Posted 1 week, 5 days ago (0 comments)
Did you know that the GDATF hosts a moderated Facebook group for patients? The group is closed - which means that the list of members is visible to the public, but group posts and comments can only be viewed by members. In order to join the group, visit our Facebook Page. Select "Groups" - which will be in the same spot as "Photos", "Events", etc.; this will be in a slightly different spot depending on whether you are connecting via mobile or desktop. Select "Join" to join the group; you will then receive a notification message asking if you agree to abide by the group guidelines. Respond "Yes" - and we will approve your memberships as quickly as possible. (Approvals can take up to one business day). For your convenience, a copy of the guidelines is included below...
(Updated 1/12/18 with info re: notifications and news feed) Welcome to the GDATF's Facebook group! This is a *moderated* group. If you do an Internet search for “Graves’ Disease Support”, you will find a number of options for forums with various formats. Some have little or no moderation, and might advocate questionable medical practices. Others will bombard you with advertisements for products or services. Still others will only focus on one of the three available treatment options. All of these formats have advantages and disadvantages. The structure that has been approved by our Board of Directors has been designed to provide an environment that (1) provides reliable information from credible medical sources, (2) welcomes all individuals, regardless of treatment option chosen, and (3) remains free of advertisements and sales pitches.
Please read the guidelines below in full prior to posting, as posts that do not conform to the guidelines will be removed without warning.
Our goal is to provide an environment where discussion flows freely - and courteously -- and members can count on receiving credible medical information.
1. If you are having a medical emergency, please call 911. Our facilitators are happy to answer general questions. However, GDATF online forums should NEVER be used as a substitute for proper medical care or medical advice. Always discuss any suggestions received with your own physician prior to making any changes to your own treatment regimen.
2. Prohibition on giving medical advice. Participants are invited to share personal experiences and general information, but are not allowed to give medical advice. “Medical Advice” includes interpreting labs, making a diagnosis, making medication recommendations (dosing, type of med, etc.), or telling another user which treatment option they should select. These are all issues that need to be discussed with each patient’s own medical provider.
3. Posting of Links. Posted links must either come from (a) a well-established, peer-reviewed medical journal (ex: New England Journal of Medicine, The Journal of Clinical Endocrinology and Metabolism, Thyroid, etc.) or (b) an established medical association or governmental entity (American Association of Clinical Endocrinologists, American Thyroid Association, National Institutes of Health, etc.) that provides information guided by “evidence-based medicine”. Inappropriate links will be removed, and repeat offenders may be subject to suspension/banning.
4. Discussion of “alternative” therapies. Posters may discuss complementary approaches that are practiced in addition to conventional medical therapy to promote general health and well-being, such as yoga, tai chi, meditation, stress relief, etc.. However, our forums prohibit discussions that promote “alternative” therapies designed to replace conventional medical treatment. At this time, there are no proven safe and effective alternatives to the three available conventional treatment options for hyperthyroidism. Our Board members and volunteers have had contact with patients who became more ill – and even those who died – because they chose to reject conventional medicine in favor of an unproven alternative therapy.
5. Debate the Topic, Not the Person. With three different treatment options to choose from – and much about Graves’ disease and autoimmunity that is not yet well understood – disagreements are bound to happen. Please be respectful and civil in stating your position, and do not use derogatory language or otherwise personally attack another poster or moderator.
6. Use of Physician Names. Please do not post negative comments using a physician or medical facility by name.
7. Prohibition on Spamming. Spammers will be banned without warning. Facilitators will also be very aggressive in banning posters believed to be part of “blog commenting services”. (These are posters who make a seemingly legitimate initial post and then later edit the post to include spam).
8. Use of Private Messaging System. Private messaging on the Facebook site is handled via Facebook and is not controlled in any way by the GDATF. Please use caution when giving out personal information to another member.
9. Off-Topic Posts. Please keep posts on topic.
10. Multiple Postings of the Same Comment. Please post your comment ONE time, using the thread that is most appropriate to the topic (or starting a new one). Posting the same comment on multiple threads clogs up the group and makes it more difficult for members and facilitators to access information.
Inappropriate posts will be removed and repeat offenders may be blocked.
*** Information regarding notification and news feed preferences ***
If you are overwhelmed with posts going into your news feed, you can select "Joined" at the top of the screen and select "Unfollow". You will still be a member of the group - and can pop over here any time - but the posts will no longer appear in your feed.
If you are getting too many notifications, you can select "Notifications" at the top of the screen and adjust the setting to "Highlights", "Friends' Posts", or "Off".