This listserv was launched the week of 3/12/07. I am learning how to use it myself. I went to beating-myeloma.org, clicked on forum/listserv, signed up as a member then clicked on the "submit a forum topic."
I encourage anyone reading this to join and contribute. Thanks
David Emerson
Hey, y'all, I am just testing this out. Is there a way of posting without coming to the website, though? That could be a drag in the long run. Just a thought from a difficult customer (wink!).
Take care, Margaret
In answer to your question.... We have made a compromise between ListServ and Forum. A typical ListServ can be a great thing, but at the same time it can be a nightmare. For a ListServ to function effectively, it needs one of two things initially: 1) trust, that people won't abuse it and start spamming others with unrelated and counterproductive messages, or 2) heavy moderation.
If we allowed anyone to reply to any email and allowed their reply to be forwarded automatically to every user, you could imagine how easily this could become abused - especially if a spammer discovered this. To avoid avoid spamming, most hosts would simply employ heavy moderation - where a large percentage of the posts need to be approved before they actually get sent out to everyone.
We have chosen a compromise. By asking people to follow the link in the Digest emails, we are eliminating the easy accessibility for a thoughtless reply from a member or a possible mischievous reply from a spammer. By asking them to do this, it also brings them back to our site, which is also another very important part of our mission.
For additional information, please visit
http://beating-myeloma.or...
I must be doing something wrong. I posted something about a half hour ago, and it hasn't been delivered to my e-mail address. Que pasa?
Help!
Margaret
Please delete these first posts. They are just tests.
We have elected to send out a daily digest of the Forum postings - Meaning that subscribers only receive one email per day that contains all the postings in the last twenty-four hours.
Through our experience, we have learned that the wide masses prefer a daily digest as opposed to numerous emails per day. While this wouldn't seem to be an issue right now, as this feature is still young to our site and there is a trickle of postings - we are optimistic that this will gain popularity and there will soon be a large quantity of posts per day.
To maintain one of our goals, to simplify the site so it is accessible to all users, we decided to choose this option for all users - instead of cluttering the subscription or registration page with one more silly checkbox and confusing explanation.
For more information, please visit
http://beating-myeloma.or...
I'm just checking in to see if I'm doing this right. I think it's a great idea, and will be looking forward to useful communications with fellow members.
Thanks.
Ok, I agree with the once-a-day mailing. But I repeat, it really is a drag to have to come here in order to post. At any rate, I will try not to be a lazy bum, if that's the decision.
Thanks for your comments, Margaret
I'm having fun reading Robert's, Margaret and Sunnylady's posts- thanks to the members for helping and thanks to Robert for working to get the listserv right-
David
Margaret and Sunnylady- I am seeking your opinions- If I want to respond to a post, I click on the "comments" link to take me back to the forum to post- linking back to the forum doesn't bother me but I would like to be able to highlight a specific portion of the post that I am responding to- What is your opinion on this?
David
When David highlights text in his email client and clicks reply, it automatically copies the text he highlighted into the reply window. This is a feature exclusive to his email client (He uses Entourage, Microsoft's version of Outlook for Apple computers) and possibly a few others (such as Outlook, Outlook Express, Apple's Mail.app, etc). This means that only a small subset of people who receive the daily digest actually have this feature - because most people have Gmail, Hotmail, Yahoo, Aol email accounts that do not have such a feature. People who use these "web-based" email services won't be able to use the same process as David. When those people click reply, it copies the entire email into the reply window. So when they reply to the ACOR ListServ, for example, they're the ones that have included the full text of the ACOR ListServ email with their reply. Whereas David only includes a small subset of the entire ACOR ListServ email - the portion he highlighted. This is one of the reasons why we do not accept replies to our ListServ Digest emails that we send you. We have found that it is much more clean to link back to this site for people to post replies.
David, I don't know if you can do this with a Mac, but I can use the right-hand button of my mouse (I have a PC) to copy and paste something, and that is how I would solve that problem. Like this: "I would like to be able to highlight a specific portion of the post that I am responding to," which is part of your post. I don't remember how Macs work, even though I had one a long time ago. Sorry, not much help...
Margaret
David, I am not well versed in highlighting, copying and so on from e-mail. I do fine in Word with my PC. If you have a MAC, I am totally at a loss. However, my brother is coming to visit from California in a couple of days and he has a MAC. I can ask him about this technical question. If your question is more in reference to if it is a good idea to do that, I think it's fine and efficient as well.
Reading the listserv help was helpful- I click on the link at the bottom of all posts and I then link back to the site. I like this as I can then read the string of posts- in this case posts from Margaret and Sunnylady about posting. I read the string, I fill in the subject, then I write my comment- I will then read my post tomorrow when the digest show up in my email box.
Just now I scrolled up (way up) and clicked on the "listserv help" to re-read some of the help- I then came right back to my post mid-comment, finished this post then I will click "post comment." This listserv is different from the mma and acor listservs but it is more useful.
David
When I am reading posts all the text is centered. But when I am trying to read replies to my post or make a reply the text is off center enough to the right that I copy and paste to another document so I can read it all. Could this have anything to do with my using Mozilla Firefox instead of Internet Explorer? Or is there just an easy fix that I am overlooking. there is no scroll bar at the bottom of the page to scroll the text over.
Linda, we've been continually improving the site and I just wanted to take a moment to check with you to see if you are still observing this type of unexpected behavior from the site. You are correct... Internet Explorer, Firefox, Safari, and other web browsers all render websites quite differently. However, we spent a great deal of time debugging the different rendering issues before we released the site, so there shouldn't be much difference across browsers or operating systems. We welcome emails and screenshots reporting bugs as they can help us more quickly isolate issues; we're greatly appreciative of bm members help locating such issues. Please feel free to contact me if you experience any further issues. Thanks again for your assistance, Robert
Robert,
No problem anymore with the text being off center so that I couldn't read all the post. I thought someone must have corrected the problem after I wrote. I do recall though that I also downloaded an update to the Firefox browser which may have corrected the problem.
thanks
Linda
How do I get the newly diagnosed packet? it seems there is nothing to click on. Thanks. LIsa
This time, when I tried, I was able to click on the newly diagnosed packet link - but i got a page saying access was denied!Lisa
Lisa-
I will forward your post to Kosada to address- the newly dx info packet will be emailed to you- regardless, we will solve this problem-
David
Still haven't gotten the newly diagnosed packet.
Also, I had a suggestion: i wonder if there might be a place on this forum for people to post regular updates on their test results, things they are trying, etc. Sort of like a little blog corner. I used to be on several vision improvement lists (that is one thing that led me to the world of alternative medicine - my experiences in improving my vision naturally - yep, it can be done, although it is a LOT of work) and one list had a section where members could start their own blogs and chart their progress. It proved very useful.
Finally, I still wonder if there is any way for people on this forum to contact either other privately, should they choose to do so? it would be a nice feature if that could hapen.
Lisa-
I will have your newly dx info packet emailed to you this week. My apologies.
Re posting regular updates on various therapies- the patient studies (curcumin patient study is the first) are intended to be used as a sort of database for people to log and track their progress- the first version of the cps and questionnaire is to be tested this week. More to come.
As for member blogs, I would talk to Margaret as she started her own several months ago- how to do it, how much time it takes each day, where to place it (healthblogs.org) daily traffic, etc.
As for contact to individuals, I will post this info this coming week-
David
Just a reminder. The Beating Myeloma Newly Diagnosed Packet is mailed to members at time of registration. If a member did not receive a Newly Diagnosed Packet, they're asked to check their spam folder or trash folder in the email client to ensure that their spam filter didn't accidentally mark it as spam or that they didn't accidentally delete it. Thanks, Robert
Just an update.... We're working on the beta version of the "Patient Study" software to run the patient study section on our site, which will first feature the "Curcumin Patient Study." We'll later begin adding more patient studies, but our intentions are to soon pre-release the "Curcumin Patient Study" as the initial, trial study for this new section on the site. You should look forward to hearing more about this project very soon. Thanks, Robert
Yeah, can't wait to see the Curcumin Patient Study! Keep us posted, please, Margaret in Italy
all-
As Robert has mentioned, Kosada is working hard on several projects all to be rolled out in the next several weeks. Next week, Kosada will replace the basic listserv management software. This should help with posting and formatting issues. The CPS is still several weeks away but I think will be worth the wait so hang in there. If any of you have a problem of any kind with the listserv, site or sdi's, please submit a bug report. Feedback for any reason is greatly appreciated.
Thank you all for your patience. David
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