User talk:Guido den Broeder/ME/CVS Vereniging

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[edit] links in lead

Note that the links in the lead are the correct ones according to wikipedia, and are not POV - ME currently redirects to CFS, and should therefore link to that article, and The Netherlands is a redirect to Netherlands, so should link directly. The spacing, formatting and capitalization of articles very specifically affects the wikilinks, so a piped link is OK so long as the original link is accurate. Also, the maual of style has specific formats for text within the articles. Please note that irrespective of debate occurring in the outside world, wikipedia is restricted to specific, standardized writing and formatting, and links, text and style should reflect wikipedia formatting, not external debates. WLU 15:23, 22 October 2007 (UTC)

The lead should IMHO be in accordance with the statutes of the association, that's why I changed it back. Regards, Guido den Broeder 15:59, 22 October 2007 (UTC)
Unfortunately, on wikipedia the statutes of the association play second fiddle to wikipedia's rules, though you can take it to a WP:3O or WP:RFC if you'd like. What you can put in is a sourced account of the organization's stand on the similarities and differences between ME and CFS. THAT works, and is a very valid option. The standard for reliable sources would be somewhat lower as well, since the article would be about what the organization thinks, rather than what is true. WLU 16:54, 22 October 2007 (UTC)

[edit] Conflict of interest

Please note possible WP:COI issues with this recent edit sequence. David Ruben Talk 17:16, 22 October 2007 (UTC)

[edit] Notability

See Wikipedia:Notability (organizations and companies). The article needs therefore appropriate secondary sources to establish that it is notable (ie not self-published primary sources). I note the 2nd ref (De Graaf strategie- & beleidsadvies B.V. (2003)) addresess problems with previous ME Association, but nowhere is there yet a secondary source to the notability of this current orgnaisation. All other refs seem to be the organisation commenting on ME/CFS, awareness of the condition or on existing guidelines. At just 247 members, notability needs to be established, both in its own right and for within English Wikipedia (I'm sure we don't have articles on the Spanish, Italian, Russian or Chinese ME association). As an article, it is currently quite well written and I found informative with a reasonable structure :-) but review re above COI, and confirming notability is required. David Ruben Talk 17:37, 22 October 2007 (UTC)

Thanks, David. To begin with, I've added an independent source that confirms the existence of the ME/CVS Vereniging as a recognized national patient organization. Guido den Broeder 18:13, 22 October 2007 (UTC)
Added some more independent sources. Is this sufficient? Guido den Broeder 18:44, 22 October 2007 (UTC)
Is there an English translation? Otherwise it's not very useful for English wikipedia, though if someone who reads Dutch and is familiar with the WP:N policy and org/co. policy comments on the source, that might work. Better would be newspapers, television stories, and other print or electronic publications showing that the organization has done something, well, big enough to merit an article. Ideall in English, but I believe that's not mandatory. WLU 18:59, 22 October 2007 (UTC)
We have footage on Youtube. :) But I think the Verwey-Jonker reference should help. I'm not a big fan of referencing newspaper clippings and I'd have to track them down first, too. There is also a bachelor thesis somewhere that covers the history of the association. Guido den Broeder 19:13, 22 October 2007 (UTC)
Unfortunately, by my reading of WP:N, WP:ORG and WP:RS, only the newspaper clippings (yes, the one source you don't want to track down, sorry) would really work, unless the thesis was published in a scientific journal. The Verwey-Jonker ref (this one?) is again in Dutch, and is also not hyperlinked so I can't assess it. I can't even tell where it is from, is Verwey-Jonker a notable organization? Does it have an english (or even Dutch) wikipage? WLU 19:43, 22 October 2007 (UTC)
This is the Verwey-Jonker institute's website: [1]. This institute is far more notable than 'De Graaf BV' that David considers a good source for the ME foundation. Note also the reference in the article to the CG-Raad. Guido den Broeder 20:19, 22 October 2007 (UTC)
Alright then, added a newspaper clipping. Guido den Broeder 21:00, 22 October 2007 (UTC)
Thanks for trying to address this. In all honesty, as none of refs in English, impossible for me to comment further on how approapriate this might be. I'm out of my depth re Wikipedia policy in advising re topics supported only by non-English references. I would suggest that at least you get the http://nl.wikipedia.org/wiki/ME/CVS_Vereniging version reviewed by other editors - but 1st get that version ungraded as it has less references than this english version ! Might be worthwhile approaching editors here on English Wikipedia who are bilingual and can verify for us anglophiles that the refs support the points they are linked to and fulfill the WP:N etc etc :-) (see list at Category:User nl) David Ruben Talk 22:05, 22 October 2007 (UTC)
I'm no longer active on nl:Wikipedia, but perhaps someone else will upgrade that article when they see the English version. :) Guido den Broeder 22:21, 22 October 2007 (UTC)

This[2] is a pdf of the article referenced. The Vereniging is hardly mentioned in it. The study by the Verwey-Jonker institute looks to me like the kind of study the Vereniging has ordered as a kind of audit. If this is correct, this is not an independent source establishing notability of course. So far, none of the sources given indicate enough notability to meet WP:CORP or WP:NOTE. Fram 07:47, 23 October 2007 (UTC)

Thanks, the article presents the Vereniging in the intro, next gives a sketch of the situation the Vereniging is faced with, and then mentions how this is evaluated by the Vereniging. The last part of the article discusses a book written by one of its prominent members.
The Verwey-Jonker report is not an audit ordered by the Vereniging, it's one in a series of comparison reports ordered by the Dutch government.
What about the other sources? Regards, Guido den Broeder 08:55, 23 October 2007 (UTC)
The Vereniging is not "presented" in the intro, it is mentioned. Then it mentions the situation patients and scientists are faced with, not specifically the Vereniging. It is mentioned once in the article. That Schonkert is a prominent member of the Vereniging is not mentioned in the article, nor on her own website[3]. She may be a member, of course, but her membership is never mentioned, so is not important for the notability of the Vereniging.
The Verwey-Jonker publication: I can not find it on their website, nor is any of the authors mentioned in the list of contributors of the Institute. You say it is a "comparison report", but what is it compared with? And is this publication available to the public, or is it a confidential publication?
The other sources: NPCF is a directory, sources 2, 3, 9, 12 and 13 are directly linked to the organization, 4 shows that you are invited to comment on policies and guidelines. 7, 10 and 11 are not about the Vereniging, 8 only shows existence (which is not disputed), you don't seem to be mentioned on 14 (but it is probably comparable to 4), ad I wasn't able to find 15. In general, they show that you exist and are heard when new guidelines are proposed.
The sources also show that the Vereniging is not the patient association, as the intro of the article claims, but merely a patient association. So we have an association which is a few years old, has a few hundred members, and is heard by the government when some specific guideline is developed. As far as can be said so far, the association is not commented upon by the press or other media, has not received any awards, or has in any other way been notable in the Wikipedia sense. Fram 09:47, 23 October 2007 (UTC)

I am not in a position to discuss the notability, but here is some additional info:

  • The text is correct. This is the only national ME/CFS association in The Netherlands. The old foundation still exists, but foundations are not associations. They have no members. There is a disability support group as well, which is also a foundation, and that's it.
  • There are no rewards for patient organizations in The Netherlands nor any other measures of notability beyond recognition by the government.
  • Re the guideline, the ME/CVS Vereniging is not 'heard', but participates in its production, jointly with the two foundations mentioned above.
  • The NPCF is the Dutch federation of patient and (care) consumer organizations.
  • The article by Arnoldus shows that the Vereniging supervises research.
  • The 3B Platform source shows that the ME/CVS Vereniging is part of a select group of patient organizations that discuss protocols and guidelines (not just specific guidelines but also methodology, communication etc.), under the auspices of the national council for the chronic ill and handicapped.
  • The ZonMw source shows a.o. that the guideline is in development and that patient organizations are actively involved as explained above.
  • The CBO source is not on their website, but you could probably get a copy if you ask. It confirms that representatives of the joined patient organizations were added as full members to the workgroups and the kernal group. When the draft version of the guideline appears early 2008, the ME/CVS Vereniging will be publically listed as a participant.
  • The gist of the article: "ME/CFS is not a put-on. This is the message that the ME/CVS Vereniging wants to emphasize on ME awareness day. Scientists have found genetic mutations. The CDC say that ME/CFS has been proven real. The cause may be brain damage. Despite this all, the minister of health refuses to recognize ME/CFS as a disease entity. The ME/CVS Vereniging says that as a consequence, seriously ill patients have problems. A new book has been published that carries the same message."

There are more sources. Is there something specific that you would like to see? What does it take, in your opinion, for a patient organization to be considered notable? Is there a good example, perhaps, on Wikipedia? Regards, Guido den Broeder 12:30, 23 October 2007 (UTC)

I'm a bit amazed that you succeed in keeping both mentions of the Vereniging that were in the full article, in the summary as well. The article is not about the Vereniging at all, it is about the book and about current research, and one person of the vereniging is quoted for one line. The ME/CVS Stichting[4] claims that they are the "Patient organisation": what is the diference between a patient association and a patient organization? And the Vereniging is only heard, they are invited to comment on the protocol, and even complain that "In plaats daarvan worden wij nu achteraf geconsulteerd over een kant-en-klaar concept" ("instead, we are now consulted afterwards about a finished concept"). The current sources are for me not enough (although they may be enough for other editors). I have no idea if there are better examples on Wikipedia. The World Association of Ugly People looks notable (featured on BBC and by news organizations worldwide), but most articles in Category:Disability organizations have very serious problems with notability. Have any of the leaders of the Vereniging, in their function of leader of the Vereniging, been a panel member on TV shows (preferably national TV)? Have you had interviews (not one line quotes) in national newspapers? Have any scientific magazines (including popular scientific magazines like EOS) paid attention to the Vereniging (not just mentioning them in an article on ME/CVS, but some indepth attention? All of these may help to establish notability. Look at the times the National Breast Cancer Coalition was mentioned (sometimes in passing, sometimes as a major focus) in the last month alone[5]. This is clearly a notable patients organization (or something similar at least). If the same can be shown (at a smaller scale) for the Vereniging, then I have no problem with the article. Thus far, nothing like ot has been shown though. Fram 13:25, 23 October 2007 (UTC)
Incidentally, I'm bowing out of the discussion completely - I can't read a word of Dutch and the refs are mostly in Dutch. I trust that Fram, as a Dutch-speaking admin, is very capable of guiding the page to either attaining notability or through deletion. WLU 13:38, 23 October 2007 (UTC)

A coalition is not the same as a patient organization, IMHO. The summary I gave of the article still seems correct to me - the title clearly points to the Vereniging - but of course I am biased. Hopefully, more than one person will comment. To answer your questions:

  • The website content of the ME/CVS Stichting has not been updated in many years, except for news. Obviously, their claim is incorrect. By the way, the forum of the Vereniging gets a lot more traffic than theirs.
  • The difference between an association and a foundation is that only the first has members. The association is the patients' own organization. A foundation is owned by its board; patients have no say in their dealings (and cannot rectify false claims on websites).
  • The insurance protocol is not the same as the multidisciplinary guideline. I am one of the workgroup members for the guideline, so I should know.
  • Representatives of the ME/CVS Vereniging have been on tv and on radio. There have been newspaper interviews as well (the cited newspaper article was based on one). Letters have been published in scientific journals.

Regards, Guido den Broeder 14:13, 23 October 2007 (UTC)

But the NPCF (like you said, "the Dutch federation of patient and (care) consumer organizations") lists the Stichting[6] as a "belangenorganisatie van patiënten" (literally an interest organisation of patients), similarly to the Vereniging. I have only your word that the Vereniging is the patient association, and the Stichting even claims that they are the sole government recognised patient organisation. Newspapers call it a patient organisation as well[7]. Anyway, this is tangential to this discussion. If you can provide good sources, this can be solved, otherwise it will have to go to WP:AfD. —Preceding unsigned comment added by Fram (talk • contribs) 14:30, 23 October 2007 (UTC)
I note that you have changed the text about the only patient care organisation. Thank you, and please ignore the first part of my last post, as it is now irrelevant. Fram 14:33, 23 October 2007 (UTC)

Internet sources establishing notability seem to be thin on the ground. It would be helpful to have more factual information about media exposure (including TV and radio ) -- not necessarily available on the Internet. I personally find the present sources just about strong enough, but it's borderline and without additional sources an AfD discussion is the logical next step. Avb 15:17, 23 October 2007 (UTC)

I've added a scientific journal reference, which includes a reply by Simon Wessely. According to Jimbo Wales, this constitutes the pinnacle of notability. Guido den Broeder 16:07, 23 October 2007 (UTC)
I'm starting to sound terribly critical, but if I see this correctly, you have sent in a letter to the magazine, following a previous article by Wessely e.a. and they replied to your letter. As far as I know, Jimbo Wales referred to articles you publish in a scientific journal, not letters. Fram 19:33, 23 October 2007 (UTC)
That's his problem. A multiple-page letter, well referenced, that is taken seriously by notable specialists, establishes notability.
Coverage by Spitsnet, 2006 [8]
Membership of Zorg6 [9] Guido den Broeder 19:43, 23 October 2007 (UTC)
It would help if you would not mix the trivial (being member of a webshop) with the less trivial (a short article in a free newspaper). It starts to look as if you have some basic notability, but the strategy of throwing everything in and hoping that something will do is rather tiring, as I have to check it all to see if it matches your claims. Fram 19:51, 23 October 2007 (UTC)
I have no way of knowing in advance what you will consider trivial. The 'webshop' is the only one of its kind, set up by patient organizations themselves. It shows that the Vereniging is ahead of the field. Guido den Broeder 20:05, 23 October 2007 (UTC)
Fram's assessment does not come out of thin air. Although a certain amount of experience helps, the main thing to do here (and this is something any editor should be able to do) is to check that we have sufficient reliable third-party sources (see WP:V and WP:RS) to establish notability (see WP:N, WP:ORG and WP:DEL#REASON). Example: it is quite possible that the webshop info alone suffices to make the Vereniging notable. But we can't assume it does on the say-so of individual editors. That's where independent sources come in. Avb 22:52, 23 October 2007 (UTC)
PS My view that the Vereniging is notable is mainly based on the fact that several other/larger organizations (including government related ones) take it seriously. But this depends on my insight into the situation in the Netherlands... which borders on OR and can be disregarded by other editors. I really think we need some more acceptable sources if the article is to be kept in the long run. Would it be possible to dig up some radio/tv refs? Avb 23:06, 23 October 2007 (UTC)
Difficult. I've had an interview on regional tv Utrecht but don't have the specifics of the broadcast since the organization that set it up was disbanded overnight (it did air, but I don't live in that region). There was a radio broadcast in Winschoten but again I don't have the reference. In 2005 several of our members featured in the most recent national tv show on ME/CFS but that was shortly before the Vereniging was started. Guido den Broeder 11:57, 24 October 2007 (UTC)
The Zorg6 initiative (the webshop) is supported by the NPCF, the CG-Raad and the Consumentenbond (consumer federation), and financially by the Dutch government. IMHO it deserves is notable enough for a Wikipedia article. Guido den Broeder 12:07, 24 October 2007 (UTC)

<undent>Nothing really 'deserves' an article on wikipedia, either it is notable or it is not. This is why there is a policy on reliable sources and independant coverage - you think it's notable, others may not, the only way to settle the disagreement is by looking at the sources. Please give the appropriate policies (RS, N, CORP, AFD, AADD) a thorough reading - I've seen enough AFD debates that get acrimonious because the article creator has not read the policy and wastes a lot of keyboard because of that failure to invest the time. It's very, very worth it. Also, arguing strictly from policy means the dedicated editors are going to be more sympathetic to your comments. It's not a personality contest, but people are people. WLU 13:28, 26 October 2007 (UTC)

I found this article when i checked the AfD section. I found it strange that a recognized patient organization like this should not be worth of an article at our Wiki. I will put some reference into the articles when I find them. Started with the educational film that is quoted on nearly all the ME/CVS relevant sites I came along. Neozoon 01:19, 1 November 2007 (UTC)
If it's recognized it should be reported on in reliable sources, independent from the organization. Since there didn't seem to be and it looked like a coatrack, it was moved to AFD. If you can add genuine independent secondary sources that help it sail pass WP:CORP, the AFD will cease. The real question is, recognized by who? If it's just recognized by members, it's not notable and shouldn't be on wikipedia. If it is notable, even after it is deleted it will inevitably be re-created by an independent third party who will hopefully populate it with reliable sources which are independent. Otherwise it'll be deleted again and probably protected at that point. It's not a matter of being 'inherently' notable, somehow magically determined, it's a matter of being noticed and published about, in ways that it's easy to tell it deserves its own page. WLU 17:16, 1 November 2007 (UTC)

[edit] Deletion review

Link Guido den Broeder 11:39, 15 November 2007 (UTC)

[edit] New data

  • Organization of young patients has joined the association on January 1, 2008. Guido den Broeder (talk) 20:16, 16 January 2008 (UTC)
  • Radio inteview (3 minutes) on BNR Nieuwsradio (news radio), January 9 2008, 17:25, commenting on the opening of a new clinic Guido den Broeder (talk) 19:33, 10 January 2008 (UTC)
  • Supervising a new research project by students of the Hogeschool Rotterdam.
  • Grant assigned by CBO/ZonMw to a survey by NIVEL, in cooperation with the patient organizations, of patient support for the implementation of the upcoming Guideline. Output will include articles for scientific journals. Guido den Broeder (talk) 20:14, 16 January 2008 (UTC)
  • The association runs the largest ME/CFS community on Hyves.nl. Guido den Broeder (talk) 17:23, 12 May 2008 (UTC)