Guest guest Posted November 9, 1999 Report Share Posted November 9, 1999 Hi Ellen, Just wanted to thank you and Marleen and all the others who made the trip on our behalf....where is Vicki? Hope she is OK. I for one, am looking forward to more posts about the event, and ideas for our next bout with the opposing contenders. BTW, what is on for the 15th???? Could someone post exact instructions for those of us a little slow on the uptake! Hugs, Marta NJ >From: ellenlu@... (Ellen Lubarsky) > >Hi folks. >Anyone remember me? I am finally back on the Internet after our >exciting event in Bethesda. >I don't know how many of you who went are still recuperating from the >event, but I want to thank all of you for your terrific spirit amd >heart. > >Also , thanks to everyone in the Lyme community who supported us. We >knew you were with us, and that gave us the energy we needed to pull >this off. I could not believe the number of posts that went into the >Boston Herald guestbook in response to Lasalandra's article. >Maybe we can parlay that response in to more newspaper coverage. >If you haven't written to the Herald yet, it would be a good idea to get >your comments in before the thread is replaced by another article. I t >probably doesn't even matter what you write,as long as you let them >know you are yet another chronic Lymie , that so called " rare " >condition. >http://www.bostonherald.com/bostonherald/health/lyme11031999.htm > >POWER TO THE TIRED, ACHEY, ENCEPHALOPATHIC PEOPLE! >(Perhaps not ferocious enough, but it has a certain ring to it, don't >you think). >Ellen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 1999 Report Share Posted November 9, 1999 Ellen, It's nice to have you back. I for one am still recovering...but it was well worth it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 1999 Report Share Posted November 9, 1999 Hi Ellen and Marta, I'm trying to catch up with email and just started herxing (back on Doxy a few days ago). But I'm here, and will be ready on the 15th to email. Talk to everyone soon - trying to hang in there, feeling very lousy, but I know with the anbx's at least I have a chance to have cycles again, and therefore won't feel lousy all of the time! Can't wait to feel " almost " normal. Talk to everyone soon. Vicki p.s. Ellen it was great to meet you, wish we all could get together again in other circumstances. Re: [ ] Steere protest >From: " J & M McCoy " <mlmccoy@...> > >Hi Ellen, > Just wanted to thank you and Marleen and all the others who made the trip >on our behalf....where is Vicki? Hope she is OK. I for one, am looking >forward to more posts about the event, and ideas for our next bout with the >opposing contenders. BTW, what is on for the 15th???? Could someone post >exact instructions for those of us a little slow on the uptake! >Hugs, >Marta NJ > > >>From: ellenlu@... (Ellen Lubarsky) >> >>Hi folks. >>Anyone remember me? I am finally back on the Internet after our >>exciting event in Bethesda. >>I don't know how many of you who went are still recuperating from the >>event, but I want to thank all of you for your terrific spirit amd >>heart. >> >>Also , thanks to everyone in the Lyme community who supported us. We >>knew you were with us, and that gave us the energy we needed to pull >>this off. I could not believe the number of posts that went into the >>Boston Herald guestbook in response to Lasalandra's article. >>Maybe we can parlay that response in to more newspaper coverage. >>If you haven't written to the Herald yet, it would be a good idea to get >>your comments in before the thread is replaced by another article. I t >>probably doesn't even matter what you write,as long as you let them >>know you are yet another chronic Lymie , that so called " rare " >>condition. >>http://www.bostonherald.com/bostonherald/health/lyme11031999.htm >> >>POWER TO THE TIRED, ACHEY, ENCEPHALOPATHIC PEOPLE! >>(Perhaps not ferocious enough, but it has a certain ring to it, don't >>you think). >>Ellen >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2000 Report Share Posted May 29, 2000 Dear lymies, i want to say 'thank you all' who are willing and able to go to New York ! And thank you all who are there in spirit. i hope this will be a significant turning point and eye opener to the public and medical community at large, including the CDC,NIH, AMA and ADA. best to all, cherlyme Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2000 Report Share Posted May 29, 2000 Thanks so much to all of you who are too sick to come and have sent me your names to be posted at the protest. I can't believe the number of responses I got from Ohio. Either you have one powerful support group out there or one terrible epidemic. THe total number of names since last night must be over 200 -from across the country and some from Europe. With people at the protest displaying the many hundreds of names we will ultimately have, we will be showing the world how widespread and disabling chronic Lyme disease is. THere was some concern expressed that people would misunderstand and think that it is not important to show up as long as their name is represented. I have to say that this does not seem to have happened. The e-mails I got were from people who are pretty sick and pretty far away. People who are able to move seem to be coming from as far away as California. At any rate, let me re-emphasize: If it is humanly possible to get to the protest, please come. If you have ANYONE you can bring with you or send in your place to represent you if you are too sick, please have them come. This means this is the time to call all those people who said they wished there was something they could do for you. This protest is coming at an extremely strategic time for us. The New York Times article has set the stage for it, and the recent upsurge in negative publicity about LYMErix has further tainted Steere and the other bad guys. We are currently more interesting to the press, so let's try to get everyone there who is well enough to be there. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2000 Report Share Posted May 30, 2000 Ellen-- When you mentioned the response from Ohio--that we either have an epidemic or one powerful support group---I believe we have both. THe work of Ann Hirschberg and the GReater CLeveland Area Lyme Support Group cannot be underestimated. This is an absolutely wonderful group of people with Lyme that are more than ready to help those with Lyme. If not for their support, I do not know if I would have had the courage during the absolute worst times to keep fighting!!! Thank you for all of your help and representing those of us who cannot possiblely be there. (I still have a difficult time finding my way in areas that I have lived in all my life, out of my area I become panicked and disoriented). Luckily, there are many with Lyme who can function well enough to be there. Just know that we all wish we could be there and we are definitely there in spirit!!! Rhonna ellenlu@... wrote: > Thanks so much to all of you who are too sick to come and have sent me > your names to be posted at the protest. I can't believe the number of > responses I got from Ohio. Either you have one powerful support group > out there or one terrible epidemic. > > THe total number of names since last night must be over 200 -from across > the country and some from Europe. With people at the protest displaying > the many hundreds of names we will ultimately have, we will be showing > the world how widespread and disabling chronic Lyme disease is. > > THere was some concern expressed that people would misunderstand and > think that it is not important to show up as long as their name is > represented. I have to say that this does not seem to have happened. > The e-mails I got were from people who are pretty sick and pretty far > away. People who are able to move seem to be coming from as far away as > California. > > At any rate, let me re-emphasize: If it is humanly possible to get to > the protest, please come. If you have ANYONE you can bring with you or > send in your place to represent you if you are too sick, please have > them come. This means this is the time to call all those people who > said they wished there was something they could do for you. > > This protest is coming at an extremely strategic time for us. The New > York Times article has set the stage for it, and the recent upsurge in > negative publicity about LYMErix has further tainted Steere and the > other bad guys. We are currently more interesting to the press, so > let's try to get everyone there who is well enough to be there. > Ellen > > > ------------------------------------------------------------------------ > Old school buds here: > 1/4057/8/_/484634/_/959649074/ > ------------------------------------------------------------------------ > > Many thanks to our founder and friend, Marta McCoy, for making what it is today. > > Easy Reference: > Send a blank email message to: > > -Subscribeegroups - Subscribe to the list through email > -Unsubscribeegroups - Unsubscribe from the list > -Digestegroups - Switch your subscription to a digest format > -Normalegroups - Switch your subscription to normal > > Please send messages not related to Lyme disease to -Offtopicegroups > > Archives can be accessed at lyme-aid > > Please visit the chat room at chat/lyme-aid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2000 Report Share Posted May 31, 2000 Dear Ellen, What are you doing with the names? I am coming, and I know several people with Lyme who can't come. They're not on the internet. I bought 5 lime green poster papers to make extra signs as you asked. Should I put one name with years ill on each poster? What about the man up the block who died from LD? If I get his son's permission, does his name go on one poster? I guess what I'm asking is if we are to be brief, can we put more than one name on each poster. Eileen Quote Link to comment Share on other sites More sharing options...
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