Guest guest Posted May 22, 2010 Report Share Posted May 22, 2010 If Sonya will let us know here what the “FB” group is and how to join it, we can begin to help the needed 1000 people to join. Sonya, please help us out here. Thanks, 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 On May 22, 2010, at 6:50 AM, Clare wrote: > , 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...
Guest guest Posted May 22, 2010 Report Share Posted May 22, 2010 Oh. I am sorry. Facebook is FB!! I'm used to shortening everything. -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 22, 2010 Report Share Posted May 22, 2010 Hi Sonya, I'm not on Facebook and don't plan on it. I'd be happy to join in this effort as long as it doesn't require signing up on Facebook. How can I help, be involved with out dealing with Facebook?? Thanks, On May 22, 2010, at 4:07 PM, Sonya Putnam wrote: > Oh. I am sorry. Facebook is FB!! I'm used to shortening everything. > -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 22, 2010 Report Share Posted May 22, 2010 How about this. When we pick a date or are trying to settle on a date I will make an announcement here & then everyone that is interested, we can contact. -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 22, 2010 Report Share Posted May 22, 2010 Great. Sounds good. Thanks. On May 22, 2010, at 5:15 PM, Sonya Putnam wrote: > How about this. When we pick a date or are trying to settle on a > date I will make an announcement here & then everyone that is > interested, we can contact. > > -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 22, 2010 Report Share Posted May 22, 2010 Sonya, could you say a little more about you and your planning group are thinking of having everyone do as a protest of the guidelines? 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/ >>>>>> 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 It's still in the works. Everything is up in the air as the group grows, we will have discussions, etc as to how the group as a whole wants to proceed. Every angle will be taken into consideration. Once we have numbers, we will try to get other organizations involved as well. We want this to be the best that it can be, with the best intentions. Everyone that has had lyme touch their lives in some way, we want this to be " their " group. And everyone's input matters. Working towards a common goal. We are currently just working on numbers, numbers, numbers. Like the AIDS/HIV victims in the 80's. Maybe we can make this world wide, & not just nationwide. -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 24, 2010 Report Share Posted May 24, 2010 I'm not on a computer right now but if you scroll though messages here, I think from Saturday or Sunday yesterday someone posted a link. You can also just add me, Sonya & find it through my " info " page. -Sonya Sent from my BlackBerry® smartphone with SprintSpeed Re: [ ] Re: Joining FB group > > > What would this facebook page be about. I would probably join. > > > In a message dated 5/22/2010 6:55:30 A.M. Central Daylight Time, > amanno@... writes: > > If Sonya will let us know here what the “FB†group is and how to join > it, we can begin to help the needed 1000 people to join. Sonya, > please help us out here. Thanks, > > 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 > > Quote Link to comment Share on other sites More sharing options...
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