[elf]

#1072840

I had my link removed (admittedly, it was a link to a particular ophtalmologist office), I was irated and seeked to remove my membership here. Couldn’t find it, and stuck around – mostly because of meeting people, not that I particularly like this policy. The moment I see someone posting link, I copy it as I know it will be removed.

[elf]

#1072841

Another strange policy here is replying to an individual poster with "Email me, I’ll send you this wonderful article."

It kind of goes against the copyright anyways? Why leave others readers/Graves sufferers hanging? Why not to post the article or a link to it, here?

[Kimberly]

#1019608

In another thread, there was a mention of posts with links being removed. I am curious as to why this is the case. In other groups that I participate in, the protocol is that links can be included with a very brief summary of the study.

Obviously, the NGDF needs to focus on research an education – rather than defending against a copyright infringement lawsuit! However, I would expect that a research group who went to the time and expense of funding a study would *want* to have their findings generate additional discussion — as long as appropriate credit was given.

I also understand that the NGDF wouldn’t want to make it look like they are promoting or discouraging a particular treatment, based on the outcome of one study. But since this is an open forum, I do think it would be helpful to see what information others are finding. Those of us who are patients obviously need to take the initiative to research accordingly before making any treatment and/or lifestyle changes based on what we read on the Internet. (Or for that matter, what our doctors tell us ). Maybe some sort of disclaimer would address the issue?

[DianneW]

#1072842

The policy in the past has always been that links may be posted with permission only, since the content of some websites may contain information our Board of Directors doesn’t find credible. The intent is to maintain a high quality of information. Past rules have also disallowed the direct quoting of medical studies without the author’s permission, since that is copyright infringement.

My understanding is that updates in board rules are in the works, and that all policies are being reviewed. The good people who work so hard to make this board happen will make every possible improvement to keep this board relevant and credible, while keeping restrictions to a minimum.

I’m sorry that currently no rules are posted for people to refer to. Please be patient as we get all the updates done.

I don’t know if this clarifies anything, but it’s the best I can tell you right now.

[Author]

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