Planowane Demonstracje na piatek w Hartford (USA)

[artur737]

Jedna z wiekszych, o ile nie najwieksza dotad demonstracja uliczna 'o godne leczenie boreliozy' odbedzie sie w najblizszy piatek 2 czerwca w Hartford, stan Connecticut. Spodziewane jest uczestnictwo Dr.Josepha Burrascano oraz setek uczestnikow - pacjentow z borelioza z terenu calego USA i moze nawet gosci z Kanady.

Czyli bedzie tak jak kiedys za poczatkow AIDS.

[michal056]

Zazdroszczę amerykanom spontanicznosci,i determinacji.Tylko oni mogą coś tutaj
zmienic.

[artur737]

Przypomnij sobie kto obalil komunizm.

[74beata]

MOżę zróbmy też taką manifestację w Warszawie na Wiejskiej.
A propo sanepidu do mnie nikt się nie zgłosił i chwała Bogu bo nie mam siły na
te pierdoły niech zaczna leczyć a nie pisać papierki.

[artur737]

Beda uruchomione specjalne pociagi dowazace demonstrantow.

[artur737]

Jeszcze wklejam tresc ulotki informacyjnej:

TIME TO TAKE A STAND
L Y M E R I G H T S R A L L Y
FRIDAY, JUNE 2ND
1 - 3 PM
STATE CAPITOL BUILDING ~ HARTFORD, CT
SUPPORT DR. JONES, DR. JEMSEK
AND ALL OUR LYME LITERATE PHYSICIANS
PROTECT THE RIGHTS OF LYME PATIENTS
GAIN RECOGNITION FOR THIS PUBLIC HEALTH CRISIS
SPECIAL GUEST SPEAKERS
ATTORNEY GENERAL
RICHARD BLUMENTHAL
DR JOSEPH BURRASCANO
SANDY BERENBAUM LCSW, BCD

BROOKE LANDAU
BROADCAST PRODUCER
REPORTER: E! ENTERTAINMENT
PAT SMITH,
PRES., LYME DISEASE ASSOC. INC.


THIS IS A NATIONAL CALL TO ACTION
FOR ALL PATIENTS, LYME FAMILIES,
MEDICAL PROFESSIONALS, GOVERNMENT OFFICIALS
CHILDREN INVITED TO TELL THEIR PERSONAL LYME STORIES.
WEAR ‘LYME’ GREEN TO SHOW SUPPORT
PLEASE RSVP TO [e-mail]
OR CALL 203-270-3301 TO REGISTER A CHILD FOR A TALK.

[artur737]

Tez taka inna troche zapowiedz manifestacji z prasy. Manifestacja odbywa sie wlasnie w tej chwili i jeszcze nie widzialem relacji w mediach.

Latest News: June 2nd Lyme Rights Rally

HARTFORD, Conn.--(BUSINESS WIRE)--May 25, 2006--Lyme disease
patients and their families, as well as advocates and government
officials will rally at the State Capitol in Hartford, CT on Friday,
June 2, 2006, from 12 noon to 3pm, to raise awareness of a public
health crisis that affects tens of thousands of individuals
throughout Connecticut and the nation.

Scheduled guest speakers include: Attorney General Richard
Blumenthal; CT State Representative Claudia Powers; E! Entertainment
reporter (and Lyme disease patient) Brooke Landau; Lyme disease
expert Dr. Joseph Burrascano; social worker Sandy Berenbaum; and
Lyme Disease Association President Pat Smith. Dr. Charles Ray Jones
will also be attending.

"Outrage is growing because the incidence of tick-borne diseases is
rising at an alarming rate, while the medical community is not
keeping pace," stated rally committee member Maggie Shaw.
Adding, "Thirty years have passed since Lyme disease was identified
and we still have no accurate testing, no comprehensive physician
training and no adequate research on chronic Lyme disease - patients
who contact us at the Newtown Lyme Disease Task Force often describe
enduring months of misdiagnosis and suffering before finding relief
from one of the few Lyme literate physicians practicing."

One of the key concerns affecting the Lyme disease community is that
doctors disagree about appropriate treatment while ...


patients are caught in the crossfire. These deeply divided opinions, primarily
where persistent Lyme disease is involved, have left many
individuals suffering. Expanded physician training in tick-borne
diseases, protection of Lyme physicians and increased research
funding are just a few of the many issues that will be addressed by
rally speakers, along with patient testimonials from both adults and
children.

Children are in the highest risk category for contracting the
disease, since people are commonly infected in their own backyard.
The effects on students can be staggering: a Centers for Disease
Control and Prevention study reported median school absences of 140
days in New Jersey, and a Columbia University Medical Center study
reported a 22-point drop in IQ.

"Lyme patients everywhere deserve the right to choose their standard
of care for diagnosis and treatment," said Jennifer Reid, Co-Chair
of the Ridgefield Lyme Disease Task Force. "Physicians who are
willing to address the complexities of Lyme disease, along with co-
infections, should be allowed to practice freely without fear of
repercussions."

Lyme disease is reported in 49 states, with data from the Centers
for Disease Control and Prevention showing 166,868 reported cases of
Lyme disease from 1994-2003 nationally. Reported cases are estimated
to be approximately 10 percent of actual cases that meet the CDC
definition. Cases of Lyme disease in Connecticut (the state where
the disease was first discovered) increased 34 percent last year.
The Connecticut State Department of Public Health said there were
1,810 new cases of Lyme disease reported in 2005, an increase from
1,348 the previous year. The 2005 incidence rate in Connecticut was
53 cases per 100,000 people.

Proposed federal legislation sponsored by U.S. Sen. Christopher Dodd
(D-CT) aims to improve prevention efforts and access to medical care
for Lyme patients. The Lyme and Tick-Borne Disease Prevention,
Education, and Research Act of 2005 in the Senate (S. 1479 Chris
Dodd/Rick Santorum), and its House companion bill (H.R. 3427 Chris
Smith/Sue Kelly) authorizes an additional $20 million a year for
Lyme disease research, education and prevention for the next five
years.

For additional rally information and directions visit
www.LymeRightsRally.org.

Contact:
Newtown Lyme Disease Task Force
Maggie Shaw, 203-270-3301
or
Ridgefield Lyme Disease Task Force
Jennifer Reid, 203-241-2400
or
Manning Selvage & Lee
Vicky Jaffe, 617-937-2578
[e-mail]

[wroteknowynick]

Ciekawe ile osób będzie. 166,868 zgłoszonych przypadków choroby w latach
1994-2003 to chyba strasznie dużo no nie ?

[artur737]

Mocno podejrzewam, ze tak naprawde to trzeba te liczbe pomnozyc nie przez 10 ale raczej przez 20-30 zeby sie zblizyc do tego co jest naprawde. A to dlatego, ze nie ma nawet obowiazku zglaszania i wielu lekarzy nie zglasza nawet tych przypadkow gdzie diagnoza boreliozy nie ulega watpliwosci. A do tego jeszcze dochodza przypadki kiedy choroby nie zdiagnozowano wcale lub mylnie zdiagnozowano jako cos innego.

[wroteknowynick]

W Polsce jest obowiązek zgłaszania, dostałem list od sanepidu że mam się s tawić
i udzielić wywiadu.

[efkakor]

ja udzielałam wywiadu przez telefon, dzwonili do domu

[wroteknowynick]

i o co teraz pytają ?

[wroteknowynick]

Ciekawe ile osób będzie na Demonstracji.

[wawan1]

Do mnie przyszli do domu, a ja wtedy byłam taka nieuczesana))))

[artur737]

Na manifestacji pojawilo sie okolo 300 osob. Pomimo obecnosci kamer i wielu reporterow telewizja nie pokazala nic (o ile wiem). Niektorzy mowia, ze bylo to do przewidzenia bo tak samo bylo w poczatkowych protestach AIDS. Telewizja zaczela je relacjonowac dopiero znacznie pozniej, gdy sie rozpowszechnily.

Na demonstracji Attorney General powiedzial:



"We should be alarmed and astonished that our state is vastly underreporting the severity of our Lyme disease crisis. Very simply, the Department of Public Health is underreporting the incidence of the disease by huge, horrendous magnitudes. Our system is currently reporting only a fraction of the number of actual cases. It is a public health travesty and tragedy.

"The reason for current underreporting is that the Department of Public Health eliminated laboratory reporting in 2003 due to supposed budgetary constraints. The number of reported cases declined from approximately 4,000 in 2003 to about 1,300 in 2004. For the last year of statistics in 2005, they increased by 34 percent to 1,810 cases.

"The 500-case increase is frightening, but it would have been much higher if an adequate reporting system for laboratories were in place. Currently, the only reporting is from physician offices.

"At a hearing on Jan. 29, 2004, the Department of Public Health promised that an electronic or online laboratory reporting system would be in place by summer 2005. We are now beginning the summer of 2006 at the height of the Lyme disease season without an adequate reporting system in place. The Health Department is underreporting and understating the numbers of Lyme disease cases and misleadingly reassuring the public.

"Tragically and unforgivably, this underreporting deprives Connecticut of federal resources for research, improved diagnosis, enhanced treatment and testing. Numbers drive funding and policy - and inaccurate numbers drive them down. We need better interdiction and intervention, which are stymied and restrained by underreporting the problem - causing further underfunding by the National Institutes of Health and the Center for Disease Control.

"At present, there is no firm date or plan for adequate laboratory reporting. My office has pursued this issue with the Department of Public health, so far to no avail, but we are writing again today to the commissioner.

My hope is that this rally will mobilize opinion demanding action.

"In the meantime, my office will continue to fight for better diagnosis and care, as well as adequate insurance, addressing the insidious and horrific effects this disease may have on individual lives."

[wroteknowynick]

300 osób to nie najgorzej biorąc pod uwagę że wogóle mieli siłę pójść.

[artur737]

Ale byly juz wieksze. Np w New York kiedy trzeba bylo bronic Dr.Burrascano. Wtedy przychodzilo po 400 osob.

[wroteknowynick]

Burrascano też był btoniony ? Miał sprawę w sądzie czy co ? Chyba dobrze poszło
bo działa dalej i leczy

[artur737]

tak, dobrze poszlo, ale to bylo wiele lat temu. Przez wiele miesiecy nie mogl praktykowac, ale w koncu przyznano mu racje i przeproszono.

Relacja z prasy

[artur737]

news.newstimeslive.com/story.php?id=85339&channel=Local
Rally urges awareness of Lyme disease
By Carl Keyser
SPECIAL TO THE NEWS-TIMES

HARTFORD – The medical establishment needs to be more vigilant in diagnosing and treating Lyme disease, people who suffer from the disease said Friday.

People with Lyme disease – along with supporters and family members – held a rally on the steps of the Capitol to draw attention to the disease, which they said is being ignored by insurance companies and the medical establishment.

"We're here today because Lyme disease is a huge problem in Connecticut," Newtown resident Maggie Shaw said.

Shaw is also a member of the Newtown Lyme Disease Task Force. "My whole family has Lyme disease. My children have it, my husband has it, and I have it."

Cases of Lyme disease in Connecticut increased 34 percent last year, primarily because there were more animals for disease-carrying ticks to feed on, state officials said in an Associated Press story.

The state Department of Public Health said there were 1,810 new cases of Lyme disease reported by health care providers in 2005, up from 1,348 in 2004. The rate of Lyme disease in the state last year was 53 cases per

100,000 people.


The federal Centers for Disease Control and Prevention reported 19,804 cases of Lyme disease across the country in 2004, the latest year for which statistics are available.

That translated nationally to a rate of 6.7 cases per 100,000 people.

Connecticut's rate in 2004 was 39.6 cases per 100,000.

People at the rally said that is why more attention needs to be paid to Lyme disease in the state.

"This a huge problem for the western part of the state," Shaw said. "And the local hospitals and doctors' offices don't know how to address the problem. My family and I have to drive an hour and a half for proper medical treatment."

Shaw isn't the only person having trouble with treatment for the disease that is carried by deer ticks.

Roanna Metowski of Redding said her daughter, now 20, contracted Lyme disease when she was 15. It took five years and eight doctors to finally get the right diagnosis.

"Four of those five years she spent bedridden. None of this would have had to happen if she had been diagnosed and treated correctly," Metowski said.

While the most well-known symptom of Lyme disease is a red rash shaped like a target, the rash doesn't always appear, allowing the disease to go undetected, he said.

"There are other symptoms that are associated with the disease. Nausea or constant fatigue are signs of Lyme disease, but doctors don't typically associate those with Lyme, and that's one of the reason that it goes unnoticed," Metowski said.

In an interview after the Hartford rally, Dr. Thomas Draper, Danbury's associate health director, said there is no lack of Lyme disease awareness locally.

"I don't really think that there is a lack of medical treatment for people in the Danbury area," Draper said. "I know that there is no lack of treatment for people with Lyme disease in the Danbury area."

Easton resident Dolly Curtis was bitten by a tick about 16 years ago – and still suffers from medical problems. It also took years for her to get the Lyme disease diagnosis.

"My doctor told me he thought that it was arthritis. Arthritis? Overnight? It was Lyme disease, not arthritis," she said.

Curtis lives day-by-day with the disease. "I can barely move because all my joints are so stiff. It's hard for me to get around, even after 16 years."

Connecticut Attorney General Richard Blumenthal also appeared at Friday's rally. He said the health industry must do more to diagnose and treat the disease.

"Lyme disease is a public health tragedy and travesty. This disease is devastating and needs to be taken care of. Lyme disease can not be defeated as long as it is ignored by the health officials in the state and around the country. This has to change."

[artur737]

A na zdjeciu ten seledynek to jest kolor przypisany ruchowi boreliozy podobnie jak rozowy jest przypisany ruchowi raka piersi.

[wroteknowynick]

Ciekawe co mu zarzucano, muszę gdzieś znaleść w internecie.
Burascano znany jest ze swoich wysokodawkowych antybiotykowych terapii.
a dwie osoby nie mogą mieć racji na raz przecież - Burascano i nasi profesorowie
polscy na przykład. Nazywają go ostrożnie radykałem.

[artur737]

Pierwszy raz na tym forum czy co? Ty chyba nosa poza swoim Marshallem nie widzisz.

Dr. B byl oskarzony o stosowanie niestandardowego leczenia. A zwolniono go z oskarzen, poniewaz pomimo tego jego pacjenci zdrowieli.
Obecnie to leczenie jest juz bardziej znane i mniej niestandardowe.

[wroteknowynick]

Przyznam się że nie wiedziałem że był oskarżony, mnie raczej interesują sprawy
naukowe a nie polityczne.

[artur737]

Tu jest spis i wiecej danych na temat poprzednich spolecznych akcji - Lyme aktywizm. Zwykle oddolne, organizowane przez pacjentow.

www.lymeinfo.net/advocacyevents.html