NMSS - Why do they do this?
 

Every time I find a great link for information from the NMSS, they move it to some other location and the link doesn't work a few months later. What's with that? :mad:

I know some of you are connected to the NMSS, and wonder if you have (or can get an answer) on why they do this? How are we to keep people informed if they move the links all the time . . . unless we post the WHOLE article (and link) on the forums?

Cherie

I agree 100%. I had one bookmarked because I liked to add it in some newbie posts and all the sudden...gone! :(

I think you should point this out to NMSS because it hurts the population they are serving.

I have this issue with state or federal websites I use for education when a new administration comes in. If it ain't broken don't fix it

Well, since I am a Representative for the NMSS, I will take it up with them. We are having a meeting next week and I will ask...

I know that the website just underwent a huge revamping.

Cherie, could you PM me with some specifics?

Cheryl, you amaze me. You are so active in so many issues related to MS. Thank you!

Thanks Cheryl . . . done.

MOST links disappear in short order, at least the one's I seem to interested in. :rolleyes:

Cherie

Very important concern...
 

Yes, it would be great to have this concern brought up. Those who redo the website may not have any idea of the discouragement it causes. I know, there are times with ms, when it's just all we can do to type our concern and pray for some help. Then to have some of your great folks to give us the exact link to click on (which can be of great effort for you) then to try to go to it and it no longer be available. Not to whine, but I can say firsthand that by then, I'm too discouraged and exhausted to even persue it any longer (at times). So, Cheryl, thank you so much for asking about it. And thank you to those of you, Cherie and others, who take the time to share your expertise.:hug:

They do it because its fun to watch those with Cog Fog wander the hallways wondering where everyone went to.

Hire the handicapped, their fun to watch. :Trapeze 2:

That is frustrating. Most websites that move have a redirect - that is something that should be automatic if they are interested in serving clients.

It might have something to do with recycling the space on a server, or perhaps because they feel the information is dated . . . but this has been occurring for years (not because of any changes that happened recently).

I recall when Tysabri started to come back to market, the old articles disappeared into their "search" filing cabinet (they were still there, just not at the link that they were once at), and the link took me to the "this page is no longer available" notice.

The problem is that I keep the link so that I can attach it to postings, and so I don't have to copy the entire article. I don't keep the name of the article though, and even if I did, it's not always easy to locate again with their "search" function. Basically I have to try to recall some of the key words, then go "searching" (like googling) through their library of information by reviewing each article. I have found some that way, so I know at least some are kept anyway . . . the hard part is recalling the key words, then finding the specific article again. :mad:

Cherie

When I get an answer, I will let you know.

They archive articles as new ones become available, or are updated. This I know for sure.

Also, they just underwent a complete revamping of their website so links did get moved around.

I am in the process of trying to get an answer from the technical staff about permanent redirects and how that can be accomplished.

A year ago, that answer may have been partially correct. I am not trying to defend them just trying to help out with some of the answers...websites evolve, change, and it is frustrating when you can't find what you need. When a large organization is used as a resource, redirects for resource material should be built into their system.

Hi Cherie,
I manage a few large corporate websites so, if they're at all similar in their approach, a very good way to get your feedback to them is here:

http://www.nationalmssociety.org/ContactUs.aspx (there's a specific category for website concerns)

Links deeper within sites (especially informational content, not transactional) do change over time...
Sometimes its part of an overall strategy to keep a site fresh and current.
But it's also used to dissuade perpetuation of info that's outdated or no longer being promoted by the site sponsors.
OR (and this happens a lot) the pages being linked to are no longer in production at their source (through no fault of the NMSS because they can't control/ensure content on other sites) so, the links have to be removed.

Even if a link is still active, a good reason to test a link before sharing it is to determine whether or not the content has been modified. You might not always be sharing the info you thought you were sharing. ;) I says this because it's burned me in the past. (long story involving a pretty tame book review that evolved into something else... wasn't pretty LOL)

Anyway, hopefully you'll get a response from them, this is just what I've picked up about big websites over the years. :)

Cherie

I received a reply from the web manager at NMSS today regarding your question.

It's a two part reply as with anything it's not a simple question to answer.

I posed the question about broken links and sent the examples you gave me. Part of the problem is that a couple of the articles are on a server that the NMSS no longer has access to. They have changed providers twice since at least one of those articles was written.

They are in the process of upgrading again and the suggestion of adding a redirect for articles and information that is moved or archived has been added to the list of items they want from the new provider. It was a good idea.

In the meantime, they have upgraded and enhanced their search feature on their site which should improve the current capabilities to search for information.

However, that does not help with information that you currently have that is older links. The suggestion was to update your links about every 3 months or so. Or just make sure that if you provide information to advise that person that the exact link may be out of date and just direct them the to Home Page and to use the search feature with the subject.

I said I would find out for you and I did. The person I need to speak to was on vacation and got back to me as soon as possible.

;)

Thanks so much for looking into this, Cheryl.

So, the articles I sent you (which were just examples) aren't available any more at all then?

I guess if they are changing server providers as often as have been lately, a lot might go by the wayside. :confused: If that is the case, then even keeping the name of the article isn't going to help because "searching" won't find them either. I have been doing that actually, and I can't find a lot of them, so I guess this answers why. :(

I like to link to the NMSS because people have a sense of confidence about the information that is provided by them. I guess the only options would be to post the entire article, so that if the link goes away, at least the information is still there. :)

Thanks again for checking it out, and putting in the request.

Cherie

Quote your old post and put the new information in the new post thus updating the information. ;)

Cherie

If the NMSS was not the original source of the information, then it should still be available somewhere. If you do a search using the subject, you should still be able to find the article. If it was originally on the old server that is no longer accessible, then yes it's not available with the nmss url link.

The information that I reference from the NMSS is normally based on a study, combined with their interpretation of it. You are right that chances are I'd still be able to AT LEAST get my hands on the study, even if it does not include their interpretation.

The difficulty at this point is that I did not necessarily retain any words from the article/study, just the link. So, if for instance I was talking about "transverse myelits", I just searched for my prior postings on that subject, and that gave me the links I was looking for. I can't recall what the articles/studies said exactly . . . just that it was important to my point. :D

Live and learn . . .

I used to just keep "notes" on everything I researched, pulling from several sources into a word document/summary on a topic. That didn't work for some forums because then I couldn't remember when I had used direct quotes for some of it, or if it was my own words . . . :rolleyes:

I started keeping only links a few years ago, and didn't even keep the words to an article. Some of the forums preferred we didn't post the article, so the link idea seemed to work at the time . . .

I've adapted before, and I will again. ;) Or maybe this is just a sign that it is time for me to find another interest. :p

Cherie

If you are using the search feature to find the article on the NMSS website, the name of the article is in the link..i.e. transverse myelitis.

Don't let the challenge of the old server no longer being available set you back from the great research you've done.