I have posted here before, but somehow lost my screen name info, again! Tonight I watched a movie on CBS about a woman that battled with Parkinson's disease and it gave me a lot of thoughts about FMS.
My first thought is that there doesn't seem to be any organized group for us. There are several large orgs, but they aren't well known and really don't work together.
Then I thought like the movie, we need for people to really put a face on this disease. In the movie, Michael J. Fox was unfortunately diagnosed and he gave America a face for the disease and really helped bring in research dollars.
If we had that, maybe we could have someone talk to our Congressional leaders and get them moving on some funding for research. I think unlocking FMS will unlock Lupus, Rheumatoid Arthritis and a myriad of other diseases.
What do you all think would help? What do we need to do to get a cure for this disease that doesn't make us more sick than we are normally?
__________________ "No army can withstand the strength of an idea whose time has come." Hugo
What I would definitely LOVE is a real, live, in-person support group, but there doesn't seem to be many of those, and there isn't ANY around or near St. Louis, where I am. I would love to have those....
Mitral Valve Prolapse
High Blood Pressure
Solar Urticaria (but not officially yet)
Hi everyone! Once again, I don't know if I have fibro, but it sure feels like it. I'm starting a Yoga class for Fibromyalgia on April 6th. I'm looking forward to seeing other people who have this and talking to them about how they're coping. I'm hoping it could become a type of support group for me. Maybe there's something in one of your area hospitals that has something like that or maybe they could start one.
Have you all been asleep? May 12th Is Awareness Day.Thousands of us are writing to our congressmen on the same day. search "fibromyalgia Awareness Day". Bracelets and pins are available. Let's get pumped up you guys!!!!
sweet one in St. Louis, call Christian Northwest for a support group, if they no longer have one, there is one on the 2nd Tues of each month at Alton Memorial at 6:30. No complaining about the distance is allowed. I have to drive to St. Louis regularly for most of my appointments and had to for jobs also.
I want to encourage you to go to ebay and search for Fibromyalgia ( I think just that would be enough ) but I know there are things you can buy there that will help you promote awareness. There are pins, shirts and such. Or I suppose you could use the web and do a general search for FM awareness day, see what comes up.
Hi, I'm new here to the site and just saw your post.
I also watched that movie and felt the the same way you did. It also left me crying! Her husband was so loving, caring and understanding!
There is some information on the Web regarding Fibromyalgia awareness. I think May 1 is Fibromyalgia Awareness Day and there is a campaign going on to raise awareness ... I believe it's May 15 ... the campaign is to send as many letters as we can to congressmen, news media, etc to let them know that this is a REAL disease and needs some attention in the understanding and research area (oh, I know I'm babbling with my fibro brain!). If you do a general search on the Web you should be able to find it.
Hang in there, and thanks for your thoughts.
Last edited by kingsladybug; 03-21-2005 at 09:07 AM.
Reason: Whoops! Wrong Date for Campaign ... it's May 12!