stricker RB (July 2007). "Counterpoint: long-term antibiotic therapy improves persistent symptoms associated with Lyme disease". Clinical Infectious Diseases. 45 (2): 149–57. doi:10.1086/518853. PMID 17578772. Reference named "idsa guideline": From Lyme disease: Wormser GP; Dattwyler RJ; Shapiro ED; et al. (November 2006). "The clinical assessment, treatment, and prevention of lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America" (PDF). Clin. Infect. Dis. 43 (9): 1089–1134. doi:10.1086/508667. PMID 17029130. From Infectious Diseases Society of America: Wormser GP, Dattwyler RJ, Shapiro ED; et al. (November 2006). "The clinical assessment, treatment, and prevention of lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America". Clin. Infect. Dis. 43 (9): 1089–134. doi:10.1086/508667. PMID 17029130. {{cite journal}}: Explicit use of et al. in: |author= (help)CS1 maint: multiple names: authors list (link) I apologize if any of the above are effectively identical; I am just a simple computer program, so I can't determine whether minor differences are significant or not. AnomieBOT⚡ 06:45, 16 February 2014 (UTC) Thank you bot. You're doing a good job, but I think I've just finished fixing all the redlinks. -- Brangifer (talk) 07:07, 16 February 2014 (UTC)

Role of a fork article

Meta articles for various potentially controversial medical subjects often have fork articles dealing with their associated controversies. Here are some examples:

• Vaccine - Vaccine controversies
• Thiomersal - Thiomersal controversy
• Fluoride - Water fluoridation controversy
• Amalgam (dentistry) - Dental amalgam controversy

Those controversy articles are then placed in Category:Medical controversies.

In this case, we don't have such an article, but deal with it all in this section of the Lyme disease meta article:

• Lyme disease#Chronic Lyme disease

Since the controversy deserves more space than we can justifiably use in the main article, I think this is a good time to simply create such a fork article. It would be created by merging the content at the above section with the content here. Then we empty replace the content in that section with a "main" link to the fork and a summary of the fork article, using just the lede. That way the meta article would present the mainstream POV, while recognizing that a controversy exists. This is pretty standard practice and totally within the proper use of WP:CONTENTFORKING.

The title could be Chronic Lyme disease, but I would strongly advise against that title because that would give the deceptive term undue weight, in essence using Wikipedia's voice to advertise quackery.

I suggest we simply call it Lyme disease controversy (currently a redirect), following the naming and content style we use for such articles. Then we point the current redirect at Chronic Lyme disease to the new fork article.

What think ye? -- Brangifer (talk) 03:11, 11 February 2014 (UTC)

You echo my comments at the top of the page, and you have better justification. I support the primary title change to Lyme disease controversy. I don't think the controversy info at Lyme disease#Chronic Lyme disease should be totally emptied, as it does have relevance to the primary issue (Lyme disease), but it should be succinctly and fairly summarized along with a redirect, as is done in similar articles. --Animalparty-- (talk) 03:45, 11 February 2014 (UTC)

I have tweaked my wording above to avoid misunderstandings. The section wouldn't be empty, but would be replaced. I'm going to turn this into a survey, so you may wish to !vote. -- Brangifer (talk) 05:05, 11 February 2014 (UTC)

I did the research that initiated this page [2], but as a newcomer I get bitten every-time I touch things, so have relied on more experienced editors to craft the article from the research. I would prefer a page about the controversy over a page about the war (personally), but there is an unstated ramification, and the rush to do a survey may stem from a desire to change the article and not just the title. This could be a good idea, except that if the article is about a the controversy, then the article will need to also be about Lyme disease (the controversies in specific science and medicine). If it is about Lyme disease it will need to be MEDRS. MEDRS pages are very different than non-MEDRS pages, and rightly so. MEDRS pages are often referenced as reliably restating establishment medical opinion. The very act of telling a story about a controversy might seem to be elevating the minority medical opinion. It is very likely that if this page were constructed as MEDRS that it would be harder to reflect the mountain of excellent sources on the war while simultaneously avoiding coat-hanging. Although the two sides disagree violently on the science, they both agree that the war has been very costly to the science. I have spent some time on other controversial subjects (for example circumcision), I think it is obvious that MEDRS positions (rightly) dominate articles that even partially represent medical science. Unlike other medical controversies (and I have studied them in depth to make sure I understand the parallels), there are some very notable people in the minority camp (An ivy-league medical professor, and the scientist who discovered the Lyme bacteria). I found not a single notable luminary in the vaccine controversy, or in chiropractic (during the controversial days) or in homeopathy. I read articles in the medical journals on each of these subjects, and they are rubbish. The vaccine controversy had consequences, but they were entirely bad consequences stemming from fraud. The controversy with Lyme is scientifically simple, but historically nuanced, but has well documented consequences.Bob the goodwin (talk) 04:45, 13 February 2014 (UTC)

The name "chronic Lyme disease" is not the mainstream name for the disease, but rather a term used by the minority belligerents. The term has meaning in the context of the war, but does not have meaning in the context of Establishment medical opinion. It seems that both sides have settled on the term post-treatment-Lyme-disease in research papers. Bob the goodwin (talk) 04:45, 13 February 2014 (UTC)

I don't think you need to worry too much. The controversy includes the Lyme wars you're referring to, so this content will find its place there. The main article about Lyme disease will remain, while this will only discuss the controversy. MEDRS content will be minimal, but it will exist, and that's okay. It won't be a problem. -- Brangifer (talk) 08:33, 13 February 2014 (UTC)

Survey on title change

Yes or No to suggested title change: Lyme disease controversy. -- Brangifer (talk) 05:05, 11 February 2014 (UTC)

• Yes to title change per my reasoning above. -- Brangifer (talk) 05:05, 11 February 2014 (UTC)
• Support I see no problem with this reasoning. The title seems reasonable and I agree with the decision not to name the fork Chronic Lyme disease. Zell Faze (talk) 15:17, 11 February 2014 (UTC)
• Yes. A title change to a more accurate descriptor is preferable.--Animalparty-- (talk) 16:25, 11 February 2014 (UTC)
• Yes. Much better title. Alexbrn ^{talk|contribs|COI} 16:28, 11 February 2014 (UTC)
• No. I oppose the proposition, as it would shift the article to MEDRS which is not the subject of the article. Bob the goodwin (talk) 04:45, 13 February 2014 (UTC)

• Howso? articles are not either "MEDRS" or "non-MEDRS"; biomedical content everywhere in any article is covered by the MEDRS guidance. A title change will not affect that. Alexbrn ^{talk|contribs|COI} 09:04, 13 February 2014 (UTC)

• Alexbrn is correct. It is the content, not the article, which determines when MEDRS comes into play. It will likely not come into play as much in the controversy article as the main article, and that shouldn't be a cause for concern. What will come into play a whole lot will be WP:FRINGE and parity of sources. We need the title change because this current title and content will not survive an AfD. It is only notable because it's a part of the larger topic of the controversy, so it belongs there. -- Brangifer (talk) 15:32, 13 February 2014 (UTC)
• I was given a different impression of MEDRS, let me have discussions with other MEDRS editors I have worked with to understand how medical history is reported. I also need to research AfD precedents. We should also give User:Carriearchdale an opportunity to progress. This is an incredibly hot topic, and the internet is full of bad information, so I appreciate the intention of everyone to get this right. Having an active community is inspirational. There is a mountain of sources, we just need a consensus on how to find a neutral voice involving a war that has setback medical science without seeming to promote a minority medical position. Bob the goodwin (talk) 07:31, 14 February 2014 (UTC)

• Change to controversy The precedent in other articles, including Vaccine controversies, Thiomersal controversy, Water fluoridation controversy, and Dental amalgam controversy, is to use a name like this. No medical claims are being made and there is no shift to MEDRS scrutiny. Blue Rasberry (talk) 11:49, 13 February 2014 (UTC)

• Thanks Blue, the argument for precedent makes a lot of sense to me. All the examples you gave are primarily medical, and the amalgam article asked for more medical references at the top. I will try to do an inventory of notable controversies that involve internal dissent within respectable MDs. For example the ulcer controversy, or maybe the refrigerator mothers controversy. I will put effort into this. Bob the goodwin (talk) 07:31, 14 February 2014 (UTC)

Yes change the name as per User:Bluerasberry's comments in the section above. Jytdog (talk) 19:09, 15 February 2014 (UTC)

• Change to controversy, per the precedents in other articles. I am very wary of this being set up as a POV fork of the Lyme disease article, or a coatrack for fringe ideas. We need to have a very strict criteria of what the article is supposed to be about, and cognizant that in controversial articles, we should only be using the best sources. Using primary studies and letters to the editor, as is being done now, is a fast track to OR and a skewed article. We should be using high quality sources (medical articles, sources from high quality journalism, books published by academic publishers, etc), not trying to cobble together primary sources. I propose we scrap the material we have now, and move the content in the Chronic Lyme disease section in the Lyme article, leaving a Main Article link and a brief summary. That material can be a foundation with which to build the new article (and is typically what we do when we fork an article anyways, I assume). Yobol (talk) 02:58, 16 February 2014 (UTC)

• That is exactly the way to proceed. We use the existing content from that section and then properly merge relevant parts of this content into it in a manner that abides with relevant policies. -- Brangifer (talk) 04:17, 16 February 2014 (UTC)

• It appears the article move happened quicker than I anticipated, so moving talk page content there where we can carry on, since this is obviously a WP:SNOW for the move. -- Brangifer (talk) 05:35, 16 February 2014 (UTC)

I sincerely apologize for any confusion caused by the way this move occurred. It didn't happen in the normal manner, so I had to do some quick fixes which hopefully will work. The one who deleted the redirect page in preparation for the move actually did the move. That wasn't supposed to happen, but we can still get this to work. I have moved the content from the controversy section in the Lyme disease article and made it the main content in this article. I also moved the Lyme "wars" content to below so it can be looked at and merged properly. -- Brangifer (talk) 05:51, 16 February 2014 (UTC)

Since this survey has revealed a clear snowball consensus for the move, it has been done. It didn't happen as smoothly as planned, so I had to do a lot of extra work, but it should work now.

The moves have been made and redlinks fixed, so the next job is to polish the article. Some good copy editing and formatting would be appreciated. I have also tried to fix any links in other articles which should redirect to this article. The old section in the main article still exists, and it gets mentioned in the lede there. When we think this article is pretty good, then any relevant content and sources from the Lyme "wars" content (section below) needs to be included/merged in a proper manner. -- Brangifer (talk) 08:08, 16 February 2014 (UTC)

I was disappointed in how the move was made. I thought we had agreed to a rename, and not the wholesale change of the content. I am not sure that it is a snow ball consensus when the question and outcome are so different. I think we should revert the change until a consensus is achieved in how to structure the changes. The current article that is showing is one that had been deleted a long time ago. And this seems like an outcome far outside the consensus. Probably this is accidental, but it is hurtful if it was misleading. Bob the goodwin (talk) 22:16, 16 February 2014 (UTC)

This is not the content from a deleted article. I can assure you that there was no intention to mislead you. At worst this is a misunderstanding. I thought the idea was laid out clear enough in the comments which preceded the survey, but we apparently had different expectations. I'm sorry about that.

I too was a bit uncomfortable with the way it ended up happening, because the move was made by someone else, without them being asked to do it. I then had to quickly scramble to fix things because we can't have an article which risks deletion laying out there in article space. The new article we had (Lyme "wars") was totally unsatisfactory, should never have been created, and wouldn't have survived an AfD. It just pointed to the need for a quality fork article based on the content in the section of the main article, but with room for expansion. The subject deserved more space and coverage than it could get there without being a weight violation. That's why I started the survey.

If you'll read through the various comments before and during the survey, I think you'll pick up on many clues which point in the direction of what happened. Since you had other expectations, you probably missed them. The content which was in the old article is now in a separate section on this talk page where it can be worked on and prepared for inclusion/merging into the new article. I am sorry about any misunderstanding. I think you should look forward and seek for a good way to include that content. -- Brangifer (talk) 22:55, 16 February 2014 (UTC)

I agree that we all have the same goal. I agree that there was a misunderstanding. I don't think we can know what each other expected. I will ask you directly though. Did you do a rename this as a way to fix your assertion about AfD? Did you think there was a consensus on AfD? Was I given a chance to participate in a discussion about AfD? Do you think it is unreasonable for me to be uncomfortable that an article I was trying to help create now starts with the MEDRS fringe term "Chronic Lyme" disease, and all of the well sourced content that I built consensus around with others is completely gone? I apologize if I appeared to be canvassing, but I was asking people how this could have possibly happened. If I am the stupid newbie, I want people to explain it to me. I am trying really hard to help build an encyclopedia, and really do not understand. I think it would be good faith to restore this to the point before the misunderstanding, so that there can be a consensus going forward that we can all work within. Bob the goodwin (talk) 01:55, 17 February 2014 (UTC)

I think you should read my response here. It should help you understand a few things. -- Brangifer (talk) 02:49, 17 February 2014 (UTC)

Research on medical controversies

I am learning from Jytdog, so I will move toward the consensus. Do people have thoughts on the following examples?Bob the goodwin (talk) 01:23, 16 February 2014 (UTC)

• Vaccine controversies

• This appears to be primarily a fraud within science, and uninformed activism outside science. The article seems balanced.Bob the goodwin (talk) 01:23, 16 February 2014 (UTC)

• Thiomersal controversy

• Same as subject and actors as vaccine controversies.Bob the goodwin (talk) 01:23, 16 February 2014 (UTC)

• Water fluoridation controversy

• Uninformed activism outside science. The article seems balanced.Bob the goodwin (talk) 01:23, 16 February 2014 (UTC)

• Dental amalgam controversy

• This article is perfect. Is there a medical consensus that amalgam is safe, and a significant minority opinion that it is not? Or is there currently no consensus?Bob the goodwin (talk) 01:23, 16 February 2014 (UTC)

• Refrigerator mother theory

• This looks like a history of a past controversy. The consensus has changed, and the article reflects the past and current consensus.Bob the goodwin (talk) 01:23, 16 February 2014 (UTC)

• Chiropractic controversy and criticism

• Although I agree with the article, I don't think it is neutral. This is a non-medical fringe group that won some lawsuits, and now does some good science and good medicine. I would NEVER be involved with this group, but that does not mean the article is good. There are those who compare Lyme with Chiropractic. I have not been able to find the similarities. Bob the goodwin (talk) 01:23, 16 February 2014 (UTC)

• Homeopathy I got a personal letter from the head of infectious diseases at Johns Hopkins comparing chronic lyme treatment to Homeopathy. I failed to grasp the connection.

• Both Lyme and Homeopathy have a lot of research that is not accepted by establishment medicine (and so do the anti ADHD groups). Homeopathy does not believe that ATOMs exist. Lyme studies are discounted because they have not proven a negative: that bacteria can survive antibiotic treatment.Bob the goodwin (talk) 01:23, 16 February 2014 (UTC)

• Barry Marshall Peptic Ulcer controversy

• This is an historical controversy that has been white washed (there was ad-hominem attacks and science by press conference and financial conflicts at the time), but the current consensus is accurately reflected, and virtually no controversy still exists.
• This article also looks to be a large coat-hanger for anti establishment perspective.

• The only establishment position is a half sentence in the opening paragraph: according to the National Institute of Mental Health, "under medical supervision, stimulant medications are considered safe".[4]
• The consensus is declared first in a negatively title section Attention deficit hyperactivity disorder controversies#Skepticism about the diagnosis
• Is ADHD denial and activism considered a significant minority opinion?Bob the goodwin (talk) 01:23, 16 February 2014 (UTC)

• This article (Please share thoughts on this. We need a consensus.)Bob the goodwin (talk) 01:23, 16 February 2014 (UTC)

• I see similarity with the Vaccine controversy

• Primarily around the uninform activism. The vaccine activism was more dangerous, but the Lyme activism is in a category of its own.Bob the goodwin (talk) 01:23, 16 February 2014 (UTC)

• I see similarity with Amalgam and ADHD

• There is a lot of MEDRS on both sides of the debate, and the results conflict.Bob the goodwin (talk) 01:23, 16 February 2014 (UTC)

• I see similarity with Amalgam and Refrigerator Mother

• The patients/families claim stigmatizationBob the goodwin (talk) 01:23, 16 February 2014 (UTC)

• I see similarity with Homeopathy

• Opposing research faced Ad-hominem attack.Bob the goodwin (talk) 01:23, 16 February 2014 (UTC)

• I see similarity with ADHD

• There are a significant number of researchers and clinicians in opposition to the consensus.Bob the goodwin (talk) 01:23, 16 February 2014 (UTC)

• I see similarity with Chiropractic and ADHD

• Use of law to limit (or reinforce) physician freedomBob the goodwin (talk) 01:23, 16 February 2014 (UTC)

Recommendation on terminology: Post Treatment Lyme Disease Syndrome

Post Treatment Lyme Disease appears to be the consensus terminology for the uncontroversial fact that people remain sick after antibiotic treatment for Lyme disease. The use of Chronic Lyme disease and Post Lyme disease syndrome appear to exist primarily in the context of the controversy. Although European research still seems to use the term Chronic Lyme disease. The term Chronic Lyme disease was actually coined by Dr. Steele. When talking about the disease we should use the consensus terminology. When talking about the controversy the other terms may have application.

What is controversial is not the words or even the organizations. What is controversial is the diagnostic criteria and the treatment. What is also controversial are the political, professional and personal actions. To keep the MEDRS clean, we should be careful to differentiate the controversy from the medicine, and the use of the consensus terminology in an important step.

Do I need to provide evidence of the consensus terminology, or do the participating editors already see this in the literature?Bob the goodwin (talk) 08:07, 17 February 2014 (UTC)

It would be super helpful to bring at least one ref for that being consensus terminology, yes! (and always, with regard to content suggestions) Jytdog (talk) 12:09, 17 February 2014 (UTC)

Here are four three reviews using the term PTLDS (I did forget the 'S' part earlier, sorry). I don't like MEDRS, as I don't know which journals are considered high quality, and which journals are controlled by the majority. I will just stay out of MEDRS because there are so many experts here already, but will always take advice.

• recent PTLDS review #1
• recent PTLDS review #2
• recent PTLDS review #3

For the sake of completeness, I also searched for chronic lyme in review titles and post lyme in review titles (formerly the terms used in conflicting research). So there are other choices that MEDRS editors can choose when potential patients are seeking information from Wikipedia.

• European review still uses 'chronic lyme'
• some are still using post lyme disease
• older review using 'chronic lyme'
• Steere using "treatment resistant" Lyme arthritis
• "Lyme disease in patients with persistent symptoms"

Do any of the editors think that it is controversial that some people remain ill after treatment of Lyme disease, and that there should be consensus terminology to separate the disease from the controversy? Bob the goodwin (talk) 03:50, 18 February 2014 (UTC)

I don't think it's controversial at all. There are clearly people who continue to suffer. Some of them have actually had CLD, while others have never had it, but have been misdiagnosed, often by alternative, quack, doctors. I think what's controversial is the claim that "patients with persistent symptoms" still have Lyme disease, rather than problems and syndromes created by their encounter with the illness. Until there is evidence that such patients still have B. burgdorferi in them, then we're talking about something else. "Chronic Lyme disease" (CLD) is the controversial term. "Post Treatment Lyme Disease Syndrome" seems to refer to the same conditions, without the false claim. I could be wrong, but I think that's the difference.

As such, "Post Treatment Lyme Disease Syndrome" should be part of the main Lyme disease article, while this one should only deal with "Chronic Lyme disease", because the claims associated with it are what's controversial. We seem to be dealing with one syndrome with two different explanations, one (CLD) of which is false (until evidence says otherwise).

I haven't checked out the references yet, but it wouldn't surprise me if some of those who believe in CLD are trying to sneak CLD in under the radar by using PTLDS terminology. This assumes that PTLDS, in the most reliable sources, always refers to the syndrome, without any lingering B. burgdorferi in the sufferers. If my suspicion is correct, we might find sources which describe CLD as PTLDS. We need to be on the watch for this possibility and parse the sources very carefully. -- Brangifer (talk) 08:38, 18 February 2014 (UTC):

Hey bull, when you write "Some of them have actually had CLD," I think you meant to say "Some of them have actually had LD," (no "C"), right? And I mostly agree with what you write... although when you write "what's controversial is the claim that "patients with persistent symptoms" still have Lyme disease, rather than problems and syndromes created by their encounter with the illness. Until there is evidence that such patients still have B. burgdorferi in them, then we're talking about something else." I would say " think what's controversial is the claim that "patients with persistent symptoms" are being harmed by active B. burgdorferi that antibiotics can kill, and thus they should be treated with long-term antibiotics." It is the linking of the diagnostic assumption to the treatment, that is controversial. Mainstream medicine acknowledges that it doesn't know what is happening biologically in the up-to-20% of patients classically diagnosed with Lyme and are treated with short-term antibiotics, who go on to have all sorts of problems. Nor does it know what is wrong with other patients who suffer similar symptoms (e.g. chronic fatigue, fibromyalgia) Mainstream medicine's answer is that we don't know what's wrong but we find no active B. burgdorferi so a) more antibiotics make no sense and b) long-term antibiotics are too dangerous and not efficacious to recommend on an empirical basis (we tested it and it works, but we don't know why) alone. But neither "side" actually knows what is wrong; the mainstream acknowledges that it doesn't know, and ILADS acts on their hypothesis of what is wrong - a hypothesis that the rigorous ones among them acknowledge is not proven. This is the scientific uncertainty that is the foundation for the dispute and that both this article and the main one should make clear... Jytdog (talk) 13:21, 18 February 2014 (UTC)

Good catch! You're right, and I have stricken the errant C. The rest of what you write is very well put. I think that's a better way to put it. -- Brangifer (talk) 15:13, 18 February 2014 (UTC)

I agree entirely with what both of you are saying. I do not know if PTLDS is a term masquerading as chronic Lyme, but common sense tells me it is not. But MEDRS tells us to be careful on this sort of issue. I do hope there is a term that separates the controversy from the medical recommendation. There have been a lot of attempts by insiders to find such a term, but obviously not everyone in the literature wants to keep the controversy separate from the science. I am open to any term that is meaningfully non-controversial while simultaneously respecting the medical literature. PTLDS was my best recommendation. Back-up options include "Post-lyme" syndrome, late-Lyme, "treatment resistant", or persistent symptoms. Each of the alternatives options suffers from either being controversial or vague. My goal is to be bold and neutral enough to hold the attention of people who might otherwise run off to quack sites.

I also agree with Bull (and I am a living example) that there are people with PTLDS (who can be diagnosed/undiagnosed/misdiagnosed even within mainstream medicine) without objective evidence of PTLDS, so we should be careful in balancing the RS with the MEDRS.

At the risk of stretching too far (but you guys are awesome at catching bullshit), the CDC reports that only 1 in 10 Lyme cases are reported to them, which means that the we don't know how to classify a lot of cases. How can something be PTLDS without treatment? I do not think this has been addressed in the medical literature at all, so I don't think we have any avenue to address this except PTLDS. In my mind I tend to use the PTLDS model for these patients as well, because it is likely that most have been exposed to antibiotics at some point, we just don't know if the 20% number (people with ongoing symptoms) is higher or the same for people who get 'silent' treatment or 'no' treatment. In other words, there is likely to be an unidentifiable cohort of treatment resistant patients who we need to provide with reliable information without seeming to imply their disease does not exist.

I will also make one other stretch. There are quack doctors. There are quack websites. But there are also clinicians working well within the law and science who are making clinical judgments in this field and many others. Wikipedia does not have a role in sorting this out. I just want to keep the words 'quack', 'controversial', 'mainstream' in 3 categories in talk page discussions. I will be able to contribute massive amounts of good RS on the 'quack' part, but I want to be disciplined in keeping them separate. And again, we do not want to alienate readers who come to Wikipedia straight from a discussion with their trusted clinician and we then give them the impression that clinical judgments are in some way wrong. Yet, we should go out of our way to say that clinical judgments in this field can be controversial. Bob the goodwin (talk) 22:12, 18 February 2014 (UTC)

Also to echo another thing that Jytdog said (I can find the reference if you want), Wormser was quoted as saying "So what?" to the question of the survival of bB, and went on to imply that no one has proven that it responds to antimicrobial therapy. This is the first time I found myself agreeing with Wormser. He is starting to recognize the possibility that bB can survive, and has stated the controversy will continue in either case. I believe the controversy should continue, because PTLDS is difficult to treat with our limited scientific understanding, regardless of survivability. The 'chronic' issue was likely a straw man, which is part of my complaint against the mainstream behavior. But I agree with their conservative impulses regarding the difficulty, costs, and side-effects of the current treatment options.Bob the goodwin (talk) 22:31, 18 February 2014 (UTC)

Game Over

COPIED OVER FROM Lyme Disease Talk page after today's mass edits were made.

Lyme Disease has been passed on in humans, despite antibiotic treatment.

Test for persistent Lyme infection using live ticks shown safe in clinical study Published today, and "Findings appear online in Clinical Infectious Diseases." http://www.sciencedaily.com/releases/2014/02/140212132901.htm

".... Xenodiagnosis was positive for B. burgdorferi DNA in the person with erythema migrans who underwent xenodiagnosis early during therapy and in a volunteer with PTLDS. ...." (Not to mention the two "indeterminate" cases.)

The original study (which is still open) is Searching for Persistence of Infection in Lyme Disease at http://clinicaltrials.gov/ct2/show/NCT01143558

Also today U.S. launches new global initiative to prevent infectious disease threats at http://www.washingtonpost.com/national/health-science/us-launches-new-global-initiative-to-prevent-infectious-disease-threats/2014/02/12/afd9863c-936d-11e3-b46a-5a3d0d2130da_story.html -- they couldn't possibly be related.

23:43, 13 February 2014 (UTC) — Preceding unsigned comment added by 68.81.196.253 (talk)

In this context, what do you mean by "game over"? What are you trying to say by posting these links? BTW, if you want these sources used in the article, check whether they are WP:MEDRS compliant. Then try out your proposed wording here and we can see whether it will work as good content. -- Brangifer (talk) 17:53, 16 February 2014 (UTC)

What is now proven is that Chronic Lyme Disease really will exist in humans despite antibiotic treatment (not to mention many earlier studies showing that it persisted in several other species). The IDSA got it completely wrong. The outcome is now inevitable, and when NIH publishes its paper there will have to be radical changes to the Lyme Disease article -- changes which have been vociferously fought here for years now. And those of us with suffering family can start to hope that the cure might not be as aggressively blocked as the admission was. 18:02, 16 February 2014 (UTC) — Preceding unsigned comment added by 68.81.196.253 (talk)

Understood. As far as Wikipedia goes, we will have to wait for that confirmation. This is very preliminary stuff. If and when that happens, our articles will be updated, but not before then. Keep in mind that Wikipedia policies for acceptance of sources and evidence are stricter even those used by the FDA for pharmaceutical products. In fact, if the FDA used our standards, we would have far fewer pharmaceutical drugs being approved, with fewer recalls and side effects. -- Brangifer (talk) 21:05, 16 February 2014 (UTC)

After reading those sources, I don't see anything which justifies your statement that it "is now proven is that Chronic Lyme Disease really will exist in humans despite antibiotic treatment ". Nothing is proven yet. -- Brangifer (talk) 21:58, 16 February 2014 (UTC)

ditto what bullrangifer said. Also, User:68.81.196.253 let me quote you something from MEDRS from the section called "respect secondary sources": "Scientific findings are often touted in the popular press as soon as the original, primary research report is released, and before the scientific community has had an opportunity to analyze the new results. For a short time afterwards, the findings will be so new that they will not be reflected in any review articles or other secondary sources. If the findings involve phase I or phase II clinical trials, small studies, studies that did not directly measure clinically important results, laboratory work with animal models, or isolated cells or tissue, then these findings are probably only indirectly relevant to understanding human health; in these cases, they should be entirely omitted" There you go. The NIH study was really small and preliminary with regard to if it relates to post-Lyme syndrome: they themselves note both in the press release and the article: "The researchers note that a limitation of the study is the relatively small number of people on which xenodiagnosis was attempted. “Future studies are necessary to determine the incidence of positive xenodiagnostic results for B. burgdorferi after antibiotic treatment, if these results represent viable organisms or remnants of infection, and whether these results can be related to ongoing symptoms in patients after therapy for Lyme disease,” they write."Jytdog (talk) 02:07, 17 February 2014 (UTC)

• I also agree that there are no secondary MEDRS sources that validate that this is true. But I also think that the mainstream position is being challenged with increasing success. This research is not MEDRS, but there is legitimate minority research happening. Active research continues on whether PTLD involves live spirochetes or an autoimmune reaction to a previous infection. But the mainstream view remains cautious.Bob the goodwin (talk) 07:58, 17 February 2014 (UTC)

All this study shows is that recurring EM rashes are from new tick bites, period. Chronic Lyme disease is NOT characterized by recurring EM rashes. It was very irresponsible of the researchers to go to the media and claim that this study disproves chronic Lyme disease. - Technophant (talk) 10:48, 21 July 2014 (UTC)

LEAD - NPOV, not adequate

The first line in the lead is "The term "chronic Lyme disease" is controversial and not recognized in the medical literature, and most medical authorities advise against long-term antibiotic treatment for Lyme disease." The first line in most leads is a definition of the term followed by more background information. Chronic Lyme disease has been in the past and is still used as a medical term in research and practice, so this information isn't accurate. - Technophant (talk) 11:08, 21 July 2014 (UTC)

Were does, "a broad array of illnesses or symptom complexes for which there is no reproducible or convincing scientific evidence of any relationship to B. burgdorferi infection" come from? I did a searchin reference one and didn't find the quote. Ward20 (talk) 09:11, 1 April 2015 (UTC)

third paragraph of the article. Jytdog (talk) 12:42, 1 April 2015 (UTC)

Thanks Jytdog , I don't know why my searches didn't find that. Ward20 (talk) 22:42, 1 April 2015 (UTC)

no problem. i was glad to check - our article could have been wrong. Jytdog (talk) 22:57, 1 April 2015 (UTC)

This article has been mentioned on the Neutral Point of View Noticeboard

Please click on WP:NPOVN#Struggle between NPOV and MEDRS in alt-med articles to see the discussion. Thanks! - Technophant (talk) 10:45, 21 July 2014 (UTC)

Techophant, yes I agree that the article is certainly not neutral. The article takes the view that Chronic Lyme doesn't exist, but it doesn't explain in detail how those it calls "Lyme patient advocates" respond to the article's portrayal. I was not able to find the discussion you pointed to, either. — Preceding unsigned comment added by Rakovsky (talk • contribs) 22:56, 10 June 2015 (UTC)

new comments

I did not spend the time to try to dig out the discussion from almost a year ago; but I do agree with Rakovsky, ie "that the article is certainly not neutral. The article takes the view that Chronic Lyme doesn't exist, but it doesn't explain in detail how those it calls "Lyme patient advocates" respond to the article's portrayal."

Also, the sentence in the lead paragraph stating that there is "no clinical evidence" that chronic lyme exists is clearly incorrect; and there are MEDRS sources which dispute it, so I have removed the sentence. I have also took out a misleading phrase and changed "post-Lyme disease syndrome" to "post-treatment Lyme disease syndrome." JustinReilly (talk) 20:53, 18 June 2015 (UTC)

My edit has been reverted by Yobol at 21:06, 18 June 2015‎. Explanation on edit history page is "Restore well sourced content." I don't question that it is sourced from MEDRS approved sources but content is non-neutral POV. Asked him to discuss here.

The original text of the lead paragraph (which is the text now, after Yobol's revert) was:

"Chronic Lyme disease is a controversial diagnosis that encompasses post–Lyme disease syndrome, as well as "a broad array of illnesses or symptom complexes for which there is no reproducible or convincing scientific evidence of any relationship to B. burgdorferi infection".[1] There is no clinical evidence that chronic lyme disease is caused by a persistent infection.[2] Most medical authorities advise against long-term antibiotic treatment for Lyme disease.[3][4][5]"

The ones I changed are sourced but misleading. They are a clear departure from Neutral POV.

(1) Says "chronic Lyme disease...encompasses post–Lyme disease syndrome, as well as 'a broad array of illnesses or symptom complexes for which there is no reproducible or convincing scientific evidence of any relationship to B. burgdorferi infection.'"

(A) I changed "post–Lyme disease syndrome" to "post-treatment Lyme disease syndrome" as this is much more neutral (and accurate);

(B) I had removed the following: 'a broad array of illnesses or symptom complexes for which there is no reproducible or convincing scientific evidence of any relationship to B. burgdorferi infection.' This is misleading because while "chronic Lyme disease" does present in a number of ways, so does Lyme disease, and there aren't any differences in the presentations between "chronic Lyme disease" and "Lyme disease", ie it's not like LLMDs are claiming that there are differences in symptoms between Lyme disease and "chronic Lyme disease." They do treat some ppl who are not positive by blood test, but so do doctors who treat other diseases.

(2) Says "There is no clinical evidence that chronic lyme disease is caused by a persistent infection." As I said when I made the edit: this is clearly incorrect; and there are MEDRS sources which dispute it such as ILADS latest treatment guidelines. note also, the following study (Not sure if cited in any secondary sources, perhaps Searching for the Cure Unknown): Brian Fallon's study which found antibiotic therapy helped ameliorate symptoms of PTLDS; as well as all the published autopsy case studies finding persistent Borellia.JustinReilly (talk) 22:21, 18 June 2015 (UTC)

ILAD is not a mainstream medical organization and their treatment guidelines do not get a lot of WEIGHT here. We also do not use individual clinial trials as sources for health content. Jytdog (talk) 00:29, 19 June 2015 (UTC)

Agree with Jytdog, ILADS is most certainly not a mainstream medical group, it is an advocacy group pushing a specific agenda regarding the treatment of Lyme disease, in this case one that has no significant support in mainstream medical thought. We use secondary sources here on Wikipedia for medical claims, please see WP:MEDRS for what sources are usable for medical statements. Yobol (talk) 00:25, 21 June 2015 (UTC)

Recent Research

Hello to all the editors of this page -- I am new to Wikipedia, and am trying to learn how it all works. Please explain things to me so that I understand, please do not assume that I am trying to be disruptive.

There is a good bit of scientific research on the topic of "persistent" Lyme disease, and I think it should be reflected in this article in order for our readers to learn about it. The article as written seems to clearly imply that "chronic Lyme disease" does not exist, and yet if there were no evidence that it did, we would not need this article at all. But maybe what we have here is a problem with terminology. In any case, there is research showing evidence of Lyme bacteria persisting following treatment with antibiotics, and this should be represented on the page somehow.

I see that Jytdog made the reversion. I do not understand his or her comments. Here are my questions:

1) Please explain to me why my source is not reliable. (http://www.nature.com/emi/journal/v4/n8/full/emi201551a.html) 2) What do you mean about content added to the lead and not to the body?

Thank you for your clarification. SealCove20 (talk) 01:36, 23 August 2015 (UTC)

Thanks for talking! Good on you. About the source... content about health is governed by a guideline called "MEDRS" - it is here: WP:MEDRS. The source you cited is a letter to the editor of Nature, not a review article, which is what we go by. Please let me know if you have questions about MEDRS after you read it. About the "lead" - the first part of the article, above the table of content, is called the "lead" in Wikipedia. It is just a summary of the body article - the stuff below the Table of Contents. Always add new content to the body, and then step back and look to see if it is important enough to be summarized in the lead.... not everything is. How we use the lead, is described here: WP:LEAD - please read that and let me know if you have any questions. Thanks again for talking ! Jytdog (talk) 01:50, 23 August 2015 (UTC)

Thank you Jytdog for taking the time to explain this to me, it was very helpful. I do appreciate your guidance as I learn the rules for Wikipedia editing. I now realize that I should use a secondary source instead of a primary source. Also, I need to find the appropriate spot in the body of the article for the new content. I do think the lead will need to be adjusted a bit, but I will focus on finding an appropriate reference and place for the content first. Again, thank you so much for taking the time to explain why you reverted my edit. I hope my next attempt will meet Wikipedia's high standards! SealCove20 (talk) 18:54, 23 August 2015 (UTC)

Thanks for being so gracious. We try hard to make sure that all health-related content is based on high quality sources - it is doubly important on a controversial topic like this one. Jytdog (talk) 19:16, 23 August 2015 (UTC)

Hello CFCF. I see that you reverted my most recent edit. This edit was placed in accordance with the guidance I received from Jytdog (see above). Can you please explain to me why you reverted the addition of this sentence and the references? Both references qualify as secondary references, I believe. Thank you for your help with this -- I am trying to learn how Wikipedia works in order to improve this article. SealCove20 (talk) 15:07, 27 August 2015 (UTC)

The CDC source is from a talk, it is neither a position statement nor did it say that this had been shown in humans. All it says is that this has been found to be the case in monkeys. Adding two sources together like this and combining their results is a form of WP:Synthesis. -- CFCF 🍌 (email) 15:34, 27 August 2015 (UTC)

Thank you CFCF for that clear explanation. I will study the synthesis page and try again. I appreciate your guidance on this as I am new to Wikipedia and still trying to figure it all out. SealCove20 (talk) 16:58, 27 August 2015 (UTC)

Hello CFCF I see that you reversed my third attempt to edit this page. This time, I tried a different approach to avoid synthesis. Would you be so kind as to explain why you deleted this edit? Thanks so much. SealCove20 (talk) 12:32, 28 August 2015 (UTC)

You have been told this already, but apparently it bears repeating: that is "not a review article, which is what we go by." Follow MEDRS. It's not even a study, but a comment by Stricker. That's a red flag right there. He is not a reliable researcher, and his so-called "research" and perseveration about Morgellons has ruined his reputation. Even if he were a top scientist with a good reputation, we would still demand reviews, not single studies. -- BullRangifer (talk) 16:17, 29 August 2015 (UTC)

Thanks so much to the many editors who are helping me to learn how Wikipedia works. It’s fascinating! I appreciate your links to the policy pages.

I would like to introduce a sentence about the persistence of Lyme disease in the human body following treatment with antibiotics. The reason I want to do this is that many patients whose doctors follow the IDSA standards on treating Lyme do not get better. The IDSA indicates that the person cannot have Lyme still, but recent research points to the persistence of the bacteria in the body following antibiotic treatment.

Does this reference count as a suitable secondary source, in your opinions?

http://www.ncbi.nlm.nih.gov/pubmed/?term=Lyme+Borreliosis%3A+is+there+a+preexisting+(natural)+variation+in+antimicrobial+susceptibility+among+Borrelia+burgdorferi+strains%3F

SealCove20 (talk) 01:43, 31 August 2015 (UTC)

The problem is that we have high quality sources that state there is no evidence of persistent infections in humans and I don't think this source says it does (can't be sure, don't have access to that journal article). Plus it appears to be a low impact factor journal, and does not appear to have made much of an impact in the medical literature. SealCove20, if I may suggest, you appear to have a particular viewpoint you want to add to the article, and are looking for a source to be able to add it in, no matter the quality. This is backwards to the way we should be working with a controvesial article, which is take the highest quality sources, and summarize them appropriately. If what you want to add to the article is only found in low quality Bosnian journals, when we have high quality sources that say the exact opposite, the time probably is not ripe for adding it yet. Yobol (talk) 02:07, 31 August 2015 (UTC)

Thanks Yobol for your thoughtful reply. I imagine that there are two kinds of editors on Wikipedia: those like me who have an interest in a particular topic and would like to see balanced, fair, accurate, up-to-date information on that topic reflected in the Wikipedia pages; and those who are passionate Wikipedia advocates who spend a good bit of their free time maintaining the quality of multiple Wikipedia pages across a broad spectrum of topics.

Lyme is controversial, no doubt, and there are conflicting viewpoints on the topic. It seems logical to me that, on a page including the word "controversy" in the title, accurate and balanced information maintaining the Wikipedia neutral point of view would be in the best interests of readers. As it stands, this page does not seem neutral, as has been pointed out by others on this talk page. It presents too much of one side of the controversy. Without explaining the other side of the controversy, the reader cannot get a sense of what the controversy is even about. While the weight of medical opinion may go in one direction, the fact that we need a controversy page at all to explain the situation with Lyme indicates that there are at least two points of view. Both points of view ought to be fairly represented on this page.

Seeing that we are trying to explain a complex controversy to our readers, it only makes sense to reflect two (or more) points of view. While this does not mean violating Wikipedia's policies and guidelines for good medical information, it does mean allowing for some leeway in deciding what can be an acceptable secondary source.SealCove20 (talk) 10:56, 1 September 2015 (UTC)

Something that is difficult for new editors to understand is that neutrality on Wikipedia is not giving equal validitiy to both sides of a "controversy". In fact, neutrality is based on what the sources says with due weight given to the viewpoints based on those sources. In this case, the highest quality sources say that lyme disease does not persist after treatment, so that is what we say. Description of the controversy goes into detail in that we acknowledge and report that there are those who feel otherwise, but we do not give that viewpoint any credibility until the high quality sources do. It may very well be that lyme persists even after treatment, and we can add that information after it is published in sources that meet our criteria for reliable sources for medical information. I recognize that people who believe the mainstream opinion is wrong will view the article as being non-neutral, but our form of "neutrality" means we do not give credence to any theories until they have been adequately sourced. See also our our guideline on fringe theories. Yobol (talk) 12:48, 1 September 2015 (UTC)

Lyme Guidelines

I think we need to include the new ILADS Lyme guidelines reference on this page. Here is a quote about the new guidelines:

"The National Guidelines Clearinghouse (NGC) is an initiative of the Agency for Healthcare Research and Quality (AHRQ), under the umbrella of the U.S. Department of Health and Human Services. The NGC recently adopted the Institute of Medicine (IOM) standards for developing trustworthy guidelines, which define the highest level of excellence that a guideline can achieve. Guidelines posted on the NGC website must now satisfy these standards. Thus, the inclusion of ILADS’s peer reviewed guidelines on the NGC website demonstrates that they meet the level of excellence called for by the IOM.

ILADS is the first organization to issue guidelines on Lyme disease that were developed in accordance with the IOM standards. The document provides a detailed review of the pertinent medical literature and contains the first set recommendations for Lyme disease based on the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) process. This rigorous review format is also used by many other well-respected medical organizations including the World Health Organization (WHO), the American College of Physicians, and the National Institute for Health and Clinical Excellence (NICE) in the UK. ILADS guidelines are the only Lyme disease guidelines that included a patient from the Lyme community as an author or as a member of the guidelines development panel."

SealCove20 (talk) 18:27, 21 September 2015 (UTC)

That quote would appear to come from a press release by ILADS. Placement in the NGC just means that it meets the minimum criteria (which do not appear to be at all very strict) and are specifically not an endorsement of the guideline, or its clinical usefulness ("NGC does not develop, produce, approve, or endorse the guidelines represented on this site.") We can mention this if/when a independent reliable source mentions it. Yobol (talk) 19:05, 21 September 2015 (UTC)

Yes, it did come from the press release from ILADS. The information below came to me from someone who worked on the guidelines. I think you may want to take this information into account before you decide that the criteria for the NRG are not very strict.

===== "The NGC standards now require a rigorous evidence assessment ( we used GRADE assessment—which is the highest level of evidence assessment possible.) Here are the NGC requirements—note highlights. http://www.guideline.gov/about/inclusion-criteria.aspx These highlights were adopted to comply with the Institute of Medicine evidence assessment requirements for creating trustworthy guidelines. http://iom.nationalacademies.org/Reports/2011/Clinical-Practice-Guidelines-We-Can-Trust.aspx I don’t think this editor should be taking on the IOM or a government agency enforcing IOM standards.

Institutions that have adopted GRADE: the World Health Organization (WHO), the American College of Physicians, and the National Institute for Health and Clinical Excellence (NICE) in the UK.

2013 (Revised) Criteria for Inclusion of Clinical Practice Guidelines in NGC Effective June 1, 2014: In order for NGC to accept a submitted clinical practice guideline, the guideline must meet all the criteria below. In addition to the guideline, developers must provide NGC with documentation of the underlying systematic review*.

1. The clinical practice guideline contains systematically developed statements including recommendations intended to optimize patient care and assist physicians and/or other health care practitioners and patients to make decisions about appropriate health care for specific clinical circumstances.
2. The clinical practice guideline was produced under the auspices of a medical specialty association; relevant professional society; public or private organization; government agency at the Federal, State, or local level; or health care organization or plan. A clinical practice guideline developed and issued by an individual(s) not officially sponsored or supported by one of the above types of organizations does not meet the inclusion criteria for NGC.
3. The clinical practice guideline is based on a systematic review of evidence as demonstrated by documentation of each of the following features in the clinical practice guideline or its supporting documents.

• An explicit statement that the clinical practice guideline was based on a systematic review.
• A description of the search strategy that includes a listing of database(s) searched, a summary of search terms used, the specific time period covered by the literature search including the beginning date (month/year) and end date (month/year), and the date(s) when the literature search was done.
• A description of study selection that includes the number of studies identified, the number of studies included, and a summary of inclusion and exclusion criteria.
• A synthesis of evidence from the selected studies, e.g., a detailed description or evidence tables.
• A summary of the evidence synthesis (see 3d above) included in the guideline that relates the evidence to the recommendations, e.g., a descriptive summary or summary tables.

NB: A guideline is not excluded from NGC if a systematic review was conducted that identifies specific gaps in the evidence base for some of the guideline's recommendations.

1. The clinical practice guideline or its supporting documents contain an assessment of the benefits and harms of recommended care and alternative care options.
2. The full text guideline is available in English to the public upon request (for free or for a fee). Upon submission of the guideline to NGC, it also must be noted whether the systematic review or other supporting documents are available in English to the public upon request (for free or for a fee).
3. The guideline is the most recent version published. The guideline must have been developed, reviewed, or revised within the past five years, as evidenced by appropriate documentation (e.g., the systematic review or detailed description of methodology).

• Systematic reviews are literature reviews that summarize evidence by identifying, selecting, assessing, and synthesizing the findings of similar but separate studies. They can help clarify what is known and not known about the potential benefits and harms of drugs, devices, and other healthcare services =====

.2--SealCove20 (talk) 23:37, 21 September 2015 (UTC)

Read it, not impressed. Please find an independent reliable source that discusses this, otherwise, it does not deserve any WP:WEIGHT here. Yobol (talk) 02:24, 24 September 2015 (UTC)

Acceptable Secondary Sources

Yobol I have a list of secondary sources that I think will support the position that Lyme bacteria can persist following antibiotic treatment, and that the persisting bacteria can continue to make a person very ill. This leads to the idea that eradicating the persisting bacteria is an important treatment goal for patients. It doesn't matter whether you call it chronic Lyme disease or post-treatment Lyme disease syndrome or something else -- the idea is that a person still has bacteria in their system that is making them sick.

Rather than play a cat-and-mouse game of me putting in a sentence with a reference, and you removing it, and me trying again with something else, I thought I would just list all the secondary sources I have here to see if any of them meet your requirements. Assuming you find some or all of them acceptable secondary sources, I will take the time to write text for the main page that will be supported by them. SealCove20 (talk) 15:31, 26 September 2015 (UTC)

I invite all other Wikipedia editors interested in Lyme to review these secondary sources and weigh in. Use them anywhere if you think they are good references.

Evidence assessments and guideline recommendations in Lyme disease: the clinical management of known tick bites, erythema migrans rashes and persistent disease.

Lyme disease diagnosis and treatment: lessons from the AIDS epidemic.

Interlaboratory comparison of test results for detection of Lyme disease by 516 participants in the Wisconsin State Laboratory of Hygiene/College of American Pathologists Proficiency Testing Program.

Large differences between test strategies for the detection of anti-Borrelia antibodies are revealed by comparing eight ELISAs and five immunoblots.

Lyme disease: the next decade.

Lyme Disease and Other Tick-Borne Diseases: The State of Science.

Clinical Practice Guidelines We Can Trust.

Counterpoint: long-term antibiotic therapy improves persistent symptoms associated with lyme disease.

Lyme Borreliosis: Is there a preexisting (natural) variation in antimicrobial susceptibility among Borrelia burgdorferi strains?

Review of evidence for immune evasion and persistent infection in Lyme disease.

Lyme borreliosis: a review of data on transmission time after tick attachment.

[www.scirp.org/Journal/PaperInformation.aspx?PaperID=51411 Borrelia burgdorferi: Cell Biology and Clinical Manifestations in Latent Chronic Lyme.]

Post-Lyme borreliosis syndrome: a meta-analysis of reported symptoms.

A reappraisal of the u.s. Clinical trials of post-treatment lyme disease syndrome.

Antibiotic retreatment of Lyme disease in patients with persistent symptoms: a biostatistical review of randomized, placebo-controlled, clinical trials.

SealCove20 (talk) 15:30, 26 September 2015 (UTC)

Source #1: rehash of the ILADS guidelines. Source has not found any significant support (as evidence by positive citations in other independent medical sources) since publication, so no indication that the wider medical community has viewed this iteration of the guideline any better than previous.

Source #2: Produced by RB Stricker who was dismissed after found to have performing scientific misconduct, and likewise a ILADS member. No indication that this has received external support outside the ILADS promotional community.

Source #3: Primary study, fails MEDRS

Source #4: Primary study, fails MEDRS

Source #5: Another publication by Stricker; no indication of widespread medical acceptance.

Source #6: While the IOM is a reliable source, a "workshop" is usually not a scientific assessment or official report by them, so likely would not be useful here

Source #7: Doesn't talk about Lyme disease at all, so I don't see how this can be used as a source here

Source #8: Yet another publication by Stricker, who, as noted above, has a history of scientific misconduct

Source #9: Low impact factor Bosnian journal; appears to be written for veterinary discussions, not sure what is applicable to humans, and is not of high enough quality to use to contradict known medical consensus

Source #10: Source is not MEDLINE indexed, and should not be used for WP:REDFLAG assertions that go against known medical consensus

Source #11: Same journal as above, not MEDLINE indexed

Source #12: Publisher (SCIRP) is on Beall's list of possibly predatory publishers, should avoid

Source #13: Old study, and only discusses symptoms, which no one doubts exist (as opposed to persistence of organsims)

Source #14: Not MEDLINE indexed, should not be used for redflag assertions

Source #15: Criticized study written by an ILADS member (AK Delong). No indication that this has gained any credibility outside the insular ILADS circle.

I see no indication that any of these sources are the type of high quality sources we would need to contradict the known scientific consensus that extended treatment of abx or persistence of Lyme is present. Yobol (talk) 20:04, 27 September 2015 (UTC)

Change in guidelines?

This content was added to today - moved here for review and discussion:

The Infectious Disease Society of Americas (IDSA) Lyme guidelines were removed from the National Guidelines Clearinghouse (NCG) mid-February 2016 [ see National Guidelines Clearinghouse website] . The NGC, part of the US Department of Health and Human Services, requires that guidelines meet high quality standards to be accepted for posting. IDSA Lyme treatment guidelines were removed because they do not meet these standards, nor that of the Institute of Medicine (IOM). The Institute of Medicine was chartered by the US Congress to publish its standards on developing trustworthy guidelines in response to a growing climate of distrust arising from guideline developers with commercial ties that create worrisome conflicts of interest.

The International Lyme and Associated Diseases Society (ILADS) offer the first Lyme guidelines that comply with the IOM's new standards for rigorous evidence assessment and patient engagement in the development process. Physicians rely on the NGC. The ILADS guidelines were developed over a two-year period with co-authors Dr. Elizabeth Maloney, MD, a provider of continuing medical education courses on tick-borne illnesses, and Dr. Dan Cameron, MD, a treating physician who is President of ILADS. Following development, the guidelines were extensively reviewed by internal and external experts and published in a peer-reviewed journal, Expert Review of Anti-Infective Therapy. The guidelines, "Evidence Assessments and Guideline Recommendations in Lyme disease: The Clinical Management of Known Tick Bites, Erythema Migrans Rashes and Persistent Disease," reflect the most current science. See ILADS Guidelines posted on http://www.guideline.gov/content.aspx?id=49320&search=lyme+disease+and+ilads+guildlines .

It is expected that all other outdated information on the CDC website - that is informed by the IDSA - will be revised. For example, the following misstatements will be revised to acknowledge persistent infection and the appropriateness of longer-term antibiotic treatments according to case.

Outdated notions include : (1) "Chronic Lyme disease is a controversial diagnosis that encompasses "a broad array of illnesses or symptom complexes for which there is no reproducible or convincing scientific evidence of any relationship to B. burgdorferi infection". (2) There is no clinical evidence that "chronic" lyme disease is caused by a persistent infection. (3) Most medical authorities advise against long-term antibiotic treatment for Lyme disease.

References

-Jytdog (talk) 06:42, 15 February 2016 (UTC)

I did a search at the NCG and found no recent update there; the current guideline was posted last summer. So I don't know what the first bit is about. The rest of it appears to be WP:COPYVIO from an ILADS press release... Jytdog (talk) 07:09, 15 February 2016 (UTC)

Yes, looks like OR/Advocacy. For Wikipedia to talk about how guidelines have changed, we'd need good RS on that topic to base it on. Alexbrn (talk) 07:59, 15 February 2016 (UTC)

The fact remains that the IDSA guidelines are not listed on the national guideline clearinghouse hence they can not be used 83.252.187.104 (talk) 18:39, 16 February 2016 (UTC)

That is actually not a fact - what is your source to support that "they can not be used"? That is a real question - please do answer it directly. Thanks. Jytdog (talk) 18:43, 16 February 2016 (UTC)

causes/mechanism of the "disease" or symptomes

I belive the article 'd benefit from a section either explaining the causes of what is called chronic/postinfection symptomes, or if that is unknown to medicine then this fact and perhaps the ongoing research - if thre's data available. I think the statement of the cause/mechanis being unidentified/debated is more informative than going on without mentioning it. 176.63.176.112 (talk) 19:07, 15 February 2017 (UTC).

How can a fake disease have an actual cause? Alexbrn (talk) 19:09, 15 February 2017 (UTC)

Lyme "wars" content to be merged later

Lyme "wars" is an ongoing controversy between two "vengeful and bitter" camps of Lyme disease researchers and doctors about the nature and treatment of chronic sequelae of Lyme disease.

The majority group, supported by the Infectious Diseases Society of America (IDSA), predominantly university-based physicians, consider Lyme disease easily curable with a two to four week course of antibiotics. In their opinion, chronic sequelae of acute Lyme disease occur infrequently. IDSA promotes the belief that the chronic sequelae of acute Lyme disease are only the consequences of Lyme infection, such as an autoimmune reaction, but not the infection itself.

The minority group, exemplified by the International Lyme And Associated Diseases Society (ILADS) consisting mostly of practical physicians, insist that Lyme disease bacteria may survive a short course of antibiotics. These surviving bacteria may cause, in their view, the long-term consequences of acute Lyme disease. Hence such cases have to be treated by additional, long-term antibiotic therapy, until the symptoms clear.

The history of the misunderstanding

The "Lyme Wars" grew steadily through the 1980s and 1990s as increasing populations of people presented themselves to doctors with clinical symptoms of Lyme disease and doctors began using longer doses of antibiotics. The war entered a hot stage, when a leading establishment figure, the discoverer of Lyme disease Allen Steere wrote in 1993 Journal of American Medical Association had become "overdiagnosed" and overtreated. Steere noted that 57% of the patients referred to his specialized clinic do not have Lyme disease according to the test Steere clinic conducted. 45% of these patients had positive test results in other clinics; however, Steere considered the false positive.

Several responses pointed out to several shortcomings in Steere article.

• Their authors were "dismayed to read that Steere et al ignored many of the basic principles of the practice of medicine as well as of good research" For example, Steere appeared to imply that his test for Lyme disease is the best one, with perfect sensitivity and specificity.

• Other authors "were saddened and disturbed by the article by Steere et al. There exists in the scientific literature ample evidence of persistent chronic infection despite recommended treatment, documentation of seronegativity as a real phenomenon in Lyme disease, sufficient information regarding the mechanisms of evasion of the organism by antibiotics and the immune system, and evidence for the unreliability of diagnostic tests."

• Soon after, in August 1993, Joseph Burrascano, an East Hampton physician, specializing in Lyme disease, gave testimony to a Senate hearing investigating the adequacy of diagnostic measures and research in the prevention and treatment of Lyme disease. He accused a core group of university-based Lyme disease researchers in acting unscientifically and unethically. They adhere to outdated, self-serving views and attempt to personally discredit those whose opinions differ from their own. They exert strong, ethically questionable influence on medical journals, which enables them to publish and promote articles that are are badly flawed. They work with Government agencies to bias the agenda of consensus meetings and have worked to exclude from these meetings and scientific seminars those with ultimate opinions."

• Burrascano characterized the views of his adversaries as promoting the idea that Lyme is a simple infectious disease, easily diagnosed, and cured with a four week course of antibiotics. Furthermore, Burrascano accuses that this group is thinking in an unscientific way. Burrascano says that this group believes "that when the patient fails to respond to their treatment regimen, which is a common occurrence, it is not because the treatment has failed, but because they have developed a new illness", of a rheumatologic or arthritic nature due to the inactivation of the immune system."

Patient activism and the lyme loonies

The National Institutes of Health head of research funding for Lyme disease commented in an email in 2007 his disdain for the “the Lyme loonies.” He states he received vile, vicious, profane and abusive telephone calls.

Michael Specter compares many Lyme advocates unfavorably with early days AIDS activists who were some of the most knowledgeable people in the field. Lyme activists often are associated with conspiracies such as Plum Island (a government bio-warfare that created Lyme), New York Times (they were told not to report on Lyme honestly), N.I.H. (had an agreement with pharmaceutical companies to deny the existence of chronic Lyme disease).

The activists have been lumped with other anti-science movements (anti-vaccine and HIV virus deniers) and have been accused of fostering pseudoscientific practices and lobbying for legislation to subvert medicine and science.

In response to an unknown document about a Lyme protest at University of Connecticut Health Center in 2007, Professor Durland Fish of Yale University wrote in an email to other IDSA guidelines authors and federal public health officials "This battle cannot be won on a scientific front. We need to mount a socio-political offensive; but we are out-numbered and out-gunned. We need reinforcements from outside our field."

Much of the activism stems from the impression that IDSA guidelines were de-facto policies, as insurance coverage was linked to the guidelines, and because doctors fears sanctions for treating outside the guidelines, and so expressed their [Political dissent] through protests political lobbying and public opinion.(possible ref Lyme Disease Update: Science, Policy & Law, published by the Lyme Disease Association.)

IDSA antitrust investigation

In 2006, Richard Blumenthal, the Connecticut Attorney General, opened an antitrust investigation against the IDSA, accusing the IDSA Lyme disease panel of undisclosed conflicts of interest and of unduly dismissing alternative therapies and chronic Lyme disease. Patients groups led by the California Lyme Disease Association had urged Blumenthal to take this action, however ILADS was also a vocal supporter of Blumenthal's attempted takedown of the IDSA guideline.

The investigation was closed on May 1, 2008, without charges when the IDSA agreed to submit to a review of its guidelines by a panel of independent scientists and physicians which would occur on July 30, 2009. The investigation raised concerns about conflicts of interest on the part of members of the IDSA panel that were never publicly disclosed. The settlement statement from Blumenthal's settlements mentioned several patient concerns, the use of guidelines to limit patient care because guidelines are treated as mandatory within the medical community, the investigation or sanctioning of 50 physicians for prescribing longer term treatment approaches to Lyme disease, and the refusal of insurance companies to cover treatments not covered by guidelines.

The investigation was closed on May 1, 2008, without charges when the IDSA agreed to submit to a review of its guidelines by a panel of independent scientists and physicians which would occur on July 30, 2009. Views on the motivation and outcome of the investigation varied. Blumenthal's press release described the agreement as a vindication of his investigation and repeated his conflict-of-interest allegations.

A Forbes piece described Blumenthal's investigation as "intimidation" of scientists by an elected official with close ties to Lyme advocacy groups. The Journal of the American Medical Association described the decision as an example of the "politicization of health policy" that went against the weight of scientific evidence and may have a chilling effect on future decisions by medical associations.

The medical validity of the IDSA guidelines had not been challenged in the original investigation, and in 2010 the IDSA voted to reissued the 2006 guidelines unchanged by a unanimous vote.

References

The reference list should include the book "Healing Lyme" by Stephen Buhner. It has a chapter on the mechanisms of borrelia infection, including information on how the bacteria invades the body and evades its various immune system elements, as well as much of the biochemistry involved in inflammation and collagen breakdown. — Preceding unsigned comment added by 97.87.62.51 (talk) 03:06, 30 March 2017 (UTC)

Synonyms

Per WP:MEDMOS. Carl Fredrik ^talk 08:13, 21 June 2017 (UTC)

Oh I forgot. YOU own the article, so you don't have to reference your pop culture, non-medical name for a fake disease. Do whatever you want, you are not very cooperative.SkepticalRaptor (talk) 05:38, 22 June 2017 (UTC)

CFCF I went looking for support for "chronic borreliosis" as a synonym for the imagined condition - the phrase is not in the first 10 refs and is not used in the article. What is the source for that? (I did find noncritical usage of it for example in PMC 3667275 but it is difficult to use FRINGE-sympathetic sources this way...) Jytdog (talk) 06:34, 22 June 2017 (UTC)

SkepticalRaptor & Jytdog — or you could try performing a pubmed search with the string:

"chronic borreliosis"[All Fields] AND Review[ptyp]

There you have at least 5 review sources that pass MEDRS and can support the existence of the synonym. To me it just feels useless to cite them only for the existence of a synonym — when we're not taking anything else from them than that the terms are equivalent.

These are also all critical, but I don't get why it would matter? If it is used as a synonym to Chronic Lyme — then it is a synonym, whether the disease exists or not! It is obviously better if someone searching for ""chronic borreliosis" finds their way here, where we say that the disease is "generally unrecognized", than for them to continue believing that it may be a distinct, real disease. The entire world of alt-med is full of synonyms, and it's good to list them, just as we list: "complementary medicine" as a synonym to "alternative medicine".

Being stuck with the notion that anyone editing this article would want to promote a fake disease is very disruptive — and rather, it is that attitude which is "not very cooperative". Where do you even get the idea that it was a pop culture/non-medical name? It screams of a lack of real medical knowledge to miss that borreliosis is the medical term for lyme disease infection. Carl Fredrik ^talk 10:53, 23 June 2017 (UTC)

In that search, the only MEDRS result is PMC 2695290 and it does not refer to "Chronic lyme" as "chronic borreliosis". They refer to it as "chronic Lyme disease" or "post-Lyme syndrome". The ref does say "When chronic borreliosis is suspected, other potential causes of the clinical syndrome must be painstakingly excluded." but they are not talking about this. I do not assume that you are promoting anything. It is only a question of whether this is a valid synonym. Jytdog (talk) 13:16, 23 June 2017 (UTC)

1. Yes, they are talking about the precisely this — as is very evident if one reads that paper. It never expressly says "these are synonymous", but it does not discuss any other definition for chronic borreliosis, and it should be evident for anyone with some knowledge that they are the same, since: "borreliosis" = "lyme disease".
2. The comment about assuming editors are here to promote quack-pot theories was not directed at you Jytdog, that would have seemed obvious as you had not made any comments to that effect.
3. The others sources in the list are absolutely valid under MEDRS, even though they are not in English/older — these do not invalidate the sources. They are only invalid for statements where they have been superseded by newer better sources, or the field has changed significantly. When it comes to terminology they are not invalid, and in fact we only rely on WP:RS as it is arguably not a medical statement. However, I'd rather cite something decent like PMC 2695290.
4. If you instead search in the primary literature you will find an abundance of use for this term. Even worse is a google-search for the term, which gives support that they are synonyms, but also support that the disease exists. I do not want to cite any links to crackpot sites that promote the disease.

We're not promoting the quacks by giving the synonyms that crackpot-sites do, if anything we are helping readers see that both are names for the same nonexistent phenomenon. Carl Fredrik ^talk 12:12, 24 June 2017 (UTC)

I think we should include the crackpot synonyms from this paper too: [3]

However, we should definitely not cite the paper — which is why I am happy to include both "Chronic persistent Lyme Disease" and "Chronic borreliosis" as synonyms, but without a source.

If alternative terms are used for the same nonsense — Wikipedia should display them, preferably without giving false credence to the sources they are in. Carl Fredrik ^talk 12:16, 24 June 2017 (UTC)

I do not agree, at all, that PMC 2695290 supports the alt name. I will post at WT:MED to get further input on this. Jytdog (talk) 18:04, 24 June 2017 (UTC)

Then you are unable to take in the source and I would direct you to WP:CIR. Carl Fredrik ^talk 21:34, 24 June 2017 (UTC)

Done, Wikipedia_talk:WikiProject_Medicine#Chronic_Lyme_disease, also at Wikipedia:Fringe_theories/Noticeboard#Chronic_Lyme_disease. -- Jytdog (talk) 18:07, 24 June 2017 (UTC)

I used the suggested search terms that CFCF helpfully provided. (Thank you for that.) I got four reviews. Only one was published during the last decade. Only one (the one from 1989) was published in a journal that is intended for native English speakers, and two of the reviews four were written in other languages (Polish and Spanish). (Names do not always translate exactly, so non-English sources are not ideal for determining what English names are.) The most recent one, from a German journal, merely mentions the term in passing, in the English-language abstract; the actual text doesn't use this term at all. However, the review does say two things that I think are relevant:

• The section that talks about this subject uses a slightly convoluted description rather than a term: "Chronic, nonspecific symptoms accompanied by a positive Borrelia serology". The authors allow that a person could have a Lyme infection without noticing a rash, and agree with the practice guidelines (I think that's what they're citing) for their country that if the problem isn't solved by a short-term course of antibiotics, then the person does not have a Lyme infection.
• They directly address the names in the next paragraph: "This symptom complex is often designated by the as yet inadequately defined terms "chronic Lyme disease" or "post-Lyme syndrome," implying the pathogenetic conception of a persistent infection or of a persistent secondary disease after eradication of the causative organism".

I'm therefore unable to support inclusion of this term as a synonym, using these sources. Perhaps we should look for other kinds of sources, such as a good textbook? WhatamIdoing (talk) 20:26, 24 June 2017 (UTC)

Textbooks aren't going to cover this properly — it was a research field until pretty recently — and is now debunked. The books you will find are quack-literature and sales material. There are loads of shoddy sources for the term, I do not want to cite them, even if they do support the claim (see for example: [4]). A passing mention is more than enough to list a synonym here. Carl Fredrik ^talk 21:36, 24 June 2017 (UTC)

I stand corrected, see the following:

• Essentials of Psychosomatic Medicine — a decent source

Carl Fredrik ^talk 21:42, 24 June 2017 (UTC)

the textbook (link to google.com) says, for anybody who cannot make the link work: "Many different psychiatric symptoms have been reported to be associated with Lyme disease, including depression, mania, delirium, dementia, psychosis, obsessions or compulsions, panic attacks, catatonia, and personality change (Tager and Fallon 2001). However, association does not allow one to infer causation by Lyme. Although symptoms such as pain, fatigue, and difficulty with daily activities are common in patients who received treatment for Lyme disease years earlier, the frequencies of such symptoms are similar in control subjects without Lyme disease (Seltzer et al. 2000). Even in patients with classic symptomatic Lyme disease confirmed by serological testing, persisting symptoms are usually explained by some illness other than chronic borreliosis if these patients have received adequate antibiotic therapy (Kalish et al. 2001; Seltzer et al. 2000)."

The ref is: Levenson, James L.; Schneider, Robert K. (2007). "10. Infectious Diseases". In Levenson, James L. (ed.). Essentials of Psychosomatic Medicine. American Psychiatric Publishing. p. 256. ISBN 9781585628476.

good enough for me. let's see if others are satisfied. Jytdog (talk) 00:08, 25 June 2017 (UTC)

[5]?--Ozzie10aaaa (talk) 01:14, 25 June 2017 (UTC)

Thanks Ozzie but I don't see that this contains the phrase "chronic borreliosis"... Jytdog (talk) 01:41, 25 June 2017 (UTC)

"chronic borreliosis" is not a synonym. We could add a discussion of the term to the society and culture section with appropriate context if proper refs are found. Doc James (talk · contribs · email) 02:09, 25 June 2017 (UTC)

That's another thing that gave me pause. Despite the redirect, Lyme disease isn't the only borreliosis (e.g., all of the louse- and tick-borne forms of Relapsing fever borreliosis). I don't know whether any of them could have chronic forms.

I'm generally satisfied with the textbook that CFCF listed here. But perhaps we should find out whether this is the only condition that term is used for, or qualify it as "a name that some people use" instead of implying that chronic borreliosis is always and only this exact thing. WhatamIdoing (talk) 03:58, 25 June 2017 (UTC)

chronic borreliosis would be more a synonym of "late Lyme disease" which is a long term untreated infection. Doc James (talk · contribs · email) 06:02, 25 June 2017 (UTC)

Most evidence points to untreated infection healing out — unless it progressed to neuroborreliosis, which is very rare. Carl Fredrik ^talk 07:07, 25 June 2017 (UTC) 

There is also the joint infections but yes rare. Doc James (talk · contribs · email) 18:34, 25 June 2017 (UTC)

On point new analysis 23 June from the CDC

• See: https://www.cdc.gov/mmwr/volumes/66/wr/mm6623a3.htm?s_cid=mm6623a3_w

The term “chronic Lyme disease” is used by some health care providers as a diagnosis for various constitutional, musculoskeletal, and neuropsychiatric symptoms (1,2). Patients with a diagnosis of chronic Lyme disease have been provided a wide range of medications as treatment, including long courses of intravenous (IV) antibiotics (3,4). Studies have not shown that such treatments lead to substantial long-term improvement for patients, and they can be harmful (1,5). This report describes cases of septic shock, osteomyelitis, Clostridium difficile colitis, and paraspinal abscess resulting from treatments for chronic Lyme disease. Patients, clinicians, and public health practitioners should be aware that treatments for chronic Lyme disease can carry serious risks. …

Best, Carl Fredrik ^talk 14:54, 26 June 2017 (UTC)

there you go, that is the alt med use of the term. we want to avoid confusion that PTLDS is this "chronic lyme disease". Exactly. Jytdog (talk) 20:25, 27 June 2017 (UTC)

Proposal: Rename and refocus

This article is currently about the altmed/pseudodiagnostic "chronic lyme". Should we:

a) rename it to "Post-treatment lyme disease syndrome", refocus it on the legitimate medical condition, and move almost all the content currently in the article to "Society and culture"; or

b) keep this as it is and deal with PTLDS in the Lyme disease article? Jytdog (talk) 15:26, 25 June 2017 (UTC)

• Support A as this is how the main stream sources typically use the term. Doc James (talk · contribs · email) 18:33, 25 June 2017 (UTC)
• Support A if we state in the lede:

1. Misdiagnosis is frequent, with a strong lobby trying to increase the rate of diagnosis based on flimsy evidence.
2. Antibiotics do not help — even most cases of untreated lyme disease heal without sequelae

Carl Fredrik ^talk 20:30, 25 June 2017 (UTC)

• Antibiotics are actually harmful for PTLDS/CLD. Doc James (talk · contribs · email) 20:45, 25 June 2017 (UTC)

• support A lede should indicate frequent misdiagnosis--Ozzie10aaaa (talk) 21:21, 25 June 2017 (UTC)
• Support B. Leave this article alone and create a separate PTLDS article if necessary. Ruslik_Zero 20:36, 25 June 2017 (UTC)
• Support B As long as the CDC calls it CLD, that's good enough for me. Unless, we know more than the CDC...I am open to Wikipedia being the new Merck Manual of diseases. SkepticalRaptor (talk) 06:16, 26 June 2017 (UTC)
• support A as long as we don't get into terminological and conceptual muddle over "chronic lyme disease" Jytdog (talk) 17:09, 26 June 2017 (UTC)
• Support B There should be two separate articles. One for the CDC-approved PTLDS, and one for the controversial CLD much like kinesiology and applied kinesiology. Regardless, given that this was originally titled Lyme disease controversy, it would probably do better there than in a "Society and Culture" section. menaechmi (talk) 19:19, 27 June 2017 (UTC)
  • Maybe what we need is an article called "Chronic Lyme disease controversy"? The prior name was better than the current one IMO. Doc James (talk · contribs · email) 20:54, 27 June 2017 (UTC)
    • This article is fine if we take off the (argh) "Post-treatment Lyme disease syndrome" label in the infobox which doesn't fit at all. If we want to focus it on medicine, then we want to focus it. I think option A is great. Jytdog (talk) 21:03, 27 June 2017 (UTC)

Discussion

This paper sums up the issue nicely

"The debate about “chronic Lyme disease” provides a remarkable example of how heated a conversation can become when people use words differently. Contested issues largely stem from very different understandings of what terms mean... The medical/scientific community uses the term “chronic Lyme disease” to describe individuals with objective evidence of longstanding ongoing infection, while the “Lyme literate” use this term to describe individuals with chronic, life-altering symptomatology without necessarily having biologic evidence of persisting infection."[6] Chronic Lyme is a vague term used in multiple ways. Doc James (talk · contribs · email) 20:55, 25 June 2017 (UTC)

What is interesting is that the article nowhere expresses what "objective evidence of longstanding ongoing infection" is. In fact, spare neuroborreliosis and lyme arthritis no such evidence exists. No blood culture will grow Borrelia burgdorferi, so the only alternative is quantitative PCR — which is not recommended by anyone because it has so low specificity. Carl Fredrik ^talk 03:39, 26 June 2017 (UTC)

Turn this page into a disambig with three items

This could be another option. Each of the three items will than be dealt with on their own page.

• Late Lyme disease
• Chronic Lyme (alternative medicine)
• Post treatment lyme disease syndrome

Doc James (talk · contribs · email) 23:23, 25 June 2017 (UTC)

There is a lack of any uniform "Late Lyme disease". Various guidelines list manifestations as: Erythema migrans, Lyme lymphocytoma, Acrodermatitis chronica atrophicans (late), Lyme arthritis, Neuroborreliosis, Borrelia carditis (may occur late). I'm pretty sure we could cover these under the main article — the only one that seems worthy of creation being Lyme arthritis.

No guidelines I've come across recommend long-term antibiotic treatments, with the French going so far as to state:

For patients with chronic disorders attributed to Lyme borreliosis, therapeutic studies are unanimous: none of them showed any benefit in prolonging antibiotic treatments

A more stringent systematic review from 2013 is probably the best support for long-term treatment you can find, and all it says is "evidence is lacking" for long-term treatment.

We need to tread carefully so as not to promote non-existent diseases. Carl Fredrik ^talk 04:14, 26 June 2017 (UTC)

This disease doesn't exist. Why are we even discussing giving it a name, that frankly, no body uses. The CDC calls it chronic lyme disease (as recently as an MMWR article last week. Is it Wikipedia's job to lead the effort to establish a fake disease as a real one? I say not. SkepticalRaptor (talk) 06:13, 26 June 2017 (UTC)

Which disease does not exist? All of the ones I listed are manifestations of Lyme disease and most certainly exist. Carl Fredrik ^talk 07:07, 26 June 2017 (UTC)

References

Another very high quality source:

• A closer look at Lyme disease Health Council of the Netherlands, 2013 (In English)
  Make sure to click through to the entire 106 page pdf

Best, Carl Fredrik ^talk 15:05, 26 June 2017 (UTC)

Condition exists

Per the CDC[7] and other sources. The cause is just simple not beleived to be due to persistent infection. Doc James (talk · contribs · email) 01:46, 25 June 2017 (UTC)

User:Doc James, this was bold!

This article is about the pseudoscientific condition, where there is no evidence that there was ever an actual infection. Actual Lyme disease including long term sequelae in some people, is handled there. Jytdog (talk) 01:46, 25 June 2017 (UTC)

User:Jytdog did you even read the CDC source I linked? Do you realize that post-treatment Lyme disease syndrome links here? Reverting just because I was bold is bull sorry. Also not impressed with you restoring all the primary sources I had removed. Doc James (talk · contribs · email) 01:48, 25 June 2017 (UTC)

yes I did. In the past, this article is not about sequelae of an identified infection. It is about this other thing. Jytdog (talk) 01:50, 25 June 2017 (UTC)

What do you think about "Although sometimes called “chronic Lyme disease,” this condition is properly known as “Post-treatment Lyme Disease Syndrome” (PTLDS)."[8]? Doc James (talk · contribs · email) 01:51, 25 June 2017 (UTC)

Thanks for pointing out the redirect. I fixed that to point to Lyme. No controlling when people do that sort of thing. James you are not dealing with what I have written here twice now. Would you please? Jytdog (talk) 01:54, 25 June 2017 (UTC)

The two terms "Post-treatment Lyme Disease Syndrome" and "chronic Lyme disease" are used interchangeably by the CDC. Yes we have a group that claims that this condition is caused by continued infection by B. burgdorferi and should be treated with antibiotics. That is the false bit. That people have symptoms after Lyme disease is not alt med, it is that this is due to continued infection that is alt med. We can have a RfC on this point if you insist. Doc James (talk · contribs · email) 01:56, 25 June 2017 (UTC)

This is the third time you have replied and not dealt with the fundamental distinction with regard to confirmed evidence of past infection. Please respond to that. Please be aware that the CDC is not saying that PTLDS = chronic lyme. PTLDS requires a confirmed diagnosis. Jumping to an RfC before we have an actual conversation is premature. Jytdog (talk) 01:59, 25 June 2017 (UTC)

The term is used in different ways per[9]. Chronic lyme does not JUST refer to cases without evidence of past infection. Yes many people claim to have the condition who do not. Does not mean the actual condition does not exist. I see people who claim they have porphyria who do not. Does not mean the disease does not exist or those who claim they have the condition when they do not get to take over the language / terminology. We need to figure out how to have the legitimate condition coexist along with a discussion of those claiming to have it. The way I had reorganized the article did a much better job of doing that than just having a massive section called "background" Doc James (talk · contribs · email) 02:03, 25 June 2017 (UTC)

• I want to add that it would be interesting to discuss the actual condition here. If we do that, we are going to end up with some weird mess like we did at the Alkaline diet article, which we are about ready to split in two - one on the actual science thing and the other on the pseudoscience. See also Leaky gut syndrome and Intestinal permeability where we have a similar split between science and alt med. Jytdog (talk) 02:04, 25 June 2017 (UTC)

The solution is we begin with what is known:

1) the cause is unknown per the CDC

2) the cause is not ongoing infection

3) antibiotics do not help

Why are we letting Science Based Medicine overrule the CDC? We should follow WP:MEDRS. Doc James (talk · contribs · email) 02:06, 25 June 2017 (UTC)

You are conflating "chronic lyme" with PTLDS. What you write is true about PTLDS, which is something we discuss for people with a history of confirmed infection. This is not "Chronic lyme." Why are you doing this? This is quite maddening. Chronic lyme is like Morgellons. The CDC does not equate PTLDS and chronic lyme. Slow the hell down, James. Importantly, please clarify where you would deal with the cultural phenomenon of "Chronic lyme" (which again is almost exactly like Morgellons - some Morgellons people are actually starting to claim it is a form of borreliosis btw.) Jytdog (talk) 02:09, 25 June 2017 (UTC)

One thing we could do, is massively revise this page, and title it “Post-treatment Lyme Disease Syndrome” and have it be about the actual condition, and shift all the "chronic lyme" stuff to Society and culture. It will be kind of awkward WEIGHT-wise, but would make sense. Is that what you are aiming at? If so, that is something to simply propose and let sit a bit to see if we can get consensus around it.... Jytdog (talk) 02:20, 25 June 2017 (UTC)

Yup that was sort of what I was trying to do. If you look at the version herehere you will see progress in that direction. Doc James (talk · contribs · email) 02:24, 25 June 2017 (UTC)

Okay so that is where we disagree. "Chronic Lyme disease" is used as a synonym for “Post-treatment Lyme Disease Syndrome” per the CDC source I have sited.

The first ref also does not support the first sentence very well. We at WP are defining the term to ONLY mean the "alt med" condition.::The 2007 NEJM describes 4 categories on page 1425. We are pigeon holing this article into category 1, category 2 is mis-diagnosis, category 3 may have had prior disease, and category 4 have post-Lyme disease syndrome. Doc James (talk · contribs · email) 02:22, 25 June 2017 (UTC)

What I wanted to do was better match the direction the 2007 NEJM piece and other major medical sources take on the topic. Basically part of the cases diagnosed as Chronic Lyme are unsupported. Part are potentially a misdiagnosis of other conditions. And part are post Lyme.

None are due to ongoing infection. None should be treated with antibiotics. Doc James (talk · contribs · email) 02:24, 25 June 2017 (UTC)

I see a lot of confusion on the topic. You can get lyme - and you can get it again. Once your IGG bands are positive on western blot they will always be positive. Any future 'tic borne disease' will be masked by the fact the human body has already built an immune response. (thus many physicians will tend to treat if symptoms are present). The topic on this forum seems to also include those patients who have "been treated for Lyme disease but still did not get any better" - thus you can also name the page "Patients treated for lyme disease who really did not have lyme disease and now still have the same problem they did". Vegaproc (talk) 19:59, 6 July 2017 (UTC)

Broadening the scope of this article

The 2007 NEJM article[10] discusses 4 categories of "chronic Lyme" on page 1425. Category 1 is those who get the diagnosis based on little / no evidence. Category 2 is those who have the diagnosis applied when they actually have something else. Category 3 is those who have evidence of a prior infection and symptoms but it is unclear if the two are related. And category 4 is "post-Lyme disease syndrome" which well of unknown cause is a well accepted condition. All 4 are commonly called chronic Lyme and thus should be covered in this article IMO. CDC also supports this.[11] The article should focus on the actual condition with the alt med stuff mostly dealt with under society and culture.

Support coverage of all 4

• Support As proposer Doc James (talk · contribs · email) 02:36, 25 June 2017 (UTC)
• support per Doc James(article seems to need to be expanded[12])--Ozzie10aaaa (talk) 09:14, 25 June 2017 (UTC)

Discussion

• The above actually misrepresents the 2007 NEJM piece as well as the CDC. The NEJM piece broke "chronic lyme" into 4 divisions, declared the first three to be pseudoscience, and left only category 4, which it named "P-LDS" (now called post treatment LDS to make it even more clear, that it is based on a history of confirmed infection), as valid medicine. It walked fiercely away from the term "chronic lyme" for use in the practice of medicine, and that term is now alt med/pseudoscience. The NEJM piece is the very piece that made that turn. James I suggest you just delete this (including my comment} and we frame this together. The proposal should be to focus this article on PTLDS and leave the discussion of the cats 1-3 ("chronic lyme") to the Society and culture section. it is not a "broadening" it is a complete refocusing. Jytdog (talk) 02:40, 25 June 2017 (UTC)

I think under a section called "diagnosis" one could mention that some causes of Lyme are a misdiagnosis for another condition. And that many are based on little / no / incorrect understanding. (excellent point as in the USA fewer and fewer physicians take the time to make a diagnosis)Vegaproc (talk) 20:01, 6 July 2017 (UTC)

So well I agree most of the text on the alt med aspects would go in the society and culture section not all of it needs to.

Yes PLDS is the technically correct term for the 4th group but many also refer to that group as having chronic Lyme and PLDS is within the group of conditions known as chronic lyme spectrum. Doc James (talk · contribs · email) 03:48, 25 June 2017 (UTC)

"chronic lyme spectrum"? oy. Jytdog (talk) 03:53, 25 June 2017 (UTC)

Meant "within the group of conditions known as chronic lyme" Apologies Doc James (talk · contribs · email) 03:57, 25 June 2017 (UTC)

this is turning into a mess. There is only recognized condition here, and that is PTLDS. The rest is alt med. Again I would support focusing the article on PTLDS in a standard MEDMOS way, and treating the confusion recognized by the other three cats and called "chronic lyme" under society and culture section. MEDRS refs do not discuss PTLDS as "chronic lyme" - they take pains to distinguish. the very clear line is confirmed diagnosis per the CDC. Can we please start over with a clearly defined proposal, based on what the refs actually say? Jytdog (talk) 04:00, 25 June 2017 (UTC)

Added a line to clarify. MEDRS sources do say that PTLDS is sometimes referred to as chronic lyme just that PTLDS is prefered. I have provided some sources. Doc James (talk · contribs · email) 04:05, 25 June 2017 (UTC)

This is not "broadening", it is refocusing, and dramatically. The article would also need to be renamed, to do what you want to do here. The terminological confusion is somehow fitting. You need to provide post 2007 MEDRS sources to support your assertion that "chronic lyme" is actually used in mainstream medicine to refer to PTLDS. The CDC ref does not support that assertion. When they say "sometimes called "chronic lyme" they do that once to give a nod to the lunatic charlatans. They do not use "chronic lyme" medically. Their page is called 'Post-Treatment Lyme Disease Syndrome" and that is the term they use throughout. Jytdog (talk) 04:24, 25 June 2017 (UTC)

• The most recent IDSA guideline on the topic which is from 2006 says "Post–Lyme disease syndrome, posttreatment chronic Lyme disease, and chronic Lyme disease. Post–Lyme disease syndrome, posttreatment chronic Lyme disease, and chronic Lyme disease are terms intended to describe patients who have had well-documented Lyme disease and who remain symptomatic for many months to years after completion of appropriate antibiotic therapy"[13] Doc James (talk · contribs · email) 04:38, 25 June 2017 (UTC)
  • We have this 2013 major medical textbook[14] Agree that we should change the name of the article to "post lyme disease syndrome" also known as "chronic Lyme"
  • This 2016 textbook says "Chronic Lyme disease has been renamed posttreatment Lyme disease syndrome by the CDC"[15] So maybe use "previously known as "chronic Lyme""

• • Another major textbook from 2014[16]Doc James (talk · contribs · email) 04:39, 25 June 2017 (UTC)

Are you actually proposing to name the article post lyme disease syndrome" also known as "chronic Lyme" ? Jytdog (talk) 04:51, 25 June 2017 (UTC)

Yes I am proposing renaming the article "Post Lyme disease syndrome" and having the first sentence read "Post Lyme disease syndrome, previously known as chronic Lyme"... I have now provided 5 high quality sources to support such a change. Doc James (talk · contribs · email) 04:53, 25 June 2017 (UTC)

More conceptual mess. What you are proposing to do is change the scope of this article. If we change the scope of the article (which will require consensus, which will be most likely generated by a more clear proposal) then the rename to just "Post treatment lyme disease syndrome" would be fine. PTLDS was never known as chronic lyme. That is alt med advocacy bullshit. Jytdog (talk) 05:04, 25 June 2017 (UTC)

Are you seriously claiming that all these major medical textbooks are spouting "alt med bullshit"? Did you look at "Chronic Lyme disease has been renamed posttreatment Lyme disease syndrome by the CDC"[17]? And what about the IDSA from 2006? Doc James (talk · contribs · email) 05:06, 25 June 2017 (UTC)

This is 2017. Can we just refer to "chronic lyme" like the CDC does. The is history or society and culture, not medicine. The condition is PTLDS. Jytdog (talk) 05:10, 25 June 2017 (UTC)

Not sure what you are proposing? Doc James (talk · contribs · email) 05:16, 25 June 2017 (UTC)

Again, you are making a complete conceptual muddle here; trying to do this, in this way, will make dealing with alt med advocates almost impossible. The NEJM articles gives no credence to the term "chronic lyme" - it is called A Critical Appraisal of “Chronic Lyme Disease” and it shreds the use of the term. You are not listening to me or to the sources. See below. Jytdog (talk) 15:26, 25 June 2017 (UTC)

We appear to disagree regarding the scope of the term "chronic Lyme". I view it to be a synonym of PTLDS which has been co opted and used inappropriately by alt med folks. Doc James (talk · contribs · email) 18:32, 25 June 2017 (UTC)

However we got here, in the actual universe of 2017, mainstream medicine does not use the term "chronic lyme". Mainstream medicine has abandoned this term. What you are doing here is re-muddying it. Can we please close this thread and discuss below. Jytdog (talk) 18:42, 25 June 2017 (UTC)

So are you saying that 2016 is too old? That I need to find a 2017 source? What I have posted here is basically the exact same as what you have posted below. Doc James (talk · contribs · email) 18:46, 25 June 2017 (UTC)

Here is Conn's Current Therapy 2017[18]. Cannot get any more recent than that. Doc James (talk · contribs · email) 18:53, 25 June 2017 (UTC)

Holy cow. Conn's is so woo-friendly on this - they talk about the crappy PCR diagnostics like they are valid. Jytdog (talk) 19:04, 25 June 2017 (UTC)

There are no recent refs that treat this under "chronic lyme"; yes there are many that say "also sometimes called 'chronic lyme' and what they are nodding to is the alt med conceptual mess that your proposal simply furthers. I understand that you cannot see that you doing this.

Bottom line, is if you feel that what you are proposing here and what I am proposing below are the same, then you should have no problem carrying this forward below. May I close this section. Jytdog (talk) 19:00, 25 June 2017 (UTC)

I am not sure where we disagree to tell you the truth. The current and proper term is PLDS. Chronic Lyme is often used as a synonym but is not prefered. Our article should reflect that.Doc James (talk · contribs · email) 19:06, 25 June 2017 (UTC)

where we disagree is that: 1) in my view mainstream medicine walked away from discussing "chronic lyme" and its conceptual muddle and uses PTLDS. "chronic lyme" =/= "PTLDS". The nods to the term "chronic lyme" are only to reference the controversy in popular media -- very ref you have brought (save Conn) does this. 2) You are saying that mainstream medicine actually uses the term "chronic lyme" - that this is a legitimate term in medicine. That is the disagreement. Jytdog (talk) 19:45, 25 June 2017 (UTC)

I am stating that mainstream medicine says that "chronic lyme" is sometimes used as a synonym for PTLDS. While they acknowledge it as a synonym they generally use the more correct term PTLDS. This is slightly different than your summary of my position. You appear to be saying that PTLDS and CLD are never used as synonyms in the mainstream press. Doc James (talk · contribs · email) 20:41, 25 June 2017 (UTC)

I never said anything even close to "PTLDS and CLD are never used as synonyms in the mainstream press." Not once. Not even close. What is going on with you. Jytdog (talk) 21:48, 25 June 2017 (UTC)

And I never said "mainstream medicine actually uses the term "chronic lyme" - that this is a legitimate term in medicine."

So do you agree that the mainstream scientific press uses "PTLDS and CLD sometimes as synonyms"? Doc James (talk · contribs · email) 21:52, 25 June 2017 (UTC)

You are changing terms again. "Mainstream press" is not "mainstream scientific press".

I hear the slight difference in your description - your use of the passive voice ("is used") is the point. Mainstream medicine does not use (active voice) "chronic lyme" as a synonym for PTLSD. The MEDRS literature does acknowledge that "chronic lyme" is used - it is used by alt med and by the mainstream press to discuss the alt med controversy. "chronic lyme" is not a medical term. If we can agree on that we are good to go. Jytdog (talk) 21:57, 25 June 2017 (UTC)

Yes you did insist that "chronic lyme" is a valid synonym. Here are just three diffs, there are more.

• dif The two terms "Post-treatment Lyme Disease Syndrome" and "chronic Lyme disease" are used interchangeably by the CDC.
• diff Chronic lyme does not JUST refer to cases without evidence of past infection
• diff "Chronic Lyme disease" is used as a synonym for “Post-treatment Lyme Disease Syndrome” per the CDC source I have sited.

- Jytdog (talk) 22:03, 25 June 2017 (UTC)

I have insisted it is sometimes used as a synonym, yes. Agree it is a less prefered synonyms so I would adjust the first of my statements you quote to reflect that less prefered status. Chronic Lyme is also used sometimes to refer to cases with evidence of past infection.[19] Doc James (talk · contribs · email) 22:56, 25 June 2017 (UTC)

Well they are synonymous in as much as there is only one legitimate diagnosis.

As far as I'm aware there is some controversy as to whether PLDS/PTLDS persists more than 12 months — or if it is a type of medicalization of what are natural aspects of life. The sources I linked above state that in groups followed more than 12 months the rate of symptoms was no higher than those who had never had Lyme disease. Carl Fredrik ^talk 03:22, 26 June 2017 (UTC)

:I think that it might be helpful to everyone else if you two slowed down your responses. One or two replies per day ought to be enough. WhatamIdoing (talk) 02:30, 26 June 2017 (UTC)

FRINGE

We never finished the discussion above, about making this article focus on debunking a "society and culture" myth or about something that actually occurs, medically.

This is a hybrid thing that should not remain in this awkward and ambiguous state. Jytdog (talk) 23:11, 3 November 2017 (UTC)

I say we split it. We have one article about the fringe and one about PTLDS. We have a hatnote at the top directing people to the correct one. Doc James (talk · contribs · email) 15:27, 13 November 2017 (UTC)

Recent changes

User:Neurosurgeon2be123, about

• this 16:23, 7 May 2018
• this 16:26, 7 May 2018
• this 21:28, 7 May 2018
• this 15:31, 10 May 2018

Your edits are being reverted by bots and by other people, because they violate Wikipedia's policies and guidelines. Most importantly content about health needs to summarize the reliable sources about this topic; reliable sources for this topic are defined in WP:MEDRS. If you don't understand, please ask. Jytdog (talk) 15:39, 10 May 2018 (UTC)

Unnecessary and problematic: "paranoid leftist fervor"

I find it odd the use in WP of a quote that equals the promotion of an imaginary disease with a current political leaning. It is disrespectful and even insulting. The offending line appears at the end of the article and comes from an otherwise well-deserved critical review of a quackery film:

• "[Under Our Skin] embraces, with bits and pieces of skimpy evidence and a whole lot more paranoid leftist fervor, the notion that “chronic Lyme disease” is a condition that the medical establishment is locked in a conspiracy to deny the existence of."

I am all for the criticism of the film, except the use of that line, or at least that section of the sentences, which is actually unnecessary to carry the message. 2601:5C0:C000:DDFA:99DE:8423:332E:958F (talk) 05:54, 5 February 2018 (UTC)

• It's what the source says. Not sure this is our problem to fix. Guy (Help!) 12:44, 5 February 2018 (UTC)

So you agree with all the other potentially insulting parts, but not the part that offends you? It seems a fitting assessment of the movie. Natureium (talk) 16:00, 5 February 2018 (UTC)

The other parts are accurate. As it happens, so is the "paranoid leftist fervour" comment. It's rife in the world of woo promotion. Guy (Help!) 18:41, 5 February 2018 (UTC)

• Part of the initial reaction to my concern comes dressed in the cynicism that has become common in this Talk page, and that is a pity. No, the quotation does not offend me in the manner you think because I am just a visitor here and have no direct relation to the references, but it concerns me as it relates to the type of speech WP promotes.

My main argument: this is a quote that equals the promotion of an imaginary disease [to] a current political leaning [in the US].

If this quote would have debased groups I oppose in my country, I would have also found it insulting and offending. After all, it is debasing.

And the quotation is totally our responsibility regardless of what the source says. First, there are countless of other critical reviews that carry a more dignified speech and fit here, perhaps even better. For example:

"A partisan film such as this," Mr. Baker wrote, "can only undermine public health by encouraging naïve individuals to seek unproven remedies to relieve symptoms that, though deserving of appropriate medical treatment and care, may well have nothing to do with Lyme disease."

References

Second, as I mentioned above, the original (and long-winded) quotation does not need the offending words in order to deliver its message. For example:

[Under Our Skin] embraces... the notion that “chronic Lyme disease” is a condition that the medical establishment is locked in a conspiracy to deny the existence of. The filmmakers actually bungle what should have been their real subject (that the belief in chronic Lyme disease has become something of a cult, one that can ruin the lives of the people who think they have it). But the bottom line, to me, is that Under Our Skin is not a very well-made movie.

I would not pretend to push against consensus and would only move "boldly" in specific contexts, so I am just offering my suggestion for a more neutral language in an article prone to attract acrimony by its very nature.

2601:5C0:C000:DDFA:6560:A192:B43C:582A (talk) 01:44, 6 February 2018 (UTC)

We are quoting a source. This is not our problem to fix. Guy (Help!) 09:00, 6 February 2018 (UTC)

Agree. To be fair the source might as well have said "paranoid right-wing fervor" but by the horseshoe theory it's all the same kind of thing anyway. Nothing to do here. Alexbrn (talk) 09:20, 6 February 2018 (UTC)

"We are quoting a source," indicates a conscious decision, a selection among many. And the horseshoe theory actually proves my case. No matter of whom you are talking about, whether of those you despise or you admire, in this medium (WP) we should include text that is as neutral as possible, and this text is definitively not neutral WP:NPOV. I believe that keeping it is a tacit agreement with the offensive language, or worse, a disregard to the long-term effect that such language produces. But if there is no one seeing my point, I rest my case. User:JzG Thanks for reformatting the citation. 2601:5C0:C000:DDFA:6C0F:FFDC:DB49:FB83 (talk) 15:37, 6 February 2018 (UTC)

fwiw, part of the conspiracy theory the movie discusses, is that resistance to the existence of "chronic lyme" and to "treatment" with long term antibiotics is driven by the financial interest of the pharma industry (namely, IDSA is in pharma's pocket). that is what the phrase is summarizing; it is not just gratuitious or based on nothing. Jytdog (talk) 15:43, 6 February 2018 (UTC)

User:Jytdog The criticism you referred to about the film is worth a ton, which, unfortunately, is not so clear in that specific quote with an unprovoked, rude and unnecessary retort. Rather than finding ways to justify the language's status quote in this article, we should think about accepting constructive criticism that would improve it. Keep in mind that the words I am referring to are not simply offensive, but misleading. Beside calling leftists irrational, these words characterize the "left" as the one behind this movement, which is just in the imagination of the reviewer. A better quote or the shortening of the existing one would be a small step, but it would take us in the right direction. 2601:5C0:C000:DDFA:3812:3DB6:9EF1:ACF7 (talk) 02:49, 7 February 2018 (UTC)

the phrase is all connected - "paranoid leftist fervor". If you or anyone else takes that as a slam on all leftists (or some claim that all paranoid people are leftists) there is nothing anybody can do about that. What I would suggest, would be to find a review that is of equal or better quality that discusses this in a way that pleases you better and suggest that. Better content based on stronger sourcing is almost always acceptable to everybody. Jytdog (talk) 03:42, 7 February 2018 (UTC)

Thanks! But of course that there is something that we "can do about that," namely, to follow your own suggestion at the end, which is a good one. I am surprised at how difficult is to see how others may feel about the language used here. This quote was brought to my attention by friends and colleagues as an evidence of the editorial sloppiness in some of the WP articles. I am a long-time editor in the Spanish WP back at home and felt the criticism aimed too close to me. But, honestly, this seems a pattern among many of the new and contentious articles. Hopefully, someone may find a better quote or I would find the time to research the topic. 2601:5C0:C000:DDFA:3812:3DB6:9EF1:ACF7 (talk) 10:23, 7 February 2018 (UTC)

The fact that you don't like this criticism doesn't make it any less valid. Antivax, anti-GMO and alt-med conspiracies are predominantly found in the political left - the right goes instead for chemtrails, Illuminati, gunwankery and the like. Both sides of the political spectrum have favoured forms of bullshit, the horseshoe effect does exist, but nonetheless, it is not at all uncommon for surces to ascribe a particular form f bullshit to one side or another, and not a problem to cite them doing so. Guy (Help!) 13:16, 7 February 2018 (UTC)

It's a grotesque distortion of Wikipedia principles to pretend that "The source said it" makes it okay to "quote" a synthesis of a scientific conclusion with an unrelated political conclusion that you happen to like. Bluntly, it's horse offal to pretend that "Someone said it" is a valid reason to fight to keep a POV quote you like and exclude a more-relevant non-POV quote.

If I found a Reliable Source quoting someone who says "Stress and rage can be correlated to testosterone imbalance and ED, which explains a lot about right-wingers", would you support it as a scientific conclusion in an article about ED? No -- you'd be outraged, and correctly so. But here, because "leftists" are the target, you fight to keep in a slur that's extremely irrelevant to the article.

I invite your commentary on where in your article it has been demonstrated that "paranoid leftists" are relevant to Lyme disease. Not a quote that tangentially synthesizes the two, an actual reason that explains how two apparently-completely-unrelated subjects are actually related. And I note for the record that deleting others' talk page comments is still, as far as I know, an unequivocal gross violation of Wikipedia's rules (except for compelling exceptions such as doxxing and BLP). 2603:3023:312:E200:C481:EC98:C9DF:6604 (talk) 20:03, 18 June 2018 (UTC)

I should also note for the record that I am 'NOT the same person who's been (futilely) arguing in favor of reason up to now. I hope they're not anywhere nearby geographically, because I would hate for there to be any reason for someone to falsely claim otherwise. Ad hominem does no one who's acting in good faith any good. 20:10, 18 June 2018 (UTC)~

We are quoting a mainstream review of a paranoid conspiracist propaganda movie. Unsurprisingly, the review is less than flattering. This is not our problem to fix. Guy (Help!) 20:34, 18 June 2018 (UTC)

Is the subject of your article a "paranoid conspiracist propaganda movie"? No? Also, you're not answering the question of how political slurs are relevant to the science of whether Lyme disease has sequelae. 2603:3023:312:E200:A09A:2576:C045:6662 (talk) 19:42, 19 June 2018 (UTC)

Again, you nailed the core issue when you said that you're quoting a movie review. How on earth is a political slur in a movie review supposed to be germane to the topic of whether Lyme disease has sequelae? If the political slur that you seem hell-bent on keeping isn't germane to that topic, then why do you think it adds value to the article? 2603:3023:312:E200:ED7D:5CEF:1446:2A1D (talk) 10:12, 20 June 2018 (UTC)

Simplification

I think this article could use a lot of simplification because I imagine the target audience isn't likely to be someone who knows anything about modern medicine or science. I'll work on this, but other contributions would be helpful. Natureium (talk) 23:11, 22 June 2018 (UTC)