Guest guest Posted April 22, 2010 Report Share Posted April 22, 2010 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 22, 2010 Report Share Posted April 22, 2010 They couldn't care less. They are in bed with the " health " insurance industry. Now there's an oxymoron for you: " Health insurance " What that industry is all about is insuring that their profit margins stay healthy, nothing else.Steve C. 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 Amen > > 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 > > 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. we have the same guidelines review going on here in Netherlands. They have some patient group participation and will report after summer. I already know the outcome: some cosmetic changes, but no real need to change anything. Our guidelines are strongly based on IDSA proposals, rest of Europe often same story Quote Link to comment Share on other sites More sharing options...
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. 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 26, 2010 Report Share Posted April 26, 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. 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 > > > 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 28, 2010 Report Share Posted April 28, 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@... I have some articles, but they are in Dutch - so I think they are of little use. And I would have to ask permission to use them, because they are going to parliament this summer; maybe they don't want to have them circulating before then. If you have specific plans, I could contact the people who arrange the media contacts here. International contacts between patient group are increasing within Europe, as we all are running into the same wall. The language problem is an issue, e.g. there is a great book for patients about Lyme disease treatment from German doc Hopf-Seidl. It is in German, but we may try to make English and Dutch versions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2010 Report Share Posted May 21, 2010 The CT attorney general is currently running for Senate and under fire for his comments about his military service so I am guessing that this issue is not his top priority. There is a group called Turn the Corner Foundation which may be able to help put something together because they do a lot of local Lyme awareness walks, etc. around the country. http://www.turnthecorner.org deb > > >> > > >> > > >> 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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