Guest guest Posted April 23, 2010 Report Share Posted April 23, 2010 I just spoke with a friend who has been HIV positive since 1981 and asked about how the gay community was able to get action on research and treatment. He said they had massive demonstrations everywhere. We need to do the same. Those of us who are too sick to go out should send our family and friends. We need massive numbers of people demonstrating in front of the offices of the CDC, NIH, State Houses etc. --and in the cities and towns--everywhere that tick-borne infections are endemic. We need media attention! We need advocate organizers to coordinate on the state and Federal level. We need celebrities (Magic really helped the AIDS cause) who've been touched by Lyme to go public and join us. Kim > > From: Sonya Putnam <sonyafly@...> > Subject: Re: [ ] OT: ISDA > > Date: Thursday, April 22, 2010, 10:42 AM > > We need to protest. The entire country needs to protest. We need to petition, get into the media, anything. > > Sent from my BlackBerry® smartphone with SprintSpeed > > [ ] OT: ISDA > > Not that they're for me but this just continues to illustrate how the medical community and insurance companies are more concerned with their own interests than those of their patients. > > deb > > > -------------------- > Review Panel Says Lyme Treatment Guidelines Don't Need To Change > -------------------- > > By ARIELLE LEVIN BECKER > The Hartford Courant > > April 22 2010, 12:06 PM EDT > > A special review panel for the Infectious Diseases Society of America announced Thursday that, after more than a year of work, it was recommending against making any changes to the society's controversial guidelines for treating Lyme disease. > > The complete article can be viewed at: > http://www.courant.com/health/hc-lyme-treatment-guidlines-panel-0422,0,1097144.s\ tory > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2010 Report Share Posted April 23, 2010 Kim, I am with you. I started a Community Page on Facebook in regards to the IDSA & I hope we all can do just that! May is Lyme Disease Awareness Month & so this needs to be done soon! If you are on Facebook, please search, " IDSA Denies Proper Treatment for Lyme Disease " . -Sonya Sent from my BlackBerry® smartphone with SprintSpeed [ ] OT: ISDA > > Not that they're for me but this just continues to illustrate how the medical community and insurance companies are more concerned with their own interests than those of their patients. > > deb > > > -------------------- > Review Panel Says Lyme Treatment Guidelines Don't Need To Change > -------------------- > > By ARIELLE LEVIN BECKER > The Hartford Courant > > April 22 2010, 12:06 PM EDT > > A special review panel for the Infectious Diseases Society of America announced Thursday that, after more than a year of work, it was recommending against making any changes to the society's controversial guidelines for treating Lyme disease. > > The complete article can be viewed at: > http://www.courant.com/health/hc-lyme-treatment-guidlines-panel-0422,0,1097144.s\ tory > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2010 Report Share Posted April 23, 2010 LOTS OF PEOPLE ARE TALKING ABOUT THIS RIGHT NOW, SO WE'RE GONNA SEE IF IT'S SOMETHING THAT CAN BE DONE. NO GUARANTEES, BUT WE'RE GOING TO SEE IF WE'RE ABLE TO PULL IT OFF! From: KTOvrutsky@... <KTOvrutsky@...> Subject: Re: [ ] Re: OT: ISDA Date: Friday, April 23, 2010, 7:41 AM  I just spoke with a friend who has been HIV positive since 1981 and asked about how the gay community was able to get action on research and treatment. He said they had massive demonstrations everywhere. We need to do the same. Those of us who are too sick to go out should send our family and friends. We need massive numbers of people demonstrating in front of the offices of the CDC, NIH, State Houses etc. --and in the cities and towns--everywhere that tick-borne infections are endemic. We need media attention! We need advocate organizers to coordinate on the state and Federal level. We need celebrities (Magic really helped the AIDS cause) who've been touched by Lyme to go public and join us. Kim > > From: Sonya Putnam <sonyafly@.. .> > Subject: Re: [ ] OT: ISDA > > Date: Thursday, April 22, 2010, 10:42 AM > > We need to protest. The entire country needs to protest. We need to petition, get into the media, anything. > > Sent from my BlackBerry® smartphone with SprintSpeed > > [ ] OT: ISDA > > Not that they're for me but this just continues to illustrate how the medical community and insurance companies are more concerned with their own interests than those of their patients. > > deb > > > ------------ -------- > Review Panel Says Lyme Treatment Guidelines Don't Need To Change > ------------ -------- > > By ARIELLE LEVIN BECKER > The Hartford Courant > > April 22 2010, 12:06 PM EDT > > A special review panel for the Infectious Diseases Society of America announced Thursday that, after more than a year of work, it was recommending against making any changes to the society's controversial guidelines for treating Lyme disease. > > The complete article can be viewed at: > http://www.courant. com/health/ hc-lyme-treatmen t-guidlines- panel-0422, 0,1097144. story > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2010 Report Share Posted April 23, 2010 There were two Act-Up groups that formed who were very busy with demonstrations. They spilled AIDS blood on the capitol steps in Washington - hm - maybe we oughta hire them! Or get them going again -----> Lyme Act-Up. Well, I " acted up " from the get-go, when I met my first duck who tried to undiagnose me with the ELISA test after I had already tested positive on the Western blot - I gave him what-for about " surveillance purposes only " and the insurance companies, and then went out and talked to the staff about what was going on. Ever since, I have spoken up in doctor offices, first to the doctor and then the staff. That's something to do, at least, to let the doctor know that the denial of Lyme and co's is unacceptable, and stop this deference that they are used to receiving from patients. I've gotten one ER dept educated here. Start thinking about what you want to do to voice your opinion. - Robin [ ] OT: ISDA > > Not that they're for me but this just continues to illustrate how the medical community and insurance companies are more concerned with their own interests than those of their patients. > > deb > > > -------------------- > Review Panel Says Lyme Treatment Guidelines Don't Need To Change > -------------------- > > By ARIELLE LEVIN BECKER > The Hartford Courant > > April 22 2010, 12:06 PM EDT > > A special review panel for the Infectious Diseases Society of America announced Thursday that, after more than a year of work, it was recommending against making any changes to the society's controversial guidelines for treating Lyme disease. > > The complete article can be viewed at: > http://www.courant.com/health/hc-lyme-treatment-guidlines-panel-0422,0,1097144.s\ tory > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2010 Report Share Posted April 24, 2010 I have often wondered about really doing a media blitz with what I call core lyme/politic media: Cure Unknown, Under Our Skin, and a short description of the lyme databases and summary of how this story unfolded, something like I have written and sits on my hard drive. What if we had a campaign to flood major university research departments, head of hospitals, and major media outlets across the country with this material. The books are appropriately priced for mass distribution, and perhaps we can strike a deal for a lower price on Under Our Skin. Together with databases on chronicity of the disease and cystic forms, that would be a powerful packet for distribution. This has been my dream. A group in every state would identify the target recipients by developing a list, and decide how to split the cost of the materials, and distribution costs. I am willing. Who else is? My only concern is that my oldest child is shooting for medical school in the next 4 years. I don't want my real last name associated with the distribution in case it blackballs her from entering medical school. (lymewreck36 from lymenet) In a message dated 4/24/2010 8:03:22 A.M. Central Daylight Time, KTOvrutsky@... writes: In the 80s when HIV/AIDS was identified solely with homosexual activity, there was a lot of discrimination against gays in the U.S., especially among evangelical Christians. Europeans have been generally more tolerant of gays. The question is how do we, the Lyme community, become more visible? I think there's a lot of fear surrounding tick-borne diseases, as well as a lot of ignorance about how devastating they can be. And the brief news spots I've seen on TV don't really address the key issues in depth. The book Cure Unknown really covers every aspect of Lyme, but its not exactly on the best-seller list. [ ] Re: OT: ISDA --- In _ @Lyme_Aid_BuhLym_ (mailto: ) , KTOvrutsky@., KTO > > > I just spoke with a friend who has been HIV positive since 1981 and asked about how the gay community was able to get action on research and treatment. He said they had massive demonstrations everywhere. We need to do the same. I think this has a lot to do with the 'disadvantaged' position of the gay community at the time, and the fact that some famous personalities got very ill, drawing lots of attention to this new illness. In most of Europe it was politically 'not done' to refuse something that was primarily beneficial for the gay community, otherwise you would be 'discriminating'I think this has a lot to do with the 'disadvantaged' position of the gay commu i think Lyme patients are in an entirely different situation. They are mostly invisible to the average citizen and don't have another 'common denominator' to make them visible as a group. Don't know the details for US, but in Europe HIV research is mostly the exception to the rule. They get an exceptional amount of research money for just one disease. The only other example that comes to mind over here is children's cancer - small numbers of patients and very expensive research, but who dares to refuse anything involved with that subject? [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2010 Report Share Posted April 24, 2010 In the 80s when HIV/AIDS was identified solely with homosexual activity, there was a lot of discrimination against gays in the U.S., especially among evangelical Christians. Europeans have been generally more tolerant of gays. The question is how do we, the Lyme community, become more visible? I think there's a lot of fear surrounding tick-borne diseases, as well as a lot of ignorance about how devastating they can be. And the brief news spots I've seen on TV don't really address the key issues in depth. The book Cure Unknown really covers every aspect of Lyme, but its not exactly on the best-seller list. [ ] Re: OT: ISDA > > > I just spoke with a friend who has been HIV positive since 1981 and asked about how the gay community was able to get action on research and treatment. He said they had massive demonstrations everywhere. We need to do the same. I think this has a lot to do with the 'disadvantaged' position of the gay community at the time, and the fact that some famous personalities got very ill, drawing lots of attention to this new illness. In most of Europe it was politically 'not done' to refuse something that was primarily beneficial for the gay community, otherwise you would be 'discriminating'. So they got loads of research money for HIV, once the situation became clear. i think Lyme patients are in an entirely different situation. They are mostly invisible to the average citizen and don't have another 'common denominator' to make them visible as a group. Don't know the details for US, but in Europe HIV research is mostly the exception to the rule. They get an exceptional amount of research money for just one disease. The only other example that comes to mind over here is children's cancer - small numbers of patients and very expensive research, but who dares to refuse anything involved with that subject? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2010 Report Share Posted April 24, 2010 I'm in to help any way I can & I have a group around the country. Only most of us are completely broke. I know I am. -Sonya Sent from my BlackBerry® smartphone with SprintSpeed [ ] Re: OT: ISDA --- In_ @Lyme_Aid_BuhLym_ (mailto: ) , KTOvrutsky@., KTO > > > I just spoke with a friend who has been HIV positive since 1981 and asked about how the gay community was able to get action on research and treatment. He said they had massive demonstrations everywhere. We need to do the same. I think this has a lot to do with the 'disadvantaged' position of the gay community at the time, and the fact that some famous personalities got very ill, drawing lots of attention to this new illness. In most of Europe it was politically 'not done' to refuse something that was primarily beneficial for the gay community, otherwise you would be 'discriminating'I think this has a lot to do with the 'disadvantaged' position of the gay commu i think Lyme patients are in an entirely different situation. They are mostly invisible to the average citizen and don't have another 'common denominator' to make them visible as a group. Don't know the details for US, but in Europe HIV research is mostly the exception to the rule. They get an exceptional amount of research money for just one disease. The only other example that comes to mind over here is children's cancer - small numbers of patients and very expensive research, but who dares to refuse anything involved with that subject? [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2010 Report Share Posted April 26, 2010 We are trying to organize a huge rally Nationwide (perhaps worldwide?) on one specific day (hopefully in May for Lyme Awareness Month). We need supporters outside The Today Show with signs, Good Morning America, outside Oprah's studio, in every major city in the country (where they have news crews). We need bodies. Lots and lots of people. Is there anyone on this forum willing to participate & gather up enough people to do so as well? Sonyafly@... -Sonya Sent from my BlackBerry® smartphone with SprintSpeed [ ] Re: OT: ISDA > > > In the 80s when HIV/AIDS was identified solely with homosexual activity, there was a lot of discrimination against gays in the U.S., especially among evangelical Christians. Europeans have been generally more tolerant of gays. I know the situation seems different; I think in EU there also was a lot of discrimination, but it was 'not done' do talk about that in public - especially in my country. I think in both regions the special position of gays played its part; if the first AIDS victims had been from another 'minority' group I doubt it would have attracted the same attention and money. >The question is how do we, the Lyme community, become more visible? I think there's a lot of fear surrounding tick-borne diseases, as well as a lot of ignorance about how devastating they can be. And the brief news spots I've seen on TV don't really address the key issues in depth. yes, that is a HUGE issue. I'm not sure if fear for creepy ticks is a major issue, I think it is mostly ignorance what it is about. Lymies are viewed pretty negatively by the general public. I have never heard such a thing regarding people who have chronic Q-fever or other chronic disease. Lymies are often portrayed by the media as 'people who are always tired'. In most EU countries many of them claim disability (in my country often for life - which is very strange IMHO; I think many of those claims are not legitimate). And the public sees the Lymies only when they feel well and not when they feel ill. Even my direct family has a hard time understanding that. We just had the first TV programme in Netherlands two weeks ago that had a fair presentation of some of the Lyme issues. They again had a patient who was 'very tired' and could not go to school for some months, but looked pretty normal on TV - not very convincing. But they also showed that in a private Lyme clinic in the south of Germany (far away by Dutch standards), about 10% of the patients were from the Netherlands. Everyone should wonder what is going on there. They also showed Dutch patients who went to the Czech republic and other Balkan countries for ABX treatments because those treatments are not possible in Netherlands (or very difficult to get). One patient explained that despite having to pay all the costs herself, and despite serious pain and other troubles during the treatment, she would do it again if the lyme resurfaces. We are trying to get more media coverage here this summer, when we present new material to our parliament. We are getting more coverage in the newspapers, and the old guard from the medical/microbiological community is now regularly writing to the newspapers about Lyme hysteria. They seem to be getting worried, which is a good sign. But the recent IDSA ruling that they won't change their Lyme guidelines is a serious bummer > The book Cure Unknown really covers every aspect of Lyme, but its not exactly on the best-seller list. yes, one of the best Lyme books I have read. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2010 Report Share Posted April 26, 2010 Knotweed, Would you be willing to share what you have written, any videos, etc with me? We are trying to get as much out to the media as possible. Sonyafly@... -Sonya Sent from my BlackBerry® smartphone with SprintSpeed [ ] Re: OT: ISDA > > > I have often wondered about really doing a media blitz with what I call > core lyme/politic media: Cure Unknown, Under Our Skin, and a short > description of the lyme databases and summary of how this story unfolded, something > like I have written and sits on my hard drive. we are trying to do something like that in Netherlands, e.g. by summarizing the issues for the press, presenting scientific articles (I write those) with our view on Lyme, to prove that the IDSA view and their guidelines are garbage and that testing and treatment guidelines need to change. However, you need to keep all info very compact, most people won't read a book or even a short story. If you send politicians a report of a few pages, even if they are interested (e.g. because family members have lyme) they often don't even read the one page summary of the material and just ask 'what should be done' if you are lucky. Unfortunately, the issue is too complex for quick explanations and quick fixes. I have also though about presenting short clips on youtube to refute the IDSA views, to show al the material that proves that IDSA are the people who still think the earth is flat and want to enforce this view on everyone. Or maybe presenting more compelling stories about the military and commercial interests that work against us ... I think there is a lot of interesting material here for investigative reporting, but the media seem to be afraid of it. I can understand that in the US, but it surprises me that it is similar in Europa. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2010 Report Share Posted April 26, 2010 HI - I also like the idea of people meeting in front of large medical institutions that we know stand down on the recognition of Lyme, with signs and passing out info perhaps at the noon hour. - Robin [ ] Re: OT: ISDA > > > In the 80s when HIV/AIDS was identified solely with homosexual activity, there was a lot of discrimination against gays in the U.S., especially among evangelical Christians. Europeans have been generally more tolerant of gays. I know the situation seems different; I think in EU there also was a lot of discrimination, but it was 'not done' do talk about that in public - especially in my country. I think in both regions the special position of gays played its part; if the first AIDS victims had been from another 'minority' group I doubt it would have attracted the same attention and money. >The question is how do we, the Lyme community, become more visible? I think there's a lot of fear surrounding tick-borne diseases, as well as a lot of ignorance about how devastating they can be. And the brief news spots I've seen on TV don't really address the key issues in depth. yes, that is a HUGE issue. I'm not sure if fear for creepy ticks is a major issue, I think it is mostly ignorance what it is about. Lymies are viewed pretty negatively by the general public. I have never heard such a thing regarding people who have chronic Q-fever or other chronic disease. Lymies are often portrayed by the media as 'people who are always tired'. In most EU countries many of them claim disability (in my country often for life - which is very strange IMHO; I think many of those claims are not legitimate). And the public sees the Lymies only when they feel well and not when they feel ill. Even my direct family has a hard time understanding that. We just had the first TV programme in Netherlands two weeks ago that had a fair presentation of some of the Lyme issues. They again had a patient who was 'very tired' and could not go to school for some months, but looked pretty normal on TV - not very convincing. But they also showed that in a private Lyme clinic in the south of Germany (far away by Dutch standards), about 10% of the patients were from the Netherlands. Everyone should wonder what is going on there. They also showed Dutch patients who went to the Czech republic and other Balkan countries for ABX treatments because those treatments are not possible in Netherlands (or very difficult to get). One patient explained that despite having to pay all the costs herself, and despite serious pain and other troubles during the treatment, she would do it again if the lyme resurfaces. We are trying to get more media coverage here this summer, when we present new material to our parliament. We are getting more coverage in the newspapers, and the old guard from the medical/microbiological community is now regularly writing to the newspapers about Lyme hysteria. They seem to be getting worried, which is a good sign. But the recent IDSA ruling that they won't change their Lyme guidelines is a serious bummer > The book Cure Unknown really covers every aspect of Lyme, but its not exactly on the best-seller list. yes, one of the best Lyme books I have read. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2010 Report Share Posted April 26, 2010 Anything & everything will help. I will announce the date when it is voted on Facebook. Sent from my BlackBerry® smartphone with SprintSpeed [ ] Re: OT: ISDA > > > In the 80s when HIV/AIDS was identified solely with homosexual activity, there was a lot of discrimination against gays in the U.S., especially among evangelical Christians. Europeans have been generally more tolerant of gays. I know the situation seems different; I think in EU there also was a lot of discrimination, but it was 'not done' do talk about that in public - especially in my country. I think in both regions the special position of gays played its part; if the first AIDS victims had been from another 'minority' group I doubt it would have attracted the same attention and money. >The question is how do we, the Lyme community, become more visible? I think there's a lot of fear surrounding tick-borne diseases, as well as a lot of ignorance about how devastating they can be. And the brief news spots I've seen on TV don't really address the key issues in depth. yes, that is a HUGE issue. I'm not sure if fear for creepy ticks is a major issue, I think it is mostly ignorance what it is about. Lymies are viewed pretty negatively by the general public. I have never heard such a thing regarding people who have chronic Q-fever or other chronic disease. Lymies are often portrayed by the media as 'people who are always tired'. In most EU countries many of them claim disability (in my country often for life - which is very strange IMHO; I think many of those claims are not legitimate). And the public sees the Lymies only when they feel well and not when they feel ill. Even my direct family has a hard time understanding that. We just had the first TV programme in Netherlands two weeks ago that had a fair presentation of some of the Lyme issues. They again had a patient who was 'very tired' and could not go to school for some months, but looked pretty normal on TV - not very convincing. But they also showed that in a private Lyme clinic in the south of Germany (far away by Dutch standards), about 10% of the patients were from the Netherlands. Everyone should wonder what is going on there. They also showed Dutch patients who went to the Czech republic and other Balkan countries for ABX treatments because those treatments are not possible in Netherlands (or very difficult to get). One patient explained that despite having to pay all the costs herself, and despite serious pain and other troubles during the treatment, she would do it again if the lyme resurfaces. We are trying to get more media coverage here this summer, when we present new material to our parliament. We are getting more coverage in the newspapers, and the old guard from the medical/microbiological community is now regularly writing to the newspapers about Lyme hysteria. They seem to be getting worried, which is a good sign. But the recent IDSA ruling that they won't change their Lyme guidelines is a serious bummer > The book Cure Unknown really covers every aspect of Lyme, but its not exactly on the best-seller list. yes, one of the best Lyme books I have read. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2010 Report Share Posted April 26, 2010 Im willing but I live in CA. I want to write a letter to Oprah and Im wondering if that has already been done? From: Sonya Putnam <sonyafly@...> Subject: Re: [ ] Re: OT: ISDA Date: Monday, April 26, 2010, 12:27 PM  Anything & everything will help. I will announce the date when it is voted on Facebook. Sent from my BlackBerry® smartphone with SprintSpeed [ ] Re: OT: ISDA > > > In the 80s when HIV/AIDS was identified solely with homosexual activity, there was a lot of discrimination against gays in the U.S., especially among evangelical Christians. Europeans have been generally more tolerant of gays. I know the situation seems different; I think in EU there also was a lot of discrimination, but it was 'not done' do talk about that in public - especially in my country. I think in both regions the special position of gays played its part; if the first AIDS victims had been from another 'minority' group I doubt it would have attracted the same attention and money. >The question is how do we, the Lyme community, become more visible? I think there's a lot of fear surrounding tick-borne diseases, as well as a lot of ignorance about how devastating they can be. And the brief news spots I've seen on TV don't really address the key issues in depth. yes, that is a HUGE issue. I'm not sure if fear for creepy ticks is a major issue, I think it is mostly ignorance what it is about. Lymies are viewed pretty negatively by the general public. I have never heard such a thing regarding people who have chronic Q-fever or other chronic disease. Lymies are often portrayed by the media as 'people who are always tired'. In most EU countries many of them claim disability (in my country often for life - which is very strange IMHO; I think many of those claims are not legitimate). And the public sees the Lymies only when they feel well and not when they feel ill. Even my direct family has a hard time understanding that. We just had the first TV programme in Netherlands two weeks ago that had a fair presentation of some of the Lyme issues. They again had a patient who was 'very tired' and could not go to school for some months, but looked pretty normal on TV - not very convincing. But they also showed that in a private Lyme clinic in the south of Germany (far away by Dutch standards), about 10% of the patients were from the Netherlands. Everyone should wonder what is going on there. They also showed Dutch patients who went to the Czech republic and other Balkan countries for ABX treatments because those treatments are not possible in Netherlands (or very difficult to get). One patient explained that despite having to pay all the costs herself, and despite serious pain and other troubles during the treatment, she would do it again if the lyme resurfaces. We are trying to get more media coverage here this summer, when we present new material to our parliament. We are getting more coverage in the newspapers, and the old guard from the medical/microbiolog ical community is now regularly writing to the newspapers about Lyme hysteria. They seem to be getting worried, which is a good sign. But the recent IDSA ruling that they won't change their Lyme guidelines is a serious bummer > The book Cure Unknown really covers every aspect of Lyme, but its not exactly on the best-seller list. yes, one of the best Lyme books I have read. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2010 Report Share Posted April 26, 2010 I think many, many people have written to Oprah. Go to her website. There is a community there. I live in California too. Where are you? I'm in SoCal, Inland Empire. -Sonya Sent from my BlackBerry® smartphone with SprintSpeed [ ] Re: OT: ISDA > > > In the 80s when HIV/AIDS was identified solely with homosexual activity, there was a lot of discrimination against gays in the U.S., especially among evangelical Christians. Europeans have been generally more tolerant of gays. I know the situation seems different; I think in EU there also was a lot of discrimination, but it was 'not done' do talk about that in public - especially in my country. I think in both regions the special position of gays played its part; if the first AIDS victims had been from another 'minority' group I doubt it would have attracted the same attention and money. >The question is how do we, the Lyme community, become more visible? I think there's a lot of fear surrounding tick-borne diseases, as well as a lot of ignorance about how devastating they can be. And the brief news spots I've seen on TV don't really address the key issues in depth. yes, that is a HUGE issue. I'm not sure if fear for creepy ticks is a major issue, I think it is mostly ignorance what it is about. Lymies are viewed pretty negatively by the general public. I have never heard such a thing regarding people who have chronic Q-fever or other chronic disease. Lymies are often portrayed by the media as 'people who are always tired'. In most EU countries many of them claim disability (in my country often for life - which is very strange IMHO; I think many of those claims are not legitimate). And the public sees the Lymies only when they feel well and not when they feel ill. Even my direct family has a hard time understanding that. We just had the first TV programme in Netherlands two weeks ago that had a fair presentation of some of the Lyme issues. They again had a patient who was 'very tired' and could not go to school for some months, but looked pretty normal on TV - not very convincing. But they also showed that in a private Lyme clinic in the south of Germany (far away by Dutch standards), about 10% of the patients were from the Netherlands. Everyone should wonder what is going on there. They also showed Dutch patients who went to the Czech republic and other Balkan countries for ABX treatments because those treatments are not possible in Netherlands (or very difficult to get). One patient explained that despite having to pay all the costs herself, and despite serious pain and other troubles during the treatment, she would do it again if the lyme resurfaces. We are trying to get more media coverage here this summer, when we present new material to our parliament. We are getting more coverage in the newspapers, and the old guard from the medical/microbiolog ical community is now regularly writing to the newspapers about Lyme hysteria. They seem to be getting worried, which is a good sign. But the recent IDSA ruling that they won't change their Lyme guidelines is a serious bummer > The book Cure Unknown really covers every aspect of Lyme, but its not exactly on the best-seller list. yes, one of the best Lyme books I have read. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2010 Report Share Posted April 26, 2010 I tried for years to sway Oprah, sent her all the databases on chronic lyme, told her about the politics.....don't know how much actually got to her and how much disappeared with the delete button, but I tried. I know others went before me. You folks in California should go for it! In a message dated 4/26/2010 11:54:36 P.M. Central Daylight Time, sfrobink@... writes: We all have tried a couple times writing to Oprah - she has never responded, so I think it's a waste of our efforts - better yet to make some noise where you are - hold some signs, hand out info, whatever, for May Lyme Disease Awareness month. You probably could still contact your local media and ask if they would be willing to run a PSA or blog the info. If you need help, holler - we're used to helping all get the info you need to educate the public - thx - Robin [ ] Re: OT: ISDA > > > In the 80s when HIV/AIDS was identified solely with homosexual activity, there was a lot of discrimination against gays in the U.S., especially among evangelical Christians. Europeans have been generally more tolerant of gays. I know the situation seems different; I think in EU there also was a lot of discrimination, but it was 'not done' do talk about that in public - especially in my country. I think in both regions the special position of gays played its part; if the first AIDS victims had been from another 'minority' group I doubt it would have attracted the same attention and money. >The question is how do we, the Lyme community, become more visible? I think there's a lot of fear surrounding tick-borne diseases, as well as a lot of ignorance about how devastating they can be. And the brief news spots I've seen on TV don't really address the key issues in depth. yes, that is a HUGE issue. I'm not sure if fear for creepy ticks is a major issue, I think it is mostly ignorance what it is about. Lymies are viewed pretty negatively by the general public. I have never heard such a thing regarding people who have chronic Q-fever or other chronic disease. Lymies are often portrayed by the media as 'people who are always tired'. In most EU countries many of them claim disability (in my country often for life - which is very strange IMHO; I think many of those claims are not legitimate). And the public sees the Lymies only when they feel well and not when they feel ill. Even my direct family has a hard time understanding that. We just had the first TV programme in Netherlands two weeks ago that had a fair presentation of some of the Lyme issues. They again had a patient who was 'very tired' and could not go to school for some months, but looked pretty normal on TV - not very convincing. But they also showed that in a private Lyme clinic in the south of Germany (far away by Dutch standards), about 10% of the patients were from the Netherlands. Everyone should wonder what is going on there. They also showed Dutch patients who went to the Czech republic and other Balkan countries for ABX treatments because those treatments are not possible in Netherlands (or very difficult to get). One patient explained that despite having to pay all the costs herself, and despite serious pain and other troubles during the treatment, she would do it again if the lyme resurfaces. We are trying to get more media coverage here this summer, when we present new material to our parliament. We are getting more coverage in the newspapers, and the old guard from the medical/microbiolog ical community is now regularly writing to the newspapers about Lyme hysteria. They seem to be getting worried, which is a good sign. But the recent IDSA ruling that they won't change their Lyme guidelines is a serious bummer > The book Cure Unknown really covers every aspect of Lyme, but its not exactly on the best-seller list. yes, one of the best Lyme books I have read. [Non-text portions of this message have been removed] ------------ --------- --------- ------ Buy Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And Its Coinfections by Buhner at one of these locations: _http://tinyurl._ (http://tinyurl./) com/3bgm5d Links [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2010 Report Share Posted April 26, 2010 We all have tried a couple times writing to Oprah - she has never responded, so I think it's a waste of our efforts - better yet to make some noise where you are - hold some signs, hand out info, whatever, for May Lyme Disease Awareness month. You probably could still contact your local media and ask if they would be willing to run a PSA or blog the info. If you need help, holler - we're used to helping all get the info you need to educate the public - thx - Robin [ ] Re: OT: ISDA > > > In the 80s when HIV/AIDS was identified solely with homosexual activity, there was a lot of discrimination against gays in the U.S., especially among evangelical Christians. Europeans have been generally more tolerant of gays. I know the situation seems different; I think in EU there also was a lot of discrimination, but it was 'not done' do talk about that in public - especially in my country. I think in both regions the special position of gays played its part; if the first AIDS victims had been from another 'minority' group I doubt it would have attracted the same attention and money. >The question is how do we, the Lyme community, become more visible? I think there's a lot of fear surrounding tick-borne diseases, as well as a lot of ignorance about how devastating they can be. And the brief news spots I've seen on TV don't really address the key issues in depth. yes, that is a HUGE issue. I'm not sure if fear for creepy ticks is a major issue, I think it is mostly ignorance what it is about. Lymies are viewed pretty negatively by the general public. I have never heard such a thing regarding people who have chronic Q-fever or other chronic disease. Lymies are often portrayed by the media as 'people who are always tired'. In most EU countries many of them claim disability (in my country often for life - which is very strange IMHO; I think many of those claims are not legitimate). And the public sees the Lymies only when they feel well and not when they feel ill. Even my direct family has a hard time understanding that. We just had the first TV programme in Netherlands two weeks ago that had a fair presentation of some of the Lyme issues. They again had a patient who was 'very tired' and could not go to school for some months, but looked pretty normal on TV - not very convincing. But they also showed that in a private Lyme clinic in the south of Germany (far away by Dutch standards), about 10% of the patients were from the Netherlands. Everyone should wonder what is going on there. They also showed Dutch patients who went to the Czech republic and other Balkan countries for ABX treatments because those treatments are not possible in Netherlands (or very difficult to get). One patient explained that despite having to pay all the costs herself, and despite serious pain and other troubles during the treatment, she would do it again if the lyme resurfaces. We are trying to get more media coverage here this summer, when we present new material to our parliament. We are getting more coverage in the newspapers, and the old guard from the medical/microbiolog ical community is now regularly writing to the newspapers about Lyme hysteria. They seem to be getting worried, which is a good sign. But the recent IDSA ruling that they won't change their Lyme guidelines is a serious bummer > The book Cure Unknown really covers every aspect of Lyme, but its not exactly on the best-seller list. yes, one of the best Lyme books I have read. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2010 Report Share Posted April 26, 2010 The PSA is being shot either this Thurs or Friday! Yay! and we are trying to come up with one day for veryone to do the rally & hold signs, etc. Please email me if you are willing to do it! We need HUGE numbers nationwide so please, if you have lyme or love someone that has lyme PATRICIPATE! Sonyafly@... -Sonya Sent from my BlackBerry® smartphone with SprintSpeed [ ] Re: OT: ISDA > > > In the 80s when HIV/AIDS was identified solely with homosexual activity, there was a lot of discrimination against gays in the U.S., especially among evangelical Christians. Europeans have been generally more tolerant of gays. I know the situation seems different; I think in EU there also was a lot of discrimination, but it was 'not done' do talk about that in public - especially in my country. I think in both regions the special position of gays played its part; if the first AIDS victims had been from another 'minority' group I doubt it would have attracted the same attention and money. >The question is how do we, the Lyme community, become more visible? I think there's a lot of fear surrounding tick-borne diseases, as well as a lot of ignorance about how devastating they can be. And the brief news spots I've seen on TV don't really address the key issues in depth. yes, that is a HUGE issue. I'm not sure if fear for creepy ticks is a major issue, I think it is mostly ignorance what it is about. Lymies are viewed pretty negatively by the general public. I have never heard such a thing regarding people who have chronic Q-fever or other chronic disease. Lymies are often portrayed by the media as 'people who are always tired'. In most EU countries many of them claim disability (in my country often for life - which is very strange IMHO; I think many of those claims are not legitimate). And the public sees the Lymies only when they feel well and not when they feel ill. Even my direct family has a hard time understanding that. We just had the first TV programme in Netherlands two weeks ago that had a fair presentation of some of the Lyme issues. They again had a patient who was 'very tired' and could not go to school for some months, but looked pretty normal on TV - not very convincing. But they also showed that in a private Lyme clinic in the south of Germany (far away by Dutch standards), about 10% of the patients were from the Netherlands. Everyone should wonder what is going on there. They also showed Dutch patients who went to the Czech republic and other Balkan countries for ABX treatments because those treatments are not possible in Netherlands (or very difficult to get). One patient explained that despite having to pay all the costs herself, and despite serious pain and other troubles during the treatment, she would do it again if the lyme resurfaces. We are trying to get more media coverage here this summer, when we present new material to our parliament. We are getting more coverage in the newspapers, and the old guard from the medical/microbiolog ical community is now regularly writing to the newspapers about Lyme hysteria. They seem to be getting worried, which is a good sign. But the recent IDSA ruling that they won't change their Lyme guidelines is a serious bummer > The book Cure Unknown really covers every aspect of Lyme, but its not exactly on the best-seller list. yes, one of the best Lyme books I have read. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2010 Report Share Posted April 27, 2010 When the beef industry sued Oprah in the 1990's, she really came unglued. That is when she met Dr. Phil. She went to him to help her deal with the situation. I don't think she wants to make any more political waves. She is all about " feeling good, " which gets a bit to gooey for me! In a message dated 4/27/2010 10:01:41 P.M. Central Daylight Time, sfrobink@... writes: Maybe it's her corporate sponsors? But whatever it is, she's not budging when we write our stories about having Lyme. - Robin [ ] Re: OT: ISDA > > > In the 80s when HIV/AIDS was identified solely with homosexual activity, there was a lot of discrimination against gays in the U.S., especially among evangelical Christians. Europeans have been generally more tolerant of gays. I know the situation seems different; I think in EU there also was a lot of discrimination, but it was 'not done' do talk about that in public - especially in my country. I think in both regions the special position of gays played its part; if the first AIDS victims had been from another 'minority' group I doubt it would have attracted the same attention and money. >The question is how do we, the Lyme community, become more visible? I think there's a lot of fear surrounding tick-borne diseases, as well as a lot of ignorance about how devastating they can be. And the brief news spots I've seen on TV don't really address the key issues in depth. yes, that is a HUGE issue. I'm not sure if fear for creepy ticks is a major issue, I think it is mostly ignorance what it is about. Lymies are viewed pretty negatively by the general public. I have never heard such a thing regarding people who have chronic Q-fever or other chronic disease. Lymies are often portrayed by the media as 'people who are always tired'. In most EU countries many of them claim disability (in my country often for life - which is very strange IMHO; I think many of those claims are not legitimate). And the public sees the Lymies only when they feel well and not when they feel ill. Even my direct family has a hard time understanding that. We just had the first TV programme in Netherlands two weeks ago that had a fair presentation of some of the Lyme issues. They again had a patient who was 'very tired' and could not go to school for some months, but looked pretty normal on TV - not very convincing. But they also showed that in a private Lyme clinic in the south of Germany (far away by Dutch standards), about 10% of the patients were from the Netherlands. Everyone should wonder what is going on there. They also showed Dutch patients who went to the Czech republic and other Balkan countries for ABX treatments because those treatments are not possible in Netherlands (or very difficult to get). One patient explained that despite having to pay all the costs herself, and despite serious pain and other troubles during the treatment, she would do it again if the lyme resurfaces. We are trying to get more media coverage here this summer, when we present new material to our parliament. We are getting more coverage in the newspapers, and the old guard from the medical/microbiolog ical community is now regularly writing to the newspapers about Lyme hysteria. They seem to be getting worried, which is a good sign. But the recent IDSA ruling that they won't change their Lyme guidelines is a serious bummer > The book Cure Unknown really covers every aspect of Lyme, but its not exactly on the best-seller list. yes, one of the best Lyme books I have read. [Non-text portions of this message have been removed] ------------ --------- --------- ------ Buy Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And Its Coinfections by Buhner at one of these locations: __http://tinyurl.h_ (http://tinyurl._/) (_http://tinyurl.h_ (http://tinyurl./) ) com/3bgm5d Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2010 Report Share Posted April 27, 2010 Maybe it's her corporate sponsors? But whatever it is, she's not budging when we write our stories about having Lyme. - Robin [ ] Re: OT: ISDA > > > In the 80s when HIV/AIDS was identified solely with homosexual activity, there was a lot of discrimination against gays in the U.S., especially among evangelical Christians. Europeans have been generally more tolerant of gays. I know the situation seems different; I think in EU there also was a lot of discrimination, but it was 'not done' do talk about that in public - especially in my country. I think in both regions the special position of gays played its part; if the first AIDS victims had been from another 'minority' group I doubt it would have attracted the same attention and money. >The question is how do we, the Lyme community, become more visible? I think there's a lot of fear surrounding tick-borne diseases, as well as a lot of ignorance about how devastating they can be. And the brief news spots I've seen on TV don't really address the key issues in depth. yes, that is a HUGE issue. I'm not sure if fear for creepy ticks is a major issue, I think it is mostly ignorance what it is about. Lymies are viewed pretty negatively by the general public. I have never heard such a thing regarding people who have chronic Q-fever or other chronic disease. Lymies are often portrayed by the media as 'people who are always tired'. In most EU countries many of them claim disability (in my country often for life - which is very strange IMHO; I think many of those claims are not legitimate). And the public sees the Lymies only when they feel well and not when they feel ill. Even my direct family has a hard time understanding that. We just had the first TV programme in Netherlands two weeks ago that had a fair presentation of some of the Lyme issues. They again had a patient who was 'very tired' and could not go to school for some months, but looked pretty normal on TV - not very convincing. But they also showed that in a private Lyme clinic in the south of Germany (far away by Dutch standards), about 10% of the patients were from the Netherlands. Everyone should wonder what is going on there. They also showed Dutch patients who went to the Czech republic and other Balkan countries for ABX treatments because those treatments are not possible in Netherlands (or very difficult to get). One patient explained that despite having to pay all the costs herself, and despite serious pain and other troubles during the treatment, she would do it again if the lyme resurfaces. We are trying to get more media coverage here this summer, when we present new material to our parliament. We are getting more coverage in the newspapers, and the old guard from the medical/microbiolog ical community is now regularly writing to the newspapers about Lyme hysteria. They seem to be getting worried, which is a good sign. But the recent IDSA ruling that they won't change their Lyme guidelines is a serious bummer > The book Cure Unknown really covers every aspect of Lyme, but its not exactly on the best-seller list. yes, one of the best Lyme books I have read. [Non-text portions of this message have been removed] ------------ --------- --------- ------ Buy Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And Its Coinfections by Buhner at one of these locations: _http://tinyurl._ (http://tinyurl./) com/3bgm5d Links [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2010 Report Share Posted May 20, 2010 Hi -- Whatever happened to this effort? On Apr 26, 2010, at 12:50 PM, Sonya Putnam wrote: > We are trying to organize a huge rally Nationwide (perhaps > worldwide?) on one specific day (hopefully in May for Lyme > Awareness Month). We need supporters outside The Today Show with > signs, Good Morning America, outside Oprah's studio, in every major > city in the country (where they have news crews). > > We need bodies. Lots and lots of people. Is there anyone on this > forum willing to participate & gather up enough people to do so as > well? > > Sonyafly@... > -Sonya > Sent from my BlackBerry® smartphone with SprintSpeed > > [ ] Re: OT: ISDA > > > > >> >> >> In the 80s when HIV/AIDS was identified solely with homosexual >> activity, there was a lot of discrimination against gays in the >> U.S., especially among evangelical Christians. Europeans have >> been generally more tolerant of gays. > > I know the situation seems different; I think in EU there also was > a lot of discrimination, but it was 'not done' do talk about that > in public - especially in my country. I think in both regions the > special position of gays played its part; if the first AIDS victims > had been from another 'minority' group I doubt it would have > attracted the same attention and money. > > >> The question is how do we, the Lyme community, become more >> visible? I think there's a lot of fear surrounding tick-borne >> diseases, as well as a lot of ignorance about how devastating they >> can be. And the brief news spots I've seen on TV don't really >> address the key issues in depth. > > yes, that is a HUGE issue. I'm not sure if fear for creepy ticks is > a major issue, I think it is mostly ignorance what it is about. > Lymies are viewed pretty negatively by the general public. I have > never heard such a thing regarding people who have chronic Q-fever > or other chronic disease. Lymies are often portrayed by the media > as 'people who are always tired'. In most EU countries many of them > claim disability (in my country often for life - which is very > strange IMHO; I think many of those claims are not legitimate). And > the public sees the Lymies only when they feel well and not when > they feel ill. Even my direct family has a hard time understanding > that. > > We just had the first TV programme in Netherlands two weeks ago > that had a fair presentation of some of the Lyme issues. They again > had a patient who was 'very tired' and could not go to school for > some months, but looked pretty normal on TV - not very convincing. > But they also showed that in a private Lyme clinic in the south of > Germany (far away by Dutch standards), about 10% of the patients > were from the Netherlands. Everyone should wonder what is going on > there. > They also showed Dutch patients who went to the Czech republic and > other Balkan countries for ABX treatments because those treatments > are not possible in Netherlands (or very difficult to get). One > patient explained that despite having to pay all the costs herself, > and despite serious pain and other troubles during the treatment, > she would do it again if the lyme resurfaces. > > We are trying to get more media coverage here this summer, when we > present new material to our parliament. We are getting more > coverage in the newspapers, and the old guard from the medical/ > microbiological community is now regularly writing to the > newspapers about Lyme hysteria. They seem to be getting worried, > which is a good sign. But the recent IDSA ruling that they won't > change their Lyme guidelines is a serious bummer > >> The book Cure Unknown really covers every aspect of Lyme, but its >> not exactly on the best-seller list. > > yes, one of the best Lyme books I have read. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2010 Report Share Posted May 20, 2010 I don't know - didn't hear anything more, but my sense is it's just hard for Lyme patients to mobilize - right now they're gathering signatures in CT to go to the atty gen'l to let him know how important it is to keep going with this. Personally, I think it's time to sue for breach of agreement in an antitrust violation case and we'll gather up all the Lyme lawyers who want to help out! - Robin [ ] Re: OT: ISDA > > > > >> >> >> In the 80s when HIV/AIDS was identified solely with homosexual >> activity, there was a lot of discrimination against gays in the >> U.S., especially among evangelical Christians. Europeans have >> been generally more tolerant of gays. > > I know the situation seems different; I think in EU there also was > a lot of discrimination, but it was 'not done' do talk about that > in public - especially in my country. I think in both regions the > special position of gays played its part; if the first AIDS victims > had been from another 'minority' group I doubt it would have > attracted the same attention and money. > > >> The question is how do we, the Lyme community, become more >> visible? I think there's a lot of fear surrounding tick-borne >> diseases, as well as a lot of ignorance about how devastating they >> can be. And the brief news spots I've seen on TV don't really >> address the key issues in depth. > > yes, that is a HUGE issue. I'm not sure if fear for creepy ticks is > a major issue, I think it is mostly ignorance what it is about. > Lymies are viewed pretty negatively by the general public. I have > never heard such a thing regarding people who have chronic Q-fever > or other chronic disease. Lymies are often portrayed by the media > as 'people who are always tired'. In most EU countries many of them > claim disability (in my country often for life - which is very > strange IMHO; I think many of those claims are not legitimate). And > the public sees the Lymies only when they feel well and not when > they feel ill. Even my direct family has a hard time understanding > that. > > We just had the first TV programme in Netherlands two weeks ago > that had a fair presentation of some of the Lyme issues. They again > had a patient who was 'very tired' and could not go to school for > some months, but looked pretty normal on TV - not very convincing. > But they also showed that in a private Lyme clinic in the south of > Germany (far away by Dutch standards), about 10% of the patients > were from the Netherlands. Everyone should wonder what is going on > there. > They also showed Dutch patients who went to the Czech republic and > other Balkan countries for ABX treatments because those treatments > are not possible in Netherlands (or very difficult to get). One > patient explained that despite having to pay all the costs herself, > and despite serious pain and other troubles during the treatment, > she would do it again if the lyme resurfaces. > > We are trying to get more media coverage here this summer, when we > present new material to our parliament. We are getting more > coverage in the newspapers, and the old guard from the medical/ > microbiological community is now regularly writing to the > newspapers about Lyme hysteria. They seem to be getting worried, > which is a good sign. But the recent IDSA ruling that they won't > change their Lyme guidelines is a serious bummer > >> The book Cure Unknown really covers every aspect of Lyme, but its >> not exactly on the best-seller list. > > yes, one of the best Lyme books I have read. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2010 Report Share Posted May 20, 2010 What anti-trust violation case are your referring to? On May 20, 2010, at 10:04 PM, sfrobink@... wrote: > > I don't know - didn't hear anything more, but my sense is it's just > hard for Lyme patients to mobilize - right now they're gathering > signatures in CT to go to the atty gen'l to let him know how > important it is to keep going with this. Personally, I think it's > time to sue for breach of agreement in an antitrust violation case > and we'll gather up all the Lyme lawyers who want to help out! - Robin > > [ ] Re: OT: ISDA > > > > > > > > > >> > >> > >> In the 80s when HIV/AIDS was identified solely with homosexual > >> activity, there was a lot of discrimination against gays in the > >> U.S., especially among evangelical Christians. Europeans have > >> been generally more tolerant of gays. > > > > I know the situation seems different; I think in EU there also was > > a lot of discrimination, but it was 'not done' do talk about that > > in public - especially in my country. I think in both regions the > > special position of gays played its part; if the first AIDS victims > > had been from another 'minority' group I doubt it would have > > attracted the same attention and money. > > > > > >> The question is how do we, the Lyme community, become more > >> visible? I think there's a lot of fear surrounding tick-borne > >> diseases, as well as a lot of ignorance about how devastating they > >> can be. And the brief news spots I've seen on TV don't really > >> address the key issues in depth. > > > > yes, that is a HUGE issue. I'm not sure if fear for creepy ticks is > > a major issue, I think it is mostly ignorance what it is about. > > Lymies are viewed pretty negatively by the general public. I have > > never heard such a thing regarding people who have chronic Q-fever > > or other chronic disease. Lymies are often portrayed by the media > > as 'people who are always tired'. In most EU countries many of them > > claim disability (in my country often for life - which is very > > strange IMHO; I think many of those claims are not legitimate). And > > the public sees the Lymies only when they feel well and not when > > they feel ill. Even my direct family has a hard time understanding > > that. > > > > We just had the first TV programme in Netherlands two weeks ago > > that had a fair presentation of some of the Lyme issues. They again > > had a patient who was 'very tired' and could not go to school for > > some months, but looked pretty normal on TV - not very convincing. > > But they also showed that in a private Lyme clinic in the south of > > Germany (far away by Dutch standards), about 10% of the patients > > were from the Netherlands. Everyone should wonder what is going on > > there. > > They also showed Dutch patients who went to the Czech republic and > > other Balkan countries for ABX treatments because those treatments > > are not possible in Netherlands (or very difficult to get). One > > patient explained that despite having to pay all the costs herself, > > and despite serious pain and other troubles during the treatment, > > she would do it again if the lyme resurfaces. > > > > We are trying to get more media coverage here this summer, when we > > present new material to our parliament. We are getting more > > coverage in the newspapers, and the old guard from the medical/ > > microbiological community is now regularly writing to the > > newspapers about Lyme hysteria. They seem to be getting worried, > > which is a good sign. But the recent IDSA ruling that they won't > > change their Lyme guidelines is a serious bummer > > > >> The book Cure Unknown really covers every aspect of Lyme, but its > >> not exactly on the best-seller list. > > > > yes, one of the best Lyme books I have read. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2010 Report Share Posted May 20, 2010 It was the investigation done during 2006-2008 by the CT atty gen'l that found violation of anti-trust on the part of the IDSA for telling doctors how to treat when they were found to have 23 economic conflicts of interest involving patents, testkits, insurance consulting and vaccine prep. The IDSA has recently ignored the agreement they made with the Atty Gen'l to evaluate their guidelines which have been shown to be more based on beliefs than any science. The Lyme community submitted 1600 pages last summer showing studies and clinical evidence for the existence of chronic Lyme. Currently people are gathering signatures in CT to let the Atty Gen'l know how much concern there is over this lack of follow-thru on the part of the IDSA. My understanding is if they have violated the agreement, they can be taken to court. I personally think nothing less is going to work. - Robin [ ] Re: OT: ISDA > > > > > > > > > >> > >> > >> In the 80s when HIV/AIDS was identified solely with homosexual > >> activity, there was a lot of discrimination against gays in the > >> U.S., especially among evangelical Christians. Europeans have > >> been generally more tolerant of gays. > > > > I know the situation seems different; I think in EU there also was > > a lot of discrimination, but it was 'not done' do talk about that > > in public - especially in my country. I think in both regions the > > special position of gays played its part; if the first AIDS victims > > had been from another 'minority' group I doubt it would have > > attracted the same attention and money. > > > > > >> The question is how do we, the Lyme community, become more > >> visible? I think there's a lot of fear surrounding tick-borne > >> diseases, as well as a lot of ignorance about how devastating they > >> can be. And the brief news spots I've seen on TV don't really > >> address the key issues in depth. > > > > yes, that is a HUGE issue. I'm not sure if fear for creepy ticks is > > a major issue, I think it is mostly ignorance what it is about. > > Lymies are viewed pretty negatively by the general public. I have > > never heard such a thing regarding people who have chronic Q-fever > > or other chronic disease. Lymies are often portrayed by the media > > as 'people who are always tired'. In most EU countries many of them > > claim disability (in my country often for life - which is very > > strange IMHO; I think many of those claims are not legitimate). And > > the public sees the Lymies only when they feel well and not when > > they feel ill. Even my direct family has a hard time understanding > > that. > > > > We just had the first TV programme in Netherlands two weeks ago > > that had a fair presentation of some of the Lyme issues. They again > > had a patient who was 'very tired' and could not go to school for > > some months, but looked pretty normal on TV - not very convincing. > > But they also showed that in a private Lyme clinic in the south of > > Germany (far away by Dutch standards), about 10% of the patients > > were from the Netherlands. Everyone should wonder what is going on > > there. > > They also showed Dutch patients who went to the Czech republic and > > other Balkan countries for ABX treatments because those treatments > > are not possible in Netherlands (or very difficult to get). One > > patient explained that despite having to pay all the costs herself, > > and despite serious pain and other troubles during the treatment, > > she would do it again if the lyme resurfaces. > > > > We are trying to get more media coverage here this summer, when we > > present new material to our parliament. We are getting more > > coverage in the newspapers, and the old guard from the medical/ > > microbiological community is now regularly writing to the > > newspapers about Lyme hysteria. They seem to be getting worried, > > which is a good sign. But the recent IDSA ruling that they won't > > change their Lyme guidelines is a serious bummer > > > >> The book Cure Unknown really covers every aspect of Lyme, but its > >> not exactly on the best-seller list. > > > > yes, one of the best Lyme books I have read. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2010 Report Share Posted May 21, 2010 Still working on a date. Need at least 1000 people to join our FB group & then the organizing begins. We are just over 500. The group is called IDSA Denies Proper Treatment For Lyme Disease. -Sonya Sent from my BlackBerry® smartphone with SprintSpeed [ ] Re: OT: ISDA > > > > >> >> >> In the 80s when HIV/AIDS was identified solely with homosexual >> activity, there was a lot of discrimination against gays in the >> U.S., especially among evangelical Christians. Europeans have >> been generally more tolerant of gays. > > I know the situation seems different; I think in EU there also was > a lot of discrimination, but it was 'not done' do talk about that > in public - especially in my country. I think in both regions the > special position of gays played its part; if the first AIDS victims > had been from another 'minority' group I doubt it would have > attracted the same attention and money. > > >> The question is how do we, the Lyme community, become more >> visible? I think there's a lot of fear surrounding tick-borne >> diseases, as well as a lot of ignorance about how devastating they >> can be. And the brief news spots I've seen on TV don't really >> address the key issues in depth. > > yes, that is a HUGE issue. I'm not sure if fear for creepy ticks is > a major issue, I think it is mostly ignorance what it is about. > Lymies are viewed pretty negatively by the general public. I have > never heard such a thing regarding people who have chronic Q-fever > or other chronic disease. Lymies are often portrayed by the media > as 'people who are always tired'. In most EU countries many of them > claim disability (in my country often for life - which is very > strange IMHO; I think many of those claims are not legitimate). And > the public sees the Lymies only when they feel well and not when > they feel ill. Even my direct family has a hard time understanding > that. > > We just had the first TV programme in Netherlands two weeks ago > that had a fair presentation of some of the Lyme issues. They again > had a patient who was 'very tired' and could not go to school for > some months, but looked pretty normal on TV - not very convincing. > But they also showed that in a private Lyme clinic in the south of > Germany (far away by Dutch standards), about 10% of the patients > were from the Netherlands. Everyone should wonder what is going on > there. > They also showed Dutch patients who went to the Czech republic and > other Balkan countries for ABX treatments because those treatments > are not possible in Netherlands (or very difficult to get). One > patient explained that despite having to pay all the costs herself, > and despite serious pain and other troubles during the treatment, > she would do it again if the lyme resurfaces. > > We are trying to get more media coverage here this summer, when we > present new material to our parliament. We are getting more > coverage in the newspapers, and the old guard from the medical/ > microbiological community is now regularly writing to the > newspapers about Lyme hysteria. They seem to be getting worried, > which is a good sign. But the recent IDSA ruling that they won't > change their Lyme guidelines is a serious bummer > >> The book Cure Unknown really covers every aspect of Lyme, but its >> not exactly on the best-seller list. > > yes, one of the best Lyme books I have read. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2010 Report Share Posted May 21, 2010 Thank you ! Please keep us informed. On May 21, 2010, at 1:11 PM, Sonya Putnam wrote: > Still working on a date. Need at least 1000 people to join our FB > group & then the organizing begins. We are just over 500. The group > is called IDSA Denies Proper Treatment For Lyme Disease. > > -Sonya > Sent from my BlackBerry® smartphone with SprintSpeed > > [ ] Re: OT: ISDA >> >> >> >> >>> >>> >>> In the 80s when HIV/AIDS was identified solely with homosexual >>> activity, there was a lot of discrimination against gays in the >>> U.S., especially among evangelical Christians. Europeans have >>> been generally more tolerant of gays. >> >> I know the situation seems different; I think in EU there also was >> a lot of discrimination, but it was 'not done' do talk about that >> in public - especially in my country. I think in both regions the >> special position of gays played its part; if the first AIDS victims >> had been from another 'minority' group I doubt it would have >> attracted the same attention and money. >> >> >>> The question is how do we, the Lyme community, become more >>> visible? I think there's a lot of fear surrounding tick-borne >>> diseases, as well as a lot of ignorance about how devastating they >>> can be. And the brief news spots I've seen on TV don't really >>> address the key issues in depth. >> >> yes, that is a HUGE issue. I'm not sure if fear for creepy ticks is >> a major issue, I think it is mostly ignorance what it is about. >> Lymies are viewed pretty negatively by the general public. I have >> never heard such a thing regarding people who have chronic Q-fever >> or other chronic disease. Lymies are often portrayed by the media >> as 'people who are always tired'. In most EU countries many of them >> claim disability (in my country often for life - which is very >> strange IMHO; I think many of those claims are not legitimate). And >> the public sees the Lymies only when they feel well and not when >> they feel ill. Even my direct family has a hard time understanding >> that. >> >> We just had the first TV programme in Netherlands two weeks ago >> that had a fair presentation of some of the Lyme issues. They again >> had a patient who was 'very tired' and could not go to school for >> some months, but looked pretty normal on TV - not very convincing. >> But they also showed that in a private Lyme clinic in the south of >> Germany (far away by Dutch standards), about 10% of the patients >> were from the Netherlands. Everyone should wonder what is going on >> there. >> They also showed Dutch patients who went to the Czech republic and >> other Balkan countries for ABX treatments because those treatments >> are not possible in Netherlands (or very difficult to get). One >> patient explained that despite having to pay all the costs herself, >> and despite serious pain and other troubles during the treatment, >> she would do it again if the lyme resurfaces. >> >> We are trying to get more media coverage here this summer, when we >> present new material to our parliament. We are getting more >> coverage in the newspapers, and the old guard from the medical/ >> microbiological community is now regularly writing to the >> newspapers about Lyme hysteria. They seem to be getting worried, >> which is a good sign. But the recent IDSA ruling that they won't >> change their Lyme guidelines is a serious bummer >> >>> The book Cure Unknown really covers every aspect of Lyme, but its >>> not exactly on the best-seller list. >> >> yes, one of the best Lyme books I have read. >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2010 Report Share Posted May 21, 2010 Are you interested? Where are you located? We need to have people willing to organize in their area. I especially need people in New York for the live shows being filmed there. Sent from my BlackBerry® smartphone with SprintSpeed [ ] Re: OT: ISDA >> >> >> >> >>> >>> >>> In the 80s when HIV/AIDS was identified solely with homosexual >>> activity, there was a lot of discrimination against gays in the >>> U.S., especially among evangelical Christians. Europeans have >>> been generally more tolerant of gays. >> >> I know the situation seems different; I think in EU there also was >> a lot of discrimination, but it was 'not done' do talk about that >> in public - especially in my country. I think in both regions the >> special position of gays played its part; if the first AIDS victims >> had been from another 'minority' group I doubt it would have >> attracted the same attention and money. >> >> >>> The question is how do we, the Lyme community, become more >>> visible? I think there's a lot of fear surrounding tick-borne >>> diseases, as well as a lot of ignorance about how devastating they >>> can be. And the brief news spots I've seen on TV don't really >>> address the key issues in depth. >> >> yes, that is a HUGE issue. I'm not sure if fear for creepy ticks is >> a major issue, I think it is mostly ignorance what it is about. >> Lymies are viewed pretty negatively by the general public. I have >> never heard such a thing regarding people who have chronic Q-fever >> or other chronic disease. Lymies are often portrayed by the media >> as 'people who are always tired'. In most EU countries many of them >> claim disability (in my country often for life - which is very >> strange IMHO; I think many of those claims are not legitimate). And >> the public sees the Lymies only when they feel well and not when >> they feel ill. Even my direct family has a hard time understanding >> that. >> >> We just had the first TV programme in Netherlands two weeks ago >> that had a fair presentation of some of the Lyme issues. They again >> had a patient who was 'very tired' and could not go to school for >> some months, but looked pretty normal on TV - not very convincing. >> But they also showed that in a private Lyme clinic in the south of >> Germany (far away by Dutch standards), about 10% of the patients >> were from the Netherlands. Everyone should wonder what is going on >> there. >> They also showed Dutch patients who went to the Czech republic and >> other Balkan countries for ABX treatments because those treatments >> are not possible in Netherlands (or very difficult to get). One >> patient explained that despite having to pay all the costs herself, >> and despite serious pain and other troubles during the treatment, >> she would do it again if the lyme resurfaces. >> >> We are trying to get more media coverage here this summer, when we >> present new material to our parliament. We are getting more >> coverage in the newspapers, and the old guard from the medical/ >> microbiological community is now regularly writing to the >> newspapers about Lyme hysteria. They seem to be getting worried, >> which is a good sign. But the recent IDSA ruling that they won't >> change their Lyme guidelines is a serious bummer >> >>> The book Cure Unknown really covers every aspect of Lyme, but its >>> not exactly on the best-seller list. >> >> yes, one of the best Lyme books I have read. >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
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