Monday, February 18, 2008

MS Forums Online - Where do you go to talk?

It recently came to my attention that there may be a few folks looking for fresh places to pull up a chair and talk awhile, vent, or ask questions of those MSers who have gone before them on this path.

I'm talking about MS Forums and Discussion Boards.

Personally, I'm not much for online discussion boards or forums. I used to be active in one which was made available by Teva Neuroscience, maker of Copaxone, but they shut it down for reasons not fully explained.

My feeling at the time was that it was becoming increasingly apparent that patients were contacting each other off the website and offering real help to one another. Too dangerous I suppose since a recurring theme went something like this....

- "I'm switching meds and have 2 months worth of drug x in my frig....what do I do with it?"
- "My co-pays are $500 each month for drug x (approaches person above)"
- "Remember folks, transferring prescribed drugs is ILLEGAL!!"
- "But I hate to just put it down the me"
- etc.

Then there are the forums which have gone to moderating all entries. MSWorld does this now and even prohibits the inclusion of links to other websites, including blogs, in individual messages. That kinda makes the whole spontaneous conversation impossible.

I'm sorry - I'm not patient enough to post something and come back 30-60 minutes later to see if my comment was approved and if there were any responses, which also had to be approved. Give me a break.

But there are some good forums out there, including this first one which is absolutely brand-spankin-new and showing great promise. Me and My MS was started by fellow MS blogger, Jeri of Fingolimod and ME.

Me and My MS - "A journey into the unknown that you don't have to travel alone." I know that some of the most active MS bloggers have already gone over there to get things started.

Not New - But looking for Activity

MS Christian - not yet abandoned but ripe for new activity

Active Forums:

MS World - sponsored by National Multiple Sclerosis Society (USA) and various pharma companies

MS People UK - sponsored by Multiple Sclerosis Trust (UK)

MSRC Sharing Forum - sponsored by the MS Resource Centre (UK)

This is MS - unbiased and unaffiliated website

MS Refugees - started by members of the original MSWatch Forum which was closed (see above remarks)

MS Foundation - sponsored by the Multiple Sclerosis Foundation (USA)Four forums in one: Ask the Doctor, MSFriends, MSFrontiers, MSFamilies

MS Speak - sponsored by The Montel Williams MS Foundation

Brain Talk Communities - originally sponsored by Massachusetts General, but now an independent non-profit

Inactive or Abandoned?

MS Support Network - sponsored by Multiple Sclerosis Mobility Foundation (Canada)

MS Log Forum - seems to be somewhat abandoned but local to Minnesota?

Then there are the newer online communities which are a feature of the Web 2.0 movement.

Patients Like Me - "Share your experiences, learn from others, andconnect with patients just like you."

Health Central - MS Central - Where our very own Mandy of MSMaze is a featured expert. "Our experts are people whose passion, dedication, and proven experience make them leaders in their community."

Revolution Health MS Support Group - "Join discussions, share stories and find people like you."

Live Journal MS Support - LJ Users with MS

Finally, we have the friendly community of MS Bloggers. Check out the enormous list of links on the left-hand side of the page. Lots to read.

I'm sure I've probably missed some. If so, please leave me a comment and I'll add them on.



  1. I was on serveral message boards and got the same issues as you were experiencing.

    I am trying PatientsLikeMe and MyMSMyWay and others. So far, blogging works for me.


  2. Oh yes, Jim, I forgot to include places such as Patients Like Me and Revolution Health. Oops, I better go add them now.

    For me, the blogging is much preferred.

    Thank you.

  3. You have a very nice blog, good post…keep up the good job

  4. Thanks for the plug, Lisa! :-)

    I started my message board for 2 reasons...the over moderation on other boards and I felt there was something lacking in a meeting place for sharing info regionally.

    Say you have a support group that meets once a month. You could have me set up a regional board for you to discuss any upcoming events etc. and it would be an online meeting place for your group as well as the rest of us. Sort of a board within a board.

    It's just a new idea and it may take off or it may die an agonizing death...I just had to test it out. :-)

    Anyhow, thanks for posting it. ~ Jeri

  5. If you'd like to be heard as well as read, you could give a shout out to MSB [ ]

    There's about, make that over 150 episodes to listen to and 250 episodes to read.

    Drop me an email charles (at)

    I don't have any axes to grind, just things to learn.

  6. Blogging. I can't keep up with boards, my computer usually poops out mid-sentence.

  7. left a comment but i guess it didn't take. yeah...the boards and forums are good for when you are first diagnosed but then the same issues are discussed over and over. there are some very helpful people though.