Talk:Devic's disease
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[edit] Devic's Disease support
Hello, My name is Tim Mulvihill and I run Devic's Support. Wikipedia used to have my group listed as an external link but now I notice we no longer appear. The only support site listed for Devic's is a UK based group. We are a US based support group registered with NORD (National Organization of Rare Disease's). We do not require registration to view our site, and unlike other support groups with do not solicit for funds. We are not a registered charity, just a web based support group. We are recognized as a resource by The Transverse Myelitis Association, Blue Cross Blue Shield, Cigna and many others. We have more than 200 members world wide, with physicians that monitor our posts. Please consider adding us to your page on Devic's Disease. http://groups-beta.google.com/group/Devics-support
Thank you, Timothy Mulvihill Keithtim (talk) 21:25, 12 December 2007 (UTC)
- I removed your address. Wikipedia is not an address book. Our external links policy is quite specific about forums and other resources, and I'm not sure if we should make an exception, given that there are numerous other sources of information available. JFW | T@lk 23:06, 12 December 2007 (UTC)
I am curious as to why you feel it should be removed? I also don't understand how you can believe that there are that many available sources of information available? We had a link on Wikipedia for a year or more until it was recently removed. We are not a social organization and we do not require people to register to view our posts. We are also recognized, as I previously stated, by many Medical sites as a resource. I can't help but find it interesting that you have a link to a UK based Support group, but will not allow a link to ours? Being a Doctor in the UK, I am sure you are aware that most of the information about Devic's comes from the US. Wikipedia is often the first place a person can find information regarding this disease, and it does not seem fair Wikipedia will only direct support to a UK based support group. Please reconsider your decision. Thank you, Timothy Mulvihill Keithtim (talk) 00:25, 13 December 2007 (UTC)
- A similar discussion with Keepandbear (talk · contribs) on my talkpage has gone around in circles about the suitability of newsgroups on an encyclopedia webpage. I am working on the basis of this guidelines (no. 11). I cannot find the "UK based group" Keithtim is referring to - I would imagine that link was also deleted.
- Wikipedia is not a web directory. When selecting external links, the audience is the general readership. Inasmuch, one would choose professional organisations or larger patients' representative groups over loose online discussion fora. I am going to ask other contributors at WikiProject "medicine" to offer their opinion here. Hopefully something resembing consensus will emerge at the end. JFW | T@lk 16:12, 24 December 2007 (UTC)
There are no "larger patients' representative groups" for Devics. This is it. There's maybe a few hundred diagnosed in the US, 1000 in the world. Doctors by & large don't know about it, ER staffs don't know about it, there's no telethons, as far as I know there's no CFC checkoff. Web pages are good resources but don't explain things in a way that normal people can always understand. Our group can mean the difference between people getting the treatment they need or not. As I said elsewhere, it is not a social group, there is no benefit to us from listing this, it is a way to get critical information to people suffering from a life threatening disease. It is one little line in a links section. Let it be!! Keepandbear (talk · contribs)
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- JFW has my full support on this. Wikipedia has no responsibility to patients, if it did, our medical articles would be full of regional support group links. I suggest you (1) add any missing "critical information" to the article, keeping in mind our content policies, and (2) find other websites (such as charities and organisations whose job it is to list support groups) to take your link. The pages at The Walton Centre website (linked) look rather good and have a section where your group could be linked from. I suggest you email the author/webmasters. Colin°Talk 18:08, 24 December 2007 (UTC)
You are making a straw man argument. It is an information resource, the only one of its kind, it is not a regional or even national group (we have had patients in Europe, at least).
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- Sorry, guys. JFW is right. In the final analysis, it just doesn't much matter how helpful your chat room is, or that you think patients will never find your group without a Wikipedia link, or how cool it would be for my favorite rare-disease chat board to be listed on Wikipedia. What matters is that Wikipedia's policies specifically exclude links to groups like yours. The link was a clear violation of the policy.
- If you don't like this policy, then you need to head over to the policy group and explain to them that in your opinion, external links to patient support/disease discussion groups should be allowed. If you convince them to change the policy, then come back here and tell us, and you'll get no flack from us. Until then, the link is disallowed. WhatamIdoing (talk) 03:46, 25 December 2007 (UTC)
I just wanted to note this line from WP:MEDMOS#Audience while I had it handy, because I expect this issue to come up again. An example of writing for the wrong reader is:
- You add "helpful" external links, such as forums, self-help groups and local charities.
So in addition to violating the encyclopedia-wide WP:EL, adding links to patient chat rooms is specifically called out as inappropriate for medical articles. WhatamIdoing (talk) 20:02, 1 January 2008 (UTC)
