Where has everyone gone?

[REG53]

Seasha, quality over quantity makes a lot of sense.

[rdmc]

I've been around for many years. These days I don't comment much, mostly read, and if I have an especially pertinent take on the issue, I will post. But in many threads, what I would have said has already been said by someone else, and that's okay, I see no reason to reiterate.

Back in the day the threads would be off the front page in a matter of hours, and we'd have to bump them up just to keep something on the front page.

I agree that people expect everything quickly these days. Merchants can get something to you the same day you buy online, who could have imagined. Order your groceries and they're at your house and on your counter in less than 2 hours (btw, this has to be the best favor for an MSer...usually my husband is great, he gets everything we need without even writing him a list, but sometimes, especially if you want some specific things, it's just there, voila!) I found I was withdrawing from speed and constant social media, so I quit going to FB, twitter, but I do keep Instagram so I can see all the cute photos and videos of the grandkids)

So that being said, forum "attendance" dropped off when mods got fewer and slower at posting replies, but that's sort of a chicken or the egg remark because it might seem they were slower at posting replies, or maybe there were fewer replies so there was less to post.)

Also we went to a time when there seemed to be "medical experts"...they weren't labelling themselves that way, but they made replies about medical issues, and sounded authoritative on subjects of health you'd assume they were better with a medical answer. Some posters would even title their thread with the title including a "username" asking the so-called "medical person" to look at their thread. That went on with several subsequent posters, when one would fade away, another would appear...I don't see that anymore, so I don't think that's happening anymore. But it seemed to take some "steam" out of the reason to post since they really only want to hear so and so's response.

Well that's my 2 cents...I'll try to comment more, because I'm guilty of browsing and not commenting.

[KoKo]

I really like to think that quality over quantity (of participation and number of posts) goes a long way, thanks to all you wonderful people

Absolutely, Seasha!

So many of the posts here have several paragraphs with valuable info, or personal experiences.

Contemplation - I like that word!

Take Care

[Seasha]

My responses require contemplation... even the decision to post at all (Can I add to this in a positive way? Am I qualified to respond at all?). I believe this is true for others.

The thread poster deserves a responders time to digest the question.

I do not object to any "instant posting and peer to peer messaging" being introduced, but the very possible sacrifice to a post which required honest, thoughtful contemplation.

Just my humble opinion.

I haven't replied to this thread yet, but I agree on this train of thought.

I understand that Facebook has many participants who wish to go this route and that is wonderful! We are here on the message boards for who wish to be here, even though we have slower responses, or to be here just to read others stories and comments.

I really like to think that quality over quantity (of participation and number of posts) goes a long way, thanks to all you wonderful people

And btw, PMing has not been a feature for a very long time, nor planned for in the future based on safety and security purposes. So too, the "instant posting" for the same reasons.

[Tawanda]

For sure that is a factor in my case. I started Gilenya during trials and have been on it ever since. I was DX 3 years after first symptoms and started G 2 years after that. So I guess that makes it almost 10 years on G with something like only 2 relapses in that time.

Let me tell you I am super apreciative of those who came before me and suffered so much and built a network of support, and research that has allowed me to have so much success. Sadly the flip side of that is being mostly normal means I'm not on here as much to pass on that support.

So thank you to all the "early adopters" who's stuggles have lead to my success.

How refreshing! I am curious if you grapple with fatigue? I could work with a ton of other crummy MS quirks but my fatigue is totally what did me in.

[Boudreaux]

Good points Jerry.

I think faster posting leads to the faster transfer of information which is great if you're a newly dx'ed person looking for answers. That's how I found this place, looking for info.

[Mamabug]

As a moderator, I believe that we (as moderators) likely should talk about the suggestions. Those options were both removed prior to my time as moderator; I'm not aware what the reasons were.

As a member, I don't recall that waiting for moderation bothered me, personally, in the past. In the present, I'm now able to post instantly, so waiting doesn't apply to me anymore.

For those who prefer more instant conversations, chat is an option instead of message boards. Some members use both. That would allow for thoughtful contemplation on the message boards, as well as back and forth conversation in the chat room.

But I did like the private messaging feature. Sometimes, private messaging is a good way to connect regularly when we find someone with whom we have lots in common. I have a friend from California, a former MSWorld poster. We got together once a year for quite a few years because her parents lived near to me.

We know each others' spouses and parents.
We continue to be good Facebook friends.

She no longer has reason to visit Kansas because her parents don't live here anymore. But our friendship would not have blossomed without private messaging.

[502E79]

MSworld is competing with other forums that allow instant posting and peer to peer messaging. I think this difference is a huge factor in the dwindling participation. The moderation strikes out any chance of having the feel of a conversation.

Perhaps you all would consider piloting those options without committing to them. Just to see what happens as newbies arrive and oldtimers realize the options exist.

My responses require contemplation... even the decision to post at all (Can I add to this in a positive way? Am I qualified to respond at all?). I believe this is true for others.

The thread poster deserves a responders time to digest the question.

I do not object to any "instant posting and peer to peer messaging" being introduced, but the very possible sacrifice to a post which required honest, thoughtful contemplation.

This is "like button" thinking, more "sound bite," less discourse... quick, quick, quicker! Once made available and at some point, it will be, then "look how quick & witty I am" replaces mindful rhetoric.

Just my humble opinion.

[Temagami]

MSworld is competing with other forums that allow instant posting and peer to peer messaging. I think this difference is a huge factor in the dwindling participation. The moderation strikes out any chance of having the feel of a conversation.

Perhaps you all would consider piloting those options without committing to them. Just to see what happens as newbies arrive and oldtimers realize the options exist.

[REG53]

TaoWarrior, so glad you are doing well.

Mamabug, I love what you said.

[Mamabug]

TaoWarrior -
Support can happen in many ways. Some of us have been through more years and more challenging symptoms than others. Perhaps we can offer wisdom.

You can offer friendship and encouragement. We're all in different places with our MS. We still all have something to offer.

[pennstater]

TaoWarrior - thanks for sharing. I am so happy to hear you are doing well. I love when I see people who have had success on DMTs and are able to go ahead living a pretty normal life. While a cure and a preventative vaccine would be the ideal, until then, I am glad to celebrate stability and normalcy.

[TaoWarrior]

Does anyone think it's possible that the younger PwMS are diagnosed quicker, put on a DMT quicker, and can stay in the workforce longer (or until they can retire at a suitable age like everyone else?)?

For sure that is a factor in my case. I started Gilenya during trials and have been on it ever since. I was DX 3 years after first symptoms and started G 2 years after that. So I guess that makes it almost 10 years on G with something like only 2 relapses in that time.

Let me tell you I am super apreciative of those who came before me and suffered so much and built a network of support, and research that has allowed me to have so much success. Sadly the flip side of that is being mostly normal means I'm not on here as much to pass on that support.

So thank you to all the "early adopters" who's stuggles have lead to my success.

[ru4cats]

I know I have joined a closed Tysabri FB group, and I really try to present the new information on Tysabri to encourage others to begin and continue on the drug. I come here once a day to make sure Myoak hasn't downloaded new information that is important to add to my collection, LOL. That man is an unbelievable resource!

[pennstater]

I think it is part of it. I see younger people (20s, 30s, early 40s) at my infusions who are doing well. Tysabri their first DMT, no new relapses since starting on Tysabri, no worsening of symptoms, keeping up with kids and still working. Some of them are now over 5 years out from diagnosis.

I had asked before if they ever came here. They said that they really didn't feel the need. They were also intimidated by reading more progressive stories on any site, as it represents their fears.

They mostly get support and understanding from people getting infusions, and we do have a small closed Facebook group for people at our infusion site. There are a few members who have more progressive symptoms and use canes, walkers, and wheelchairs. I guess they are not intimidated by them because they know their stories.

That's what I learned from talking to folks.