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My Outreach Posts On Inspire Were Deleted

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My Outreach Posts On Inspire Were Deleted

Post by Dave Tuttle on Thu Feb 20, 2014 9:10 pm

I've been reaching out to recovering heart patients on the Inspire "Bypass" and "Mended Hearts" forums and mentioning this forum for any who are interested in a more active life and we've had some new members join from those sites... Well today my posts and all the responses were removed from both forums... I don't get it and asked for an explanation. I thought we were all trying to help all heart patients but they must feel threatened by our small forum... They have many thousands of members. Below is my post. What did I say that warranted deletion??

Hello, I recently found this group and think it's a great resource for heart patients trying to learn about and cope with their heart disease. I am not a new heart patient, I am 15 years out from my 4X CABG and would have benefited greatly from this discussion after my surgery.

I belong to HEART, a group of active heart patients who have successfully used large amounts of exercise as a key element of their recovery from heart surgery and as a result are now able to live the active lives they had hoped for. We believe that exercise and training beyond basic fitness levels can make a huge difference in many heart patient's long term survival while maximizing quality and enjoyment of life. Our group includes runners, walkers, swimmers, bicyclists, and anyone else who wants to be a part of our support community. While we have many very successful heart patient athletes in our group, we especially welcome those who are just starting out in exercise after heart surgery or a heart procedure. Each one of our members had the same questions, fears, and challenges after their surgeries that all new heart patients do and they now offer their experience, encouragement, and support on our forum to help you on your path to a heart healthy life.

Many of our members gather at organized running events to socialize and celebrate their active recovery and commitment to a healthy lifestyle. Our annual meetings are centered around regional marathon events where members have options to participate on relay teams or as individuals at the half and full marathon distances. These annual meetings also involve family-friendly social events, providing our members and those close to them an opportunity to develop and strengthen friendships.
Please check out our web site and be sure to click the link to the forum to see what's going on there... If you have a heart problem or have had heart surgery or a heart procedure feel free to join and don't be intimidated by the amazing things some of our members are doing... As I said, we all started out in the same place after our surgeries.

Web Site: http://heartorg.zohosites.com/home.html

Forum: http://heartorg.forumotion.com/

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Re: My Outreach Posts On Inspire Were Deleted

Post by Dave Tuttle on Thu Feb 20, 2014 9:20 pm

OK, I got this response from them.I don't agree with the thinking but its their forum.


Hello,

Your posts were brought to our attention and upon review have been removed. It is against our rules to post links to other support groups. Our rules state, in part:

No commercial use, promotion or solicitation

You may not use Inspire for any commercial purpose, marketing, promotion or solicitation. This includes promoting a company, product, service, person, treatment, therapy, Web site, support group, non-profit, charity or fundraiser; recruiting members to participate in market research, clinical studies...

Thank you for your understanding,
TeamInspire

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Re: My Outreach Posts On Inspire Were Deleted

Post by RoadKillBill on Fri Feb 21, 2014 4:42 am

You didn't say one d@ng thing that is out of line.  It could be they have a territorial bully moderator, or there was concern that you were a scammer/spammer with some ulterior motive.  That was a really nice invitation, Dave -- only thing I can suggest is that you specifically emphasize out that HEART is non-commercial and completely free to join and participate.  Maybe they envisioned that you were trying to make a $ from selling weekend activity packages or something?  Dunno, just thinking out loud.

I applaud your outreach efforts, stay positive!

PS

Well, I just re-read their email:

"You may not use Inspire for any commercial purpose, marketing, promotion or solicitation. This includes promoting a company, product, service, person, treatment, therapy, Web site, support group, non-profit, charity or fundraiser; recruiting members to participate in market research, clinical studies..."

I guess THEY ARE territorial Sad

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Re: My Outreach Posts On Inspire Were Deleted

Post by Rachel August on Fri Feb 21, 2014 10:07 am

Man - that sucks! That was a really nice post Dave! I can't understand why some people/organizations are seemingly so narrow-minded....Really - they sound cultish - and waay too controlling for my tolerance!

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Re: My Outreach Posts On Inspire Were Deleted

Post by DonSoule on Fri Feb 21, 2014 1:13 pm

I agree with the others - Great post Dave Smile Too bad they have such rules. I never would have found this great group if Gary and Rusty didn't reach out to me on PacemakerClub and invite me to Cardiac Athletes when I found it after I suddenly found myself with a pacemaker and many questions.

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Re: My Outreach Posts On Inspire Were Deleted

Post by marathonman60 on Fri Feb 21, 2014 2:54 pm

They don't inspire Me!
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Re: My Outreach Posts On Inspire Were Deleted

Post by Marc Thayer on Sat Feb 22, 2014 3:35 pm

Terratorial ...and within their Terms of service...

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Re: My Outreach Posts On Inspire Were Deleted

Post by Sumorunner on Sat Feb 22, 2014 8:18 pm

I can see their point from an administrative perspective. As you note, they have many thousands of users, so moderating and policing that many can be very time consuming. In such cases you have to set hard and fast rules like those or spammers, advertisers and trolls will make your life hell. In order to determine that your link really is helpful or at least harmless, they would need to go to the HEART forum to see what it's about and that it isn't just another commercial site trying to muscle into their space. I doubt they have the time or inclination to do that.

I've been on many forums, bulletin boards and social networks on various topics. Most of them are run by someone in it for the money and many of those not entirely honest. I was on one many years ago where one of the "regulars" would ask pointed questions about the history of places and things. I had some knowledge on the topic and fed him information of issues related to the city I grew up in. Then by chance I later stumbled upon a subscription site like "ask the experts" where the experts were paid for their responses to difficult and obscure questions. What I found was my information being submitted verbatim by the same guy for pay. I called him out on it and was summarily booted from the first forum.

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Re: My Outreach Posts On Inspire Were Deleted

Post by eaglett on Thu Mar 06, 2014 3:55 pm

I read the post Dave put on the Inspire/Mended Hearts site. Heart has been something I have been looking for as many of the discussions on the other site are concerning individuals who are either having OH surgery or recovering from heart attack, stints, valve replacement, or open heart surgery on/off the pump. Mended Hearts partnered with Inspire because I found Inspire three weeks after my CABG X6 in Oct 2012. The support that I received over the net was exceptional and who ever would listen I told about Inspire. Mended Hearts is a group that provides education and support to individuals, care givers, families with adults/children who have had heart problems. It was through Inspire that I found Mended Hearts and it was because of my belief in the two organizations that they partnered. It was through this group and Daves' post that I heard a bout Heart. I will continue to refer individuals with an interest in exercise to Heart. I am going to ask the Inspire and Mended Hearts why the post was removed and what needs to be done to change it. Walking is great but there are many who are looking for more than just walking.

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Re: My Outreach Posts On Inspire Were Deleted

Post by Dave Tuttle on Thu Mar 06, 2014 5:14 pm

eaglett wrote:I read the post Dave put on the Inspire/Mended Hearts site.  Heart has been something I have been looking for as many of the discussions on the other site are concerning individuals who are either having OH surgery or recovering from heart attack, stints, valve replacement, or open heart surgery on/off the pump.  Mended Hearts partnered with Inspire because I found Inspire three weeks after my CABG X6 in Oct 2012.  The support that I received over the net was exceptional and who ever would listen I told about Inspire.  Mended Hearts is a group that provides education and support to individuals, care givers, families with adults/children who have had heart problems.  It was through Inspire that I found Mended Hearts and it was because of my belief in the two organizations that they partnered.  It was through this group and Daves' post that I heard a bout Heart.  I will continue to refer individuals with an interest in exercise to Heart.  I am going to ask the Inspire and Mended Hearts why the post was removed and what needs to be done to change it.  Walking is great but there are many who are looking for more than just walking.

Thank you eaglett, I hope you do have some success with the Inspire and Mended Hearts Administrators... We are all in fact working toward the same goal of helping heart patients find their best life possible and NOTHING should get in the way of that... Thank you also for referring those who might benefit from HEART to this forum. We understand that we're not for everyone but we also know that there is a huge need for support that focuses on those heart patients who can and want to attain their best possible physical condition and who look at it as an essential part of their heart health program... We appreciate your efforts, you obviously belong here and I'm glad we met.

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Re: My Outreach Posts On Inspire Were Deleted

Post by Admin on Thu Mar 06, 2014 5:55 pm

eaglett wrote:I read the post Dave put on the Inspire/Mended Hearts site.  Heart has been something I have been looking for as many of the discussions on the other site are concerning individuals who are either having OH surgery or recovering from heart attack, stints, valve replacement, or open heart surgery on/off the pump.  Mended Hearts partnered with Inspire because I found Inspire three weeks after my CABG X6 in Oct 2012.  The support that I received over the net was exceptional and who ever would listen I told about Inspire.  Mended Hearts is a group that provides education and support to individuals, care givers, families with adults/children who have had heart problems.  It was through Inspire that I found Mended Hearts and it was because of my belief in the two organizations that they partnered.  It was through this group and Daves' post that I heard a bout Heart.  I will continue to refer individuals with an interest in exercise to Heart.  I am going to ask the Inspire and Mended Hearts why the post was removed and what needs to be done to change it.  Walking is great but there are many who are looking for more than just walking.

tutt wrote:Thank you eaglett, I hope you do have some success with the Inspire and Mended Hearts Administrators... We are all in fact working toward the same goal of helping heart patients find their best life possible and NOTHING should get in the way of that... Thank you also for referring those who might benefit from HEART to this forum. We understand that we're not for everyone but we also know that there is a huge need for support that focuses on those heart patients who can and want to attain their best possible physical condition and who look at it as an essential part of their heart health program... We appreciate your efforts, you obviously belong here and I'm glad we met.

As a point of interest, for the short time that these posts were visible on the Inspire/Mended Hearts forums (about 5 days total) our web site received the most visits per day from there than from any other source ever over a similar period. We also had a significant increase in new memberships during that period. There is a lot of interest coming from that group which is comprised mainly of recent OHS graduates... We have to find a way to be there for them when they need us.
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Re: My Outreach Posts On Inspire Were Deleted

Post by eaglett on Fri Mar 07, 2014 12:31 am

Dave,
I contacted Inspire and asked about, partnering with Heartworm. I have received a response. They suggest that you contact danielle@inspire.com . I have not contacted Mended Hearts at this time. Should I hear anything I will let you know.

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Re: My Outreach Posts On Inspire Were Deleted

Post by eaglett on Fri Mar 07, 2014 12:41 am

Dave,
Danielle Leach is the Director of Partnerships for Inspire.

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Re: My Outreach Posts On Inspire Were Deleted

Post by Dave Tuttle on Fri Mar 07, 2014 5:51 am

eaglett wrote:Dave,
I contacted Inspire and asked about, partnering with Heartworm. I have received a response. They suggest that you contact danielle@inspire.com .  I have not contacted Mended Hearts at this time.  Should I hear anything I will let you know.

Thank you eaglett, I will contact Danielle and perhaps something can be worked out. When I read about partnerships on the Inspire site I got the impression that partners were required to bring their forums under Inspire's management and that is not a move we would make but maybe there is a way for us to promote each other.

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