posted
I take it everbody thinks it wasn't such a good idea. Oh well, back to the drawing board.
Posts: 158 | From PA. | Registered: Jul 2006
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posted
Kennedy, I believe this has been tried in some form or another and Ophrah's team has not shown interest.
Now if we all emailed her in one day that may be a different story.
Posts: 628 | From the south | Registered: Dec 2005
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bettyg
Unregistered
posted
Use SEARCH and bring up all posts on this; check GENERAL SUPPORT 1st and then MEDICAL.
It gives you ALL info; and the best suggestions... As the expression goes; been there, done that!
We just need to find a new avenue NOT tried before. So read about WHO HAS BEEN CONTACTED, and then come back here with another SUGGESTION of someone not tried ok!
I tried also with LARRY KING LIVE on CNN; once a month LOTS EMAILS at once for several months in a row. NO response. Bettyg
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posted
Well, I guess it's just like everything else....until it hits home nothing gets done.
It just hasn't devastated the right person yet.
Thanks guys, being new to all this I didn't know although, Serendipty that's not a bad idea about sending e-mails all in the same day.
Then if that's ignored well then.....go to plan B or is it up to Z by now.
I'm sitting here trying to remember if any of the talk shows ever have shows on diseases. I know they have shows about nutrition and the only thing close on oprahs show is when she has a Dr. on that tells you what not to do and then shows the effects, for instance, what a healthy lung looks like compared to a smokers lung.
I'm sure all avenues have been exhausted, so same avenue, different strategy maybe.
I still think that's a good ideal.Let's pick a date and between now and then
through lymenet let everyone know that on that day we're all going to send
an e-mail. Can't hurt.Then pick another date and e-mail Larry King.
posted
I believe the writer Alice Walker had lyme, at the time that Oprah was working on her with to make the movie The Color Purple. So it has hit home for her, and she has choosen not raise awareness about this disease.
I haven't seen the show since I was 16 or so, when it first aired. She does have a huge following and I wish she or another talk show host would be interested in this.
We'll keep trying Posts: 628 | From the south | Registered: Dec 2005
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posted
Back when I was a member of a fibro group, we organized a huge campaign to try and get Oprah to talk about Fibro.
Nothing came of that.
This may be another dead end, but I've been trying to find Richard Preston's contact info.
He is the author of "The Hot Zone" (about Ebola) and "The Cobra ... something" (about biowarfare).
I thought w/ the possible biowarfare angle, possible cover-up stuff, all the controversy, he might find it interesting enough to consider writing about.
If you've read his books, he's not scared of the CDC, and he seems to have some very good contacts.
I dunno, just a....nother thought.
Hayley
-------------------- "Data over dogma, Evidence over egos, Patients over politics" -- one smart dude from Missouri Posts: 112 | From TN USA | Registered: Nov 2005
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
I don't believe having Lyme disease discussed on Oprah would be more effective than a petition to Congress asking them to pass bills that they have before them.
Oprah has addressed Lyme disease a few times as part of a discussion about book on infectious diseases.
She had a doctor from CA who had her own column or show on once who told about her family's struggle with Lyme disease.
Karen Forshner was there from the Lyme Disease Foundation and talked about Lyme.
It is not like she has done nothing. She just hasn't lately.
I don't think that just having the problem on Oprah really does much. IF Oprah takes it up as a cause, and something is done, either by her or others, it might help.
I would like to see her have a panel of famous authors who are struggling with Lyme disease. There are several who would be great. They would sell their books, people would talk about them and about Lyme and go to their websites to learn more.
I know some people have approached the Oprah show about that. I imagine there is about a year or so lag until something makes it on to the show because of scheduling and production etc.
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Great Idea! I will send another email to the Oprah show.
Perhaps some of the profits from the sale of the books could go toward the Columbia Research Center, the Children's Fund, etc.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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our own, PJ LANGHOFF, Wisc., author of THE SINGING FOREST, a journey of lyme, 2006, and who is working on her 2nd book due to all the legal problems of being dragged into court by ex-husband who has custody of her 2 lyme-infected, untreated children!
and Karen Stanley & Rita, the 15 personal stories of lyme .... Ann-Ohio's friend, 2005; can't remember name of it right now. Bettyg
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posted
Thought it was a good idea too. My family has a letter writing campaign going to Oprah. Sorry to hear that it has already been tried. I think that if she would get behind this it would be a great help. I dont have lymes but my sister does, went undiagnosed for 12 years. Passed it to her 3 daughters and her husband, although they aren't as sick as she is.Please say prayers for Nancy she can hardly speak and form sentances anymore. She is severely depresssed right now and may be put into the hospital for it. and needs to find a new doc again. for the third time. First one no longer allowed to treat lymes and this one quitting practice to go into research. She lives in Virginia any suggestions anyone?
Posts: 2 | From Wilmington, NC | Registered: Oct 2006
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Your post may be overlooked due to being posted under this thread. May I suggest you start a new thread in medical and copy and paste your reply there?
Blessings and good luck to your family.
Posts: 89 | From Ohio | Registered: Mar 2006
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