Talk:Primary biliary cholangitis/Archive 1

Untitled
Whoever keeps on working on this page - how about getting a Wikipedia username? I'd like to communicate about your very good edits. JFW | T@lk  14:23, 19 Dec 2004 (UTC)
 * I believe you are refering to me whose IP begins with 6. Henceforth you may find me as User:GangofOne. Vangelis fan? Me, too.
 * See your talkpage :-) JFW | T@lk  08:16, 9 May 2005 (UTC)

Source
Some updates may be done on the basis of Kaplan & Gershwin's 2005 review in the NEJM. JFW | T@lk  22:19, 21 January 2006 (UTC)

what is "rare"?
Berfore it said: "It is a rare disease, about 200 out of a million;" Now, (Jan 2007) it says: "It was previously thought to be a rare disease, but more recent studies have shown that it may effect up to 1 in 3-4,000 people;" But 200/1000000 is 1/5000 which is close to 1/4000. Does that count as rare or not? GangofOne 20:38, 11 February 2007 (UTC)

ANA Negative
Can someone speak to the cases in which the antibody blood work is negative and the liver biopsy is inconclusive? The differential diagnosis given is sarcoidosis because of the presence of granulomas in the tissue sample taken; however, this did not rule out the initial diagnosis of ana negative primary biliary cirrhosis. Has anyone any information with regard to ana negative primary biliary cirrhosis?Teckelrwe2 18:06, 13 July 2007 (UTC)
 * You mean AMA negative? This tends to be a autoimmune cholangiopathy-like picture. JFW | T@lk  19:02, 1 August 2007 (UTC)

Reverse transcriptase
Could it be a retrovirus? gives some results. JFW | T@lk  19:02, 1 August 2007 (UTC)
 * Concurring with that is the overexpression of nup210 in anti-gp210 positive disease. . A retroviral promotor may have found its way around the coding region of the gene or some other regulator.Pdeitiker 21:26, 5 August 2007 (UTC)

DOI:Not found. —Preceding unsigned comment added by 128.32.146.96 (talk) 03:33, 17 September 2007 (UTC)

Urso
The Danish Cochrane people have again destroyed ursodeoxycholic acid as a prognostic modifier: JFW |  T@lk  07:33, 7 August 2007 (UTC)
 * "again"? I missed the first time. Please give ref. (it's a matter of life or death). —Preceding unsigned comment added by 128.32.146.96 (talk) 03:37, 17 September 2007 (UTC)
 * I meant that the Danish Cochrane people have been rather good at dynamiting the evidence base for many gastro treatments. JFW | T@lk  17:17, 15 November 2007 (UTC)

which role is hepatis B vaccine playing?

 * That article is about flu vaccine. JFW | T@lk  17:18, 15 November 2007 (UTC)

Pathogenesis
PMID - Gut 2007 JFW | T@lk  18:20, 16 October 2007 (UTC)


 * Of course I meant . JFW | T@lk  17:17, 15 November 2007 (UTC)

PBC Information
Please go to PBCers.org. There is a lot of updated information (2009) and a great daily newsletter. http://www.facebook.com/editphoto.php?aid=-3#!/group.php?gid=132049336823743&ref=mf http://www.facebook.com/PBCers UK]

antiviral therapy
I cant access the full review but I have this abstract....could someone with access please include this in the wiki page... http://www.ncbi.nlm.nih.gov/pubmed/20580176 86.130.61.153 (talk) 17:27, 28 December 2010 (UTC)

Ask reopening of PBC Foundation article merger discussion
I have voiced my support to stop the merger, at the administrator's Talk page, as the process took place too quickly, and Jrfw was inexperienced at mediating the necessary consensus building away from a strong, limited editor push to delete. I have asked for a properly formatted, more full list of "Further reading" sources from Jrfw, but I think there is a clear case that the organization is notable, based on reports I have seen. I will let him do the legwork, but ask others to go Sandstein's talk page and express your support for slowing this down. The primary medical condition articles are distinct, and do not need to become bloated or redirected with the distinct content and issues contained in charitable foundation pages. Cheers. Le Prof. Leprof 7272 (talk) 17:04, 28 July 2015 (UTC)


 * Quoted by Cambridge University as authority regarding its research publication, see


 * Organization as agent relied upon to identify and recruit PBC patients for an HRQOL study, see, accessed 28 July 2015.
 * Organization as agent relied upon to identify and recruit PBC patients for a study of risk factors in the U.K., see and  accessed 28 July 2015.
 * Quoted by Wellcome Trust Sanger Institute as authority regarding its research publication, see and, accessed 28 July 2015.
 * As host of Scottish and broader PBC fundraising events in the U.K, see, accessed 28 July 2015.
 * As a significant contributor to the UK-PBC National Study, see, accessed 28 July 2015.
 * As a principle mover in the ongoing name change, recognized y scholarly organizations, see, accessed 28 July 2015.


 * Search foundation in each of these preliminary citations. The fact that it is a stub article in need of improvement does not mean it is not a notable subject. Far poorer articles exist broadly at this encyclopedia. FInally, that fact that it is not as notable as the ACS in America, to Americans, does not mean it is not notable. Bottom line, keep it, and keep it separate. Leprof 7272 (talk) 17:16, 28 July 2015 (UTC)

A section has been created at the incoming article page
…for interested editors to express your opinions regarding whether to merge in the material of the PBC Foundation, into this article. Go here to express your opinion, (talk) 18:44, 30 July 2015 (UTC)


 * Merging the article I created on one of the PBC charities PBC Foundation into this disease article seems inappropriate, although referring to work it has supported is welcome. Express opinions at the link above. Jrfw51 (talk) 22:04, 30 July 2015 (UTC)


 * PER THE ADMINISTRATOR INVOLVED, THIS MATTER REMAINS IN DISCUSSION. PLEASE DO NOT DO ANYTHING TO ADVANCE THE MERGER. SEE THE RELEVANT TALK SECTION AT USER:SANDSTEIN, . IT WAS HE, THE ADMIN OVERSEEING THE EARLIER DISCUSSION, THAT ADVISED THAT FURTHER DISCUSSION WAS ALLOWED AND COULD PROCEED. THE BROAD CONSENSUS THAT IS SUGGESTED, IS AT BEST, CURRENTLY ABOUT TWO EDITORS ON EACH SIDE. STOP VIOLATING THE ADVICE OF THE ADMIN, AND THE SPIRIT OF WIKIPEDIA, BY TRYING TO FORCE AN INDIVIDUAL AGENDA FOR ARTICLE ELIMINATION. I WILL TAKE THIS TO ADCOM, IF IT CONTINUES THAT OTHER EDITORS FAIL TO (I) LOOK FOR TRUE CONSENSUS ON A MATTER, RATHER THAN STICKING BY THE "MATTER IS CLOSED" LAWYERING, AND/OR FAILS TO (II) AGF, AND TREAT DEDICATED, INFORMED FELLOW EDITORS WITH DUE RESPECT.  LE PROF  Leprof 7272 (talk) 01:47, 2 August 2015 (UTC)


 * Please stop yelling, Leprof. There was a valid AfD and a valid close.  What Sandstein actually wrote, was "Right. So we have a consensus to merge in that discussion. That's an editorial decision. If you go to Talk:Primary biliary cirrhosis and convince the editors there to form consensus that it should not be merged, or unmerged, you're good. Otherwise I can't help you."   You don't have anything near a consensus to not merge or to unmerge at Talk:PBC Foundation nor here. Jytdog (talk) 02:25, 2 August 2015 (UTC)

As I have made clear, the all caps are not intended as having a raised voice, they are intended to ensure that you see and respond. The same request was made repeatedly, in lower case, but you did not respond to them, and instead, did precisely what I asked you not—remove the PBC Foundation page before the renewed discussion could draw a sustaining or revised conclusion, that is, before a true consensus was achieved.

Thank you for making clear, that per the Admin who oversaw the original discussion, that it was not necessary that the merger proceed, that further discussion could take place, and that a differing outcome could ultimately take place. At issue is your heavy-handed closure of that subsequent discussion, that — rather that AGF, and express respect for two fellow editors — you proceeded to remove the PBC Foundation page, and so to cut off discussion (or at least confuse it), rather than giving us the time needed to arrive at a true consensus.

Also at issue is your poor early treatment of the novice editor, Jrfw51, who was resisting the merger, but was clueless how to deal with your disrespect toward him, and your win-at-all-costs approach to that discussion.

I have said my last at your talk page. If you want things to proceed editorially, the put the PBC Foundation page back up, and let discussion continue. I had placed a couple of general requests for input at other Project pages, and now these folks will find a disappeared page. You are squelching discussion, and disrespecting other editors, new and old. Replace the page, and it remains an editorial matter. Otherwise budget time for the further behavioral discussion. Le Prof Leprof 7272 (talk) 02:50, 2 August 2015 (UTC)
 * Please read WP:SHOUT. And perhaps WP:CONSENSUS too.  To translate what Sandstein wrote - consensus to merge was found at the AfD.  That is done.  If you can win a new consensus here, to not merge or (assuming the merge happened, which it has) to unmerge, then that can happen.  So what you should do now is try to build consensus to unmerge.   Your best bet to win consensus to unmerge, or by now, WP:SPLIT, would be to build up the current content that is now here, to the point where a SPLIT is natural.  When I did the merge, I used all the good sources that were there, and in my view the current content is what is supportable with independent, reliable sources. But perhaps there are more.  Or at some point in the future there will be more. Jytdog (talk) 03:17, 2 August 2015 (UTC)
 * The matter is only an "un-merge" discussion, because you proceeded rapidly to delete the page and accomplish the merge—knowing that I, a newcomer to the matter, had sound editorial objections.


 * And, apologies for marginalizing your clear lawyerly concerns, but your behavioural lectures are lost on me, despite your ability to quote chapter and verse. You ignored repeated lower case attempts to engage you in dialog, asking you clearly, "allow discussion to continue." Instead, you proceeded to delete the Foundation page despite being asked explicitly not to (because it would confuse the discussion for new incoming parties). And you wonder why on asking a final time for you to not delete the page, I resorted to upper case to get your attention?


 * Moreover, and critically, I saw how you treated the independent, novice editor that tried to engage you in the initial deletion/merger discussion. Your zealotry for article purity confuses both technical issues (are there any citations, and are they good enough), and overwhelms your commitment to WP standards of treatment of young editors, clearly. I have as much or more experience, professionally, and here, vis-à-vis judging the quality of organizational sources, and science organizational sources. The quality of sources for this foundation—sources you did not bother to find—allowed me to begin taking steps to improve the article. ''You bulldozed past these, clinging to the legality that you had the permission you needed to delete, and so disregarded and disrespected two fellow editors (at that stage, still communicating in lower case).


 * So forgive, if I say, your WP:THIS and WP:THAT, however legally sound it might be, in spirit rings very hollow.


 * ''I have stated my "peace". Please return the Foundation article to the main article space, so that all editors, experienced and inexperienced, can easily find it, so that the merger can be discussed, and a final decision made. Or as I said, budget time for explaining this all to a group of impartial admins and fellow editors. Cheers. Le Prof  Leprof 7272 (talk) 03:34, 2 August 2015 (UTC)
 * The AfD cannot be undone by force of will; a new consensus needs to be formed. If you are able to win that consensus, of course the unmerge can happen.  That's the last response I'll make about this issue.  Let's see what others have to say: I don't reckon it will be much different with regard to this issue.   Jytdog (talk) 03:54, 2 August 2015 (UTC)
 * Having details about this charity within this page will likely increase readership of the content. Doc James  (talk · contribs · email) 13:09, 2 August 2015 (UTC)

Please see my comments at Talk:PBC Foundation. Jrfw51 (talk) 11:50, 4 August 2015 (UTC)

Links to charities
We do not typically link charities in the ELs per WP:ELNO as they do not provide a unique resource. Doc James (talk · contribs · email) 06:51, 9 July 2015 (UTC)
 * They do however provide a fuller and unique insight into the personal issues relating to the disease which may not be appropriate to expand fully in the main article and are particularly relevant to this name change initiative. Some have been referenced. Presumably these organizations could have their own entry. You have left the American Liver Foundation, another but less specific charity.  Diabetes for instance also links to the American Diabetes Association. Ulcerative colitis links to Crohn's and colitis foundation of America (CCFA).  WP:ELNO seems to allow exceptions.  Please reconsider.  Jrfw51 (talk) 07:33, 9 July 2015 (UTC)
 * Have trimmed all those charities aswell. We already link to these charities as references. Putting them in an EL section is kind of spammy IMO. Doc James  (talk · contribs · email) 08:04, 9 July 2015 (UTC)
 * Have now created an entry for the PBC Foundation. Would someone like to do the same for PBCers? Jrfw51 (talk) 09:23, 12 July 2015 (UTC)
 * Okay if their are sufficient refs for them. Doc James  (talk · contribs · email) 17:52, 12 July 2015 (UTC)

Not rare?
The second paragraph says that PBC is not rare, but then states that the frequency is 1/3000 - 1/4000. At that rate, it's rare by most standards, including much of the range described in our article on Rare disease. I have not accessed the cited reference - does it clearly state that PBC is not rare? soupvector (talk) 04:27, 20 September 2015 (UTC)
 * See Rare Diseases Act of 2002; there are other definitions, but I think similar. Johnbod (talk) 04:57, 20 September 2015 (UTC)
 * I've amended this to "relatively rare" and cited better refs. At fewer than 1:1000 there will be <200,000 adults in the US and so could be a Rare Disease by US definition but it is not part of the US Rare Disease Clinical Research Network. The European definition is a prevalence of < 1:2000. But it appears patient and research groups think it is less rare than this.  Jrfw51 (talk) 08:59, 20 September 2015 (UTC)
 * A European definition - don't take that as definitive. Johnbod (talk) 18:59, 20 September 2015 (UTC)
 * Haha! See here. Jrfw51 (talk) 20:00, 20 September 2015 (UTC)

Name change
The proposal to change the name of this disorder to Primary Biliary Cholangitis has gained support in 2014 and 2015 and Rgishsd performed a big edit on April 6, 2015. This change has been justified as needed because most patients with PBC do not have cirrhosis when diagnosed and the case for this is well described at. However WP is not an advocacy organization, however good the case may be, and I have been unable to find any peer-reviewed articles which use the proposed term. Furthermore, no changes in the reference titles can be made.

I suggest using the term PBC, with historical context and updated references as and when there are good sources. I will create a link from a new page Primary biliary cholangitis to the current PBC page.Jrfw51 (talk) 16:16, 6 April 2015 (UTC)
 * The disease is still called mostly "primary biliary cirrhosis". While I understand a new term may be coming agree we should wait until it is here to change the name of the article. Have altered the first sentence.
 * Also per our MOS we should use "primary biliary cholangitis". Best Doc James  (talk · contribs · email) 18:49, 6 July 2015 (UTC)
 * jytdog, Doc James. There is now a mainstream press article  on PBC and the Foundation using the new name.  I have referenced this and I have rebolded primary biliary cholangitis in the lead.  I don't think it is yet time to move the article until the medical press has started using it.  Jrfw51 (talk) 10:04, 11 August 2015 (UTC)
 * Daily Mail is an infamously bad source. See the many discussions at RSN. Jytdog (talk) 10:41, 11 August 2015 (UTC)
 * I have looked at the debate at RSN. It may not be what you or I choose to read but it is the most widely read paper and internet site (by women, so I am told) and this use is pretty uncontroversial! But there is no hurry and there may be other sources. Jrfw51 (talk) 10:52, 11 August 2015 (UTC)

Please do not use the daily mail. It is basically a tabloid that has no place in a medical article. Good sources will come if and when this new name gains sufficient traction. Doc James (talk · contribs · email) 13:15, 11 August 2015 (UTC)
 * Articles on name change now in Gut, Hepatology, J Hepatol, Can J Gastroenterol Hepatol - and a mention of the name in the popular non-medical press (Mail on Sunday) which is appropriate for Society and Culture if not for MEDRS. Jrfw51 (talk) 11:03, 18 September 2015 (UTC)
 * This has been reverted by Jytdog without evidence that he has read the articles. He justifies this by saying this is advocacy.  I have written on his talk page.  Please comment on your interpretations of the journals, the article and the professional reputation of the AASLD etc. Jrfw51 (talk) 14:31, 18 September 2015 (UTC)


 * None of the standard databases in the infobox use the new name, suggesting that for now at the most it should be given as an alternative in the first line. Wherever it is it should be bolded, as it redirects here. Johnbod (talk) 15:21, 18 September 2015 (UTC)
 * Please see the related discussions at jytdog and WT:MED. Let's try to reach consensus here.
 * This new name has only very recently appeared in the verifiable scientific literature and will not have made it into other databases yet. It will never be in ICD10 for instance as new nomenclature for ICD11 is now being sought.  There are many instances where disorders are known by several names which have changes over time.  I agree that at present WP should keep the currently recognised name as the article's title, and it is appropriate to have the redirect from the new name which should be bolded in the lead.  The lead needs to be changed, as the new name is now in the scientific literature.  Under the Society and Culture section, I had written (again) a brief description explaining the name change.  I am not advocating this (see my first post in this thread) but just trying to document what has now been agreed by the American and European professional liver organisations and by all the main journals where the leaders in this disease have asked for the new name to be used and the editors agreed to the multiple publications.  Jrfw51 (talk) 12:56, 19 September 2015 (UTC)

No more details on the name change is needed in the lead. Further details could go in the society and culture section though. Doc James (talk · contribs · email) 21:21, 19 September 2015 (UTC)


 * DOI for Gut article 10.1136/gutjnl-2015-310593 JFW &#124; T@lk  13:13, 8 October 2015 (UTC)

Lancet seminar
10.1016/S0140-6736(15)00154-3 JFW &#124; T@lk  14:12, 19 October 2015 (UTC)

PBC level of technical information
I agree the need for the changing of this article into less technical terms, whist maintaining its technical integrity.

I am unfamiliar with the inner workings of WP but would still like to help.

Newbie

CtotheJ (talk) 10:01, 24 January 2017 (UTC)
 * Sounds good. WP:MEDMOS is a good read to start with. Doc James  (talk · contribs · email) 01:29, 25 January 2017 (UTC)

Name Change in 2017?
Is it now time for WP to recognise the change in name too? I would suggest swapping the lead to "Primary biliary cholangitis, previously known as primary biliary cirrhosis, ..." or just use this word order with "also known as ...". For good qualilty sources, please look at:     I would propose the article name is also changed, with the redirect changing to be from "primary biliary cirrhosis" to "primary biliary cholangitis". Thanks.Jrfw51 (talk) 18:35, 21 January 2017 (UTC)
 * ICD10 as of 2016 still uses
 * I am supporting of changing at this point in time to "Primary biliary cholangitis" Doc James  (talk · contribs · email) 18:39, 21 January 2017 (UTC)
 * i agree. let's give this a few more days and see if anybody else weighs in. Jytdog (talk) 10:07, 23 January 2017 (UTC)
 * I would suggest "Primary Biliary Cholangitis, formerly known as Primary Biliary Cirrhosis." There is a precedent for this.  I'm not sure what information you need to support this, but please let me know.  Newbie. CtotheJ (talk) 09:53, 24 January 2017 (UTC)


 * Likely we will go with "Primary biliary cholangitis, also known as primary biliary cirrhosis," The older term is still used and will be for some time. Doc James  (talk · contribs · email) 23:20, 24 January 2017 (UTC)
 * shall we pull the trigger on this tomorrow? Jytdog (talk) 00:13, 25 January 2017 (UTC)
 * Yah that is about a week. Doc James  (talk · contribs · email) 01:27, 25 January 2017 (UTC)
 * Can someone with plenty of experience perform the name change in order to keep the previous edits and discussion. Not sure my WP skills are up to this!  Thanks to all who support this now.  Jrfw51 (talk) 10:34, 25 January 2017 (UTC)
 * Sure will do. Doc James  (talk · contribs · email) 05:37, 26 January 2017 (UTC)
 * I would argue that "also known as" will create confusion. Whilst the old name will still be in use, phrasing such as "also known as" will encourage use of the out dated term.  Cambodia, also known as Kampuchea, would be just as unhelpful.  I would advocate for "formerly known as." There is precedent for this.  I don't know how to reference but any look at EASL or AASLD recent publications on PBC will show you that this wording is common practice. CtotheJ (talk) 10:54, 27 January 2017 (UTC)
 * People will still call it "Primary biliary cholangitis" for a long time to come so it is the correct way to say it. Formally known as is simply not correct. Doc James  (talk · contribs · email) 11:03, 27 January 2017 (UTC)
 * I think this is not such a big deal. Personally I would have preferred "previously" or "formerly" but you may want to wait until ICD10/1CD11 has caught up with this too.  There is a good precedent in Granulomatosis with polyangiitis where Wegener's disease has been replaced: we use "previously known" there, but the old name features prominently. Jrfw51 (talk) 11:28, 27 January 2017 (UTC)