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Post by ruth on Jul 18, 2010 11:32:04 GMT -5
Tune in or set your recorders to the Rachael Ray Daytime Talk Show on Friday, July 23, 2010 for a segment on Morgellons and Lyme featuring an appearance by Cindy Casey. The Charles E. Holman Foundation website www.thenmo.org provides a link for details on what time the program will air in your area. You can also find the time and date information at : www.rachaelrayshow.com/show/view/1054/
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Post by Gwen "sunnyand7777" Simmons RN on Jul 19, 2010 1:31:14 GMT -5
Ruth, Thanks for putting up this informaton. The program is about people who were forced to be their own medical advocate. Dr. David Bull, a Lyme physician from the UK, is also on the show. We can post on Rachael Ray's message board about Morgellons. It might be nice to post about Morgellons and what it's like to have it with virtually no help from the medical community etc., or the challenges of having an emerging new disease about which so little is known... ...or about how bad we need research funding... or anything you can think of. Rachael Ray's site will hopefully be some good publicity and spread public awarness. It would be nice for lots and lots of people to build the momentum about Morgellons before the program even airs. This effort might show the producers how important this is to so many people. www.rachaelrayshow.com/club/board/thread/72198/Sunny
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Post by Acacian Immolation on Jul 20, 2010 1:53:21 GMT -5
if someone here owns a DVR tv show recorder and knows how to transfer that onto youtube or just a file you can encode and post then that would be awesoms for us non-TV viewers as well.
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Post by classykaren on Jul 23, 2010 13:31:41 GMT -5
I just watched her show she is terrific ,it is suposed to be on her web site with links .
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Post by crashcourse on Jul 23, 2010 14:45:38 GMT -5
Does anyone have an actual link? I can't find this story.
TIA
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Post by justhanginin on Jul 23, 2010 15:43:47 GMT -5
A link here would be greatly appreciated. I missed the first 20 minutes of the show.
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Post by crashcourse on Jul 23, 2010 18:30:21 GMT -5
As far as I can tell this segment is not in the Racheal Ray site videos. Of the "mystery diseases" they only have the clip of the Doctor with the undiagnosed shellfish poisoning. Maybe later.
Maybe not. Oops my conspiracy theory mind is now at work.
Best regards.
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Post by 2.99(plus~tax) on Jul 23, 2010 19:20:46 GMT -5
gosh Cindy.....you keep going. I admire your determination, you did a good job.
~Ali
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Post by ruth on Jul 23, 2010 19:37:21 GMT -5
cindy did very well. dr. ginger savely was on briefly.
the doctor afterwards said without it being in the medical books it doesn't exist. then he said what they all say. dop as it is in the books...........and doesn't she look good now?
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Post by bannanny on Jul 24, 2010 11:23:16 GMT -5
Mom called me and said my uncle called her cuz he saw the show. She said he told her something was brought up about a cure being just around the corner. Did he hear it wrong or was there actually something said about that on her show? I missed it and sure would love a link to it too if anyonee finds one!
love ya's ~~ bannanny
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Post by toni on Jul 24, 2010 12:22:17 GMT -5
Hi Bannanny,
No, he didn't hear it wrong. It was said on the show (that there IS treatment).
Now imho, is there? Not that I'm aware of.
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Post by ppy18 on Jul 24, 2010 13:10:03 GMT -5
no cure on the way if they can't identify what the hell it is they're curing. fiber analysis anyone? that being said i think cindy did a great job and deserves our admiration for all that she has done and continues to do to bring awareness to this disease. i am curious to know if she is genuinely better or if they misrepresented the state of her health. in all the time i have known cindy she has been fairly unresponsive to treatment.
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Post by bannanny on Jul 24, 2010 16:17:22 GMT -5
Well... I just got the scoop from someone who saw the show. It seems Cindy was only speaking for herself and once again forgot to mention all the other morgies out there who still continue to suffer... and die.
If you were a listener who doesn't have morgs and doesn't know much about it (like my uncle) you'd be left feeling that it's nothing to be too concerned about. Cindy's been coming off like she's just fine lately... and how she's found her way to live with morgs, etc. etc. etc. On top of that when they told her how good she looks and mentioned that her lesions have disappeared, it only left the listener with the impression that it must work the same for every other person out there with morgs, which we know is not the case. It's never mentioned by her that some don't even have lesions either, which really irks me... especially being I'm one who's never had them yet my nightmare is as big as big can be. Of course she can say as many times as she wants to and to whoever she wants to that her symptoms are under control and this thing can easily be lived with, but IMO that's the worst representation we can have.
Nothing was mentioned about the CDC's study either, or that there are thousands of sufferer's out there who HAVEN'T been able to find a way to control this mess. Not good representation at all if you ask me.
So no toni... there is no treatment. The docs on the show simply stated there was becuz Cindy said there was... for her anyway. Sorry, but I don't like the way she's been portraying morgs and I wish she'd stop doing all this publicity for herself alone.
hugs ~~ bannanny
P.S. If someone wants to jump down my throat for saying what I've said, please don't. It's just my opinion is all and I welcome yours just the same.
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Post by 2.99(plus~tax) on Jul 24, 2010 19:07:48 GMT -5
not jumping down your throat nanners, just wanted to bring up that when one does shows you have no idea what it is going to look like or what is or is not going to be included in the final airing tape.
I speak from experience.
I will never do another TV interview again. The editing process is biased and the most important stuff is left out. Like when I did mine they interviewed us one at a time..... I said some very important stuff, important words that should have been aired. They didn't air it. NOt to mention they shouldn't have focused on me so much, I felt that there were better qualified speakers on the topic. (there were a bunch of us doing the inside edition taping)
Anyway, I now have a different outlook on those kinds of shows. They spin it the way that they want it done, not always how it should be done.
I'm still not jumping down your throat though. you are most certainly entitled to your opinion. Totally respect that.
loves, Ali
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Post by bessie on Jul 24, 2010 22:07:58 GMT -5
I think it is also important to remember that the interviewer structures the questions. Rach asked Cindy specific questions, and that was the way it went. The show is only a half hour - and three "mystery" conditions were very briefly covered - and then on to cooking! There was hardly enough time to do much else. There was NO mention of a "cure" being around the corner. I think Dr. Bull said something about there being "treatment" for it, but I don't know what he was referring to (probably Lyme-type treatments). I also think it is unfair to criticize anyone who is putting him or herself out there and helping to make this a visible problem. How many of us even use our real names, or do any outreach? I understand that the NMO was swamped with emails from people who didn't know what was wrong with them until they saw the show - and there were donations for research as well. It's too bad that Dr. Bull made the remarks about it not being in any medical books, etc, but perhaps even that might be helpful for people to hear, though I must admit it did get my back up at the time. As far as "living with Morgellons" - well, that is an important message, too. Until there IS a cure (if ever), I want to live each day as well as I can, to participate in life as much as I am able, and - yes - to be thankful for what I DO have. What's the alternative? Living with it doesn't mean we stop trying.
Bessie
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Post by jj on Jul 24, 2010 22:20:37 GMT -5
Thanks for pointing that out Ali. That's important to know for television as well as print media. When we participate in Media advocacy like this the end product is rarely exactly as we all would like it to be. We can find ways to improve upon every Morgellons article in print or any given television segment if we look hard enough. There is always a way to do something better or reach a larger audience with a more thorough and accurate message .............. that said, there is always something positive achieved and another step taken in each effort we do make. In this case based on media alerts, the shows own description and as it was shared " people forced to be their own medical advocates" ........... IMHO, it was what it was. For those wanting to share more information as a group or individual they certainly can on RR's blog with the link Sunny shared. For those interested in Dr. David Bull's medical expertise and background his full biography is here: www.davidbull.com/DavidBull_html/biog/DavidBull.pdfJJ
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Post by jj on Jul 24, 2010 22:55:04 GMT -5
I also think it is unfair to criticize anyone who is putting him or herself out there and helping to make this a visible problem. Bessie Agree Bessie This should apply to everyone, past, present, and future. JJ
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Post by violet on Jul 26, 2010 14:59:50 GMT -5
Well... I just got the scoop from someone who saw the show. It seems Cindy was only speaking for herself and once again forgot to mention all the other morgies out there who still continue to suffer... and die. If you were a listener who doesn't have morgs and doesn't know much about it (like my uncle) you'd be left feeling that it's nothing to be too concerned about. Cindy's been coming off like she's just fine lately... and how she's found her way to live with morgs, etc. etc. etc. On top of that when they told her how good she looks and mentioned that her lesions have disappeared, it only left the listener with the impression that it must work the same for every other person out there with morgs, which we know is not the case. It's never mentioned by her that some don't even have lesions either, which really irks me... especially being I'm one who's never had them yet my nightmare is as big as big can be. Of course she can say as many times as she wants to and to whoever she wants to that her symptoms are under control and this thing can easily be lived with, but IMO that's the worst representation we can have. Nothing was mentioned about the CDC's study either, or that there are thousands of sufferer's out there who HAVEN'T been able to find a way to control this mess. Not good representation at all if you ask me. So no toni... there is no treatment. The docs on the show simply stated there was becuz Cindy said there was... for her anyway. Sorry, but I don't like the way she's been portraying morgs and I wish she'd stop doing all this publicity for herself alone. hugs ~~ bannanny P.S. If someone wants to jump down my throat for saying what I've said, please don't. It's just my opinion is all and I welcome yours just the same. Hi, Nans! Just FYI, I remember Cindy posting that she couldn't get in all she wanted to say on the show and that it ended up being something like one line that she was able to interject! At the Morgellons Conference in Texas just this past April, Cindy was very ill. She is always fighting this, and like most of us, she has her better days and her not-so-good days. Cindy seems to be one of the most inclusive people I know in our fight. Her whole thrust is to be collaborative, gathering as much information as possible. I've seen her in action both on the conference DVDs and with researchers and with individual sufferers. I don't know of anyone else who has pulled together successfully a group of researchers and health professionals and sufferers for an annual meeting to share information and findings. And the conference is announced openly for all to attend. Just a different perspective to consider. :-)
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Post by ruth on Jul 28, 2010 11:47:45 GMT -5
"It seems Cindy was only speaking for herself and once again forgot to mention all the other morgies out there who still continue to suffer... and die."
" Cindy's been coming off like she's just fine lately... and how she's found her way to live with morgs, etc. etc. etc"
hi nan, it hurt MY feelings for you to write this. i hope you do not really believe what you wrote. she can say all of what needs to be said...........what makes it on air is another thing.
i also saw the show and did not perceive it as whomever you got the scoop from.
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Post by violet on Jul 28, 2010 12:34:21 GMT -5
"It seems Cindy was only speaking for herself and once again forgot to mention all the other morgies out there who still continue to suffer... and die." " Cindy's been coming off like she's just fine lately... and how she's found her way to live with morgs, etc. etc. etc" hi nan, it hurt MY feelings for you to write this. i hope you do not really believe what you wrote. she can say all of what needs to be said...........what makes it on air is another thing. i also saw the show and did not perceive it as whomever you got the scoop from. And Nans, if you check out her posts on Morgellons Sanctum and also order the DVDs of the conference in April (which was very scientifically and collaboratively informative), I think you may find that your impression of her and your sense that her fight is only for herself is a very unfair misrepresentation of who she really is.
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