Why are there so few new discussions?

Beansy I haven’t been on this site in a very long time but Louisa told me about this post. Truth is this site isn’t what it used to be. If I could figure out how to email you on this site from my phone I would.

Not too hard really the last 43 threads replied to are on the right (home page) and are noted as to whether or not you have read them (number of unread posts is in a blue bubble). If you want more just click the more at the bottom of the list.

There has been a hair over 50 threads in the last week and with replies actually exceeds the highest level of activity ever as has the number of new members. There are over 2000 page views per week from members and over 10,000 more from visitors. Sorry if you are all missing out.Truth is the site isn’t what it used to be and is serving many more patients

If want to message someone click on their name or avatar click on message and it will email them. There is no direct access to email for security reasons as anyone could see it an access it. BTW the of messages between members is also up (about 60 a week) as are the number of mobile users (about a third are on mobile users) The download of the apps has been a bit slower with only 5 since Monday. The apps will send out notification of all activity

TJ

Sorry, but I don’t see any old friends I had, you have me listed as new and keep awarding me things. I have been here since 2010 at least. I was never lost in the old site. You had to be a friend to send a private message, and the email never showed anyone’s real email address. I don’t see request friend anywhere, so I guess anyone can send a message through the site. That is not something I want unless I am a friend. And I made a contribution because I used to love this place.

beans

The friends thing was explained ad nauseum for weeks before the move that personal information would not be able to be retained and the “friends option” was not available although the opposite was… Threads on the site and at least 4 emails that I am aware of. Its all covered in the FAQ. (items 6 & 7)

The new site has a trust system based on activity and time spent on the site. FWIW To move to level 1 or basic from “new” requires: (BTW You are basic not new)

  • 5 topics entered
  • 30 posts read,
  • 10 minutes on the site.

I would imagine anyway who hasn’t done that would have difficulty with the site.

Trust level 2 actually requires participation on the site:

  • 20 topics visited
  • 100s read posts
  • 60 minutes on the site
  • 15 visit the site on 15 different days
  • give 1 like to a thread
  • Receive 1 like for a response
  • 3 topics replied to.

The site does give you “badges” for every task you complete. Because your progress is noted on your profile, its pretty easy to know whether difficulty with site is really a site problem itself, or the fact someone hasn’t made any effort. Why heck you even get a badge for reading the directions, guide, and FAQs. so we know again whether its a problem with the site or someone hasn’t even tried by reading the directions. Its a lot easier to make changes and take seriously “complaints” from folks who have spent some time on the site, tried manuevering through it and even tried using the help resources. We are limited in what we can change but we do try and there is always someone available to help you through a situation Just follow the instructions for contacting someone (box up top)

Hi Beansy, your reply went to my email ■■■■■■■■■■■■■■■■■■■■■■ I am
electrician on site, also having same issues with site,

Hi electrician, because you replied to the thread earlier you automatically receive all later replies. You can unsubscribe from the thread by clicking the blue button beside the word “Tracking” at the bottom of the page. Hope this helps!

Meli from Mod Support

I was aware when the site was changing. There was a mess with my password being changed. Probably caused by me. No, I did not read the directions, or get into anything else at the time. I was ill at some point last year, I live alone. I have a hard time reading (and am very careful to not read what does not concern me or interest me. I just thought you would move the data) It is because of the AVM that I am severely visually disabled, and both are the exact reason I am here. Also, I had no cable service for over a month when Verizon Fios pulled out of Florida with barely any notice.
I was maybe one of the most excited people to find the AVM Survivors website. No one in my life had any idea what an AVM is. No one in my life knew what homonymous hemianopia is. This bleed happened in 1959. The world was so different. So I searched the internet in some year for Arteriovenous malformation. I found two sites. One was this one. I was surprised and then overwhelmed I could finally talk about what had happened to me, to others who knew.
This will defeat me if I can’t figure it out. I will try…

beans

Don’t know how, except an email from the site.

If anyone can, you will. really the easiest is start at the top of the right hand corner and read down. That is every post EVER made in order.

messaging is actually easier. If some reason you recieve a message from someone you don’t want to message with (which is essentially a “friend request”) jusd asdd their name to the muted list in your preferances:

If you click on their avatar you casn immediatly message, if y click on their name you get all their info.

Every converstaion you have stays in your in box although you can move them to different files:

You can actually invite others to your messaging and set up a private chat that way. You actually have more capability. than before. zWe can talk you through anything we have a thread just for that:

http://www.avmsurvivors.org/c/site-feedback I have that category set to instantly notify our support team. we are not here 24/7 but close. We’ll be right to you.

Yes, electrician, I know. I was wanting @Valeriehassan to tell me about what she said earlier:

I was given a password and it doesn’t work so gave up in the end but follow butterfly AVM on Facebook.

Sorry, I should have been clearer. But you also said

also having same issues with site,

Do you want to expand a bit on that?

Seenie

Mod,. Got it, that makes sense, thank you,

Hi Beans,

I must admit that I rarely visit the site now. I have a lot of issues with reading and the change in the site has made it extremely difficult to navigate. There is no longer an Australian/NZ group and the occipital group is no more. It was a great group as we all had common experiences we could share with new members. I’ve lost all of my contacts too. I drop by occasionally but the site is too cumbersome for me to use effectively any more.

It is goo to see you still posting.

Cheers

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