No Posts

[Pearl]

There are a lot of posts on the MDS Foundation site, but no posts here for almost a month. I like the format of this site.

[JoMac53]

Me, too, and yes, it has been quiet lately.

[Pearl]

Your last post was the only substantive post in the past month. I am not sure why the MDS Foundation has so much more interest.

[Pearl]

Perhaps it is because this site is not visible online. When I searched for MDS Marrow Forums does not show up on the first page, but one link from 2013 does.

I wonder if the site founder and administrator has a thought about this.

[Neil Cuadra]

Forum activity slows every year in November and December. People are still fighting diseases, but perhaps they are also busy with the holidays.

Search engines prioritize authoritative disease information over informal discussions when you search for the name of a disease, which is appropriate. If you search for "MDS forums" or "MDS discussions" you're more likely to see forum sites in the results.

I think that patients should use all of the resources available to them, including these forums, the MDS Foundation's message board and, for those in the UK, the forums of the MDS UK Patient Support Group. There is also an MDS group within the Leukemia & Lyphoma Society Community.

[Pearl]

I have not noticed this kind of standstill in previous years. Of course, people should use every available resource. It is just that, as a discussion board, your creation is much more useful and much easier to navigate. Is there any thought of trying to promote the board.

[David M]

I have a suggestion... do with it what you will.

I try to check this forum most days... but sometimes a few days pass between views. The latest posts do not stay on "Today's Posts" for very long (I assume only 24 hours if no one comments on them?). If I don't check the site for a few days, the latest posts will have scrolled off and exist only in their appropriate forum folder. No problem, but...

To catch up on recent posts I may have missed, I could click through all the forum folders and check for new posts (not likely)... or I could log in and check under "New Posts" -- since this seems to hang on to recent posts a good bit longer. But honestly, I don't always want to log in -- usually I log in only to post an update or to respond to someone else's update... so "New Posts" isn't always something I see.

A suggestion might be to replace "Today's Posts" on the regular forum with the "New Posts" feature -- which is currently only available upon logging in. This might help people who are not able to check the site every single day to see some of the most recent posts a little easier... and perhaps even to respond to them before they exist only in their respective forum folders.

Just an idea... I will still enjoy and use this site either way!

[Neil Cuadra]

Thanks for the suggestion, David.

Today's Posts and New Posts work as you describe:

Today's Posts is on a 24-hour clock and gives the same results (at any given day and time) for everyone.

New Posts keeps track of the last time you visited, so it knows what's happened since then, even if it's been a while since your last visit. Since it stores this information in your account in the database, it requires you to be logged in, so it knows whose account to update.

People who visit only occasionally probably don't want to see every post since their last visit. They're more likely to browse specific forums or do a search.

For regulars like you, I'd suggest checking the Remember Me? checkbox when you log in, then don't log out when you're done looking around. That way the forum software will know you each time you visit, without the trouble to log in and out, and New Posts will show you what you've missed. Technically, it means that Marrowforums leaves a cookie in your web browser that it uses to recognize you.

With some social sites, staying logged in has a disadvantage, because the site may track your online activity. We consider that an invasion of privacy. Marrowforums counts views of forum threads (anonymously), counts the number of posts you've made, and notes the last time you visited, but it doesn't otherwise track what you do online. The primary reason NOT to use the Remember Me? feature is if someone else has access to your computer, or you're using a public computer, because in that case somebody else could visit Marrowforums and have access to your account.

[Pearl]

I really hope some more ideas will come from this "discussion."

Until that happens it would be great for a few people make substantive posts. If there are some here who post on the MDS Foundation message board it would be nice to replicate those posts here to get responses from a different audience.

[GoodDay5150]

Hi Pearl. I am a frequent visitor here. I have met some PNH/ AA patients at a few different events in the last few years and I know that some of them do the FB/ social media thing which I do not. I am guessing that some people w/ MDS also communicate through social media. As you probably know, those of us w/ PNH (or in my case transplanted) are few and far between, so PNH related posts are also fairly infrequent here. Neil is right about fewer posts during the holiday seasons because so many people are busy w/ other things.

Mario

[Meri T.]

Hello Pearl, I agree, I like the format of this site too. Maybe the holidays keep caregivers and patients from posting.

I don't keep a diary, or a notebook for my illness. This site is how I know what I went through when I am asked at the hospital. The doctors/ transplant teams/ eye doctors etc asks When did it (itchy, inflamation, pain etc) start? I would look through my mails here, and pinpoint when it started.

Doesn't answer your question, but shows how helpful this site is for me.

Meri