There are only about two weeks left before the New York State legislature adjourns until January 2005.

If they adjourn without passing either S5221 or A7365a to protect our doctors, there could be devastating consequences for all Lyme disease patients - no matter where they live.

At present, two major LLMDs in New York State are under the gun. We could well lose these doctors by next year, - unless, in the next two weeks, we get the necessary legislation to protect them against persecution.

As tragic as this loss might be in itself, though, the repercussions for ALL Lyme patients could be devastating.

The actions of the OPMC in the last few years has had a chilling effect on the medical community THROUGHOUT THE COUNTRY!

Many physicians across the country interested in treating Lyme disease have withdrawn for fear of losing their licenses. Although, the OPMC is a NYS agency, it belongs to a national group comprised of all state medical disciplinary boards.

Certainly many more of our doctors will drop out if the OPMC destroys the careers of more New York doctors. And we won't even be able to blame them. The writing will be on the wall, "If you treat Lyme disease with more than the cookbook treatment, you will destroy your career."

Losing LLMDs means not only losing our medical care, it also means that reporting of new cases of Lyme disease will effectively cease. Few reported new cases will mean that Lyme will be defined as a rare illness - not in need of research or treatment.

I hate to stress people with this doomsday scenario, but this is a true crisis , and we all need to act now. All that is being asked is that each and every one of you write a letter.

ACTION ALERT!!

We are asking only that EVERY LYME PATIENT IN THE COUNTRY AND AROUND THE WORLD WRITE TO GOVERNOR PATAKI AND ASK HIM TO SUPPORT THE OPMC REFORM BILL S5221 AND THE MAYERSOHN BILL A7365A.

If Governor Pataki gets THOUSANDS OF LETTERS IN THE NEXT WEEK, there will be pressure on him to get behind these bills.

With his support, we will get them through the Senate and signed into law.

To Write To The Governor:
Governor George E. Pataki
State Capitol
Albany, NY 12224

518-474-8390

To Email The Governor: Click on the link below. Scroll down a little on the page it brings you to, and you will find a form for sendng your email
http://161.11.3.75/

Please include your mailing address

THE MAIN THING TO GET ACROSS IS THAT YOU ARE ASKING FOR HIM TO SUPPORT S5221 AND A7365a. THE OPMC has targeted most of the doctors in NYS who treat chronic Lyme disease, and this has been a great threat to your well being. Both laws we are asking him to support provide due process for doctors. Right now the physicians do not really have much right to defend themselves against unjust charges. Let the Governor know how much your LLMD has helped. Tell him of your concern of what would happen to you if you were to lose your LLMD.

For those of you who don't live in NYS, please add that you know that physcians across the country who treat Lyme disease have watched what is happening in NYS so that further harassment of Lyme docs in NYS will mean less treatment for everyone across the country.

PLEASE DON'T NAME ANY DOCTORS, (EXCEPT DR. BURRASCANO WHOSE CASE HAS HAD A LOT OF PUBLICITY.) DO NOT BAD MOUTH ANY LEGISLATORS. PLEASE KEEP A RESPECTFUL TONE TO THE GOVERNER IN YOUR LETTER.

Almost four years ago, at the demonstration to support Dr. Burrascano against OPMC persecution, we vowed that: We won't lose our lives in silence; And we will not go away. We have been fighting steadily since then and are now finally on the verge of a victory.

Please write to Governor Pataki TODAY!
Thanks,
Ellen
Voices of Lyme

I will write tomorrow

STOP TOMBSTONE BOARDS OF MEDICAL EXAMINERS

This idea may help you get a bigger response....

Type pre-written form letter here, and we will copy and paste it to death...OK?

Trout

I want to help, but I'm not sure I'll find the good words for my letter. So if somebody can give me an example of a letter how it could be, I would be very happy and glad to help you.

You can send me a mail,

Good luck from the other side of the ocean,

Ingeborg

I had carefully written up a few sample letters and collected some from other people. Unfortunately, the are all on my WebTv email, which I can't access now.

SO here is my rushed sample letter to Gov. Pataki.
Dear Governor Pataki,
I urge you to use all your power to pass the OPMC Reform Bill, S5221, and the Mayersohn bill , A7365a, as soon as possible.

Both these bills would add due process to the workings of the Office of Professional Medical Conduct. As the OPMC now stands, physicians have little way to protect themselves against unjust complaints. Those complaints could even be lodged by competitive physicians or by insurance companies seeking to end costly treatments despite their medical effectiveness.

I have suffered from chronic Lyme disease for many years. This is a painful, extremely disabling illness. It took many years for my illness to be properly diagnosed, by which time it was probably too late to hope for a cure. Nevertheless, when I finally found a doctor who diagnosed and treated my Lyme disease, I finally began to get considerable relief from my symptoms.

Had I not found this doctor, I know that I would now either be in a nursing home or dead. I know that is what would happen to me if my doctor were to stop treating Lyme disease because of OPMC harassment.

Since the OPMC has targeted most of the doctors in New York State who are willing to treat chronic Lyme disease, I am , in fact, very fearful of losing my doctor.

The very targeting of this many Lyme disease doctors, is a clear indication of serious bias against doctors who treat chronic Lyme disease with more than the cookbook 2-3 weeks of treatment. This bias exists despite the fact that there is considerable scientfic evidence that Lyme disease bacteria can persist despite this short term treatment. It is also despite the clinical evidence of thousands of people like me who have been helped by continued treatment for our Lyme disease.

New York State has the highest incidence of reported cases in the country. Yet we have only a handful of doctors to treat us, because of the climate of fear created by the OPMC.

Lyme patients throughout the US and many other countries are watching the drama in NYS with much trepidation, since continued OPMC harassment of Lyme doctors has impact across the world.

Since all that is being asked is that physicians be given some measure of due process, it is hard to imagine any objection to these bills. Having some right to defend themselves, would NOT give bad doctors any better chance than they now have. But allowing physicians due process to present their defense would help the good physicians AND would give their patients the basic right to the medical attention that they need.
Sincerely,
Ellen Lubarsky
Full name and address here

Okay, that's one sample letter. Since I wrote it as myself, it is written pretty much from teh point of view of a New Yorker, but could be amended for others. Other people should emphasize the chilling effect that OPMC actions have had, that doctors throughout the country are afraid to touch chronic Lyme patients as a result.

If you ARE from New York State, you also might start the letter with "As a New Yoker, I...."

Please don't copy the letter, since they don't like form letters. Just try to use it to give you some ideas.

Remember that at this point, numbers of letters are very important. DON'T obsess about what to write.

Believe me, if you letter just looks like a primal scream "I'm sick and suffering and you need to pass these bills so I get my medical care," that's jsut fine. (Doesn't sound too much like a primal scream, but that's the best I can do).

Love to you all. Please let's try to give Governor Pataki eye strain by the end of the week.

Again, here are the addresses;
To Write To The Governor:
Governor George E. Pataki
State Capitol
Albany, NY 12224

518-474-8390

To Email The Governor: http://161.11.3.75/

Please include your mailing address

Ellen

As Ellen says..they don't want to see form letters..

So our best bet is to just go over Ellen's initial alert above, and hit a few points.

1. Who you are (patient..patients family..concerned citizen..)

2. What you want him to do (do all he can to SUPPORT THE OPMC REFORM BILL S5221 AND THE MAYERSOHN BILL A7365A.)

3. Write a LITTLE bit about your plight, or your families..

4. Your CONCERNS about the effect it will have on Doctors in NY, patients of those Docs, and the ripple effect throughout the country if medical review boards are not bound by due process..

THEY IN NO WAY JEOPARDIZE the OPMC's
ability to target "bad" Docs. They just assure die process..Such as some disclosure during the proceedings, as well as the right to present medical information in their defence..

SOME ADDITIONAL IDEAS, you don't need to hit all of these points, maybe just pick two:

If the process is made just, then we can feel more secure in knowing we will be protected as far as our quality of care.
**In reguard to both good and bad doctors.

****A significant number of children in endemic areas suffer great morbidity in the lack of proper diagnosis and treatment in the midst of a growing epidemic as a result of licensing pressures.

This kind of intimidation also precludes most doctors from treating illnesses outside of a cookbook, "one size fits all" approach. The effects of current policy allowing the OPMC to inject itself into a medical debate ultimately leaves many patients without protection against complicated, progressive infection.

A precedent set in NY will undoubtedly have considerable impact on what will evolve across the country regarding fair practice by medical review boards, and in turn have an impact on well intentioned physicians' inclination to study and utilize effective treatments in order to care for their patients.

**As Ellen said, it does not have to be a literary masterpiece..and it only has to hit a few main ponts.

It's more important that we write, and get as many others to write as we can.

Trout, can you get all you corn fed folks out there to put out letters?

Mo

+++++++++++++++++++++++++++++++++++++++++++

DearXXX,

I know that you have been aware of my problems with
Lyme disease, and I really need your help in
protecting my medical care. Most of the doctors in
NYS who will treat people with my condition have been
harassed by the State Office of Professional Medical
Conduct.

Many complaints against doctors actually come from
insurance companies. The problem has been that there
is little due process protection for doctors once they
are charged.

Two bills currently in the state legislature would
stop this harassment of Lyme and other doctors by
giving doctors some due process in protecting
themselves.

Could you please write to Governor Pataki this week
and ask him to support bills S5221 and A7365a . Let
him know that your motivation is to protect the
medical treatment of Lyme patients.

To Write To The Governor:
Governor George E. Pataki
State Capitol
Albany, NY 12224

518-474-8390

To Email The Governor: http://161.11.3.75/

Please include your mailing address

Teachers respond well to this call..

It helps to think of doing this with intent.

Our intention is to toss a stone in the pond that sends a ripple effect, turns the tides.

With intent to get this done.

With that, contact groups, friends and family.

I know they may tire of being asked to help, or understand..but this is so important. This is for non-Lyme cases, as well as those stricken.

I also find that communicating the specifics of this calamity re: review boards and the persecution of good Docs brings a clearer sense of awareness to the table. People "get" it when they are made aware of what's going on with OPMC and our LL Docs.

So, in asking that folks write, it also raises awareness a notch.

'Tis a good thing all around.

What's our intention? To bring change.

No Lyme patient can afford to ignore this.

So far as I can tell, this link above takes you to a window (scroll down when you open it) where you paste your letter and send to Pataki.

There is no direct e-mail, this is the way to get it to him.

Please get back and let ud know if it isn't working..

Well, I just tried this :

To Email The Governor: http://161.11.3.75/

from my puter and it came right up.

Maybe keep trying?

Or paste it into your "go" window?

I am computer illiterate, so I don't have many tricks up my sleeve. You could always slap a stamp in it and send it on that way.

If others have the same problem with the
e-mail, please let us know..

Hope you get through, LymeAlive..

Mo

Sooner the better..

and thanks!!!!!!!!!!!!!!!!!

I'm sorry some of you have been having trouble using the link to get to he form to email Pataki.
Please, by all means, snail mail the letter. There is still time.
ellen

Each letter, plus letters from family or friends (even just ask permission to use their names and address and send one for them if that is more efficient)

Each letter brings us closer.

Yours may be the one that decides it..

You can copy and paste the following e-mail I sent to everyone in my address book. Be sure to INSERT YOUR E-MAIL ADDRESS where indicated:

Might I send a letter to Gov. Pataki on your behalf in support of the bills cited below? Please!

The passing of these bills are so crucial for medical care to continue for Lyme patients. Your support will help ease the suffering of thousands of children and adults.

I know people are very busy. I am trying to lobby as many letters as possible within the next week to arrive at his office.

If you would e-mail me your home address, I would be happy to send Gov. Pataki a letter on your behalf asking him to support these two bills. You may include my e-mail address to others you forward this e-mail to: INSERT YOUR E-MAIL ADDRESS

I'll send a letter for anyone who sends me their name & address. Just put in the subject: Gov Pataki

Thank you again for your support. If you've already sent a letter or e-mail, many blessings and thanks your way.

INFORMATION ON THE TWO BILLS:
This is a truly urgent situation. The medical care of ALL Lyme disease patients is in jeopardy, and we must all write letters NOW to protect our care.

There are only about two weeks left before the New York State legislature adjourns until January 2005.

If they adjourn without passing either S5221 or A7365a to protect our doctors, there could be devastating consequences for all Lyme disease patients - no matter where they live.

At present, two major LLMDs in New York State are under the gun. We could well lose these doctors by next year, - unless, in the next two weeks, we get the necessary legislation to protect them against persecution.

As tragic as this loss might be in itself, though, the repercussions for ALL Lyme patients could be devastating.

The actions of the OPMC in the last few years has had a chilling effect on the medical community THROUGHOUT THE COUNTRY!

Many physicians across the country interested in treating Lyme disease have withdrawn for fear of losing their licenses. Although, the OPMC is a NYS
agency, it belongs to a national group comprised of all state medical disciplinary boards.

Certainly many more of our doctors will drop out if the OPMC destroys the careers of more New York doctors.

Losing LLMDs means not only losing our medical care,it also means that reporting of new cases of Lyme disease will effectively cease. Few reported new cases will mean that Lyme will be defined as a rare
illness - not in need of research or treatment.

I hate to stress people with this doomsday scenario, but this is a true crisis , and we all need to act now. All that is being asked is that each and every one of you write a letter.

ACTION ALERT!!

We are asking only that EVERY LYME PATIENT IN THE COUNTRY AND AROUND THE WORLD WRITE TO GOVERNOR PATAKI AND ASK HIM TO SUPPORT THE OPMC REFORM BILL S5221 AND THE MAYERSOHN BILL A7365A.

If Governor Pataki gets THOUSANDS OF LETTERS IN THE NEXT WEEK, there will be pressure on him to get behind these bills. With his support, we will get them through the Senate and signed into law.

To Write To The Governor:
Governor George E. Pataki
State Capitol
Albany, NY 12224

518-474-8390

To Email The Governor: http://161.11.3.75/

Please include your mailing address

THE MAIN THING TO GET ACROSS IS THAT YOU ARE ASKING FOR HIM TO SUPPORT S5221 AND A7365a. THE OPMC has targeted most of the doctors in NYS who treat chronic Lyme disease, and this has been a great threat to your well being. Both laws we are asking him to support provide due process for doctors. Right now the physicians do not really have much right to defend themselves against unjust charges. Let the Governor know how much your LLMD has helped. Tell him of your
concern of what would happen to you if you were to lose your LLMD.

For those of you who don't live in NYS, please add that you know that physcians across the country who treat Lyme disease have watched what is happening in NYS so that further harassment of Lyme docs in NYS
will mean less treatment for everyone across the country.

PLEASE DON'T NAME ANY DOCTORS, (EXCEPT DR. BURRASCANO WHOSE CASE HAS HAD A LOT OF PUBLICITY.) DO NOT BAD MOUTH ANY LEGISLATORS. PLEASE KEEP A RESPECTFUL TONE
TO THE GOVERNER IN YOUR LETTER.

Almost four years ago, at the demonstration to support Dr. Burrascano against OPMC persecution, we vowed that: We won't lose our lives in silence; And we will not go away. We have been fighting steadily since
then and are now finally on the verge of a victory.

Please write to Governor Pataki TODAY!
Thanks,
Ellen
Voices of Lyme

PS I have been having telephone problems , so have also not been able to get on line. I can only put out posts now when I am well enough to get out of the house and use my friend's computer. So I am BEGGING all of you to PLEASE keep this campaign in the
forefront of Lyme attention.

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I sended an email, by normal mail will take to long. One of the things I wrote about is that we need the help for the NY doctors even when we are not in NY ourselves (not even in the States) because they most be an exemple for all MD's and physicians all over the world.

Greetings and success from the Netherlands,
Nic and Ingeborg

I guess I will put this info out on a separate thread, but I wanted you all to know that the Mayersohn blll, A7365a , was introducedin the Senate by Senator Vincent Leibell. The number in the Senate is S3000.

It is fine that we have referred to the bill by it's Assembly number, since the Governor will figure it out.

But if you have not yet written , you might want to refer to it by it's senate number S3000 to highlight the fact that we are trying to get it out of the Senate.

What would we ever do without you?

Much love and light your way, along with loads of healing energy.

I just sent him another e-mail with excerpts of horror stories about childen with Lyme. I included no names, just quotes, comments on how sick our children are. I sent him 12 comments and told him we could send him thousands of these comments if he wants to read more.

If anyone else can come up with something creative.....if we keep the heat on him, maybe he'll hear us!

Ellen - shouldn't we target Senator Clinton too?

It is so very nice of you to think of the NY doctors all the way from your neck of the woods. What a nice thing to say in a letter, and you make a great point!!!

Cheryl

quote:

---

Originally posted by Ingeborg:
Hi folks,

I sended an email, by normal mail will take to long. One of the things I wrote about is that we need the help for the NY doctors even when we are not in NY ourselves (not even in the States) because they most be an exemple for all MD's and physicians all over the world.

Greetings and success from the Netherlands,
Nic and Ingeborg

---

Write for every member of yout family and every friend (include mailing address)

The above can come from ANYWHERE.

NY'ers can call the governor.
518-474-8390

Make a call for each member of the household separately.

They will ask what Bills (give the numbers S5221 and S3000), what they are about (OPMC Reform) and ask your zipcode.

If you have a NY zipcode to give, make some one minute calls as well.

As Ellen says..we need to bombard them now!

Mo

Marie, the OPMC is a state agency, so we are focussing only on the state legislature and the Governor now, since they are the only ones who have the power to make legislation to rein in the OPMC. At this point,it really looks like much of the Senate is favorable to us. Senator Hannon continues to need encouragement in order to let this bill out of his committee. But at this point, it seems that he ill be most responsive to physicians.

He will also be responsive to the Governor. In fact, the entire Repubican majority in the State Senate will be responsive to the Governor.

SO , that's why we are bombarding him with letters.

Mo, thanks for mentioning about phone calls. This is the extra added effort that we are asking of New Yorkers.

Here's what I came up with:

1) If patients with Lyme disease are unable to find a doctor to treat them, their symptoms will only worsen and additional health issues will develop. Neurological damage, cognitive impairment, lower back pain, diabetes, insulin resistance, chronic fatigue syndrome, emotional & psychological disturbances, sleep disorders, etc., are just some of the illnesses that will need to be treated. These costs could be avoided if the cause of the problem, i.e. Lyme, is treated early and thoroughly.

2) If doctors weren't afraid to treat Lyme patients, misdiagnoses would be significantly reduced. Multiple Sclerosis, Lupus, a number of psychiatric disorders, etc., are all common misdiagnoses that are treated unnecessarily at a cost that could be avoided.

3) Children with Chronic Lyme disease are creating an ever increasing burden to the public school systems. The school systems are ill-equipped to handle the difficulty associated with major fatigue and sleep disturbances that Lyme disease can cause. Unlike any other illness, recovery from Lyme disease can include many relapsing episodes. It could take years, on homebound instruction, at an overwhelming cost to the education budget.

4) With an increasing number of people becoming debilitated by Lyme disease, you will see more and more people on welfare, collecting unemployment and on other government assisted programs. The unnecessary, escalating cost to New York State could become enormous.

It just makes good economic sense to support these bills.

Marie

I sent mine via the link...it worked fine.
I also posted a request for letter writers on our canlyme.com discussion board.

We gotta keep this up. As far as this Bill has traveled, it ain't over till the fat lady sings..

Meaning.. legislators still COULD just let this one sit on the table.

The more contact the governor gets via letter, e-mail, fax..

and if you have an NY name and zip to give, call him AS WELL as writing..

The more he hears, the better chance he will influance the Senate to move on this one before the session is up.

Please keep up any contact you can muster. That's how they passed the RI Bill!

We gotta make some noise.

Mo

To my friends and family in NYS,

PLEASE make one SIMPLE phone call to the Governor's office (518-474-8390). Just tell them you would like him to support OPMC reform bills S5221 and S3000. All they are doing is taking a tally. The only thing they asked me for was this morning was my zip code.

We need to flood his office with calls. Ask all of your friends and relatives in NYS to call (a call from each member of a houshold is counted)..

Believe me this is VERY important. One word from him will push this over the line. Time is crutial as session in Albany ends June 22!

Medical access for critically ill patients (esp Lyme disease) depends upon passage of S5221, in my opinion.. I don't want to think about what will happen if we aren't successful!

We're getting down to the wire and MUST keep the contacts coming!

One thing that changed their minds was that they got so many letters from Lyme disease patients that they could no longer deny there was a problem.

One of our most active Lyme patients had tried for years to educate Assemblyman Joel Miller about Lyme. But it was only when he got 3,000 letters from patients that he became a champion of our cause.
With the legislature adjourning in a little more than a week, this is a little hair raising. We have to generate thousands of letters in a very short time.

So please, everybody, be active in getting others to write. If each of us here could generate 10 or 20 letters each, we might just move the Governor.

Also, if you live in NYS, please call teh governor in addition to writing a letter.

Non- New Yorkers please write. Pataki has aspirations to hold national office,so he cares how he is seen in other states.

Marie, those were good reasons that people can mention in their letters.

If anybody is reluctant to write because they don't know what to say, please email me privately and I can help you. [email protected], [email protected]

But , remember , that as long as you ask him to pass S5221 or S3000 (which is the senate versions of A7365a) it is impossible to say anything wrong.

Just write and don't obsess about saying anything earthshaking.
Most of the letters will just be read far enough to know whether to put the in a yes or no pile about the bill.
Ellen

Session ends June 22nd. Continued contact is crutial.

All the info is contained above..

karen

The more folks that do this the more likely he'll hear us.

With writing, though, if we get permisson from friends to use their names and addresses and write letters for them, I think that's legitimate.
By this stage of the game I have asked friends to write so many letters, that they are delighted for me to offer to write one for them.
Ellen

quote:

---

Originally posted by MarieElaine:
I am e-mailing and phoning the governor every day now until the bill passes.

The more folks that do this the more likely he'll hear us.

Marie

---