Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 WAY TO GO LISA!!! really well done....first this...then oprah...(fingers crossed). cant wait to see yours in anticipation julie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 Congratulations, ! I e-mailed my mother-in-law, who lives in Florida. Hopefully, she'll buy a copy and send it to me! Terri Getting the word out Hi, Just wanted to update you on the article I told you Vinny's doctor was trying to get into FLORIDA TODAY newspaper. I received a call from his assistant yesterday, and they're hoping the article will be in this Sunday's paper! They have used excerpts from the letter I sent to Oprah back in January. If it is not in Sunday's paper it will definitely be in the medical insert that is in the paper monthly. I'll scan it and post it as soon as it comes out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2002 Report Share Posted April 18, 2002 Cool beans Rick ! I think it¹s a wonderful story, and I agree that this ³personal touch², using your story, will touch more people than any dry article just about the disease ever would. Congrats, all. Robbie in FL ReA, AS, IBS, FMS, CFS, etc etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2002 Report Share Posted April 19, 2002 Thanks Rick, it is a wonderful thing, I know you worked hard so our disease could get some " respect. " We all owe you a big debt of gratitude. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2002 Report Share Posted June 3, 2002 Hi All, My pyschiatrist last week said the mental episodes the last couple of weeks are definately related to the Trazadone. In another week, I will be Trazadone free. I have to stay at 25 mg for 2 weeks since I was having such bad side effects of decreasing the medication. I am moody now, but much more mentally stable than I have been recently. He said I am not " mental " but need to get off the Trazadone completely. I gave him a Stills brochure and he was mildly interested. The good news, better than my mental health... is that I have seen yet another specialist. This one is a professor of Chinese medicine at the Oregon College of Oriental Medicine. He has specialized in " Feverish Diseases " for 40 years! My Traditional Chinese Medicine Doctor bought his book back in December and read the entire thing in an effort to make me feel better. We called Dr Liu on Thursday and asked him for help, ideas, suggestions. He was frantic with worry about me having had a fever between 100-102 for 18 months and said I was to come to his house on Saturday June 1, 2002 for treatment. He is 5.5 hours one way away from home, but we went. He says I am " very difficult " because I have so many things wrong, but he thinks he knows how to get me turned around. That was good news! I have started on his treatment and I must say that I do feel better, even though still feverish and tired from the quick trip. I get to go see him again in 2 weeks and he will be in constant contact with my TCM for accupunture and herbal therapy. The best news, as you can imagine, is that as usual... I took him a Stills Brochure. He begged me to let him keep it. He wanted to do research at the college on the disease, both at our web site, and in class. Who knows what will come of this, or who may be helped based on what he finds. I am hopeful. He already has 40 years of knowlege and wisdom in dealing with feverish diseases. Could he find a reason behind it all? Guess time will tell. I am very exhausted from the past 2 weeks of drug changes, mental upheaval and then a major overnight trip but I am generally feeling better today. Lets keep our fingers crossed for Dr. Liu's research team and hope they find some answers. I will ask him in 2 weeks what he found out. Smiles to all, Caroline --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2002 Report Share Posted June 3, 2002 So good to hear Cara; I haven't been on long and haven't gotten all things read but did want to say thank you. Good hopes for better days and we shall catch up soon. Melt :0) Re: Getting the Word Out Hi All, My pyschiatrist last week said the mental episodes the last couple of weeks are definately related to the Trazadone. In another week, I will be Trazadone free. I have to stay at 25 mg for 2 weeks since I was having such bad side effects of decreasing the medication. I am moody now, but much more mentally stable than I have been recently. He said I am not " mental " but need to get off the Trazadone completely. I gave him a Stills brochure and he was mildly interested. The good news, better than my mental health... is that I have seen yet another specialist. This one is a professor of Chinese medicine at the Oregon College of Oriental Medicine. He has specialized in " Feverish Diseases " for 40 years! My Traditional Chinese Medicine Doctor bought his book back in December and read the entire thing in an effort to make me feel better. We called Dr Liu on Thursday and asked him for help, ideas, suggestions. He was frantic with worry about me having had a fever between 100-102 for 18 months and said I was to come to his house on Saturday June 1, 2002 for treatment. He is 5.5 hours one way away from home, but we went. He says I am " very difficult " because I have so many things wrong, but he thinks he knows how to get me turned around. That was good news! I have started on his treatment and I must say that I do feel better, even though still feverish and tired from the quick trip. I get to go see him again in 2 weeks and he will be in constant contact with my TCM for accupunture and herbal therapy. The best news, as you can imagine, is that as usual... I took him a Stills Brochure. He begged me to let him keep it. He wanted to do research at the college on the disease, both at our web site, and in class. Who knows what will come of this, or who may be helped based on what he finds. I am hopeful. He already has 40 years of knowlege and wisdom in dealing with feverish diseases. Could he find a reason behind it all? Guess time will tell. I am very exhausted from the past 2 weeks of drug changes, mental upheaval and then a major overnight trip but I am generally feeling better today. Lets keep our fingers crossed for Dr. Liu's research team and hope they find some answers. I will ask him in 2 weeks what he found out. Smiles to all, Caroline --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 Wow Caroline, that's exciting news. So great to hear when docs take an interest in the illness. Had he heard of the disease before. I'm just curious because so many haven't. Take good care and I wish you happiness in your new therapy. PLEASE keep us posted. Love and Hugs, KIm --- <blacklionent@...> wrote: > > > Hi All, > My pyschiatrist last week said the mental episodes > the last couple of weeks are definately related to > the Trazadone. In another week, I will be Trazadone > free. I have to stay at 25 mg for 2 weeks since I > was having such bad side effects of decreasing the > medication. I am moody now, but much more mentally > stable than I have been recently. He said I am not > " mental " but need to get off the Trazadone > completely. I gave him a Stills brochure and he was > mildly interested. > The good news, better than my mental health... is > that I have seen yet another specialist. This one is > a professor of Chinese medicine at the Oregon > College of Oriental Medicine. He has specialized in > " Feverish Diseases " for 40 years! My Traditional > Chinese Medicine Doctor bought his book back in > December and read the entire thing in an effort to > make me feel better. We called Dr Liu on Thursday > and asked him for help, ideas, suggestions. He was > frantic with worry about me having had a fever > between 100-102 for 18 months and said I was to come > to his house on Saturday June 1, 2002 for treatment. > He is 5.5 hours one way away from home, but we went. > He says I am " very difficult " because I have so many > things wrong, but he thinks he knows how to get me > turned around. That was good news! I have started on > his treatment and I must say that I do feel better, > even though still feverish and tired from the quick > trip. I get to go see him again in 2 weeks and he > will be in constant contact with my TCM for > accupunture and herbal therapy. > The best news, as you can imagine, is that as > usual... I took him a Stills Brochure. He begged me > to let him keep it. He wanted to do research at the > college on the disease, both at our web site, and in > class. Who knows what will come of this, or who may > be helped based on what he finds. I am hopeful. He > already has 40 years of knowlege and wisdom in > dealing with feverish diseases. Could he find a > reason behind it all? Guess time will tell. > I am very exhausted from the past 2 weeks of drug > changes, mental upheaval and then a major overnight > trip but I am generally feeling better today. Lets > keep our fingers crossed for Dr. Liu's research team > and hope they find some answers. I will ask him in 2 > weeks what he found out. > Smiles to all, Caroline > > > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 Daves <golightlyfredd@...> wrote: Wow Caroline, that's exciting news. So great to hear when docs take an interest in the illness. Had he heard of the disease before. I'm just curious because so many haven't. Kim, I don't think he had heard of this specific disease from the way he was acting. He is a practicioner of Eastern Medicine and Stills is a Western medicine diagnosis and term. It may be called something else in the Chinese culture. I will try to find out. Thanks for asking, and sure hope you hear from your new Internist. I am sure she will call. Life just got in the way like it does for the rest of us. Sing to your hearts content, dance like there's no tomorrow, smile like you mean it! Caroline --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 Oh, that makes sense. When I said so many haven't, I meant even the doctors here in the states. Like my PCP had never heard of Still's Disease prior to me becoming ill. He read a bullitin that happened to be on his desk about Still's Disease. It had been sent out by the Arthritis Foundation and as he read he bagan to highlight all the things that applied to me and before he knew it the whole page was highlighted. I just happened be sick at the time...just had my onset and had only been released from the hospital a couple days before. The thing is...he gets so much information from different organizations that he doesn't have time to read it all. He was getting ready to toss it when something told him he should read it. I think God had his hand in that one. Isn't that a wonderful story. My PCP had taken a long weekend vacation the last weekend I was in the hospital. He gave me his phone number out there and everything. His wife and the other doctors in the practice said he read every chance he had to figure out what was wrong with me. The bullitin sited Dr. Cush's findings. It was a one page outline type bullitin. Anyway...I didn't mean to go into all that I just find it amazing that so many doctors at emergency room and so on...have never heard of the illness. Have a great one. Please keep us posted on how things go. Love and Hugs, Kim C J <blacklionent@...> wrote: Daves <golightlyfredd@...> wrote: Wow Caroline, that's exciting news. So great to hear when docs take an interest in the illness. Had he heard of the disease before. I'm just curious because so many haven't. Kim, I don't think he had heard of this specific disease from the way he was acting. He is a practicioner of Eastern Medicine and Stills is a Western medicine diagnosis and term. It may be called something else in the Chinese culture. I will try to find out. Thanks for asking, and sure hope you hear from your new Internist. I am sure she will call. Life just got in the way like it does for the rest of us. Sing to your hearts content, dance like there's no tomorrow, smile like you mean it! Caroline --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2003 Report Share Posted October 16, 2003 & others, Just a thought - would you, or someone else who is good with writing and conveying a clear message, be interested in putting together a " form letter " that each of us could use to send to various political figures, talk shows, magazines, etc. Something that would include an introduction about our group and our cause, blah, blah, blah. What do you think? Is it worth a try? in Calif. ---------------------- In a message dated 10/17/2003 12:50:13 AM Eastern Daylight Time, " poetryperson " <poetryperson@...> writes: >I have written to Oprah Winfrey twice about flatback; got no reply >either time. > >Jennie and I went to one of her shows. Afterwards, from the studio >audience, I mentioned to Oprah that this was the first time I had gone >anywhere in two years. (I was just a few months out of revision >surgery.) She seemed interested. I wish I had followed up somehow. > >I was a medical writer for many years, with bylines every two weeks in >the Medical News Section of JAMA. I have also written for/edited Medical >World News, Hospitals, several legal and psychiatric journals, the NY >State Journal of Medicine, and the Chicago Tribune, I've been away from >my career for a while, though, because of my HARMS and revision surgery. >In addition to my work as a medical writer-reporter, I have held various >editorial positions and am an attorney whose primary areas of >concentration has been in the area of health law, e.g., as an editorial >board member with the Journal of Health & Hospital Law and a consultant >to a research institute in forensic psychiatry.. My writing awards >include a Blakeslee Award in medical journalism from the American Heart >Association.. > >I am currently putting together my projected handbook for adults with >scoliosis. I expect to be ready with a proposal and outline for >publishers and/or agent within the next few months. I appreciate the >group's encouragement. At this point I am thinking that my book may >merit a sizable section, perhaps a chapter, devoted to managing the pain >that so often accompanies previously treated scoliosis and its >complications. > >It would be nice to get some coverage for this 200-member " Feisty " >group, which I started in the summer of 2000 with just eight members. >Clearly the Feisties are growing and vocal. > >Good luck to all the people with plans for calling in their media >contacts and getting some publicity for HARMS. > > Rasche >(Group owner and moderator) >. > > >--- >Outgoing mail is certified Virus Free. >Checked by AVG anti-virus system (http://www.grisoft.com). >Version: 6.0.516 / Virus Database: 313 - Release Date: 9/1/03 > > > >Support for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2003 Report Share Posted October 17, 2003 My goodness, , your credits are stunning! All the very best to you in your search for a publisher for the book! Sincerely, Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2005 Report Share Posted July 10, 2005 , Please contact Staci Grodin at turn the Corner she is the founder of this organization in charge of fundraising and she might be able to help you with your ideas. If you would like to join the event planning committee we are having a meeting on July 19th at 6:30. her e-mail is the following. It would be great if you could do this and she has a lot of flyers you could pass out if you would like with your van-Val _staci@..._ (mailto:staci@...) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2006 Report Share Posted January 7, 2006 If any of you are memebers of other special needs groups would you please help get the word out about this group by post a link to Medical Equipment Exchange on those groups. MedicalEquipmentExchange Thanks! Castle --- End forwarded message --- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 There have been a couple of protests in the past year and they did get some media coverage. In this fight I see a couple of things that slow the progress. First the participation has been EXTREMELY limited. I realize people have jobs and things that prevent participation but other causes have tens of thousands show up.There have been millions of people adversely effected by these drugs in one way or another but many have no idea it was the drug. Next and I fully expect to get blasted for this, most groups seem to have the atitude they can win this battle alone so there is not a banding together for the common cause. With the Pharma money involved there is no single group I am aware of that has a chance fighting alone. This past Friday there was an event in NY which I hear was great but people could't attend unless they lived in the area because notification was sent out just a week before. With the protests there was VERY litle time to make the necessary arangements if people wanted to attend. I'm not being critical of the effort or the people this is just what I have observed. There are a lot of very smart people involved in this fight, the challenge is better organization and better utilization of the talents that are available. Just my opinion. > > I just can't get over how the effects of psychotrophic drugs is the the > biggest, most evil secret ever! It's so hard to just sit back and take > it. I think if I/we did something to help get the word out, even if it > didn't materialize to anything, would make me feel better. Does anyone > have any ideas? I know I've signed petitions like for the klonopin. > Where do those petitions go to? What if we sent a petition, an > articulate letter about our predicament, along with a stack of > research to Dateline, or 20/20, the FDA itself, Oprah, our Congress > people, doctors, anyone we could reach? Has this already been done? > I've already written Dr. Phil and Oprah a long time ago, but it was > just me. I know others who had done it also. But what if we all came > together to do something? Is this just a far out idea? I think about > this all the time, especially after I'm been unvalidated by someone, > particularly doctors, who are ignorant. > > Teryn > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 There have been a couple of protests in the past year and they did get some media coverage. In this fight I see a couple of things that slow the progress. First the participation has been EXTREMELY limited. I realize people have jobs and things that prevent participation but other causes have tens of thousands show up.There have been millions of people adversely effected by these drugs in one way or another but many have no idea it was the drug. Next and I fully expect to get blasted for this, most groups seem to have the atitude they can win this battle alone so there is not a banding together for the common cause. With the Pharma money involved there is no single group I am aware of that has a chance fighting alone. This past Friday there was an event in NY which I hear was great but people could't attend unless they lived in the area because notification was sent out just a week before. With the protests there was VERY litle time to make the necessary arangements if people wanted to attend. I'm not being critical of the effort or the people this is just what I have observed. There are a lot of very smart people involved in this fight, the challenge is better organization and better utilization of the talents that are available. Just my opinion. > > I just can't get over how the effects of psychotrophic drugs is the the > biggest, most evil secret ever! It's so hard to just sit back and take > it. I think if I/we did something to help get the word out, even if it > didn't materialize to anything, would make me feel better. Does anyone > have any ideas? I know I've signed petitions like for the klonopin. > Where do those petitions go to? What if we sent a petition, an > articulate letter about our predicament, along with a stack of > research to Dateline, or 20/20, the FDA itself, Oprah, our Congress > people, doctors, anyone we could reach? Has this already been done? > I've already written Dr. Phil and Oprah a long time ago, but it was > just me. I know others who had done it also. But what if we all came > together to do something? Is this just a far out idea? I think about > this all the time, especially after I'm been unvalidated by someone, > particularly doctors, who are ignorant. > > Teryn > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 There have been a couple of protests in the past year and they did get some media coverage. In this fight I see a couple of things that slow the progress. First the participation has been EXTREMELY limited. I realize people have jobs and things that prevent participation but other causes have tens of thousands show up.There have been millions of people adversely effected by these drugs in one way or another but many have no idea it was the drug. Next and I fully expect to get blasted for this, most groups seem to have the atitude they can win this battle alone so there is not a banding together for the common cause. With the Pharma money involved there is no single group I am aware of that has a chance fighting alone. This past Friday there was an event in NY which I hear was great but people could't attend unless they lived in the area because notification was sent out just a week before. With the protests there was VERY litle time to make the necessary arangements if people wanted to attend. I'm not being critical of the effort or the people this is just what I have observed. There are a lot of very smart people involved in this fight, the challenge is better organization and better utilization of the talents that are available. Just my opinion. > > I just can't get over how the effects of psychotrophic drugs is the the > biggest, most evil secret ever! It's so hard to just sit back and take > it. I think if I/we did something to help get the word out, even if it > didn't materialize to anything, would make me feel better. Does anyone > have any ideas? I know I've signed petitions like for the klonopin. > Where do those petitions go to? What if we sent a petition, an > articulate letter about our predicament, along with a stack of > research to Dateline, or 20/20, the FDA itself, Oprah, our Congress > people, doctors, anyone we could reach? Has this already been done? > I've already written Dr. Phil and Oprah a long time ago, but it was > just me. I know others who had done it also. But what if we all came > together to do something? Is this just a far out idea? I think about > this all the time, especially after I'm been unvalidated by someone, > particularly doctors, who are ignorant. > > Teryn > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 There have been a couple of protests in the past year and they did get some media coverage. In this fight I see a couple of things that slow the progress. First the participation has been EXTREMELY limited. I realize people have jobs and things that prevent participation but other causes have tens of thousands show up.There have been millions of people adversely effected by these drugs in one way or another but many have no idea it was the drug. Next and I fully expect to get blasted for this, most groups seem to have the atitude they can win this battle alone so there is not a banding together for the common cause. With the Pharma money involved there is no single group I am aware of that has a chance fighting alone. This past Friday there was an event in NY which I hear was great but people could't attend unless they lived in the area because notification was sent out just a week before. With the protests there was VERY litle time to make the necessary arangements if people wanted to attend. I'm not being critical of the effort or the people this is just what I have observed. There are a lot of very smart people involved in this fight, the challenge is better organization and better utilization of the talents that are available. Just my opinion. > > I just can't get over how the effects of psychotrophic drugs is the the > biggest, most evil secret ever! It's so hard to just sit back and take > it. I think if I/we did something to help get the word out, even if it > didn't materialize to anything, would make me feel better. Does anyone > have any ideas? I know I've signed petitions like for the klonopin. > Where do those petitions go to? What if we sent a petition, an > articulate letter about our predicament, along with a stack of > research to Dateline, or 20/20, the FDA itself, Oprah, our Congress > people, doctors, anyone we could reach? Has this already been done? > I've already written Dr. Phil and Oprah a long time ago, but it was > just me. I know others who had done it also. But what if we all came > together to do something? Is this just a far out idea? I think about > this all the time, especially after I'm been unvalidated by someone, > particularly doctors, who are ignorant. > > Teryn > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 I agree. Our family has had 3 major networks at our home to talk to Corey about his experience. He testified before the FDA and we had some interest from the local news which faded quickly. We haven't had any response from the documentary, " The Drugging of Our Children " . was also interviewed and said that after all the possible causes of the Columbine shootings, nothing made any since other than the drugs the boys were taking. The media has never jumped on that statement. I'm afraid that too many people in position to help may have family or friends on these drugs that seem to be doing okay. I think what's going to have to happen is someone so unexpected is going to go on a shooting rampage that it will be obvious to the world that the drug they were taking was the cause. I have no idea who it would be and I'm not praying for it either. --- cdvlcarpenter <cdvlcarpenter@...> wrote: > There have been a couple of protests in the past > year and they did > get some media coverage. In this fight I see a > couple of things that > slow the progress. First the participation has been > EXTREMELY > limited. I realize people have jobs and things that > prevent > participation but other causes have tens of > thousands show up.There > have been millions of people adversely effected by > these drugs in > one way or another but many have no idea it was the > drug. > > Next and I fully expect to get blasted for this, > most groups seem to > have the atitude they can win this battle alone so > there is not a > banding together for the common cause. With the > Pharma money > involved there is no single group I am aware of that > has a chance > fighting alone. > > This past Friday there was an event in NY which I > hear was great but > people could't attend unless they lived in the area > because > notification was sent out just a week before. > > With the protests there was VERY litle time to make > the necessary > arangements if people wanted to attend. > > I'm not being critical of the effort or the people > this is just what > I have observed. > > There are a lot of very smart people involved in > this fight, the > challenge is better organization and better > utilization of the > talents that are available. Just my opinion. > > > > > > > > > I just can't get over how the effects of > psychotrophic drugs is > the the > > biggest, most evil secret ever! It's so hard to > just sit back and > take > > it. I think if I/we did something to help get the > word out, even > if it > > didn't materialize to anything, would make me feel > better. Does > anyone > > have any ideas? I know I've signed petitions like > for the > klonopin. > > Where do those petitions go to? What if we sent a > petition, an > > articulate letter about our predicament, along > with a stack of > > research to Dateline, or 20/20, the FDA itself, > Oprah, our > Congress > > people, doctors, anyone we could reach? Has this > already been > done? > > I've already written Dr. Phil and Oprah a long > time ago, but it > was > > just me. I know others who had done it also. But > what if we all > came > > together to do something? Is this just a far out > idea? I think > about > > this all the time, especially after I'm been > unvalidated by > someone, > > particularly doctors, who are ignorant. > > > > Teryn > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 I agree. Our family has had 3 major networks at our home to talk to Corey about his experience. He testified before the FDA and we had some interest from the local news which faded quickly. We haven't had any response from the documentary, " The Drugging of Our Children " . was also interviewed and said that after all the possible causes of the Columbine shootings, nothing made any since other than the drugs the boys were taking. The media has never jumped on that statement. I'm afraid that too many people in position to help may have family or friends on these drugs that seem to be doing okay. I think what's going to have to happen is someone so unexpected is going to go on a shooting rampage that it will be obvious to the world that the drug they were taking was the cause. I have no idea who it would be and I'm not praying for it either. --- cdvlcarpenter <cdvlcarpenter@...> wrote: > There have been a couple of protests in the past > year and they did > get some media coverage. In this fight I see a > couple of things that > slow the progress. First the participation has been > EXTREMELY > limited. I realize people have jobs and things that > prevent > participation but other causes have tens of > thousands show up.There > have been millions of people adversely effected by > these drugs in > one way or another but many have no idea it was the > drug. > > Next and I fully expect to get blasted for this, > most groups seem to > have the atitude they can win this battle alone so > there is not a > banding together for the common cause. With the > Pharma money > involved there is no single group I am aware of that > has a chance > fighting alone. > > This past Friday there was an event in NY which I > hear was great but > people could't attend unless they lived in the area > because > notification was sent out just a week before. > > With the protests there was VERY litle time to make > the necessary > arangements if people wanted to attend. > > I'm not being critical of the effort or the people > this is just what > I have observed. > > There are a lot of very smart people involved in > this fight, the > challenge is better organization and better > utilization of the > talents that are available. Just my opinion. > > > > > > > > > I just can't get over how the effects of > psychotrophic drugs is > the the > > biggest, most evil secret ever! It's so hard to > just sit back and > take > > it. I think if I/we did something to help get the > word out, even > if it > > didn't materialize to anything, would make me feel > better. Does > anyone > > have any ideas? I know I've signed petitions like > for the > klonopin. > > Where do those petitions go to? What if we sent a > petition, an > > articulate letter about our predicament, along > with a stack of > > research to Dateline, or 20/20, the FDA itself, > Oprah, our > Congress > > people, doctors, anyone we could reach? Has this > already been > done? > > I've already written Dr. Phil and Oprah a long > time ago, but it > was > > just me. I know others who had done it also. But > what if we all > came > > together to do something? Is this just a far out > idea? I think > about > > this all the time, especially after I'm been > unvalidated by > someone, > > particularly doctors, who are ignorant. > > > > Teryn > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 I agree. Our family has had 3 major networks at our home to talk to Corey about his experience. He testified before the FDA and we had some interest from the local news which faded quickly. We haven't had any response from the documentary, " The Drugging of Our Children " . was also interviewed and said that after all the possible causes of the Columbine shootings, nothing made any since other than the drugs the boys were taking. The media has never jumped on that statement. I'm afraid that too many people in position to help may have family or friends on these drugs that seem to be doing okay. I think what's going to have to happen is someone so unexpected is going to go on a shooting rampage that it will be obvious to the world that the drug they were taking was the cause. I have no idea who it would be and I'm not praying for it either. --- cdvlcarpenter <cdvlcarpenter@...> wrote: > There have been a couple of protests in the past > year and they did > get some media coverage. In this fight I see a > couple of things that > slow the progress. First the participation has been > EXTREMELY > limited. I realize people have jobs and things that > prevent > participation but other causes have tens of > thousands show up.There > have been millions of people adversely effected by > these drugs in > one way or another but many have no idea it was the > drug. > > Next and I fully expect to get blasted for this, > most groups seem to > have the atitude they can win this battle alone so > there is not a > banding together for the common cause. With the > Pharma money > involved there is no single group I am aware of that > has a chance > fighting alone. > > This past Friday there was an event in NY which I > hear was great but > people could't attend unless they lived in the area > because > notification was sent out just a week before. > > With the protests there was VERY litle time to make > the necessary > arangements if people wanted to attend. > > I'm not being critical of the effort or the people > this is just what > I have observed. > > There are a lot of very smart people involved in > this fight, the > challenge is better organization and better > utilization of the > talents that are available. Just my opinion. > > > > > > > > > I just can't get over how the effects of > psychotrophic drugs is > the the > > biggest, most evil secret ever! It's so hard to > just sit back and > take > > it. I think if I/we did something to help get the > word out, even > if it > > didn't materialize to anything, would make me feel > better. Does > anyone > > have any ideas? I know I've signed petitions like > for the > klonopin. > > Where do those petitions go to? What if we sent a > petition, an > > articulate letter about our predicament, along > with a stack of > > research to Dateline, or 20/20, the FDA itself, > Oprah, our > Congress > > people, doctors, anyone we could reach? Has this > already been > done? > > I've already written Dr. Phil and Oprah a long > time ago, but it > was > > just me. I know others who had done it also. But > what if we all > came > > together to do something? Is this just a far out > idea? I think > about > > this all the time, especially after I'm been > unvalidated by > someone, > > particularly doctors, who are ignorant. > > > > Teryn > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 I agree. Our family has had 3 major networks at our home to talk to Corey about his experience. He testified before the FDA and we had some interest from the local news which faded quickly. We haven't had any response from the documentary, " The Drugging of Our Children " . was also interviewed and said that after all the possible causes of the Columbine shootings, nothing made any since other than the drugs the boys were taking. The media has never jumped on that statement. I'm afraid that too many people in position to help may have family or friends on these drugs that seem to be doing okay. I think what's going to have to happen is someone so unexpected is going to go on a shooting rampage that it will be obvious to the world that the drug they were taking was the cause. I have no idea who it would be and I'm not praying for it either. --- cdvlcarpenter <cdvlcarpenter@...> wrote: > There have been a couple of protests in the past > year and they did > get some media coverage. In this fight I see a > couple of things that > slow the progress. First the participation has been > EXTREMELY > limited. I realize people have jobs and things that > prevent > participation but other causes have tens of > thousands show up.There > have been millions of people adversely effected by > these drugs in > one way or another but many have no idea it was the > drug. > > Next and I fully expect to get blasted for this, > most groups seem to > have the atitude they can win this battle alone so > there is not a > banding together for the common cause. With the > Pharma money > involved there is no single group I am aware of that > has a chance > fighting alone. > > This past Friday there was an event in NY which I > hear was great but > people could't attend unless they lived in the area > because > notification was sent out just a week before. > > With the protests there was VERY litle time to make > the necessary > arangements if people wanted to attend. > > I'm not being critical of the effort or the people > this is just what > I have observed. > > There are a lot of very smart people involved in > this fight, the > challenge is better organization and better > utilization of the > talents that are available. Just my opinion. > > > > > > > > > I just can't get over how the effects of > psychotrophic drugs is > the the > > biggest, most evil secret ever! It's so hard to > just sit back and > take > > it. I think if I/we did something to help get the > word out, even > if it > > didn't materialize to anything, would make me feel > better. Does > anyone > > have any ideas? I know I've signed petitions like > for the > klonopin. > > Where do those petitions go to? What if we sent a > petition, an > > articulate letter about our predicament, along > with a stack of > > research to Dateline, or 20/20, the FDA itself, > Oprah, our > Congress > > people, doctors, anyone we could reach? Has this > already been > done? > > I've already written Dr. Phil and Oprah a long > time ago, but it > was > > just me. I know others who had done it also. But > what if we all > came > > together to do something? Is this just a far out > idea? I think > about > > this all the time, especially after I'm been > unvalidated by > someone, > > particularly doctors, who are ignorant. > > > > Teryn > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 I attended the event in NYC on Friday. What I took away from it is that when you tell the stories people are SHOCKED and appalled and WILL get involved. But they have to be made aware of the problem.Most in the room had no idea of the adverse effects of ssri's until it was presented to them. We have to be there to contradict the Pharma " Everything is OK, these people are nuts " . When you're there, in person, talking face to face the impact is HUGE!! This is why going to everything that you physically can is SO important. We have some high profile people that are helping get the word out. We have to be there with our individual stories to provide the evidence that supports the claims. Like I've said all along... I'll go anywhere to tell my son's story and so will he! > > > > I just can't get over how the effects of psychotrophic drugs is > the the > > biggest, most evil secret ever! It's so hard to just sit back and > take > > it. I think if I/we did something to help get the word out, even > if it > > didn't materialize to anything, would make me feel better. Does > anyone > > have any ideas? I know I've signed petitions like for the > klonopin. > > Where do those petitions go to? What if we sent a petition, an > > articulate letter about our predicament, along with a stack of > > research to Dateline, or 20/20, the FDA itself, Oprah, our > Congress > > people, doctors, anyone we could reach? Has this already been > done? > > I've already written Dr. Phil and Oprah a long time ago, but it > was > > just me. I know others who had done it also. But what if we all > came > > together to do something? Is this just a far out idea? I think > about > > this all the time, especially after I'm been unvalidated by > someone, > > particularly doctors, who are ignorant. > > > > Teryn > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 I attended the event in NYC on Friday. What I took away from it is that when you tell the stories people are SHOCKED and appalled and WILL get involved. But they have to be made aware of the problem.Most in the room had no idea of the adverse effects of ssri's until it was presented to them. We have to be there to contradict the Pharma " Everything is OK, these people are nuts " . When you're there, in person, talking face to face the impact is HUGE!! This is why going to everything that you physically can is SO important. We have some high profile people that are helping get the word out. We have to be there with our individual stories to provide the evidence that supports the claims. Like I've said all along... I'll go anywhere to tell my son's story and so will he! > > > > I just can't get over how the effects of psychotrophic drugs is > the the > > biggest, most evil secret ever! It's so hard to just sit back and > take > > it. I think if I/we did something to help get the word out, even > if it > > didn't materialize to anything, would make me feel better. Does > anyone > > have any ideas? I know I've signed petitions like for the > klonopin. > > Where do those petitions go to? What if we sent a petition, an > > articulate letter about our predicament, along with a stack of > > research to Dateline, or 20/20, the FDA itself, Oprah, our > Congress > > people, doctors, anyone we could reach? Has this already been > done? > > I've already written Dr. Phil and Oprah a long time ago, but it > was > > just me. I know others who had done it also. But what if we all > came > > together to do something? Is this just a far out idea? I think > about > > this all the time, especially after I'm been unvalidated by > someone, > > particularly doctors, who are ignorant. > > > > Teryn > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 I attended the event in NYC on Friday. What I took away from it is that when you tell the stories people are SHOCKED and appalled and WILL get involved. But they have to be made aware of the problem.Most in the room had no idea of the adverse effects of ssri's until it was presented to them. We have to be there to contradict the Pharma " Everything is OK, these people are nuts " . When you're there, in person, talking face to face the impact is HUGE!! This is why going to everything that you physically can is SO important. We have some high profile people that are helping get the word out. We have to be there with our individual stories to provide the evidence that supports the claims. Like I've said all along... I'll go anywhere to tell my son's story and so will he! > > > > I just can't get over how the effects of psychotrophic drugs is > the the > > biggest, most evil secret ever! It's so hard to just sit back and > take > > it. I think if I/we did something to help get the word out, even > if it > > didn't materialize to anything, would make me feel better. Does > anyone > > have any ideas? I know I've signed petitions like for the > klonopin. > > Where do those petitions go to? What if we sent a petition, an > > articulate letter about our predicament, along with a stack of > > research to Dateline, or 20/20, the FDA itself, Oprah, our > Congress > > people, doctors, anyone we could reach? Has this already been > done? > > I've already written Dr. Phil and Oprah a long time ago, but it > was > > just me. I know others who had done it also. But what if we all > came > > together to do something? Is this just a far out idea? I think > about > > this all the time, especially after I'm been unvalidated by > someone, > > particularly doctors, who are ignorant. > > > > Teryn > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 I attended the event in NYC on Friday. What I took away from it is that when you tell the stories people are SHOCKED and appalled and WILL get involved. But they have to be made aware of the problem.Most in the room had no idea of the adverse effects of ssri's until it was presented to them. We have to be there to contradict the Pharma " Everything is OK, these people are nuts " . When you're there, in person, talking face to face the impact is HUGE!! This is why going to everything that you physically can is SO important. We have some high profile people that are helping get the word out. We have to be there with our individual stories to provide the evidence that supports the claims. Like I've said all along... I'll go anywhere to tell my son's story and so will he! > > > > I just can't get over how the effects of psychotrophic drugs is > the the > > biggest, most evil secret ever! It's so hard to just sit back and > take > > it. I think if I/we did something to help get the word out, even > if it > > didn't materialize to anything, would make me feel better. Does > anyone > > have any ideas? I know I've signed petitions like for the > klonopin. > > Where do those petitions go to? What if we sent a petition, an > > articulate letter about our predicament, along with a stack of > > research to Dateline, or 20/20, the FDA itself, Oprah, our > Congress > > people, doctors, anyone we could reach? Has this already been > done? > > I've already written Dr. Phil and Oprah a long time ago, but it > was > > just me. I know others who had done it also. But what if we all > came > > together to do something? Is this just a far out idea? I think > about > > this all the time, especially after I'm been unvalidated by > someone, > > particularly doctors, who are ignorant. > > > > Teryn > > > Quote Link to comment Share on other sites More sharing options...
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