Why Reduced Activity on Forum

Posts from Jan. 1, 2018 to the present. Plus important announcements. (ICD warning sounds)

Moderator: Moderators

User avatar
mrag
Posts: 4412
Joined: February 10th, 2009, 4:56 pm
Location: The Former Mushroom Capital of World when America was great

Why Reduced Activity on Forum

Post by mrag » June 11th, 2019, 9:39 pm

I suspect they are still implanting ICDs at record rates so why aren't people lining up to join the group? Perhaps heart disease is not getting all the attention it "deserves?"

(causes of death in US vs what people search for vs what people get to read about)
https://twitter.com/BillGates/status/11 ... 0042465280
"The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge" S Hawking

Honk
Posts: 32
Joined: April 25th, 2018, 11:25 pm

Re: Why Reduced Activity on Forum

Post by Honk » June 12th, 2019, 2:03 pm

They are all on Facebook groups.

User avatar
ROBO Pop
Posts: 4639
Joined: September 14th, 2009, 2:36 pm
Location: the Oval Office

Re: Why Reduced Activity on Forum

Post by ROBO Pop » June 12th, 2019, 2:21 pm

Have you tried doing a dead count.... :duh: I meant head count
Broken Heart
Nobody has ever survived life, but I'm trying...
My story and sticking to it
http://www.icdsupportgroup.org/board/vi ... 97&p=91375

User avatar
mrag
Posts: 4412
Joined: February 10th, 2009, 4:56 pm
Location: The Former Mushroom Capital of World when America was great

Re: Why Reduced Activity on Forum

Post by mrag » June 12th, 2019, 4:16 pm

Honk wrote:
June 12th, 2019, 2:03 pm
They are all on Facebook groups.
Oh good grief, Facebook is all Russian trolls and spies. It's worse than Chaturbate.
"The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge" S Hawking

Leedur
Posts: 366
Joined: May 24th, 2015, 10:25 pm

Re: Why Reduced Activity on Forum

Post by Leedur » June 12th, 2019, 5:20 pm

I "think" I can remember reading posts on numerous subjects here before actually becoming a member. Lots of questions answered without joining. After a while I decided to jump right in. What pushed me over the edge was my first shock was while driving.....had to see if this was common. It's possible some are intimidated by what they read and might not want to enter into the discussions. Much better since most of the political BS has been cleaned up. There's some scary stuff here sometimes.

User avatar
ROBO Pop
Posts: 4639
Joined: September 14th, 2009, 2:36 pm
Location: the Oval Office

Re: Why Reduced Activity on Forum

Post by ROBO Pop » June 12th, 2019, 8:17 pm

Leedur wrote:
June 12th, 2019, 5:20 pm
There's some scary stuff here sometimes.
So what can we do to make this site more welcoming and friendly to get new members to be active? Don't hold back, even if some of us need to step away or drop out. This site is to help newbies who need help and guidance...
Broken Heart
Nobody has ever survived life, but I'm trying...
My story and sticking to it
http://www.icdsupportgroup.org/board/vi ... 97&p=91375

Stella Blue
Posts: 97
Joined: March 29th, 2016, 10:36 pm

Re: Why Reduced Activity on Forum

Post by Stella Blue » June 12th, 2019, 8:48 pm

I bet Leedur is right. I lurked on this forum for a couple of years before actually joining. Newbies, if you are out there, sign up and let us know you are there! This board is at its very best when the members have someone with questions, someone to help.

Leedur
Posts: 366
Joined: May 24th, 2015, 10:25 pm

Re: Why Reduced Activity on Forum

Post by Leedur » June 12th, 2019, 10:03 pm

Robo: Before responding, I had to "not sign in" to try and verify what I thought I remembered before joining 4 years ago. Quickly I was able to go back to 2010 and enter a topic in search...instant access to topic comments. Of course info might be somewhat outdated due to technology advancements.
I suspect way more members and non-members could be using this for research. Then again, once you find the answer to whatever your question was....search might stop? Not sure how much detail one wants to know about heart disease.

I wouldn't want to deprive any member or non-member from our helpful info and personal shared experiences. Membership loss due to death is high enough already.....certainly wouldn't suggest anyone here stop commenting and being their usual (or unusual) self. My "Scary" remark was sarcasm and meant to provoke.

Have personally benefited greatly from membership here and appreciate your personal helpful info and comments from the past. My cardiac adventure started 21 years ago at age 49 with bypass surgery advancing to heart attacks, V-tac, A-fib, Heart Failure, ICD implant. Among a group of longtime old friends, I am considered the most experienced with heart issues. Some have even claimed to have caught A-fib by hanging out with me. Anyway, I am the one they call with questions. And I am the only one of us still working....which I feel is helping me remain vertical.

Having seen this topic and question come up more than once recently, I'm not sure there is a right answer or advice to recruit more members and comments. Us regulars have some spectacular stories of near death and daily survival that would be hard to match.

It seems when someone comes along with a question, plenty of us jump in with experiences and helpful information. It's just doesn't seem as frequent as in the past.....maybe we have competition from other sites. I once explored some of them and didn't hang around long....not that there wasn't some good info, but there was too much commenting for me. Question is it necessary for the survival of this site to get more members and comments?

User avatar
Colin Pearson
Posts: 968
Joined: August 12th, 2013, 6:25 am
Location: Berkshire England

Re: Why Reduced Activity on Forum

Post by Colin Pearson » June 12th, 2019, 10:08 pm

As mentioned above, I think facebook is the main reason.

I've been active on forums and before them newsgroups for over twenty years. They were once thriving places with pages and pages of new posts and threads every day, it was difficult to keep up. But like this place, they all seem to be in decline. I don't know why other than the aforementioned face-ache. Instant gratification and answers almost straight away on the smartphone on face-ache whereas you might have to wait a day or two on here.

On here specifically there have been some very dark times over the last few years and that too could be another reason.

It is vitally important we don't scare people off or away from ever posting, especially when they are at an extreme low, which most of us were at the time our ICD's were implanted. There are obvious exceptions but I for one was terrified when I first got mine and this place helped me enormously overcome that.

User avatar
mykidsmom
Posts: 3980
Joined: February 9th, 2012, 5:09 pm

Re: Why Reduced Activity on Forum

Post by mykidsmom » June 12th, 2019, 10:32 pm

I agree with Colin...facebook....instagram...twitter....all instant gratification for information....and there are heart related groups and icd groups on all of them..I posted on several other forums similar to this (not heart related) and they are a dying breed...Ive also noticed a trend of people having a lot of notice prior to receiving ICDs that wasnt happening back in the day i got mine...so people now seem to do more investigation prior to their implants and be a lot more knowledgeable than when i got mine for one....Ive been on a couple of facebook icd groups, but they just werent for me..

those that click on here and feel its some place theyd like to post, will continue ...it is what it is...
I think.....Therefore I am.!!!!!

Leedur
Posts: 366
Joined: May 24th, 2015, 10:25 pm

Re: Why Reduced Activity on Forum

Post by Leedur » June 13th, 2019, 8:37 am

MKM.....about people getting a more advanced notice as to the need for an ICD and having time to research. I think I was told on a Tuesday and they wanted to implant 3 days later. I put off until Monday....6 days later. They stressed the immediate need as I had 3 recent episodes of near fainting. So it was not just a lower (30) EF that prompted this.

User avatar
mykidsmom
Posts: 3980
Joined: February 9th, 2012, 5:09 pm

Re: Why Reduced Activity on Forum

Post by mykidsmom » June 13th, 2019, 11:00 am

i hear ya Lee...you were lucky though...i woke up with an ICD lol...no discussions no pep talks...id been in a coma, first day out of the coma i apparently was implanted....i wasnt awake lol...

but i noticed on one of these facebook sites people seem to be warned in advance they'll be soon getting an icd i guess theyre lucky....but im sure theres still people like us it happens fast for...... i know 2 people personally who are slated for implants this summer..and the guy in ireland is researching like mad and in a panic.
I think.....Therefore I am.!!!!!

User avatar
TruckerRon
Moderator
Posts: 3262
Joined: February 22nd, 2010, 8:52 pm
Location: Provo, UT

Re: Why Reduced Activity on Forum

Post by TruckerRon » June 13th, 2019, 6:16 pm

All I can say for certain is I haven't kicked anyone off. Ticked them off, maybe...
punisher
TruckerRon -- Received Minion I on 17 Sep 2009, Minion II on 26 Jan 2015

Non-ischemic cardiomyopathy
Medtronic Viva XT CRT-D
No shocks yet...
My intro is at: http://www.icdsupportgroup.org/board/vi ... 099#p57099

User avatar
Jeanneinca
Posts: 133
Joined: June 3rd, 2011, 9:41 pm

Re: Why Reduced Activity on Forum

Post by Jeanneinca » June 14th, 2019, 12:07 am

I moderated a message board from 2002 to about 2010 called Solving the IC Puzzle. IC or interstitial cystitis is a horrendous syndrome that is very difficult to heal. For years the message board was extremely active. I would post for about 8 hours a day to help woman trying to heal their bodies and their lives.

With the advent of Facebook we lost a lot of new members because they wanted a single magic answer to instantly heal from the syndrome. They were not willing to work on healing everything that brought them to Interstitial cystitis.

Eventually we discontinued the message board because there were so few members.

User avatar
mykidsmom
Posts: 3980
Joined: February 9th, 2012, 5:09 pm

Re: Why Reduced Activity on Forum

Post by mykidsmom » June 16th, 2019, 8:57 am

we have become a nation of people who require instant gratification havent we
I think.....Therefore I am.!!!!!

Post Reply