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
"We shall defend our island, whatever the cost may be, we shall fight on the beaches, we shall fight on the landing grounds, we shall fight in the fields and in the streets, we shall fight in the hills; we shall never surrender." Winston Churchill
"Your sole contribution to the sum of things is yourself." Frank Crane
"You must be the change you wish to see in the world." Mohandas Gandhi
"Not everything that is faced can be changed, but nothing can be changed until it is faced." James A. Baldwin
"Success isn't a result of spontaneous combustion. You must set yourself on fire." Arnold H. Glasow
"Defeat is not the worst of failures. Not to have tried is the true failure." George E. Woodberry
-------------------- Some day, this mamma's gonna dance! Posts: 199 | From here | Registered: Apr 2005
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
UP!!! Thanks for the wonderful inspirational quotes, Bigmamma!
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.
FYI ... Julie was saying in medical ALL CALLS ARE GOING TO "PUBLIC RELATIONS" and you will speak to a live person there!
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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bettyg
Unregistered
posted
see medical; same post!
Lou posted ALL CALLS ARE BEING REFERRED TO PUBLIC RELATIONS AND SOME DID NOT EVEN KNOW THE NO.
Lou showed 914 - 493 - 8024 public relations
Lou said to call the 3 numbers anyway. *************************************
ICESKATER just emailed me; she left her name/phone no/email on CEO's voice mail; she got thru. Betty I called the provost is taking names only the vice chairman of affairs is referring to public relations .
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Apparently NY Medical College is treating this as a public relations problem. It didn't matter which person I was trying to call...once IDSA was mentioned, they quickly connected me to the public relations voice mail.
I did get the Westchester CEO's voice mail and left him a message to call.
Maybe I just need to keep trying until I reach the person I am calling. They need to know that this is not just going to go away.
Posts: 158 | From Ecuador | Registered: Apr 2006
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bettyg
Unregistered
posted
pig, we just need to call another day when they are NOT prepared!! hehe
great emails you 2!
I just made my 3 calls to NYC:
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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Read all the way to the end for CONTACT info!! 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.
--------------- WAHOOO - Let them have it too!!!! Let them know they should not be "endorsing" his research!
-------------------- Some day, this mamma's gonna dance! Posts: 199 | From here | Registered: Apr 2005
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bettyg
Unregistered
posted
Big Momma and others,
Tincup's post in medical and activism said for us NOT to do anything else than what has been posted by the PROTEST PLANNING COMMITTEE so we do not jeoparadize anything they have planned, but not announced to date!
You provided excellent info; when we get the go ahead from Tincup, Pat Smith, or others from PLANNING COMMITTEE, you have provided everything we need to email them! Thanks so much bigmomma.
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posted
I don't think it would hurt anything to email these ideas and contacts to Pat Smith. They can't think of everything, might even think it is a good idea and tell us to go ahead. But we need to be organized, not doing a lot of stuff freelance.
There are good ideas being proposed here on various threads on lymenet. For lyme brains, got some smart cookies.
Posts: 8430 | From Not available | Registered: Oct 2000
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bettyg
Unregistered
posted
Lou, I totally agree 100%; some smart cookies all over the board with outstanding IDEAS!
MAMMA, please email Pat; great suggestion Lou; they are ALL exhausted so the ideas get to the no. 1 person for decision making!
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