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Suggestion for this site - Geographical groups
Posted: Sun Apr 13, 2008 10:50 am
This is a suggestion, or, really, a request, for something that I would find vitally useful, and I think many others here would, too.
That is to create an area on this site with forums organized by geographical region. It could be U.S. - West Coast, East Coast, Midwest, Southwest, Gulf States, or even as local as Tri-State Area (NY-NJ-CT), Northern California vs Southern California, etc.
A lot of aspects of treatment are geography-specific. Most clinics, trials, doctors, and events are really only immediately useful to people who can physically get to them. I spend a lot of time searching these forums, and I learn a ton of stuff, but it would be really helpful to have an area to go to so I can keep abreast of upcoming events. I also want to be able to find and communicate with local MSers who can report on their experiences with the neurologists and other health care providers in my area.
I'm just positive that this kind of local-scaled information sharing would help most if not all of us, in addition to the wonderful resource of the site as it exists now.
So I put it out again to the community, and to the administrator: Do we want this? If so, can we make it happen?
Posted: Sun Apr 13, 2008 11:47 am
I don't know that the board is active enough to support different regions, and there seem to be a lot of sub-boards already.
On the other hand, shared info about local physicians, trials, etc would be very valuable.
Posted: Sun Apr 13, 2008 11:55 am
The Brits and Canadians keep this site going so we wouldn't be catered for. The main US contributor is Lyon, so I'd be happy for him to have his own geographical forum (red-neck state). Then I could avoid reading all his drivel.
Posted: Sun Apr 13, 2008 12:38 pm
Might end up just talking to myself (now, now, no smart comments
) not sure there are too many others from Ireland?
Posted: Sun Apr 13, 2008 12:57 pm
I would definitely be talking to myself - don't know any other folks in Africa on this board - but I was born in Northern Ireland, so maybe we could form our own locality - for solidarity (North and South are now on amicable terms, I hope)?
Just kidding, but I like having everyone together because I get so many different perspectives - love it as it is, but would like even better - real-time chat (I know this has been raised before, so I am not raising it again
Posted: Sun Apr 13, 2008 3:59 pm
Posted: Sun Apr 13, 2008 4:37 pm
I agree with Rainer that there are probably not a sufficient # of members to make it work well.
That said, the only listing of neuros that I've seen is by state on the CLAMS
site. If you scroll down you'll see the link to The Good Docs List
As for events in SoCAL, personally I think it would be great if someone could attend the The Nancy Davis Foundation Race to Erase MS--MS Roundtable
on May 3rd and report back. It looks like a great opportunity to ask some of the leading researchers questions, but whether or not it really is, is of course another issue.
As to clinical trials, the Clinical Trials
site usually lists locations of participating centers. That just happens to be the link to the info I got searching MS and Los Angeles.
Best wishes to you and please let us know if you go to the May 3rd event and what you learned. Thanks!
Thanks for the links especially
Posted: Sun Apr 27, 2008 11:35 pm
Thank you all for your candid replies. Thank you, Shayk, for the links to sites that I had not found previously.
I think the "good docs" document at the CLAMS website is not kept up to date; there are some oldsters on there who are in semi- or complete retirement. I found this document via Google search right after I was diagnosed, and it listed the neurologist who first Dx me, whom I was soon to fire as soon as I learned a few things about MS. So if he got on the short list of 42 neuros in California, I have to take the list with a fistful of salt.
I had seen that the ThisIsMS community included some very active members in the UK, Canada, and Africa (and Downunder, too, I believe). I am glad about that, and some of them welcomed me warmly when I introduced myself here. I like this site a lot; I just wish there were more American and esp. Californian PWMS using it.
Longing4Cheese (Jack Sprat)
Posted: Mon Apr 28, 2008 3:56 am
Yay for the Brits and Canadians!
Posted: Mon Apr 28, 2008 6:15 am
This site is my favorite MS site and I have learned a lot from coming here. I would not want it segregated by area because I see no point in doing that.
People from various countries constantly post new ideas, research or positive treatment options that I would not be aware of if I stayed strictly with American forums.
There are quite a few sites that cater to Americans and you should be able to Google oodles of them if you are interested in trying to find geographical groups of people.
MS is an international problem and the more we can help each other out, the better for us all. If you watch the online viewers figures, there are usually hundreds of people silently watching who have not registered and who do not post. My guess is that a large number of them are Americans.
This is a little different MS website than some others because it seems to focus on treatments and research rather than the hand holding and off topic posts that are endemic on many MS forums.
Posted: Mon Apr 28, 2008 8:37 am
I totally agree. This site is positive, everyone make positive contributions and people are looking here for what they can do, not the negativity I have seen on some sites. To have people from all over contribute it extremely beneficial. I would not want this to be separated. We can learn so much more from many perspectives.
Just my 2 cents!
Regional Forums - to Help People Find Each Other
Posted: Tue Apr 29, 2008 7:54 am
I want to clarify what I am proposing. Like everyone else, I greatly value the global inclusiveness and diversity of the site. I don't think any of us need to be told that MS is a disease without borders, etc. etc.
It's a matter of organization, not "segregation." The site is already "segregated" into drugs, but that makes sense: if you're taking Rebif, you want to be able to go to an area where everybody's talking about Rebif, because that's a huge part of your life, in certain ways. But where you live is an important part of your life and your MS treatment, too. Having drug-specific forums doesn't ghettoize people, it helps them find each other. I think that, for certain geographically-specific topics, people could use more help finding each other.
It's like when you need to buy something today and you go online and Google it, and shops come up in other states and countries: not that useful to you! Searching for "MS Los Angeles" on this site that only works if someone includes the words "Los Angeles" in their post.
If someone posted in a hypothetical So Cal (Southern California) forum about a good or bad experience with a doctor in West Hollywood, and the post veered into the territory of general interest (like drug pipeline, or Copaxone, for example), either: 1) the poster could be responsible for posting in the appropriate forums, 2) the moderator of the local forum could recognize any general interest and put it there. It might sound complicated, but doesn't this sort of thing happen sometimes already, and it still works? I mean, aren't there sometimes posts that veer into multiple categories (Copaxone post also references Avonex, or Vitamin D, or Omega-3s, etc.)?
Cheeseless in L.A.
Nancy Davis Foundation MS Roundtable
Posted: Tue Apr 29, 2008 8:25 am
A couple more comments:
Thanks again, Shayk, for the link to the Nancy Davis Foundation MS Roundtable this Saturday, 3 May, 2008.
The roundtable lineup includes some of the biggest names in MS research in the U.S., both west coast and east coast, and I'm definitely going to be there. I hope to have the time this week to read papers by the panelists to find out what their special areas have been, and to prepare some questions to ask them. I'm relatively new at this little hobby (!), so I feel a bit underqualified compared to some of the folks here, but I'm going to get as much out of the "roundtable" as I can.
gwa, you wrote:
"There are quite a few sites that cater to Americans and you should be able to Google oodles of them if you are interested in trying to find geographical groups of people. "
Could you tell me some examples of sites that cater to Americans on a local basis? That sounds very useful, and somehow I haven't found anything local other than the local chapter of the National MS Society. The NMSS-So Cal chapter should be a clearinghouse for So Cal information, but they have NO mention of the Roundtable on their "Events" calendar. I sent them an e-mail about that last night; I'm looking forward to their reply.
Lastly, if what GWA says is true, and there are hordes of silent Americans lurking and reading this site, I'd like to encourage them to step forward and participate. It might be the first time in history that Americans had a l tendency to be reticent in contrast with other cultures, but, if that's the case, I say, "Come out, come out, wherever you are."
I really like this site, and I really like the English, the Irish, the Aussies, the Canadians, the entire Anglophone diaspora, but please, shy Americans, speak up! Especially if you have PPMS (Primary Progressive MS), and REALLY especially if you're in California / Los Angeles (advocating for my local MS community...even if they're not here yet).
p.s. I don't mean to exclude non-Anglophone MSers -- we love you, too.
Hail to the Brits, et al.
Posted: Tue Apr 29, 2008 8:35 am
Uh-oh. I didn't say "the British" because I didn't want to lump all of you together, but in so doing I unwittingly left out shout outs to the Scottish, the Welsh, the Manx (Manxish?), and, oh dear, the Northern Irish....
A Yank could get himself into trouble trying to parse it all out.
So I guess I'll have to give up and just say "the British" like everyone else. Er, I mean, the British and the Irish.
-- Stilton-less in L.A.
p.s. Salut aux Français aussi!
-- sans fromage en californie
Posted: Thu May 01, 2008 1:51 pm
Ahem...! Those of us (or at least me) in Africa? Nkosi sikelele Africa...Viva Madiba etc. We did win the Rugby World Cup 2007, and as such, are much more important and relevent than the Brits (any of them) and the Aussies!
Ha ha just teasing...