Oprah

[Guest guest]

>

>

> I have sort of been toying with the idea of contacting Oprah (via her

> website) to try and get her attention onto CFS. Somethings the

> governement is spurred into action because of the media!

>

> Do you think this would help our cause??? If so, I would love some

> ideas.

>

***Hi Janet - Other people have contacted Oprah over the past ten

years, however, there has never been any response from her people. One

of the problems with having Oprah do a show on CFS is that she tends to

trivialize problems that she does not understand. She did include a

segment on one of her shows many years ago that included talking to a

woman with CFS. The only problem was that this woman was highly

functional, and therefore, did not give a very realistic look at CFS.

Another problem would be, which doctors would Oprah include on her

show? Would she have doctors such as Drs. Lapp, Goldstein, Cheney,

etc., or would she rely on the usual TV docs that don't specialize in

CFS?? That would absolutely make a huge difference as to what direction

the show went in.

Oprah could actually do us more harm than good at this point in time.

Take care.

Bernie

[Guest guest]

Has anybody sent her a copy of the " I Remember Me " DVD? That would

set the right tone -- and probably really tug her heart. She's a

sucker for that kind of thing.

Sara

On Jun 13, 2006, at 7:24 PM, bernieanneca wrote:

>

>>

>

>>

>> I have sort of been toying with the idea of contacting Oprah (via her

>> website) to try and get her attention onto CFS. Somethings the

>> governement is spurred into action because of the media!

>>

>> Do you think this would help our cause??? If so, I would love some

>> ideas.

>>

>

>

> ***Hi Janet - Other people have contacted Oprah over the past ten

> years, however, there has never been any response from her people. One

> of the problems with having Oprah do a show on CFS is that she

> tends to

> trivialize problems that she does not understand. She did include a

> segment on one of her shows many years ago that included talking to a

> woman with CFS. The only problem was that this woman was highly

> functional, and therefore, did not give a very realistic look at CFS.

>

> Another problem would be, which doctors would Oprah include on her

> show? Would she have doctors such as Drs. Lapp, Goldstein, Cheney,

> etc., or would she rely on the usual TV docs that don't specialize in

> CFS?? That would absolutely make a huge difference as to what

> direction

> the show went in.

>

> Oprah could actually do us more harm than good at this point in time.

>

> Take care.

>

> Bernie

>

>

>

>

>

>

[Guest guest]

HI Sara,

I know she wants to help people. I wish some of us from the list could show up

with some of the outstanding doctors in the field. Do you know how to get ahold

of that DVD???

Janet

in San Diego

Mercuria <mercuria@...> wrote:

Has anybody sent her a copy of the " I Remember Me " DVD? That would

set the right tone -- and probably really tug her heart. She's a

sucker for that kind of thing.

Sara

On Jun 13, 2006, at 7:24 PM, bernieanneca wrote:

>

>>

>

>>

>> I have sort of been toying with the idea of contacting Oprah (via her

>> website) to try and get her attention onto CFS. Somethings the

>> governement is spurred into action because of the media!

>>

>> Do you think this would help our cause??? If so, I would love some

>> ideas.

>>

>

>

> ***Hi Janet - Other people have contacted Oprah over the past ten

> years, however, there has never been any response from her people. One

> of the problems with having Oprah do a show on CFS is that she

> tends to

> trivialize problems that she does not understand. She did include a

> segment on one of her shows many years ago that included talking to a

> woman with CFS. The only problem was that this woman was highly

> functional, and therefore, did not give a very realistic look at CFS.

>

> Another problem would be, which doctors would Oprah include on her

> show? Would she have doctors such as Drs. Lapp, Goldstein, Cheney,

> etc., or would she rely on the usual TV docs that don't specialize in

> CFS?? That would absolutely make a huge difference as to what

> direction

> the show went in.

>

> Oprah could actually do us more harm than good at this point in time.

>

> Take care.

>

> Bernie

>

>

>

>

>

>

[Guest guest]

On Jun 13, 2006, at 8:07 PM, Janet s wrote:

> HI Sara,

>

> I know she wants to help people. I wish some of us from the list

> could show up with some of the outstanding doctors in the field. Do

> you know how to get ahold of that DVD???

You can buy it inexpensively at www.irememberme.com. Every PWC should

see this movie: it's simply the best movie about us ever made.

It's an accurate, moving, and poignant way to introduce the issues to

family, friends, and anyone else who doesn't understand but needs to.

It features interviews with , Hyde, and a whole lot of our

other good doctors, too.

It's the kind of thing that one of Oprah's assistant producers could

watch, and really understand both the issues and who they need to get

on the show. The movie alone would set up the premise of a show

narrowly enough that they probably wouldn't stray too far off the

factual ranch. One of the stars of the show is a brilliant boy who is

so sick with CFS that he can't leave the house; he attends his own

high school graduation in an ambulance hired by his classmates.

Amazing stuff. Oprah would eat it for breakfast.

The recent CDC releases about genetics would be a news hook to hang

it on, too. You need something timely for them to connect it to if

you're going to really sell it.

Sara

[Guest guest]

On Jun 13, 2006, at 9:04 PM, bernieanneca wrote:

>

>>

>

>> The right information according to us, of course. The whole point of

>> PR is getting people to see things your way, and encouraging the

>> media to present your view of things.

>>

>> There are ways to get Oprah to put on just the show we want. And

> ways

>> to ensure she'll do us damage it'll take another decade to recover

> from.

>>

>

>

> Hi Sara - Obviously we want the show to be an accurate portrayal of

> CFS, and to have the " right " information according to us. However, my

> point is that it all boils down to which doctors and researchers the

> Oprah producers decide to go with. I'm sure that they have medical

> experts that they consult with and a lot would depend on what their

> opinions were.

She does. (Bernie: I've done professional PR for...counting...15

years. Trust me: I know what goes on behind the scenes of these shows

-- did you catch Fanny Kiefer interviewing me on Studio Four last

year?) But that's why the movie would help. You have to go in ready

to address her experts' preconceptions; and offering experts whose

information trumps theirs.

The movie does that, brilliantly. And it highlights famous people

with CFS, like Akers and Blake -- people who would

be great spokespeople to have on the show -- along with lesser-known

people whose conditions are extremely acute. If her experts had

negative opinions, they'd have to argue uphill against all of that.

The movie alone has all the ingredients of a great Oprah show, in pre-

packaged form.

> A couple of years ago Oprah did a show on anxiety and panic disorders,

> and it was obvious from the get go that Oprah didn't have a clue. She

> had a guest that never left her home because of anxiety, brought

> her to

> the studio and then out on stage in front of a studio audience. The

> woman looked reasonably calm, and Oprah left anyone watching the show

> with the impression that it was just that simple to get over.

As I said: the movie would give her a line on people she could

feature who would make our points in a very compelling way. Her

producers wouldn't be stuck with people like this -- and believe me,

they'd appreciate it.

Imagine s and Blake kicking off the show by

describing his struggle to make movies and get this illness noticed.

And then Akers talking about what it's like to no longer be

the greatest female soccer player in the world. And then having

somebody in in a wheelchair -- or a gurney. And then Dr. Bell, or

Hyde, or Cheney, talking about our research struggles and the

emerging science. Yeah, they might " balance " it by putting on some

other bozo -- but in the face of all that, the guy would look like

the crank he is.

Assistant producers want a) shows that are easy to put together and

shows that they can sell to the executive producers. If they've

got that in hand, their house experts' opinions don't matter nearly

so much. The movie delivers that package.

The other major ingredient needed here is a timely news hook. With

all the new stuff that's coming out, that shouldn't be hard to build;

but the movie is six years old, so we'd need some angle that makes

this fresh.

> I know from discussions with other CFS sufferers that I'm not the only

> one that has serious doubts as to whether Oprah would be helping or

> harming us.

I have serious doubts about my taxes, but that's why I hire an

accountant. People with serious PR doubts should hire a PR pro, who

will know six ways to sell this before lunch.

Sara

[Guest guest]

Hi Sara,

I know you are getting ready to travel. Is this something we could get a

handle on when you get back and possibly make into reality???? I will help in

anyway I can.

Janet

in San Diego

Mercuria <mercuria@...> wrote:

On Jun 13, 2006, at 9:04 PM, bernieanneca wrote:

>

>>

>

>> The right information according to us, of course. The whole point of

>> PR is getting people to see things your way, and encouraging the

>> media to present your view of things.

>>

>> There are ways to get Oprah to put on just the show we want. And

> ways

>> to ensure she'll do us damage it'll take another decade to recover

> from.

>>

>

>

> Hi Sara - Obviously we want the show to be an accurate portrayal of

> CFS, and to have the " right " information according to us. However, my

> point is that it all boils down to which doctors and researchers the

> Oprah producers decide to go with. I'm sure that they have medical

> experts that they consult with and a lot would depend on what their

> opinions were.

She does. (Bernie: I've done professional PR for...counting...15

years. Trust me: I know what goes on behind the scenes of these shows

-- did you catch Fanny Kiefer interviewing me on Studio Four last

year?) But that's why the movie would help. You have to go in ready

to address her experts' preconceptions; and offering experts whose

information trumps theirs.

The movie does that, brilliantly. And it highlights famous people

with CFS, like Akers and Blake -- people who would

be great spokespeople to have on the show -- along with lesser-known

people whose conditions are extremely acute. If her experts had

negative opinions, they'd have to argue uphill against all of that.

The movie alone has all the ingredients of a great Oprah show, in pre-

packaged form.

> A couple of years ago Oprah did a show on anxiety and panic disorders,

> and it was obvious from the get go that Oprah didn't have a clue. She

> had a guest that never left her home because of anxiety, brought

> her to

> the studio and then out on stage in front of a studio audience. The

> woman looked reasonably calm, and Oprah left anyone watching the show

> with the impression that it was just that simple to get over.

As I said: the movie would give her a line on people she could

feature who would make our points in a very compelling way. Her

producers wouldn't be stuck with people like this -- and believe me,

they'd appreciate it.

Imagine s and Blake kicking off the show by

describing his struggle to make movies and get this illness noticed.

And then Akers talking about what it's like to no longer be

the greatest female soccer player in the world. And then having

somebody in in a wheelchair -- or a gurney. And then Dr. Bell, or

Hyde, or Cheney, talking about our research struggles and the

emerging science. Yeah, they might " balance " it by putting on some

other bozo -- but in the face of all that, the guy would look like

the crank he is.

Assistant producers want a) shows that are easy to put together and

shows that they can sell to the executive producers. If they've

got that in hand, their house experts' opinions don't matter nearly

so much. The movie delivers that package.

The other major ingredient needed here is a timely news hook. With

all the new stuff that's coming out, that shouldn't be hard to build;

but the movie is six years old, so we'd need some angle that makes

this fresh.

> I know from discussions with other CFS sufferers that I'm not the only

> one that has serious doubts as to whether Oprah would be helping or

> harming us.

I have serious doubts about my taxes, but that's why I hire an

accountant. People with serious PR doubts should hire a PR pro, who

will know six ways to sell this before lunch.

Sara

[Guest guest]

On Jun 13, 2006, at 10:26 PM, Janet s wrote:

> Hi Sara,

>

> I know you are getting ready to travel. Is this something we

> could get a handle on when you get back and possibly make into

> reality???? I will help in anyway I can.

Whew. I'll be happy to be part of a team, but I don't want to front

it. I'm already looking into a full summer, and then back to school

in mid-August. If someone else could be the one to put the pitch

package together and send it, I'll guide the assembly of it.

First things: Is there anyone we can make alliance with on this? (I

know, the politics of CFS groups is venomous, and this is a very

loaded question.) Conversely, is there anybody we'd be seriously

pissing off? It's just good to know this stuff before we proceed. And

it leads to a third question: Whom are we representing? In whose name

are we asking?

All stuff to think about before we put ourselves on national TV.

Sara

[Guest guest]

HI Sara,

Whew! You can say that again! How does one go about putting a " pitch package "

together??? Wow, I am new here and didn't realize the politics of CFS. Isn't it

just the bottom line of wanting to get well??? What kind of politics can one

have about that??? I guess I am lost on that one and just naive. Is it a

spokesman we are looking for??? I wonder if there are PR firms out there that do

pro bono work???

WE have some really good minds on this list. Even in our brain fog I am amazed

at how articulate and knowledgable so many people are. Alot of us sound like

doctors!!! Where there is a will, there is a way.

How hard can it be if we have a plan and people that are willing to put some

time into it?? With all of the new information coming out about CFS, maybe this

is a good time to push this forward.

Janet

in San Diego

Mercuria <mercuria@...> wrote:

On Jun 13, 2006, at 10:26 PM, Janet s wrote:

> Hi Sara,

>

> I know you are getting ready to travel. Is this something we

> could get a handle on when you get back and possibly make into

> reality???? I will help in anyway I can.

Whew. I'll be happy to be part of a team, but I don't want to front

it. I'm already looking into a full summer, and then back to school

in mid-August. If someone else could be the one to put the pitch

package together and send it, I'll guide the assembly of it.

First things: Is there anyone we can make alliance with on this? (I

know, the politics of CFS groups is venomous, and this is a very

loaded question.) Conversely, is there anybody we'd be seriously

pissing off? It's just good to know this stuff before we proceed. And

it leads to a third question: Whom are we representing? In whose name

are we asking?

All stuff to think about before we put ourselves on national TV.

Sara

[Guest guest]

Hi everyone - Back in early 2001 Oprah had a list of topics on her web-

site that were being considered for future shows. One of the topics was:

~~Health problems because you lost your spirit? ... Do you push

yourself to the edge of exhaustion? Do you think you have Chronic

Fatigue Syndrome or Fibromyalgia AS A RESULT OF NOT NURTURING YOUR MIND

OR SPIRIT? " ~~

This gives you a pretty good idea what Oprah's producers think of CFS.

In April of 2001, The Oprah Show was sent a 7000 signature petition and

a copy of Peggy Munson's book " Stricken: Voices from the Hidden

Epidemic of Chronic Fatigue Syndrome " , and several letters written by

people who were well known in CFS activism in the US. As we all know, a

show was never done, and no one from Oprah's camp even acknowledged

receiving the above information package.

Take care.

Bernie

[Guest guest]

danielle locke wrote:

> I just found out that I may be on Oprah's show soon.

Hey that's great!!!!!

> Help I need to lose weight fast!!! I need to be smaller than HER>

Not necessarily:-) You will be there for MUCH more important reasons?

Just be you:-)

Please post the link - attachments do not work the way this list is set

up; you'll need to put it in the email.

Namaste,

IRene

--

Irene de Villiers, B.Sc AASCA MCSSA D.I.Hom/D.Vet.Hom.

P.O. Box 4703 Spokane WA 99220.

www.angelfire.com/fl/furryboots/clickhere.html (Veterinary Homeopath.)

" Man who say it cannot be done should not interrupt one doing it. "

[Guest guest]

danielle locke wrote:

> http://www.bayshorehigh.org/

Thanks - I hope you get to the bottom of this!

I would seriously look at the formaldehyde as well as the benzene

though, it is a known sensitizer and toxin, and in California

formaldehyde products must carry the warning:

THIS PRODUCT CONTAINS A CHEMICAL(S) KNOWN TO THE STATE OF CALIFORNIA TO

CAUSE CANCER.

Benzene products must also carry this warning.

The website loses some impact because it does not have " real "

statistics. There is no mention of whether the listed cases are the same

or different from normal nor of the size of the school to know if it is

so many cancers out of how many possible students/alumni?

By the way - is someone looking into records on anything and everything

in 1980? That year triggered the worst cases and the worst next year's

birth defects - maybe something extra happened that can be discovered?

Maybe weather records show a hurricane that broke a tank?

IT was 1972 when I worked for MEI-Charlton as a Microbiologist/Chemist,

and the Mallinckrodt lab handbook was our " bible " on toxic substances,

and how much it took to do what damage. It was that year that it was

made well known that benzene was FAR more dangerous than previously

thought. The manual stressed that it was VERY dangerous at levels so low

it could not be detected at all by smell. I do not remember the exact

figures but it was parts per billion (not million) or worse.

Suggest you find a current day lab - commercial lab - in your area to

give you current data/lab-safety-manuals on Benzene and formaldehyde etc

toxicity levels from various chemical houses.

They tend to have more detailed info than the on-line MSDS sheets.

The lab where I worked ages ago is/was in Portland OR. It was

established back in 1930s or so and was very well renowned, did national

cases from stuff like a new bridge that collapsed before completion of

construction - to " did the mouse get in the coke bottle before or after

the coke? " (A lady got very ill from it.) So a general lab has lots of

info. MEI-CHarlton Inc was the name of that one. I was there in the 70s.

So you guys may want to collect such lab manual evidence of the KNOWN

toxicity of benzene from back then when it happened especially.

It's a long shot but you might also find evidence of acid flavoured

drinks preserved with sodium benzoate, perhaps the school distributed

them for lunches.

Sodium benzoate is said to react with acids to form benzene - I have not

investigated the chemistry in detail but thought it worth mentioning.

You might also get more data from local hospitals and oncology centers.

They might not give names, but they could contact folk and/or divulge

stats without names.

Anyway - I know a class action of this kind is a lot of legwork, and I

wish you well.

When do we get to see you on Oprah?

Namaste,

IRene

--

Irene de Villiers, B.Sc AASCA MCSSA D.I.Hom/D.Vet.Hom.

P.O. Box 4703 Spokane WA 99220.

www.angelfire.com/fl/furryboots/clickhere.html (Veterinary Homeopath.)

" Man who say it cannot be done should not interrupt one doing it. "

[Guest guest]

Are there any comparisons with the general population statistics?

Tell Oprah I said hi. One of her penthouse apartments is about 8 miles from

here. Bullock and Travolta have places here too. I was going to

have a T-shirt made that said, " My Dog Peed In Bullock's Yard. "

They're all behind fences or blocked off roads. Never know when they're there.

[Guest guest]

The latest info states that the epidimologist declared that YES we are dealing

with a cancer cluster here....I will tell O hello for you My cancer was not

rare like all the other cases of chronic myeloma. Her producers wanted

everyone's story and stated they pay for all expenses to be on the show. I made

a little joke to my husband, I told him that after being on Oprah I would be

famous, I could write a book about nothing and someone would buy it. I was just

kidding. I really don't view her show very often.

Maddviking@... wrote: Are there any comparisons with the general

population statistics?

Tell Oprah I said hi. One of her penthouse apartments is about 8 miles from

here. Bullock and Travolta have places here too. I was going to

have a T-shirt made that said, " My Dog Peed In Bullock's Yard. "

They're all behind fences or blocked off roads. Never know when they're there.

[Guest guest]

Wow le...that is really exciting. I hope they do go through with the

story and show because thay is a really important story. Very scary too!

On 7/16/06, danielle locke <tasdlocke@...> wrote:

>

> The latest info states that the epidimologist declared that YES we are

> dealing with a cancer cluster here....I will tell O hello for you My

> cancer was not rare like all the other cases of chronic myeloma. Her

> producers wanted everyone's story and stated they pay for all expenses to be

> on the show. I made a little joke to my husband, I told him that after being

> on Oprah I would be famous, I could write a book about nothing and someone

> would buy it. I was just kidding. I really don't view her show very often.

>

> Maddviking@... wrote: Are there any comparisons with the

> general population statistics?

>

> Tell Oprah I said hi. One of her penthouse apartments is about 8 miles

> from

> here. Bullock and Travolta have places here too. I was going

> to

> have a T-shirt made that said, " My Dog Peed In Bullock's Yard. "

> They're all behind fences or blocked off roads. Never know when they're

> there.

>

>

[Guest guest]

Okay - I went and wrote. I wrote under the suggestions for a future show link and left my story. I don't necessarily want to be on (LOL) but I'd love to see it addressed! hugs allisonbraddy <allisonbraddy@...> wrote: Hi everyone,I thought it would be a neat idea if Oprah would do a show on the MUCH needed topic of fibromyalgia. I wrote her show today. I think if we all got together and wrote her hundereds of emails it would make a clear statement. When you write her you have to choose the subject and choose a show type(I think anyway) so, I clicked the Dr, Oz link and chose one of this subject lines then wrote him about my story with fibro. Explaining there is not enough info out there and I'm dieing in my day to day life. Now if I get lucky, they may choose

to add this question to one of the Dr. Oz shows OR if we flood them with fibro emails, just maybe they will choose to do a whole show one day on the subject. It would get so much attention. And just maybe it will help in some way :)Warmly,

Looking for last minute shopping deals? Find them fast with Search.

[Guest guest]

It wouldn't hurt to try Oprah again. My newsletter readers worked on

a " Million Letter Campaign " in 2005 - see http://www.fms-

help.com/letter.htm for Fibromyalgia Awareness Day (May 1) where Oprah

was one of the suggested recipients of our letters. We asked for help

with more awareness of FMS/CFIDS/ME.

Dominie

[Guest guest]

Good luck with the Oprah show on Fibro…

historically she has been one to dig her heels in, refusing to address fibro. I

heard she doesn’t believe in it. Dr. Oz sort of got it slipped in, but

it wasn’t her idea. I bet she got a lot of mail about FMS after that

show aired. Maybe Dr. Oz has changed her mind..? Hope so, and hope your

efforts in writing her will pay off!

Shari

[Guest guest]

She has already included an article about Fibro on her website:http://www.oprah.com/health/soh/soh_sept_fibro.jhtmlMaybe she will one day do a show on it. That would be great!

Never miss a thing. Make your homepage.

[Guest guest]

Hi Dominie is there an email address that we can write to some one about maybe having a show about fibromyalgia and all of the things we have with it. Does Oprah have an email shellyDominie Bush <dombush@...> wrote: It wouldn't hurt to try Oprah again. My newsletter readers worked on a "Million Letter Campaign" in 2005 - see http://www.fms-help.com/letter.htm for Fibromyalgia Awareness Day (May 1) where Oprah was one of the suggested recipients of our letters.

We asked for help with more awareness of FMS/CFIDS/ME.Dominie

[Guest guest]

HI why don't we try Montel in AZ <oriana_az@...> wrote: Okay - I went and wrote. I wrote under the suggestions for a future show link and left my story. I don't necessarily want to be on (LOL) but I'd love to see it addressed! hugs allisonbraddy <allisonbraddyaol> wrote: Hi everyone,I thought it would be a neat idea if Oprah would do a show on the

MUCH needed topic of fibromyalgia. I wrote her show today. I think if we all got together and wrote her hundereds of emails it would make a clear statement. When you write her you have to choose the subject and choose a show type(I think anyway) so, I clicked the Dr, Oz link and chose one of this subject lines then wrote him about my story with fibro. Explaining there is not enough info out there and I'm dieing in my day to day life. Now if I get lucky, they may choose to add this question to one of the Dr. Oz shows OR if we flood them with fibro emails, just maybe they will choose to do a whole show one day on the subject. It would get so much attention. And just maybe it will help in some way :)Warmly, Looking for last minute shopping deals? Find them fast with

Search.

[Guest guest]

We tried Montel in 2005 with our Million Letter Campaign - he got

cartloads of email from fibro sufferers. You can read what his studio

said at http://www.fms-help.com/update.htm - it's right at the top, #1.

[Guest guest]

Could someone please post a link to the Oprah show so the rest of us

can write?

Hall

[Guest guest]

SHE doesn't believe in it? OMG - I knew there was a reason I don't like her much! LOL Shari Ferbert <shari23@...> wrote: Good luck with the Oprah show on Fibro… historically she has been one to dig her heels in, refusing to address fibro. I heard she doesn’t believe in it. Dr. Oz sort of got it slipped in, but it wasn’t her idea. I bet she got a lot of mail about FMS after that show aired. Maybe Dr. Oz has changed her mind..? Hope so, and hope your efforts in writing her will pay

off! Shari

Looking for last minute shopping deals? Find them fast with Search.

[Guest guest]

What we did for the Million Letter Campaign (in 2005) is at

http://www.fms-help.com/letter.htm - the responses we got (few indeed)

are at http://www.fms-help.com/update.htm - the first response is from

Montel's show.

[Guest guest]

I was just messing around, and I stumbled across a way to send Oprah a email.

So I did.

Evidently she works with Heppers sometimes.

I told her about the group, and what we do.

I asked her to please help guide other Heppers to us.

I wonder what will happen.

love

don in ks