| comments on the facebook group |
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10/07/2015 11:55
dpjcrfsh 
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10/07/2015 11:55
dpjcrfsh
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comments on the facebook group
I've noticed the facebook forum has much more activity than this forum, perhaps 10x. I personally think this forum should be the preferred place for discussions. It is owned by the dupuytren's society wheresas the other is owned by facebook. I don't know if facebook eventually deletes older posts, but I think they could if they wanted to. I'd bet the society will keep the contents of the forum here around forever. All the posts collectively contain very valuable information. Should an effort be made to redirect traffic here?
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10/07/2015 13:00
wach  Administrator
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10/07/2015 13:00
wach Administrator
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Re: comments on the facebook group
Additional advantages of this forum are
- the content is structed into boards
- it has a Search function for finding specific answers
- it is linked to a website that gives additional important information on the disease and on treatments
- the content is not owned by a commercial company
Personally I believe this forum is a much better place for asking questions and finding answers. YES, if you can move some of the discussion here it would probably make a lot of sense.
Wolfgang
Edited 10/07/15 16:02
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10/07/2015 15:51
salspecs 
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10/07/2015 15:51
salspecs
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Re: comments on the facebook group
I joined the fb group, but I have reservations about posting there. After I was approved, several comments showed up in my regular fb feed. I'm not interested in discussing my health with all my "friends", only those in the same boat. I would need to be assured my comments are going to the closed group only.
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10/07/2015 16:41
spanishbuddha Administrator
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10/07/2015 16:41
spanishbuddha Administrator
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Re: comments on the facebook group
My opinion is that the FB group consists of a lot of opinion  supposition, unfounded assumptions or hearsay. It does provide a useful means of discussion and support, sharing actual symptoms and treatment outcomes, and I have posted there a few times. People are welcome to share an opinion here, but if it is counter to prevailing wisdom and published evidence, the mods will usually issue a correction to say that.
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10/07/2015 21:28
missbetsy 
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10/07/2015 21:28
missbetsy
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Re: comments on the facebook group
salspecs:
I joined the fb group, but I have reservations about posting there. After I was approved, several comments showed up in my regular fb feed. I'm not interested in discussing my health with all my "friends", only those in the same boat. I would need to be assured my comments are going to the closed group only.
Salspecs - The reason the comments showed up on your own FB feed was because you are a member of the closed group. Your "friends" did not see those comments. A closed group means only members that are in the group can see what is posted.......I have been in that FB group for over a year now. Very rarely post there but do check in from time to time. I did the Xiaflex once & my DC came back a bit worse within a few months so at this point I honestly don't know what my next step is/should be.
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10/07/2015 22:28
salspecs
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10/07/2015 22:28
salspecs
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Re: comments on the facebook group
Thanks, missbetsy.....that was my understanding, but I did have an experience when posting in another closed group a couple of years ago, where one of my regular friends saw a post I had made to the group. It happened to a couple of other folks, too, so the administrator did some tweaking and it hasn't happened since. That is what my concern was based on. If none of you have had that problem, then I am good, but I still prefer this sight.
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10/07/2015 23:24
Stefan_K. 
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10/07/2015 23:24
Stefan_K.
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Re: comments on the facebook group
I am not a member of the Dupuytren Foundation's FB group, yet I can read all posts there and see who made them. So there seem to be different types of "closed groups".
As much as I respect Dr. Eaton's work based on what I have read in this forum, I am somewhat bewildered by the fact that the Dupuytren Foundation would make a post there stating "Cancer risk in Dupuytren patients has been reported to be increased as much as twice that of non Dupuytren patients" two weeks ago without quoting or linking to the alleged "report(s)", even after group members repeatedly requested it. The links posted by another member are to two abstracts of studies from 2000 (Sweden) and 2002 (Iceland) respectively for much full data needs to be purchased and the second concludes "A moderate but non-significant increase in cancer incidence was observed among individuals with stage 2 of Dupuytren's disease", and there still is no discussion of the statement made by the Dupuytren Foundation.
I'll check the FB group occasionally but continue to concentrate my investment of time here rather than there.
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