Tomorrow is a really important day in Lyme history. I hope as many people as possible will be able to show up at the rally to publicize how dangerous the new IDSA guidelines are.
FOR THOSE WHO CANNOT ATTEND: During the hours (11AM-3PM EST) that protesters are at the Westchester Medical Center / New York Medical College, we are asking that Lyme patients across the country make some very important phone calls of support.
PLEASE CALL the following administrators who are in positions of authority over Drs. Raymond Dattwyler, Robert Nadelman, and Gary Wormser, the three Guidelines authors whom we are protesting.
PEOPLE TO CALL:
1) Ralph A. O'Connell, M.D. Acting President and Provost & Dean of NY Medical College (914) 594-4600
2) Susan A. Kline, M.D. Vice Provost, University Student Affairs & Executive Vice Dean, Academic Affairs (914) 594-4500
3) Michael Israel President and CEO Westchester Medical Center (914)-493-7017
WHAT TO SAY POLITELY:
1) Say that you suffer from Lyme disease and that there are 3 doctors employed at the Medical Center & NY Medical College who have published guidelines that will cut off thousands of patients from necessary medical treatment. (Again, the names of those employees are Dr. Raymond Dattwyler, Dr. Robert Nadelman and Dr. Gary Wormser.)
2) Ask that they, as administrators in positions of power, intervene with these doctors on behalf of people who are desperately ill.
3) Please be polite. This is critically important, because we are asking for their help.
WHEN TO CALL BY THE TIME ZONE IN WHICH YOU LIVE Eastern time zone (call 11AM Eastern Time) Central Time Zone (call 11AM Central Time) Mountain Time Zone (call 11AM Mountain Time) Pacific Time Zone (call 11AM Pacific Time)
In order to make sure the calls are spread out during protest hours of 11AM-3PM ET, we are asking people to call according to the above schedule.
If you can't call in your time slot for some reason, go ahead and call anyway. Check here for updated news Wish us luck tomorrow at the protest, and get ready to phone.
Posts: 621 | From US | Registered: Jun 2006
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posted
I will make some phone calls!
Posts: 582 | From midwest | Registered: Nov 2006
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
anyone have their e-mail addresses? My guess is that their phones may go off the hook after awhile....
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Is it ok for us to send emails???!!!! If so here goes: When I searched the websites... emails are a guarded secret. Here are two email addresses that I did locate... one at NY Medical College and one at Westchester Medical Ctr ----- from these email addresses we could guess at the ones that we need.
posted
Yes, it would geneal. The idea is to stagger the calls so they are spread out over a period of hours, not all at once.
Posts: 8430 | From Not available | Registered: Oct 2000
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I am thinkng a letter will work better for me. I will look up the address later. If someone else comes along with the address...great.
I will send copies to each of the names listed above.
I hope all goes well for the protest tomorrow and the guidelines are recalled and more education and awareness is involved.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Thanks for giving us a role in this! I wouldn't have thought of this approach.
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Will do'er...
I also emailed this post to AnnOH and to our small support group here in TampaBay... If someone could email this to the canadian,california,and europe and or Australian lyme groups it would be nice......
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
What a great idea!! I was feeling bad because I wasn't able to go. At least I can do this!!
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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I was able to speak to someone in Michael Israel's office who was very nice and said she would relay the message.
By the time I got to Dr. Kline's office the woman who answered the phone said she already knew what my message would be as she had " a slew of messages" already. She was not familiar with the guidelines and i told her I hope she personally never needed to know them, but that my family lives the horror of Lyme Disease daily and they are impacting us in a frightening way.
I got Dr. O;Connel's voice mail and left an honest message about how these guidelines have begun to impact my family, urging him to use his position of authority to look into the matter.
Thank you to whoever organized a way for those of us who could not be in NY to still have a voice today.
Posts: 25 | From NC | Registered: Jul 2005
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
I was told to call public relations and hung up on.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Ok, all calls are going to Public Relations . They are very polite and taking messages.. Wish I knew what was going on up there...
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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bettyg
Unregistered
posted
Hi! I'm sorry to read you were hung up Julie and treated so poorly! I am on the next shift calling shortly so will be prepared, but glad to hear they are ROLLING CALLS TO PR folks!!
At least SOME OF YOU GOT YOUR CALLS THRU TO A "LIVE" PERSON!!! good for you.
I'm going to HIJACK this thread with something else we can do that I thought of this morning and already took some action on my part. We all know the protest is happening in MINUTES!
I called our local CBS tv station in Des Moines telling them about the lyme protest, and how it effected IOWANS like myself. I mentioned the 7 lyme deaths we've had of correctly diagnosed folks, and many more from the 300 illnesses mimicking lyme disease.
I told them where it was specifically happening so their NYC CBS team would hopefully go and shoot LIVE COVERAGE of it, and then send this footage to DES MOINES where they could show it to us in local NATIONAL NEWS!
I talked to one of the news anchors, Amanda, and she had to cut me off as she was due ON AIR IN ONE MINUTE. I gave her my email since I'm on internet and we have ONE phone line. She would have a REPORTER EMAIL me for more news. Then I did watch her LIVE on the air so she wasn't giving me the brush-off; just honest!
So I would like each of you in other states to call your ABC, CBS, AND NBC LOCAL tv stations asking them to bring YOUR STATE some LIVE coverage back from NYC PROTEST!
IOWANS: I called CBS; would you call ABC OR NBC and post it here so other Iowans will know which station you called. Then watch the 5 - 630 pm news for THAT STATION to see if they had ANY coverage of protest.
Make your local affiliates aware of YOUR LYME stories! Again, WE CAN MAKE A DIFFERENCE HERE TOO by telling them about the NYC protest happening as I type this! Thank you ALL!
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posted
Yes, I was told to call public relations by all 3 of these offices, but not given their number. One woman even said she didn't know the number! This was not a polite reaction.
Here is the number:
Public Relations (914) 493-8024
However, my feeling is that we keep calling those other numbers because that is where the high officials are. Then if you want to, call public relations too. Just my opinion, nothing official.
Another answer to my call was that Westchester Medical Center had no jurisdiction over the publications of these type of guidelines and therefore we should be contacting New York Medical College, where the 3 are employed.
However, the protest is at the medical center and I am sure word will get back to the college. So, the medical center is where we need to call today.
Our protest was exiled off to a quarter mile away from the center. I guess they think out of sight, out of mind. So, because they aren't having to look at it for several hours, the calls are important to make.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
My email to the administrator MDs. They have not been returned so they must have been good. Thanks for posting them I have Lyme Disease - Why don't you care?
I can personally attest to the devastion of Lyme Disease. On top of the physical and emotion ravage of our bodies, we Lyme patients have to contend with a medical community that appears blind to our plight. This is a bacterium, we are the most intelligent mammals on this earth, why can't you focus your energy on finding a cure instead of continuing to deny us the help we need.
Here are two statements in the IDSA guidelines that I can personally dispute.
``Antibiotic therapy has not proven to be useful and is not recommended for patients with chronic... subjective symptoms after recommended treatment regimens for Lyme disease.''
``There is no convincing biological evidence for the existence of symptomatic chronic B. burgdorferi infection among patients after receipt of recommended treatment regimens for Lyme disease.''
Some of my symptoms have improved with antibiotic therapy. I no longer run daily fever and have high blood pressure and I am able to function, with pain, for a few hours a day. Pulsing antibiotics is the ONLY therapy that allows me to function.
You say ``No biological evidence''. How else would you explain my decline when I stop antibiotics? I know the bacteria are in my brain. I feel it with waves of dizziness, head, face and ear pain. The joint, muscle and nerve pain I tolerate. It's a daily part of my life. Protecting my brain is my priority and it is becoming more difficult to do. Please stop the denial and find us a cure.
xxxx xxxx South Carolina - yes I got Lyme here
Posts: 58 | From SC | Registered: May 2004
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
the guessed at e-mail addresses seem to have worked.. i emailed rather than called because i am having a seriously difficult time right now and did not trust myself to be coherent. Here's the email i sent..
Subject Line: ISDA Lyme Guidelines: Bad Medicine, Bad Politics
Dear Mr. Israel;
I respectfully request you reconsider any professional affiliation the Westchester Center has with the writers of the ISDA lyme treatment guidelines, Drs. Dattwyler, Nadelman and Wormser.
Their intellectual dishonesty in presenting only a sliver of the known science, that skewed towards their own bias, is disgraceful to the field of medicine they profess to serve.
As all are aware, the CDC and insurance companies are already using these "voluntary" guidelines to refuse treatment to seriously ill persons suffering from tick born diseases.
I fear I may be next, even though my SPECT scans clearly demonstrate Lyme-related moderate-severe global encephalitis. I fear as well for the huge number of people affected directly or indirectly by tick borne diseases. The consequences of the inadequate treatment advocated in the ISDA Lyme guidelines will devastate many thousands of families.
Again, I am asking you to hold the physicians you are affiliated with responsible to a higher scientific and moral standard.
Sincerely yours,
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I just made a call to Dr. Israel's office. They are now stating that it is a private practice and the three doctors that we are referring to ONLY have privileges their, and not offices.
They are completely distancing themselves from any association with Wormser, et al.
One of the numbers sent me immediately to the PR line, where you can leave a message. I was able to speak with clarity and urgency. I left them my home phone number, and begged them to intervene on the behalf of those suffering and those who WILL DIE from this disease.
I did get voice mail for CEO Michael Israel where I left my name/state/phone no./email and my brief message.
36 yr. chronic lyme; 34 yrs. misdiagnosed, and 2 yrs. long term antibiotics to help me reach remission.
The new guidelines the 3 named mds developed are detrimental to my health and $5200 out of pocket health insurance refuses to pay.
Called other 2 numbers and they asked if it was LYME DISEASE, yes, and they transferred me automatically to PUBLIC RELATIONS without saying this. I left detailed note like the above. 2nd call said I was transferred again here, and I left previous message saying bye/hung up.
So those in the next 2 time zones can expect this to happen to you!
A FEW LYMIES GOT THRU TODAY before they got smart!!
Again, great emails. I also said I felt the 3 of them should be held responsible for their actions as well!
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posted
(READ all the way to the end for more contact information!!!) From the New York Medical College website:
AFFILIATE HOSPITALS
New York Medical College applications with study aspects at affiliated hospital sites will be reviewed by the Office of Research Administration to ensure that budgets contain funds to reimburse hospitals for their appropriate costs. For administrative review of requests involving hospital resources related to research, contact the appropriate affiliate office:
Westchester Medical Center (914) 493-5244 Metropolitan Hospital Center (212) 423-6263
To expedite the approval process, investigators are encouraged to submit applications to these offices simultaneously with submission to the Office of Research Administration.
SCIENTIFIC MISCONDUCT
"Guidelines for Ethical Practices in Research and Policies for Dealing with Instances of Alleged Violations of Ethical Standards" is available from the Office of Research Administration. These guidelines meet the regulatory requirements and provide a framework for the College to respond to any allegations that might arise. Specifically, the purpose of these guidelines is to preclude the occurrences of all unethical scientific practices in research including: (1) deliberate falsification or misrepresentation in the proposal, conduct, or reporting of research, (2) pilfering of scientific data and plagiarism in scientific publications, and (3) misappropriations of research funds. The Guidelines also cite recommendations for investigating allegations of unethical scientific practices and outlines procedures for reporting and correcting the consequences of such unethical practices, while at the same time protecting the rights and reputation of investigators.
RESEARCH PERFORMANCE AND CONFLICT OF FINANCIAL INTEREST
New York Medical College's policy on conflict of financial interest meets federal requirements and will be applied to all research and other academic activities. The policy requires that the principal investigator/program director and any other person who is responsible for the design, conduct or reporting of a project provide a listing of financial interests and those of his/her spouse and dependent children a) "that would reasonably appear to be affected by the research and b) in entities whose financial interests would reasonably appear to be affected by the research," i.e., does the research affect the value of your holdings or does the research affect the value of the company. Disclosures will be evaluated internally and, if it is determined that there is a potential for a significant conflict of financial interest, the investigator and the College will work to manage, reduce, or eliminate the conflict before the project is initiated. The New York Medical College Conflict of Financial Interest Policy and disclosure forms are available from the Office of Research Administration. Contact Catharine Crea, Associate Dean, and Director, Office of Research Administration (914-594-4480) for additional information.
-------------------------------------------------
The Office of Research Administration will continue to be a clearinghouse for all matters relating to the conduct of research or sponsored programs. Please visit this Office, located on the 2nd floor of the Administration Building or call 594-4480 if you need additional information or advice.
Institutional Endorsement Official institutional endorsement is required for all sponsored project applications or research proposals submitted for external funding regardless of whether informal contact with a potential sponsor has been established previously. All proposals, grant applications, and letters which describe a project and request funding must be reviewed and signed by this Office prior to submission. Preliminary letters which are intended only to ascertain an agency's interest in receiving a proposal in a particular area of activity may be sent directly by the faculty; it is advisable to forward a copy to this Office.
-------------------------
Meet the Staff
The Office of Research Administration is located on the 2nd floor of the Administration Building located on the Valhalla campus in Westchester County, NY. The office hours are 9:00 A.M. to 5:00 P.M., Monday through Friday.
posted
I just called O'Connell's office and got a plesant lady, I explained my call, she was congenial and put me thru to a public relations line, I explained my 34 yrs of hell, and I truly need my doctor to treat me.
We can not as a group of ill patients allow Infectios disease ducks to rule over our doctors treatments, who do they think they are???
I hope our lyme warriors are showing how important this issue is to all lyme patients.
Good luck MAry
Posts: 44 | From PA | Registered: Jul 2004
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Yep,
I got the pub relations lines too...
Man it did'nt take them long...
Hopefully these calls won't all be dumped into a deadletter(phone msg)type thingy...
that would really tick me off....sorry!
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
Here is the kind of GARBAGE NY Medical College puts out in their press releases!
NEW ENGLAND JOURNAL OF MEDICINE FEATURES LYME DISEASE CASE STUDY BY COLLEGE EXPERT IN INFECTIOUS DISEASES
VALHALLA, N.Y., June 27, 2006--An article published by a New York Medical College researcher summarizes the latest information on diagnosis, treatment and prevention strategies for early Lyme disease. The article, published this week in the New England Journal of Medicine, helps explain why author Gary P. Wormser, M.D., and New York Medical College are leading authorities in the study, diagnosis, treatment and prevention of Lyme disease. According to the Journal, Clinical Practice articles are evidence-based reviews of topics relevant to practicing physicians, both primary care providers and specialists. The peer-reviewed articles distill years of clinical investigation and experience for use by physicians in patient care, as well as for use in post-graduate medical education.
The feature begins with a case vignette highlighting a common clinical situation, describing a 26-year-old woman from a tick-endemic area who presents with various symptoms that may be associated with Lyme disease. Following an overview of the disease and how it is transmitted, Dr. Wormser presents evidence to support a diagnosis and recommended treatment strategy and discusses how the infection might have been avoided.
Dr. Wormser is professor of medicine, chief of the Division of Infectious Diseases and vice chairman of the Department of Medicine. New York Medical College researchers, including Dr. Wormser, are authors on almost half of the 51 studies and articles on Lyme disease listed in the reference section.
Contact: Lori Perrault (914) 594-4536
-------------------- Some day, this mamma's gonna dance! Posts: 199 | From here | Registered: Apr 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
O'connel's office transfered me to a recorded outgoing message specifically aimed at us, asking to leave detailed message about guidelines. My lyme brain is VERY thick today---had a hard time speaking. am also so emotional about it.
please call and leavve your own message.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
Trails! Your message sounds very promising to me! If Dr. O'Connell would like detailed messages on what we find wrong with the guidelines, he is at least willing to listen to the arguments! Let's get him links to the literature, citations, and information to back up our arguments!!!
Posts: 393 | From Washington, DC | Registered: Jun 2005
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bettyg
Unregistered
posted
Big Momma, great research of names/addresses, etc.
BUT, I think we need to hold off until we hear back OFFICIALLY FROM PROTEST PLANNING COMMITTEE as Tincup's special post indicates as we do NOT know what they have in mind until it is posted or emailed to our home addresses.
Has anyone tried calling their local tv news to see if they will try to get some PROTEST COVERAGE in your home states?
I never got an email back from our local CBS reporter in Des Moines, Iowa! I keep checking my email, and of course all the news HAPPENING as we speak!
Well, the protest is wrapping up in under 10 minutes now! Hope they had the 60 degrees that we had several days ago.
Today it's 20 and windchill makes it feel like ZERO! Glad they got GOOD WEATHER for our lyme protest!!
I can't wait to hear the feedback as well!
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quote:Originally posted by lou: Another answer to my call was that Westchester Medical Center had no jurisdiction over the publications of these type of guidelines and therefore we should be contacting New York Medical College, where the 3 are employed.
However, the protest is at the medical center and I am sure word will get back to the college. So, the medical center is where we need to call today.
Lou, It's funny that Westchester would say this since they have Dr. WORM listed as Chief Infectious Disease specialist on THEIR website!! Obviously they do not know that if Dr. Worm should committ negligence or malpractice at their medical institution THEY could be held responsible! I would be concerned if I were them, since patients all over the world are calling.
Clink the link below to view a listing of Westchester Medical Center Specialists.
Physicians Medicine - Infectious Disease Name Specialty Gary Wormser, M.D. (Chief) Infectious Diseases Harold Horowitz, M.D. Infectious Diseases Marisa Montecalvo, M.D. Infectious Diseases Robert Nadelman, M.D. Infectious Diseases John Nowakowski, M.D. Infectious Diseases George Sakoulas, M.D. Infectious Diseases Catherine Butkus Small, M.D. Infectious Diseases
11/30/2006
-------------------- Some day, this mamma's gonna dance! Posts: 199 | From here | Registered: Apr 2005
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Sent emails to the address posted by Big Mamma.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I sent e-mails to the above addresses. I'll let you know if I get them returned or not. (either undeliverable or a reply)
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by trails: O'connel's office transfered me to a recorded outgoing message specifically aimed at us, asking to leave detailed message about guidelines. My lyme brain is VERY thick today---had a hard time speaking. am also so emotional about it.
please call and leavve your own message.
Just went there and did that.
Rehearsed a brief little speech first so I wouldn't trip on my tongue.
I said 'I'm calling from California because I can't be there today.
I have neuroborreliosis and babesia WA-1, multiple brain lesions, ongoing treatment for a year and a half, still treating.'
I said, 'There is no place in the new Guidelines for me.'
I said, 'They have not made provision for recurrent and relapsing lyme disease, and there are multitudes of studies showing persistence, which they have ignored, and someone needs to help us.'
I said, 'Thank you for permitting us this opportunity to at least be heard.'
That was the gist.
As with all machines I figgered it would cut me off any second so I tried to keep it short and sweet and of course polite. I even left my name and phone number if they would like to talk to me about it. (Yeah, as if.)
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
The Arizona gang have sent letters to all the papers today.
We want to do as much as we can from here, since we can't be there.
Can hardly wait for the reports!!
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
We tried calling from the protest today but the special mailboxes they set up for our calls were all FULL. I'll try again in the days ahead. hats
Posts: 956 | From MA | Registered: Nov 2004
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