State Bill Aims to Help People with Fibromyalgia
I'm not sure how to feel about this one. As reported in the Kansas City Star newspaper, a bill aimed at helping people with fibromyalgia is working its way through the Missouri state legislature. It would create the Missouri Fibromyalgia Panel, which would raise at least $50,000 for an information and outreach campaign to help with early diagnosis and treatment, and to educate doctors and other health-care workers.
Certainly any education is fantastic, and a lot of people would benefit from early diagnosis and treatment. It would help raise the profile of the condition and possibly give it more legitimacy. I question, however, if this is something the government should be doing.
I don't want to open a huge can of political worms, but I have to ask - if there's a Missouri Fibromyalgia Panel, shouldn't there be a Kansas Chronic Fatigue Syndrome Panel, an Arkansas Autism Panel, an Idaho IBS Panel … you get my drift.
Does every state need a panel for every disease and condition? Does the call for something like this show that we need major changes to our health-care system? Is this government waste or government responding to legitimate needs of the people? Post your comment here or in About.com's Fibromyalgia & Chronic Fatigue Syndrome Forum.
Comments
Are you seriously asking that question? Do you really have Fibromyalgia? Anything government sponsored or not that brings attention and funding to research and educate people on this painful medically debilitating condition is fantastic. Thank God someone has the courage to bring this to light and see it through. Get on board and help us, dont question the support we do get. If you dont want to run this site thats fine, but dont throw further doubt into the community!!!
I agree with Ms. Dellwo on the equity question. At least in my home state, I’m much more worried about a cut in home health care, which helps me stay in my house, than about new programs to educate about FMS.
I agree with Adrienne completely. There are way too many government panels, committees, and general governmental intrusion into our lives already. Once they start a panel for FMS there will be people clamoring for government panels in there areas.
If you want a panel, start up a people’s panel but don’t look to the government for one. Government doesn’t do most things very well, except spend taxpayer’s money!
HIV/AIDS wasn’t taken seriously until there was a government panel on it and a series of treatment centers set up.
Take it where you can get it. It’s not a long term permanent concept to rival other illnesses. It’s a chance to bring to light and correct the neglect and misconceptions that are happening.
We already have government “panels”. They are called the CDC and the NIH.
I really think what we need is something more on the order of the Arthritis Foundation or the Cancer Society, they are good examples of advocacy and education.
The one thing we don’t need is another do nothing but talk and spend money federal level government panel. If you want federal action, bug your congressman for more research funding at the NIH for fibromyalgia.
Olegrandy
Personally…I feel that any program, panel, advocacy, etc. that will help doctors and other health care providers become informed…can’t be a bad thing. There are still many physicians who look at you as if you had 4 heads when you mention the word “fibromyalgia.” It is still misdiagnosed and misunderstood. Educate the public and medical community any way, and by any means, possible.
WE NEED ALL THE AWARENESS WE CAN GET> WHY DOES IT BOTHER U.
Thanks, everyone, for your comments!
A couple of comments - first, I’m all for education and awareness, and I didn’t necessarily say I’m against this bill. I simply asked a question to see how people felt about this. I see both positive and negative things in this piece of legislation.
Second, to question whether I have fibromyalgia simply because I question this bill is like asking an African-American who doesn’t support Obama if they’re really an African-American. I hope that here, where we’re all dealing with these conditions, we can refrain from personal attacks. I would also hope that the work I do every day to raise awareness, further education and support this community (such as my letter to the New York Times that I posted in January) would show my dedication to this site and to advocating for all of us.
I had a lovely comment that was postivie for goevernment involvement, but I forgot it already.
What I do remember is that leaving the research to the NIH is not an option, as it was done already, and they used the designated funds for other projects.
There are no easy answers, and I just pray for the day that the disbelief of our condition will go the way of the disbelief in MS. This is a legitimate medical condtion that disables and disrupts the lives of many. If the government were to understand, what people suffer, it would be a lot easier to get much needed disability resources to those who need it
You wouldn’t even have to ask this question if our condition was already validated and accepted by all healthcare workers. We have to get our condition out of the closet! You mention other diseases, well they are widely accepted and funded. People are suffering, many to near suicide. It’s time!
Adrienne, You do a fantastic job running this site.
It takes guts to ask this question.
I understand that this could be seen as controversial, however I feel we can use any help we can get.
Bills and panels like this are usually started by someone who is effected by or knows a person effected by (insert cause here).
Could the money be better spent? Probably, but it is the nature of the beast.
Adrienne…you keep right on doing what you have been doing. I know you care or you wouldn’t be here in the first place. There are some who just want to debate everything. To me…it’s much better to have a hopeful view, than one of negativity. I applaud you and your efforts to keep others informed.
Thanks so much.
I am for anything that brings awareness to the general public, physicians, or lawmakers. Since the lyrica commercial came out, whether or not you take it or look to it as a moneymaker for the drug company, so many people now ask me if that’s what I have. Or if I mention I have fibromyalgia, they say is that the commercial where the lady is …?
They don’t look at me when I say the word fibromyalgia like, fibro what?!?
I agree with the “positives” %100! As a someone who has been affected by fibromyalgia personally, and know many people who have been diagnosed, including my mother, I whole heartedly believe we need more awareness for this syndrome. I am searching the internet to find out how to start an national advocacy group.
My mother was in an accident on September 13, 2008, two days before her birthday, 5 days before her anniversary and the birth of my 5th child.
She, and another car collided(t-boned) another car on the highway at 45 mph. She was so panicked from her injuries that she could not breathe, and when the paramedics arrived they assisted the other cars first. Her van had caught on fire, and she was in severe pain in her neck and knees.
When I got to the hospital to see her with blood down to the heels of her feet from the deep gashes in her knees,and a neck brace on her that was pressing against her trigger points and exaggerating the pain even more, I had to contain all of my emotions as I watched her tremble on the roll-away bed.
I asked her if she had told them about her fibro and she said ” Yes, but they don’t care.” I realized later as I watched how the doctor move her body around that he really didn’t care.
That’s when I realized that I needed to start a foundation or an advocacy group for fibro patients. I have alot of ideas, but mainly the doctors, nurses, and EMTs need to be educated on this horribly debillitating problem so they will know how to better “care” for their patients. They’re needs to be a true awareness and the symptoms and pain of this syndrome.
I personally know about this issue myself. For the past 2 years 4 of my children have had to live with a mother who was always on the sofa and could barely get up to bathe them or cook dinner. My husband, who works 2 jobs would have to do everything for them. I couldn’t even go upstairs at night to tuck them in because of the severe pain and “lead” feeling in my body.
I thank the Lord that there was someone with my mother that day who knew about fibromyalgia. The paramedic that stayed with her and stroked her head has fibromyalgia. I think it validated her to know that a person caring for her knew what it felt like to be in her shoes.
So yes, we definitely need more awareness!