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 sink...email me"
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
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.