posted
I know you're all waiting for details so here's part one of my report. I'll keep adding more as I'm able.
First, I'm so glad I went. I drove down by myself (most of the other LymeNet people from Boston said they were too sick to go). I brought 4 signs I made last night. I used a very thick permanent marker so they could be seen from a distance. I brought sticks and a roll of clear packing tape in case we needed to hold them up high.
I arrived around 11:45. Some people wearing Lyme green parked next to me in the garage and I walked over with them.
There was a large tent with chairs set up in it facing the steps the speakers would later speak from. At the back of the tent there was a long table with sign in sheets, petitions and lots of information about Lyme. I made myself a HATS BOSTON name tag and put it on my hat. I wore a large very bright Lyme Green silk scarf, Lyme green ribbons on my big hat and a lyme green shirt. Almost everyone at the Rally was wearing Lyme Green!
There were several cameras filming behing the tent. I thought this would be a good place to put my signs.
I headed toward the news cameras with my 4 signs and within seconds the reporter asked to talk to me. We talked for quite a while. Several people gathered round to listen. I hope I did OK. I do remember getting in a lot of important points. I told some of my story and the reporter seemed genuinely interested in Lyme & the rally.
I told her how my PCP refused to give me antibiotics after I was bit and made me wait a month to have a test. 3 1/2 weeks later, half of my face was paralyzed, my ears and jaw were in excruciating pain, I couldn't think clearly.... but I never had the bullseye rash, joint pain or fever. Now I'm on my 22nd month of treatment.
We talked about the importance of early treatment. She asked "if you had just one thing to tell people, what would it be"? I said "If you are bit by a tick you need immediate treatment. This is your only chance to cure Lyme quickly. You don't have time to think about it, to research alternative therapies, to wait and see what happens. You simply need to get antibiotics and start taking them right away before the Lyme starts multiplying and taking over your body. If the first Doctor won't give you antibiotics, go to another. If they tell you Lyme is rare insist on treatment because in parts of New England 70-80% of ticks are infected. Do whatever you need to do to keep from ending up like me."
I hope that gets on the news.
They filmed my signs. They were all double sided so I'm not sure which sides they got. My signs said something like:
LONG TERM ANTIBIOTICS ARE SAVING MY LIFE. SAVE MY LLMD.
LYME IN MA, EPIDEMIC. MANY TOO SICK TO BE HERE.
PLEASE PROTECT MY LYME DOCTOR, MY HERO.
BOSTON MA, SO MANY PATIENTS, SO FEW LYME DOCTORS.
IF LYME IS SO RARE, HOW COME MY FRIENDS HAVE IT TOO.
I made a really big sign I propped up near the entrance. It said: I WAS BIT BY A TICK JULY 2004. MY PCP REFUSED TREATMENT. RESULT: I covered the rest of the board with the names of the various symptoms I've had: stabbing pains, numbness, paralysis, ear pain, extreme fatigue, can't sleep, brain not working, sciatica, bones hurt... I saw many people reading this board.
People began to move the signs toward the stage so the cameras would see them while filming the speakers. Several people from LymeNet were helping. I got to meet: Tincup (yes she had a duck on her head before the speakers started) Carol B. Optimistick, ShazDancer, DJP, Lymemomtoo, Sizzle, Wild Condor and a few others. This was the first time I'd met a LymeNet person in real life! It felt really good to be with them, people I already kind of knew.
The crowd pretty much filled the tent. Actually there were some empty seats but this seemed to be to accomodate all the stuff people brought. There were many people sitting outside the tent and even as it started to rain they didn't try to squeeze into the tent. I suppose getting wet is very minor compared to the things we deal with living with Lyme. The suggestions to bring chairs, towels etc. were really good ones. It started to rain about half way through the presentations but I didn't notice anyone leaving. As Tincup promised: after getting wet, we got dry again.
OK I'm going to take a break now and then will start reporting on the presentations which IMO were superb.
hatsnscarfs
P.S. I got lost on my way home. Not in Hartford but 10 minutes from my house!
[ 03. June 2006, 10:59 AM: Message edited by: hatsnscarfs ]
Posts: 956 | From MA | Registered: Nov 2004
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I'm sorry I didn't get to meet more people one-on-one.
WE were two red-heads -- I had on a kind of straw hat, and my daughter had pig tails -- and she went up to give Doc J a kiss, but got scooped up by Pat Smith and copped a squat on her lap for a while -- some of you may have seen her.
I was sitting to the left of the tent, and one of our crew got very severe vertigo and paralizarion (this gal is a major activist around these parts, really wonderful - and she worked hard to get folks down there - bless her heart!!), so we had to leave early to get her back - stayed through most of the kids' talks.
All the speakers were wonderful - and I'd say there were about 200 people there --------
Mo
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
IF LYME IS SO RARE, HOW COME MY FRIENDS HAVE IT TOO.
Thats is a Great sign! Its not only a good sign its a great question. I know so many people in these parts who definitely have or had lyme.
Sadly enough I know someone eslse disabled by lyme too.
How did you manage to carry 4 signs I think after about 5 minutes or so 1 would be to much for me.
Here's hoping next time I will be well enough to make the trip and if not then heres hoping to next time its real close. heh heh
posted
Cool, how many people showed? Did Doctor P from CT come?
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shazdancer
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Member # 1436
posted
It was very tough getting son "Jake" to wake up that morning, as his antibiotics were increased recently, and he is herxing again. He was draggy for much of the day, but he was in good spirits, and he did GREAT reading his story! I was really proud of him, especially given the circumstances.
Sorry, I usually take notes at these things, but this time, just wanted to soak up the experience (so to speak!). Some impressions...
A tent was set up in advance, which was definitely necessary, as it rained much of the time. A row of tables at one end offered handouts, videos, Lyme Times could be had, etc., and I left about 10 Lyme pins out, money to go to Dr. Jones, and they sold in about 10 minutes!
People were there from Fl, MA, RI, NH, NJ, MD, and CA, and other states (who am I missing?), and there were posters naming other states who wanted their voices heard. Over 200 people were in attendance.
Wonderful meeting so many Lymenetters! If I missed you, I was easy to spot -- the nutjob with the Lyme green boa in my hair. Mo, your daughter was adorable on Pat's lap!
BL acted as MC. She works for E! Entertainment and was interviewed for the Today show a year ago. She'd had a tough case of Lyme paralysis, and was eventually "jump started" toward better health with a month of hyperbaric oxygen treatments.
She mentioned that her parents had the financial means to do anything to get her well (and spent over $250,000 doing it), but money means nothing if the research isn't there to give direction, and if the doctors aren't there to administer proper treatment. She got infected in the same CT town Jake and I did.
Dr. B spoke about the complexities of diagnosing Lyme, and how the testing is so flawed. He said that the reason some labs (like Quest) don't report the results of the Western Blot in more detail (which would help in diagnosis) is because they must go by the directions on the test kit they are using.
Other labs that don't use that particular kit can report more thoroughly. He mentioned that DNA tests are admissible as evidence in court, yet not accepted for Lyme diagnosis. He repeatedly called the discrepancy between IDSA and competent care "crap."
PS of the LDA spoke poignantly about her own daughter's case. I hadn't heard the details of her story before. Her daughter's symptoms had worsened to where she was having all-day seizures, yet they still no diagnosis. She finally curled up in a fetal position one day, and they thought she would die.
Her daughter was finally treated for Lyme, and as an adult she now works for a peer-reviewed medical journal. PS had vowed never to let another family go through advocating for a Lyme patient alone, as she'd done. She also said that parents are never doubted if they say their children have cancer or diabetes, compensations are willingly made, but if you say Lyme, educators are suspicious and reluctant.
Social worker SB spoke about the importance of having educational support for children with Lyme, and how hard it can be to get that at this time, since so many doubt that severe or chronic Lyme even exist.
She mentioned that long-term antibiotics are used to treat acne and TB and other illnesses, and are put into cattle feed when the cattle aren't even sick, and no one questions that use, but the Infectious Disease Society complains that docs who use long-term antibiotics on sick patients may create resistant bacterial strains.
CT Attorney General Blumenthal spoke about the need to return to case reporting by labs, not doctors, and cited statistics that showed the numbers for CT plummeted when the labs no longer had to report.
He also mentioned that lower numbers means less money is allocated from the federal government for education and research. He is advocating for a digital method to report confirmed cases, making it easier for docs and labs to comply.
Dr. Jones spoke only briefly to say thank you and to encourage continued support over his medical board case. He said he is fighting the medical board charges because he feels a sense of mission to continue to help children sick with Lyme disease. He also encouraged everyone to attend the next hearing, which is June 22.
The kids spoke last. The young children were sweet and spunky, and the teens, who were more literate and introspective, were chilling and heart-wrenching, to me. Many of them have lost much of their childhoods to this disease.
Some expressed thankfulness that they weren't worse off, or had gained insight into what was important in life. Others mentioned that they were so used to being ill that they didn't realize what was missing until they began to get well.
Jake spoke next to last. We were both surprised at how deep his voice is sounding when he projects!
He spoke about recovering so much that he was able to participate in the Ya-Ya Walk Against Lyme, and walked 46 miles in April. The audience went "whoa!" because most of them were either patients or parents of sick kids, and they know how debilitating the disease is.
Many stopped to thank him afterward, or share bits of their own stories.
My deepest thanks to organizers MS, KG, and JR, and all those who helped make this event a success. You guys are awesome!
Regards, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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posted
Hi Hats, Sorry I didn't meet you there. I came with my two kids (took them out of school to get educated about lyme)
I was incredibly impressed by all the speakers...especially Dr. B. He talked about what crap it is that universites who are supposed to write/update guidelines and be on the cutting edge of medicine allow outdated guidelines to exist...he said shame on you.
Says they perpetuate a culture of ignorance and fear. (We all know which university group...)
He talked about what crap it is that 77 mill is spent on 2500 cases of west nile/year.. while 32 mill on lyme with over 200,000 cases.
He said shame on the IDSA-- who despite extensive studies that show lyme cannot be treated with cookie cutter treatment protocols --still clings to post lyme syndrome. With insurance companies happily behind that belief.
He is angry that the fastest growing infectious disease in the country is not being studied.
Blumenthol spoke powerfully about the need for major changes. He applauded all the people who came to give lyme a voice--feels it is an outrage what is happening with lyme misdiagnosis and treatment especially in CT.
He said the biggest offender is the department of Public health--in the age of technology how can we not have an accurate reporting system...he called for an accurate electronic online reporting system.
Dr Jones made me cry with his plea for help and the fact that he is called to help his patients.
The children made me cry with their desperate stories we all know so well. After each spoke (maybe two dozen) they presented Dr. Jones with flowers and a hug--very powerful!
The MC Brook Landau was beautiful, articulate and passionate about her mission. She says that she is the face of lyme disease. May look good on the outside but devasted within.
Ten years of illness, half million out of pocket costs. She is from one of the wealthiest communities in the country but said that you could have all the money in the world and suffer alone due to ignorance about this disease.
Pat Smith told of her desperate search for diagnosis for her daughter who would be rattled with seizures and unable to recognize her parents right beside her. How she had to fight the doctor for a lyme test--and once it was drawn, he wouldn't call her back with the results.
Finally, the test was positive but in his intellectual judgement, lyme was not causing her daughters symptoms.
So here I am this morning in my CT home--watching the news on all stations, reading the papers---guess what? I saw coverage of the cancer walk at the capitol, I saw coverage of the MS race...NOTHING WAS COVERED ON OUR LOCAL CT NEWS CHANNELS!!
I personlly contacted the hartford and new haven stations to alert them to the rally---did they report on it --- NO.
I am outraged by this. Need to take a break now cause I am too mad.
-------------------- We are spiritual beings on a human journey...
posted
I am so enjoying all your detailed notes about the content of the rally's speakers!
I'm copying my comments from general to here... posted 03-06-2006 02:25 AM ------ Hats, what I & many others on this board would love to see is ONE POST from ALL ATTENDEES without each one of you having your own thread.
There are a lot of new folks; I've been keeping track when I sign in twice a day & 4-7 newbies daily. These folks medical questions have not been answered or gotten thrown over to the 2nd screen due to all the rally topics.
Could you or one of yu contact the moderators and have the TOP MEDICAL post be FEEDBACK FROM RALLY ATTENDEES ... no separate threads please.
Then everyone could gather in ONE SPOT FOR ONE THREAD. It has created friction on the board.
I brought up this possible solution of the ONE THREAD for ALL TO GIVE FEEDBACK ON since this is really an "activism" post.
I asked John, lostcityangel ?, to copy/paste ALL the rally posts he notices and send a COMPLETE copy of all links to the moderators of medical asking them to move all posts to activism section. now.
Again one board for ALL COMMENTS without duplicate posts taking place here on general too.
I'm suggesting this with all due respect to you & all rally attendees. Each of you has so much to tell us, and are grateful yu were able to go and sound off for US ALL.
Hats, what do you think about this suggestion? peace...
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Michelle M
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posted
Thanks to all of our attendees and double-thanks for the reports. Much appreciated.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Betty, In response to your comments, and because others have added their own reports to it, I have changed the title of this post to Rally Report From Attendees.I hope others will continue to add their reports to it.
Betty, I agree a thread at the top would be good for this. I'll leave contacting the moderators to you since I'm going to use my energy to write more reports. I think you know the process better than I do.
Last night I thought about where to put this post and I decided to put it in Medical because it will contain more and more medical information as we continue to write about what the speakers said. Additionally it needs to be read by old & new people alike. Most of the new people are in Medical. I don't want to muck up the Rally reports with further discussion about categories. We can do that in an independent thread unrelated to the rally.
Last night I also put a copy in General because people were hungry for info from the rally and there was little info coming in.
The underlying message we got from virtually every speaker is: very little has changed over the last 15 years and it will only change if we DEMAND it. We need to become increasingly vocal, visible and active. This rally is the start. We need to have them all over the country. The gatherings need to get bigger & more frequent. We all need to learn from this one. The organizers did a great job and it is a start. IMO we need more media & participants at future rallies. We need to get our friends, neighbors, relatives, everyone out. Patients are too sick to show up in great numbers. I'll start a Rally Ideas thread in General or perhaps Activism.
I'm not aware I'm causing friction on this board, perhaps because I've been asleep for the last 11 hours, exhausted from driving. If I've offended anyone, please accept my apology. Feel free to send me a PM.
Shaz, your son did an incredible job. Please send him my thanks & congratulations. It would be great to post/publish a transcript of his speech. In addition to the States you mentioned, there were people from NY, PA, OR, CA. There were big HANDS OFF my LYME DOCTOR signs from California, Oregon, Midwest, Pennsylvania and of course CT, all displayed in front of the stage.
humanbeing, thanks for the excellent report on the speakers. I could not have said it better. I'll search my notes for additional info.
Mo, sorry we didn't get to meet.
Wild Condor was up front during the rally. In another post she reported that she counted 200 people there. Seems about right.
hatsnscarfs
Posts: 956 | From MA | Registered: Nov 2004
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kelmo
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Member # 8797
posted
THANK YOU from the West Side
Posts: 2903 | From AZ | Registered: Feb 2006
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Thanks for the 411 everyone.
Any sign of Daryl Hall, Amy Tan, or other notables who've have Lyme? We need a brand name high profile celeb to champion this cause & give it some Lymelight.
[ 03. June 2006, 01:33 PM: Message edited by: Foggy ]
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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posted
I think the people in CT should bombard the media with demands for coverage of the lyme rally. Call 'em up, ask em where is the story on Lyme?!!!Don't let them get away with ignoring important things to state residents.
I don't understand why a medical conference or free talk by a lyme doc routinely turns out a larger number than ever appear at rallies or anything political. Think lyme docs might consider requiring some evidence of activism from patients. Most people can do something, even when sick, more when they get effective treatment. Looks like people frequently say I am too sick to participate, will do it when better. But when they get better, they disappear from the lyme scene. Not saying everyone does this, but enough just ignore the need for activism that it hinders our future. There is strength in numbers, and we need bigger numbers of activists. And the squabbling needs to stop.
Recently there was an AIDS special by Frontline on PBS. Do you realize that those activists shut down the NY Stock Exchange with a protest?
Lymies have got to get better organized and more involved. Our docs have been saying that for years. People who have a possible connection to someone powerful who could help us don't act on this information. Rich people with lyme don't support fundraising for Columbia. Heck, for what some people spend on fuel for their private jets or yachts, we could get a lot of research done.
Sorry for the rant. I am just outraged that we are still in the same place after all this time. I know I am mostly preaching to the choir.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I always saw it as an unwritten requirement that was understood.
Each one lucky enough to be diagnosed/treated for chronic Lyme automatically holds the responsibility/obligation to represent thousands of others who will not be so fortunate. It is also a spirit of empowerment that can help us get through the ordeal.
In any event, I like the idea of getting on the media to put out the story of the rally.
That's something we all can do right now from our homes to make the most of the wonderful rally and speeches that took place in CT yesterday. Blumenthol's speech should get more play - backed up by all the other speaker's messages, and a call for the public to protect our Doctors.
Some are talking about this being 'the first of many' rally's.. please understand the importance of the here and now for our LLMD's and ourselves. We won't have much to rally about if we loose more Docs.
Anyone have info on exactly who from the media was there?
Mo
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
Mo's on the right track. Anyone know what news stations were there so that we can contact them.
I live in Florida and was hoping to see it on the national news. Unfortunately, there was nada.
It's not because no one cares. It's because most of the media, well, the nation period, is ignorant when it comes to Lyme disease.
This is why it's imperative for us to contact the media that showed up at the rally. We need to express our interest in the info that they gathered. This in turn will educate a mass of people who tune into these stations, even if it's just local.
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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WildCondor
Unregistered
posted
Thanks for putting these reports all in one place Hats! Very cool! .................................................
Well, here's my short summary! The weather held up for the most part, just a few showers. The crowd was a good size, maybe 150? Dr. B gave an excellent talk and included some new information about emerging co-infections. I loved the parts about prisoners and DNA and the dirty ticks! Dr. J thanked the crowd, and we got to see many of his young patients take the podium and thank him for saving their lives, very touching.
Attorney General Blumenthal was great too, he lifted our spirits and assured us that our voices will be answered. He talked about how serious under reporting is. Brooke did a great job, Sandy was excellent, and Pat was amazing as always! Tears were flowing strong. Great presentations and very informative and inspirational speakers. Wonderful to meet so many of you for the first time, and catch up with old friends! You all know who you are!
Wonderful to talk with Dr. Jones and thank him personally. What an amazing, loving man he is. The children were champions, and so brave to stand up there and tell their stories. It is heartwarming to see so much love and compassion within the Lyme community. Thank you all
The media was there filming and reporting our stories. Many of us gave the media our written stories to take back with them.
I made 5 Lyme green poster boards -WE will not go away -Hands off our doctors -My Lyme Doctor Saved My Life -Lyme Doctors deserve freedom to treat long term -Lyme Disease National Health Crisis
Saw some really great signs, and the hands were great! Some folks made beautiful artistic posters esp. the tick artwork!
I donated 100 of my Lyme bracelets to Dr. Jones fund, and put them all over the tables, they were all gone when the rally ended so I hope everybody got one! We must keep the momentum going! Today was great, but we must continue to tell our stories and fight for our rights as Lyme patients. Nobody is going to do it for us. Each of us must become activists, and one by one, we can impact the nation! Thank you to all the organizers, and speakers and to all of us who made the supreme effort!
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
I have commented a little elsewhere but will add some here..First it was fantastic and the organizers need to be congratulated..
I do not know about why the story did not get more coverage..3 of us saw it in our hotel rooms a little after 10pm on Fox. So at least they did a segment..
I think there were 3 tv crews there along with the lyme documentary crew.
It was also neat to be able to put a couple of faces with names from here..Sorry I missed meeting others..But I was busy trying to keep my costume on...I finally gave up since I figured I was blocking an important view.
But again...it was great!!!!!!!!!luymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Anyone from the area have an email address for one of the networks that were present so we can contact them.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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Not a direct email but a form, same purpose! Everybody write!
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valymemom
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Member # 7076
posted
Just sent an email. Thanks for the NBC website!
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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Carol B
Unregistered
posted
My hat had an American Flag on it-which I drew ticks crawling all over. Then I wrote "Save the Nation,Free our LLMDs from Prosectuion"
Glad to see LymeMomtoo has made it home safely-I got a little worried last night when we headed into the bar at Margarita's and she handed me her car keys! She felt it was her duty to try their "Lime in a Coconut" beverages !
I had to sit next to Tincup's FEET the whole way home on the lyme train. BARE FEET no less. She thinks I covered them with a small blanket so her toes wouldn't get cold-yeah right!
I'll write more later-after my fingers heal-Tincup was afraid I would tell too many stories on her-so she broke my fingers!!!!! She doesn't know I recorded EVERYTHING in my notebook just in case of such an occurance.
Wait until I tell you about the cow bells-boy do we have some stuff on her!!!
posted
I have started a Topic in General: "Rally Media Wake Up Call & Email", to consolidate info about news coverage or lack thereof and to provide contact info so we can demand better coverage. Please add any media contact info to that thread and contact the media who are listed. hats
Posts: 956 | From MA | Registered: Nov 2004
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posted
Here are the three CT TV news stations...maybe next time we have a rally, we will start the rally to these stations first, making sure they get their buts there and then report the story...Also, we could do same for newspapers.
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
C in B.. Glad to see the lyme train has pulled in safely.
Me thinks that Tinny and I may need to dig out the duck tape soon...lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
quote:Originally posted by lou: I think the people in CT should bombard the media with demands for coverage of the lyme rally. Call 'em up, ask em where is the story on Lyme?!!!Don't let them get away with ignoring important things to state residents.
I don't understand why a medical conference or free talk by a lyme doc routinely turns out a larger number than ever appear at rallies or anything political. Think lyme docs might consider requiring some evidence of activism from patients. Most people can do something, even when sick, more when they get effective treatment. Looks like people frequently say I am too sick to participate, will do it when better. But when they get better, they disappear from the lyme scene. Not saying everyone does this, but enough just ignore the need for activism that it hinders our future. There is strength in numbers, and we need bigger numbers of activists. And the squabbling needs to stop.
Recently there was an AIDS special by Frontline on PBS. Do you realize that those activists shut down the NY Stock Exchange with a protest?
Lymies have got to get better organized and more involved. Our docs have been saying that for years. People who have a possible connection to someone powerful who could help us don't act on this information. Rich people with lyme don't support fundraising for Columbia. Sorry for the rant. I am just outraged that we are still in the same place after all this time. I know I am mostly preaching to the choir.
Lou, I couldn't agree more. There are several state chapters out there which is fine. However, somehow we need to coordinate all of these diverse state chapters into one entity. Speak with one voice, strength in numbers.
Whether we all come under the banner of the LDA or any group, it really doesn't matter. When legislation is pending, an LLMD is getting hauled in front of a board, etc., ALL of the divergent groups need to speak with one voice.
Either we hang together or we hang separately. If there's support for it, I'm willing to start a thread, get a listing of all the group leaders and let's bring this together. Imagine, if Doc J had 5,000 voices of support behind him rather than 500, or the other Doctor J ?
Secondly, we must continue to try to add new people to the groups. Though they may be too ill to attend meetings/rallies, etc., they can still e-mail or make a phone call. If folks are on board with this I'm willing to get the ball rolling.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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Carol B
Unregistered
posted
LMT-you are repeating yourself ! wouldn't have anything to do with...NO please not the duck tape-save it for the ducks !
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posted
I'm going through my notes. This info from Dr B. jumps out at me, especially today as we are not seeing enough media coverage:
Dr. B. said in order to bring change we: Need public outcry Need to give elected officials guidance Need to make sure they actually make the changes Need to support ILADS Need to support Dr. J. and other LLMDs
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I also saw the PBS special on AIDS; in addition, I was part of the national media at the time AIDS finally started getting the media attention it deserved.
One thing I recall is that it took a LONG time for AIDS to get coverage. By the time the press got interested, rallies typically had a thousand or more people. In addition, the death toll was growing and stars like Rock Hudson were coming into the forefront. Many people were already casualties of the disease.
Finally, it was the human stories that caught media attention. The first national AIDS piece was in People Magazine -- a 14-page spread called 24 Hours in AIDS America. As a correspondent at the time, I followed two people in my city through typical days -- as did other reporters in about a dozen different cities. The result was a tender, accurate and horrible portrait of that disease at the time.
The cover picture for that issue was Ryan White. That was the first of several cover stories People would have about Ryan.
Interestingly, because People is a weekly publication, there isn't much time between the time articles are submitted and they're run. In that article, as I recall, editors had to write an addendum: four of the people who were written about died between reporting and publication.
That story was written in 1986; I think the first NY Times mention of AIDS was in 1981, if I recall. I was still writing about AIDS well into the late-1990s, as the disease threatened seniors and other groups that previously hadn't been at-risk.
It just takes a lot of momentum to get the mainstream press involved. On the positive front, once a story gets attention, it tends to really catch fire. Papers start competing with networks and radio for the newest angle.
I'm not sure why this hasn't gotten traction yet, but I am sure it's just a matter of time.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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bettyg
Unregistered
posted
Hats, thanks for expanding your topic title!
I just emailed PM to Jenifer asking her to move your post as a FEATURE to the top of medical in NO. ONE position and in RED to stand out so other rally attendees will see that first.
I see Lou B is back on board, but both his PM and home email have been removed.
Enjoyed reading more of your posts. Thanks everyone for your efforts in typing up your reports so we could enjoy.
TV coverage there, do you think if you folks got a copy of footable that perhaps you could contact MSNBC, RITA COSBY? She does a heck of a good job on so many subjects, and it comes from her heart. She covered Natalie, Georgia for 12 months having mom/investigator/Aruba on weekly updates.
I'll email that addy too.
Cave, thanks for the quotes from attorney general!
np40, i totally agree you; I'm 100% behind your good suggestions! Count me in.
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bettyg
Unregistered
posted
WC, I just emailed the staton now. Thanks. Betty
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bettyg
Unregistered
posted
Disappointed ... my email to tv station came back. What "section of people" did you send this too?
There was 10+ areas; I chose HEALTH section. Returned saying this person no longer worked there.
I want to resend my comments but which section allowed your emil to be sent? Thanks for helping me out.
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
I found the Connecticut Fox News video of the event. It isn't easy to find. Go HERE , then click on "Rare Illness" or any of the other videos.
(Could alternating hemiplegia be congenital Lyme?)
Then scroll down the list of videos on the left until you get to Lyme Disease Rally. We got 2 minutes and 21 seconds' worth.
Regards, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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PS -- check that, it's the Danbury News-Times article, I was linked to it from the Courant.
[ 04. June 2006, 02:19 PM: Message edited by: shazdancer ]
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
First..
Don't believe a word ANYONE says! I did NOT!! HA!
We all RACED to see who would get home first to post rally info and tell stories on each other.. and with me being the furthest away.. and slow as molasses to boot... I lost!
Now.. about the RALLY...
COWABUNGA!
It was worth the long trip. For sure.
Everyone above did a wonderful job reporting back to you guys all the details... so I won't repeat what went on.
And I am very tuckered out from the Amtrak shake, rattle and roll Lyme train ride ... so please forgive me for making this a "normal" size post rather than a long drawn out Tincup "usual".
For those who went to the RALLY and for those who didn't...
PLEASE write to the following person and comment on the rally.. and/or the articles they published (thanks). Gotta let folks know we appreciate them when they work to assist us.
Under 300 words and... must include- Full name, address and daytime phone number
It was so nice to meet and see all our old and new Lyme friends from all over the darn place.
Special thanks to all who organized the wonderful Rally... and those who came to speak... and most of all.. to those who took time and showed up to support our cause and our doctors.
All us "hics" enjoyed the naughh-thern hospitality and we thank you kindly!
Special thanks also to my Maryland Lyme friends.. Carol B and Lymemomtoo (and yes.. Ms. Fruitcake too). They were so very kind and helpful getting me there.. and keeping me as comfortable as possible. I do appreciate it.
posted
I'd like to add my thanks to everyone who attended and otherwise contributed to the success of the rally.
Beyond the important presentations, I thought that the organizers did a really fine job and that the signs that were brought very effective and well-placed. Thanks for all the thoughtful touches for Lyme patients such as the green balloons clearly marking the path to the site, information tables, and the tent and chairs.
Onward.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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bettyg
Unregistered
posted
Up...I'll come back later this morning to read the links and resend my email again.
it's getting to be "Betty bye time...beddy bye"!
Been thoroughly enjoying all your posts; will go listen to the news cast later too! Thanks for posting these vital links for those of us who were unable to go.
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posted
Lyme on TV Fox61 Hartford This Sunday 8AM. I'm not sure if it is about the rally or general Lyme info.
Last week I emailed Fox61 in Hartford about the lack of Rally Coverage. I received this email today: _________________________________________________ You might be interested to know that Lyme Disease is one of the featured topics on this week's edition of "Beyond the Headlines"
http:// web page Linda Fongemy WTIC/WTXX Web Producer __________________________________________________
I sent an email back thanking her for letting me know and also encouraging more Lyme coverage.
Fongemy, Linda
The show is at 8:00AM Sunday. Please send feedback/corrections/thank yous etc.
hats --------------------------------------------------------------------------------
Posts: 956 | From MA | Registered: Nov 2004
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and copped a squat on her lap for a while -- some of you may have seen her.![[Eek!]](eek.gif)
I think after about 5 minutes or so 1 would be to much for me.
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