Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
It would be great if someone with more energy and time than I would start a member group where we could keep our favorite links and posts, especially for new members, but also for quick reference for the rest of us. Gwynn's and TJ's links get lost in posts, it is important to get our hands on the Emergency materials that Bruce mentioned, and Ross patiently explains the links to MGFA and the Handbook for Professionals and his crampy (not crappy) site every few weeks and although I can find some of the links and bump up the "Links" discussion, it would be helpful to make it easier to access.
What is needed is a moderator to start a group and keep it current. Other administrators can be recruited to help. All that information is on the DS home page. Unlike the main board, moderators can modify the postings and there is evidently a place for news, where the old stand bys can live and Sherry and Cathi can post new studies and perhaps others tantalize those of us who couldn't go with upcoming links to the myasthenia meetings of this spring.
Since most people end up posting only on the mainboard, it seems that specialized groups become inactive, but I think a group like this might help. If there is anyone willing to be moderator, I am quite willing to provide some of the "lost links". b.
By the way, are any of you getting notifications or activity feeds? Last I heard they were "working on it."
What is needed is a moderator to start a group and keep it current. Other administrators can be recruited to help. All that information is on the DS home page. Unlike the main board, moderators can modify the postings and there is evidently a place for news, where the old stand bys can live and Sherry and Cathi can post new studies and perhaps others tantalize those of us who couldn't go with upcoming links to the myasthenia meetings of this spring.
Since most people end up posting only on the mainboard, it seems that specialized groups become inactive, but I think a group like this might help. If there is anyone willing to be moderator, I am quite willing to provide some of the "lost links". b.
By the way, are any of you getting notifications or activity feeds? Last I heard they were "working on it."
I often discover posts, meant for me - weeks after they were sent. Discover them, by accident. I guess that's why I tend to stick - to the main topic board.
b: the Member Group is a great idea! Down the road, maybe I could help. Right now, I'm working on a website, specific to Mainers.
The educational postings of this group - need a better home!
- Ross
If someone else would like to do it please volunteer. Like B, I would also be glad to help with the group oneway or the other.
Please give me a couple of days to see what would be required and that I would have to time and resources to handle the job.
Bruce
Let me know, I don't mind helping you.
Can someone go to the "Groups" tab at the top of the bar and see if you can join a group titled "Myasthenia Gravis News and Links"?
:)
The time consuming part would be going back through some post headings and posts to pull the articles.
~sherry
That's exactly what I had in mind. This evening I will go through and pull any links that I remember as being especially helpful, along with a short description.
We could also post tips of what we do for common problems like cramping, high temperatures, keeping up with medication, etc. My little keychain pill container has made taking medicine all day so much easier (and I know where my keys are--amazing). Thanks Cathi.
b.