Re: Rita Stanley

[Guest guest]

In a message dated 11/24/99 9:16:34 AM Eastern Standard Time,

smott@... writes:

<< I don't want to be rude, but who is Rita Stanley? And

why, in the year and a half that I've been online with lyme groups

haven't I heard about her? >>

because you don't read as much as you think you do..she is a frequent

long-term member of the sci-med lyme newsgroup. Rita best described herself

in her note to the " guestbook " we all have added to...below is her addition

and may help you understand a little more about her...also following is the

press release she wrote for the NIH protest. She is a well respected member

of the lyme community and she helped organize the protest at the NIH. Often a

united approach is more effective than one lone voice, so please understand

why a unified approach/attack can draw much more attention. There is talk of

organizing a demonstration in NYC....if that comes to fruition, I am sure

Rita will have aided in it's organization/publicity is some valuable way.

Bernadette

Thank you Mr. Lasalandra for getting out this story on the controversies of

Lyme disease and Steere's lead role in the conservative philosophies. As a

support group leader in the NW, and advisor to Lyme Alliance I can assure you

that the patient tragedy that I hear about on a daily basis and the

accelerating physician harrasment all trace back to this man's philosophies.

Now, as a patient and open-minded physician community, we must work towards

ending the Steere monopoly. We must stop the physician harrassment and other

bully tactics used to derail real advancement in the area of Lyme disease and

the other tick-borne diseases.

Rita L. Stanley, Ph.D. <RitaStan@...>

- 11/03/99 19:50:19 EST

Subject: Protest Meets at a different site

From: " Rita Stanley " <A HREF= " mailto:ritastan@... " >ritastan@world

net.att.net</A>

Date: Fri, 29 October 1999 05:19 PM EDT

Message-id: <7vd477$fra$1@...>

The chief of NIH police would not grant us a permit for demonstration. We

cannot have a protest on NIH grounds.

So we will meet just off the NIH campus at the following location:

South Drive and Rockville Pike at the Metro Stop.

I will post the Press Release with this change to it.

Rita

Subject: Protest PR with NEW LOCATION

From: " Rita Stanley " <A HREF= " mailto:ritastan@... " >ritastan@world

net.att.net</A>

Date: Fri, 29 October 1999 05:21 PM EDT

Message-id: <7vd4am$g4u$1@...>

FOR IMMEDIATE RELEASE

CONTACT: Rita L. Stanley, Ph.D.

RitaStan@...

Marleen Oetzel

Marleenoet@...

Oct 28, 1998

PATIENTS PROTEST HONORING OF ALLEN STEERE, MD AS " ASTUTE CLINICAN " AT NIH

<A HREF= " http://www.cc.nih.gov/ccc/lecture/astute.html " >http://www.cc.nih.gov/

ccc/lecture/astute.html</A>

An organized protest by Lyme disease sufferers is scheduled just off campus

of the National Institutes of Health (NIH) on Wednesday, Nov 3 from 1:30 PM

to 3:00 PM. The demonstration will be at South Drive and Rockville Pike at

the Metro Stop, Bethesda , land. A Press Conference will be held at 2:00

PM at the same location.

Protest organizers indicate that Steere's academically spawned guidelines

for

diagnosis and treatment of Lyme disease are obsolete, biologically unfounded

and ethically suspect. They indicate that this has resulted in increased

patient tragedy and accelerating harrassment of physicians who do not abide

by Steere's teachings.

Steere, MD who has been credited with " discovering " Lyme a quarter

century ago, has given court testimony against physicians who do not follow

his stringent guidelines. His mantra is Lyme is " overdiagnosed and

overtreated " . Patients are turned away, denigrated publicly, and denied

adequate treatment and

insurance coverage as a result of these predominant beliefs; and their

doctors have lost

their licenses and medical practices.

The Lyme community will publicly protest the honoring of this lead

physician.

Patients will gather outside and " show and tell " how their lives have been

affected by the

academically stringent guidelines promulgated by Steere. In addition, a list

of questions from the Lyme community will be presented to Steere so that he

can explain his logic and his actions towards those who disagree with him.

Lyme disease, a tick-borne infection, is the second fastest growing

infectious diseases in the US. With over 16,000 cases reported in 1998, the

actual figure may easily be 10 times that according to the CDC. Although

publicized chiefly on the East coast, Lyme disease occurs nationwide, as

well as, worldwide.

" Steere's " overdiagnosis and overtreatment " school of thought promotes

narrow, ethically suspect viewpoints and medical guidelines which, more and

more, ignore a growing

body of scientific evidence and patient tragedy. " – Marleen Oetzel,

patient advocate.

[Guest guest]

Dear Friends: I don't want to be rude, but who is Rita Stanley? And

why, in the year and a half that I've been online with lyme groups

haven't I heard about her? If she's the key to anything, wouldn't you

think her name would be more prominent?

In the meantime, I have faxed my story to the networks and I urge ALL

of you to do the same today. I'm not willing to wait any longer to find

out who Rita is, or what she wants us to do. Stand up and be counted -

Don't hide behind one individual, no matter how good willed she may be.

Lovette

[Guest guest]

Hi Lovette,

I am sorry to have offended you, I thought just about everyone knew Rita

and that was dumb of me. I have been on Lyme forums for almost 3 1/2 years

now. Rita is a Ph.D., from Oregon, she has been active in Lyme activism and

an advocate for us, for as long as I have been around, she is currently in

remission, which is terrific for us. She sent out the press release for the

NIH protest (you missed this as you were so sick and in the hospital.)

Here is a website she set up about it.

http://www.angelfire.com/or2/lymeprotest/index.html

There are pictures there too.

Her support group web site is:

http://community.oregonlive.com/cc/lyme

I also would ask you or anyone who needs to know who she is, and how she is

considered our Lead Goose, by going to Deja news:

http://www.deja.com/home_ps.shtml

when the page comes up, scroll down and type:

sci.med.diseases.lyme in the block for FORUM,

type in her email address which is:

ritastan@...

Where it says author, then click on search, this will bring up many of the

posting that Rita has made on the Lyme newsgroup, I imagine there aren't

many recently, due to the harassment of physicians, many major support

groups have gone underground, (private email)

She also spoke to newswires, and I heard her on my local NJ radios

station, telling about the protest and the

problems with LD during the hourly news on the day of the Protest.

She has attended quite a few Lyme conferences and is respected by doctors

and researchers, there is much more but my time is limited.

When I posted about lets wait for direction, I know you did not know that

I am receiving tons of mail from Lyme action groups privately, I should have

been more clear about it. This has caused me much confusion as I am getting

posts saying do this, do that, then do this again, corrections, it is really

crazy. Someone posted about a planned protest, I knew something was being

planned, but I just wanted to wait till it was firmed up before posting to

the list, so the rest of you can avoid the confusion I am experiencing.

Please send out letters, faxes, to anyone, anywhere that you want, I was

really referring mostly to the physical protests. There were comments on

other lists to avoid 20-20 as Stossel usually goes with the

establishment and not the people. There was fear he would have Sigal and

Steere on....these are some of the comments I am hearing. I know time is

of the essence, we cannot let this stop, when I am done here I will write my

letters too. I like the idea Ian is available to us.

Anyway, I hope we can all work together toward the common goal of helping

to save our physicians. I know you saw Dr Orens, and feel much more

emotion about the situation and I am so sorry I caused more distress.

Hugs,

Marta

>From: " F. Mott " <smott@...>

>

>Dear Friends: I don't want to be rude, but who is Rita Stanley? And

>why, in the year and a half that I've been online with lyme groups

>haven't I heard about her? If she's the key to anything, wouldn't you

>think her name would be more prominent?

> In the meantime, I have faxed my story to the networks and I urge ALL

>of you to do the same today. I'm not willing to wait any longer to find

>out who Rita is, or what she wants us to do. Stand up and be counted -

>Don't hide behind one individual, no matter how good willed she may be.

>

>Lovette

>

[Guest guest]

Lovette,

Rita Stanley, as one of the most valuable members of the Lyme activist

community, is one of " the keys " to the sucess of this effort. She's been

working hard at this for several years now, at least since the early

90's. She, along with many others including many on this list are trying

to handle this swell of outrage with a greater degree of forethought and

strategizing. We need to have people, not just one, but several who are

organizers and she is one of them. She has been willing to shoulder the

tremendous responsiblity of centralizing our efforts.

Those of us who chose to wait to get a signal from the organizers about

how to communicate w/ media are not hiding behind anyone. We are merely

saving our energy for the most effective communications which can only

happen with forethought and discussion. There are EXTREMELY SENSITIVE

issues here regarding the protection of our precious LLMD's. The wrong

kind of coverage from the media could mean further catastrophe.

beath

- I don't want to be rude, but who is Rita Stanley? And

> why, in the year and a half that I've been online with lyme groups

> haven't I heard about her? If she's the key to anything, wouldn't you

> think her name would be more prominent?

> In the meantime, I have faxed my story to the networks and I urge ALL

> of you to do the same today. I'm not willing to wait any longer to

find

> out who Rita is, or what she wants us to do. Stand up and be

counted -

> Don't hide behind one individual, no matter how good willed she may

be.

>

[Guest guest]

Dear Marta: You could never offend me! I'm sorry if I've offended you

or Rita. I am happy to follow along as a goose, but I also have

training as an advocate/attorney for 17 years, so I'm not a good

follower! And, as you have hit the nail on the head, this is a very

personal matter because Dr. Orens is the doctor for my children.

In short, all of this brings out the " worst " in my attorney side of

myself! The Seminary side of me is quietly praying with the rest of the

group for a cure...

Lovette

[Guest guest]

Thanks beth,

You expressed this far better than I could.

Hugs,

Marta, NJ

>From: beth Feldman <elsbeth@...>

>

>Lovette,

>

>Rita Stanley, as one of the most valuable members of the Lyme activist

>community, is one of " the keys " to the sucess of this effort. She's been

>working hard at this for several years now, at least since the early

>90's. She, along with many others including many on this list are trying

>to handle this swell of outrage with a greater degree of forethought and

>strategizing. We need to have people, not just one, but several who are

>organizers and she is one of them. She has been willing to shoulder the

>tremendous responsiblity of centralizing our efforts.

[Guest guest]

Hi Lovette and all,

That's good to know, I was worried. I am sure you will be an excellent

East Coast group leader, please contact Rita to see what you can arrange.

Just keep in mind you are just coming out of the hospital so try to pace

yourself. I knew Oren's was your doctor and I knew you were very upset, so

I wasn't surprised at your post, or offended.

Sometimes by not explaining myself thoroughly, I feel I am cheating the

list as all do not follow the other forums and will be familiar with who is

who, or where is where, or whatever. Lately, I am having a terrible time

expressing myself, both verbally and in writing what I want to say. Could be

due to no abx for over a month now. So please, anyone on this list, if you

read a post that needs clarification, and you know the answer, or the full

story, please pitch in and post about it, you won't offend me.Also, if you

don't know what I am talking about, post that too, or write me personally.

Hugs and Happy turkey day,'

Marta, NJ

>From: " F. Mott " <smott@...>

>

>Dear Marta: You could never offend me! I'm sorry if I've offended you

>or Rita. I am happy to follow along as a goose, but I also have

>training as an advocate/attorney for 17 years, so I'm not a good

>follower! And, as you have hit the nail on the head, this is a very

>personal matter because Dr. Orens is the doctor for my children.

> In short, all of this brings out the " worst " in my attorney side of

>myself! The Seminary side of me is quietly praying with the rest of the

>group for a cure...

>

>Lovette

>

>>Send to -Offtopiconelist messages unrelated to lyme, please.

>/archive/lyme-aid

>/archives.cgi/Lyme-Documents

>To unsubscribe, send email to -unsubscribeonelist

>You may substitute " subscribe " , or " digest " or " normal " for

>the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank

both the message and subject header.

>

[Guest guest]

PLEASE DITTO FOR ME!

thanks,

kay

>>>Lately, I am having a terrible time

expressing myself, both verbally and in writing what I want to say. Could be

due to no abx for over a month now. So please, anyone on this list, if you

read a post that needs clarification, and you know the answer, or the full

story, please pitch in and post about it, you won't offend me.Also, if you

don't know what I am talking about, post that too, or write me personally.

Hugs and Happy turkey day,'