Talk:Lupus

UVA1 phototherapy

24.14.35.45 (talk · contribs), self-identified as the author of Anthony DeBartolo (2004). Lupus Underground: A Patient's Case for a Long-Ignored, Drug-Free, Non-Patentable, Counter-Intuitive Therapy That Actually Works - UVA1 Phototherapy. Hyde Park Media. ISBN 0-9763428-0-4. has left a note on my talkpage to ask why I have repeatedly removed mention of UVA-1 treatment. To clarify here: there is no evidence that this treatment is anywhere beyond early clinical trials, and is not yet in widespread clinical use. Failing corroboration on its popularity from independent sources, I don't think UVA-1 phototherapy should be mentioned. JFW | T@lk 16:23, 11 July 2008 (UTC)

correction - i've left more than a note on your talk page Jfdwolff...but if you wish to move our discussion to this page, no problem.

if nothing else, i think UVA1 needs to be included under "Treatment research" (even though it's used off-label today) since what many of the trial drugs are attempting to do, we already know UVA1 does.

i invite all to read the most important chapters of 'Lupus Underground' here: [1] (password = lupuslight) --- especially appendix b - research from 1987-2003...you'll find a few of the more recent studies on the book's website - http://www.lupusunderground.com

how about this entry under treatment research?: "UVA1 Phototherapy - a promisiing therapy that uses ultraviolet UVA1 radiation - long UVA wave lengths that do not promote sunburn and which are thought to block inflammatory immune factors by promoting apoptosis (cell death) in T cells. Several studies, both in the U.S. and Europe, have shown that UVA1 phototherapy lowers disease activity in SLE."

BTW -the "Clearance deficiency" section nicely explains the UVA1 action, but it is unproven....so why is this allowed? this is, however, the same action that makes UVA1 effective for morphea & scleroderma - simply put, it kills immune cells. —Preceding unsigned comment added by 24.14.35.45 (talk) 17:12, 11 July 2008 (UTC)

Spaced for readability. As I've pointed out on your talk page, the question is also one of medically reliable sources (of which your book is not due to the publisher) and undue weight. If UVA1 is a regularly used treatment, then the sources must come from peer-reviewed journals and books published by university or medical press.

Clearance deficiency is referenced to the Journal of Autoimmunity, and there are other references on pubmed that discuss the term (i.e. PMID: 15893710; PMID: 16394661; PMID: 16724805 and a total of 79 searching for "clearance deficiency lupus erythematosus"). UVA1 lupus erythematosus produces 7 hits. This suggests WP:UNDUE; I would suggest working with the reliable sources to build a possible section (perhaps on a sub-page) and requesting a review. Note that "promising" is not neutral (and appears inaccurate as the latest article on pubmed was in 2006), and "several studies" is weasel-wordy. I would suggest citing, linking and summarizing the studies. WLU (talk) 18:27, 11 July 2008 (UTC)

my book may not be a "medically reliable source" but it's filled with medically reliable sources....as i said: appendix b - research from 1987-2003 + my interviews with top experts in the field.

my point about 'Clearance deficiency' (which by the way Dr. Hugh McGrath Jr. pointed out to me when he read it) is not that no one has ever heard of it - Dr. McGrath's point was it has never been PROVEN to be the case in lupus...so please, stop with the straw man technique ....who cares how many "hits" you get for the term -- what do the citations say?

and what in the world does 2006 as being the last pubmed UVA1 hit have to do with anything?

as for use of the term "promising" - fine - change it to "proven" —Preceding unsigned comment added by 24.14.35.45 (talk) 21:08, 11 July 2008 (UTC)

i've posted it under a newly created hed = alt med ...any objections? if so, please explain them...thanks24.14.35.45 (talk) 00:18, 12 July 2008 (UTC)

Please space your posts appropriately per talk page guidelines. You might also want to review undue weight again - we are not obligated to report every possible topic, only the notable ones. It would be particularly helpful if you actually read the policies and referred to them rather than attempting to convince purely through logic, which is considered original research and forbidden. (the three revert rule is also a concern, and I believe you're in danger of violating it).

Your book is not a reliable source, and can not be cited. You can, however, cite the sources it contains directly so long as no original analysis occurs (i.e. you don't cite the articles to re-state the conclusions in your book). Again, I point you to pubmed, where in combination with diberry you can produce perfect, error-free templates. Virtually everything found on pubmed can be considered reliable, and it's a pretty good index of the attention received by mainstream medicine since it's indexed by the national institutes of health, which is itself a reliable source. Little attention by a mainstream indexing entity suggests fringe topics; the NYT only suggests that it may one day be a treatment, not that it is.

Alternative medicine is itself a fringe topic and its status on wikipedia is tentative and contested. You should carefully review WP:UNDUE as that is the main objection to the section in my mind, and discuss how it is not undue weight to emphasize this topic with essentially its own section. That section is not really about alternative medicine, I would consider it a coatrack for UVA1 therapy; retitling a previously removed section does not change the arguments against including the original content.

Per our capitalization guidelines the section title is off (should be lower-case "m"); the citation should also be in the form of an inline citation and ideally using citation templates. Gregory House should also be removed from Systemic lupus erythematosus#See also as vandalism. WLU (talk) 00:57, 12 July 2008 (UTC)

UVA1 is not "alternative medicine". It is an experimental treatment that does not answer to the general definition of "alternative". Could you now stop inserting it until we have arrived at consensus on this page? JFW | T@lk 22:47, 12 July 2008 (UTC)

FWIW, I support a discussion of UVA1 before unilaterally inserting it. I'd be reverting myself were it not for unusual circumstances. Anon, please make a better effort to convince other editors that there is merit to the section; a sub-page would be an ideal location to draft a section and solicit suggestions from more experienced editors. A civil discussion rather than an edit war will result in a better section that will be defended by other editors rather than removed. I would also suggest signing up for an account so it is easier to communicate (and a sub-page would be specifically yours). Thanks, WLU (talk) 01:22, 13 July 2008 (UTC)

thanks for the feedback - and yes, i need to review the guidelines, etc around here, but my god they all seem rather complex at this point ... ..that said, my ignorance of the rules notwithstanding, i don't understand some of the comments -- how is UVA1 not an alt treatment when the accepted standard lupus treatment(s), is, has been & will always be drugs? (drugs treatments are considered standard in western medicine) ...put another way, UVA1 is not approved by the FDA (or any other regulatory body) to treat lupus, yet it is used as a treatment, regardless of the number that employ it --- that seems to qualify UVA1 as an 'alt treatment' by any standard....24.14.35.45 (talk) 15:44, 13 July 2008 (UTC)

BTW -why is my book still being mentioned? i'm not posting it.24.14.35.45 (talk) 15:44, 13 July 2008 (UTC)

you have a section called "Treatment" - the one line intro states: "There are several means of preventing and dealing with flares, including drugs, alternative medicine, and lifestyle changes." ... there are drug & lifestyle sub-heds, but not a word on alt med...your argument that alt med itself is a 'fringe' topic does nothing but help define what the nature of alt med is - treatments on the fringe - that means they are to be ignored? there are peer-reviewed studies that can be cited to back up the effectiveness of a few of these things so why not include them? (for example, even the FDA admits there's plenty of data that supports the effectiveness of glucosamine sulfate in reducing joint inflammation - it's a standard alt treatment for many lupus patients)-- maybe my questions will answered if i can find the time to study your operating procedures, but i've always thought an encyclopedia was supposed to be a comprehensive reference work ...as an outsider i must say your operating procedures really do seem to undermine your usefulness as a comprehensive reference - it's like you're throwing the baby out with the bath water.24.14.35.45 (talk) 15:44, 13 July 2008 (UTC)