Goodness Folks!
Before we go off the wall blaming the new admin. why dont we research and find out how long this has been in the making.
I am one who takes narcotics for my rls, and I would HATE to give them up, but there are far more important issues this country is facing right now, than our meds for RLS.
Lets no forget this country is going to Hell in a handbasket and fast, at least we now have someone who is trying to help people losing their jobs and homes.
I understand that dealing with RLS can certainly affect your mental out look on things, but lets also remember that there are folks, families, children, older folks, etc, that are hurting alot more than having rls!!!
While you might not agree with this new admin. Lets at least give it time to see if this country can be helped after the down fall these last 8 yrs!!
Right now my rls is the least of my concern, my GREATEST concern is what is happening to our country!!!
New FDA Restriction on Narcotics!
Zach-- I'm going to respectfully ask that you keep your political views out of this section of the forum. While your concern around government involvement is valid-- to blame a single person or party is only going to upset people and detract from the important work ahead of us to assure our voice is heard.
We all know the FDA does what it wants, when they want-- regardless of who's in office. I've watched numerous administrations work with the FDA and since Reagan's "war on drugs" campaign-- the FDA has, without fail, become more stringent with drug access.
Does anyone know which groups/organizations we can talk/email with to make our concerns heard? I'm assuming the FDA has a place where you can send feedback-- but I'm not sure anyone would read it.
We all know the FDA does what it wants, when they want-- regardless of who's in office. I've watched numerous administrations work with the FDA and since Reagan's "war on drugs" campaign-- the FDA has, without fail, become more stringent with drug access.
Does anyone know which groups/organizations we can talk/email with to make our concerns heard? I'm assuming the FDA has a place where you can send feedback-- but I'm not sure anyone would read it.
Josh
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SquirmingSusan
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I think the American Pain Foundation is one of the best resources out there. They do all kinds of advocacy work and you can sign up for email update from them, so you can stay involved and knowledgeable. Here's the link:
http://www.painfoundation.org/
http://www.painfoundation.org/
Susan
I understand your point Fidgetboy, but I do think that Zach's points are entirely valid and spot on. However, it's rather pointless to gripe about any one person or political party since these matters are not easily changed. I have a hard enough time advocating for myself let alone having to worry about changing such a corrupt, unproductive system as we have.
DX: GAD, Panic Disorder, RLS
RX: Lexapro (30mg daily), Mirapex (.25mg daily), Xanax (.5mg as needed)
RX: Lexapro (30mg daily), Mirapex (.25mg daily), Xanax (.5mg as needed)
For the last time, I am not injecting personal political views into anything. Everything I have commented on is pretty much a fact of record. I've already made it clear that I am not even trying to take issues with "who dun it". All my points have focused on the fact the ball is rolling and things are GOING to happen. I really am sorry that everyone goes into epileptic fits if the word "politics" is uttered, let alone a person in public office or their party being named, but please stop making something out of nothing people!
I do not go off on random political opinion trantrums, because everyone has made it quite clear we don't want that here. But if voicing my concerns based on facts of record is going to set people off, then maybe they're the ones who need to take a step back and just overlook my posts. Everything I've said up until now has been completely to do with the topic in some credible form. So sorry if daring to predict the direction this is going is upsets people.
The government is pushing towards public health care. The FDA (part of the government, shock!) wants to clamp down even harder on painkillers, and once healthcare goes nationwide they will be able to dictate anything to us from any branch of government that is responsible for the well-being and safety of the people. That's all I ever really said.
I'll admit I got a little distracted by a couple of the first posts, but like I said.. Something out of nothing
Anyway.. Here's some semi-good news.
http://www.modernhealthcare.com/article ... 09987/1153
Won't do crap against the FDA proposals should they become regulation, but still nice
I do not go off on random political opinion trantrums, because everyone has made it quite clear we don't want that here. But if voicing my concerns based on facts of record is going to set people off, then maybe they're the ones who need to take a step back and just overlook my posts. Everything I've said up until now has been completely to do with the topic in some credible form. So sorry if daring to predict the direction this is going is upsets people.
The government is pushing towards public health care. The FDA (part of the government, shock!) wants to clamp down even harder on painkillers, and once healthcare goes nationwide they will be able to dictate anything to us from any branch of government that is responsible for the well-being and safety of the people. That's all I ever really said.
I'll admit I got a little distracted by a couple of the first posts, but like I said.. Something out of nothing
Anyway.. Here's some semi-good news.
http://www.modernhealthcare.com/article ... 09987/1153
Won't do crap against the FDA proposals should they become regulation, but still nice
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ViewsAskew
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Zach, trying to look at this as objectively as I can, I do think you are not seeing your posts as the rest of us are. First of all, it isn;t a matter of fact. Anything regarding politics is a matter of opinion.
Second of all, you CAN discuss this without every mentioning the President's name, discussing Congress, etc., unless it's to name a specific bill or law that is passed. That hasn't been done.
You may feel you are completely accurate and that it's necessary. As you stated, multiple people have clearly made the case that they do not agree and feel it's detracting from this topic.
jml, we are not a board that undertakes the discussion of any of this, except as it relates to our direct experience of RLS in our lives, how we help ourselves and each other, and the steps we take to improve or change things that aren't working. What we don't talk about is our opinion about WHY it's not working.
I hope that makes sense. I do not want to stifle discussion in the sense of us getting relief from RLS. But, this is not a political forum. We have too many members who come from different places and have differing ideas. We are simply not a place to debate things like this. We are for support.
The mods and the Foundation have been working on a set of posting guidelines for awhile. It's unbelievable how hard it is to define this stuff and find a ground that we feel is appropriate. Not everyone agrees with the stance I described in the previous paragraph. Some people want us to be able to go into other territory. They can....on another forum. On a forum where that is their purpose. We are keeping true to why we exist and our decisions are in line with our mission statement.
I hope that this does not stifle all further discussion. I hope that it changes direction and follows Figetboy's lead.
Second of all, you CAN discuss this without every mentioning the President's name, discussing Congress, etc., unless it's to name a specific bill or law that is passed. That hasn't been done.
You may feel you are completely accurate and that it's necessary. As you stated, multiple people have clearly made the case that they do not agree and feel it's detracting from this topic.
jml, we are not a board that undertakes the discussion of any of this, except as it relates to our direct experience of RLS in our lives, how we help ourselves and each other, and the steps we take to improve or change things that aren't working. What we don't talk about is our opinion about WHY it's not working.
I hope that makes sense. I do not want to stifle discussion in the sense of us getting relief from RLS. But, this is not a political forum. We have too many members who come from different places and have differing ideas. We are simply not a place to debate things like this. We are for support.
The mods and the Foundation have been working on a set of posting guidelines for awhile. It's unbelievable how hard it is to define this stuff and find a ground that we feel is appropriate. Not everyone agrees with the stance I described in the previous paragraph. Some people want us to be able to go into other territory. They can....on another forum. On a forum where that is their purpose. We are keeping true to why we exist and our decisions are in line with our mission statement.
I hope that this does not stifle all further discussion. I hope that it changes direction and follows Figetboy's lead.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Ok but I'm asking.. what have I stated that is not a record of fact -- outside of the opinion that public healthcare is coming?
Everything else you can read about in print, listen to on T.V in real time in some cases as it is happening. Granted little spiggots like "so and so mucked up the bill and its one sided" can be viewed as an interpretation - that is still my understand as -fact- of the events that happened and equally reflects the end result of i.e the stimulus bill issue. I could have left it out in hindsight, but then none of us would know about the new privacy boosts trying to make it through.
Either way, I did mention the stimulus bill so I can't take it back.. I did mention public healthcare, which I strongly believe relates to this topic and the power of the FDA and based on the information out there, is by all likelyhood going to happen.. I can't take that back, but I still mentioned people only within that context and did not go off on a diatribe about THEIR personal politics, only broadly addressed them in regards to their policy goals.
Maybe both sides are biased.. But I tend to regard myself as someone who debates with as many facts as he can, without putting too much personal opinion, if any, in the mix..
I won't furhter muck up this thread tho.. But I cannot concede I did anything ill. I understand how hard it is to decide what meets guidelines and what doesn't and that we are all confused because we really have no real set of guidelines written in stone for everyone to see..
Maybe you guys should just decide that you can't further progress your rules and post them as is.. Revise them as needed..
Everything else you can read about in print, listen to on T.V in real time in some cases as it is happening. Granted little spiggots like "so and so mucked up the bill and its one sided" can be viewed as an interpretation - that is still my understand as -fact- of the events that happened and equally reflects the end result of i.e the stimulus bill issue. I could have left it out in hindsight, but then none of us would know about the new privacy boosts trying to make it through.
Either way, I did mention the stimulus bill so I can't take it back.. I did mention public healthcare, which I strongly believe relates to this topic and the power of the FDA and based on the information out there, is by all likelyhood going to happen.. I can't take that back, but I still mentioned people only within that context and did not go off on a diatribe about THEIR personal politics, only broadly addressed them in regards to their policy goals.
Maybe both sides are biased.. But I tend to regard myself as someone who debates with as many facts as he can, without putting too much personal opinion, if any, in the mix..
I won't furhter muck up this thread tho.. But I cannot concede I did anything ill. I understand how hard it is to decide what meets guidelines and what doesn't and that we are all confused because we really have no real set of guidelines written in stone for everyone to see..
Maybe you guys should just decide that you can't further progress your rules and post them as is.. Revise them as needed..
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ViewsAskew
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I'm not going to parse it out and it isn't the main crux here.
I'm sticking with what I said above. Fact or not (and I have not checked any of this so do not know) this isn't what we're about as a board/forum. It isn't why we exist. That's the issue with me. Should anyone else want to take you up on whether it's fact or not, please take it off line and use a private means of discussion. Just don't use the PM system for being abusive
I'm sticking with what I said above. Fact or not (and I have not checked any of this so do not know) this isn't what we're about as a board/forum. It isn't why we exist. That's the issue with me. Should anyone else want to take you up on whether it's fact or not, please take it off line and use a private means of discussion. Just don't use the PM system for being abusive
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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SquirmingSusan
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Zach wrote:Ok but I'm asking.. what have I stated that is not a record of fact -- outside of the opinion that public healthcare is coming?
Anything that is political "fact" can be researched and the record cited - I'm thinking of congressional voting records here, and records of who sponsored what bill. Without that information your opinions are just you opinions, and have no place in an intelligent debate, let alone a forum about RLS.
I don't know how to say that more clearly than anyone else has been able to. We want ideas communicated accurately, if they need to be communicated at all in this forum.
The other thing we're all trying to say is, now that this is in the works, whaddayagonnadoaboutit?
Susan
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SquirmingSusan
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We now resume our regularly scheduled programming on the topic of advocating for our rights to be treated effectively for RLS, in the context of the new FDA issue...
At the American Pain Foundation site, there is a lot of information about the National Pain Care Policy Act of 2009, H.R. 756. This seems to be a bipartisan bill, that is completely unrelated to the new FDA policy. It looks quite promising. The only thing I don't see with it, is any sponsorship by RLS organizations.
Does anyone know how to get the RLS foundation involved in advocating for this bill, if we agree with it? I'm going to do a bit more investigating in what it all would mean for us.
It seems like, as Josh mentioned before, that we really need to get RLS recognized as a valid diagnosis for which opioids can be prescribed. Most sleep doctors know this, but many are still not willing to write the scripts. It seems like some organization support from the RLS foundation might help here.
I guess I'm just looking for ideas here. We're a huge message board, and people here have helped change things for the better in many ways...
At the American Pain Foundation site, there is a lot of information about the National Pain Care Policy Act of 2009, H.R. 756. This seems to be a bipartisan bill, that is completely unrelated to the new FDA policy. It looks quite promising. The only thing I don't see with it, is any sponsorship by RLS organizations.
Does anyone know how to get the RLS foundation involved in advocating for this bill, if we agree with it? I'm going to do a bit more investigating in what it all would mean for us.
It seems like, as Josh mentioned before, that we really need to get RLS recognized as a valid diagnosis for which opioids can be prescribed. Most sleep doctors know this, but many are still not willing to write the scripts. It seems like some organization support from the RLS foundation might help here.
I guess I'm just looking for ideas here. We're a huge message board, and people here have helped change things for the better in many ways...
Susan
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ViewsAskew
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Susan, how about calling them? The office is in Rochester. I know that they are very short staffed these days and that they've lost a good deal of their staff because of funding shortfalls. The Executive Director, Georgi Bell, is probably who you want to talk to.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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SquirmingSusan
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As an outsider (and arguably someone who has a somewhat objective view) I do think that what Zach originally wrote was appropriate, though I admit I don't know the rules of this site entirely.
His point was that the FDA's decision mirrors the administration's push towards a nationalized healthcare system and that big changes are going to occur. I don't see that at all as political bantering, it's a reality and one that effects all of us. Now, if we don't have a forum to discuss things of this nature, I will go elsewhere. If the topic gets out of hand and no longer pertains to the realm of healthcare and specifically RLS, I understand how that's inappropriate, but considering this whole discussion was started about FDA regulations and no one had a problem with that in the first place I really don't see how Zach or my comments were at all out of place.
But I agree that there is a fine line between political banter and discussing legitimate government policy as it pertains to our condition. Perhaps we came a bit too close to that line which made people uncomfortable and I can respect that.
His point was that the FDA's decision mirrors the administration's push towards a nationalized healthcare system and that big changes are going to occur. I don't see that at all as political bantering, it's a reality and one that effects all of us. Now, if we don't have a forum to discuss things of this nature, I will go elsewhere. If the topic gets out of hand and no longer pertains to the realm of healthcare and specifically RLS, I understand how that's inappropriate, but considering this whole discussion was started about FDA regulations and no one had a problem with that in the first place I really don't see how Zach or my comments were at all out of place.
But I agree that there is a fine line between political banter and discussing legitimate government policy as it pertains to our condition. Perhaps we came a bit too close to that line which made people uncomfortable and I can respect that.
DX: GAD, Panic Disorder, RLS
RX: Lexapro (30mg daily), Mirapex (.25mg daily), Xanax (.5mg as needed)
RX: Lexapro (30mg daily), Mirapex (.25mg daily), Xanax (.5mg as needed)
SquirmingSusan wrote:Zach wrote:Ok but I'm asking.. what have I stated that is not a record of fact -- outside of the opinion that public healthcare is coming?
Anything that is political "fact" can be researched and the record cited - I'm thinking of congressional voting records here, and records of who sponsored what bill. Without that information your opinions are just you opinions, and have no place in an intelligent debate, let alone a forum about RLS.
I don't know how to say that more clearly than anyone else has been able to. We want ideas communicated accurately, if they need to be communicated at all in this forum.
The other thing we're all trying to say is, now that this is in the works, whaddayagonnadoaboutit?
So in order to say anything political we have to back them up with voting records? What about well known, unbiased, bipartisan facts? For instance, Zach mentioned that we are moving towards socialized healthcare. That's a fact, and it's something that Obama promised us all in his campaign. Can anyone disagree with that?
DX: GAD, Panic Disorder, RLS
RX: Lexapro (30mg daily), Mirapex (.25mg daily), Xanax (.5mg as needed)
RX: Lexapro (30mg daily), Mirapex (.25mg daily), Xanax (.5mg as needed)