Guest guest Posted May 21, 2010 Report Share Posted May 21, 2010 I can forward information to some people in upstate, NY to see what the interest is. What is it you want to send? Thanks, On May 21, 2010, at 1:24 PM, Sonya Putnam wrote: > 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...
Guest guest Posted May 21, 2010 Report Share Posted May 21, 2010 Thx - will join and tell others! - 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 22, 2010 Report Share Posted May 22, 2010 , I'm in upstate NY, keep me in the loop, glad to help! Thanks, Clare On Fri, May 21, 2010 at 1:58 PM, Manno <amanno@...>wrote: > > > I can forward information to some people in upstate, NY to see what > the interest is. What is it you want to send? Thanks, > > > On May 21, 2010, at 1:24 PM, Sonya Putnam wrote: > > > 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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