Topic: 3/3/09 MOST CURRENT UPDATE INFO FOR OPRAH/DR. OZ POSTING
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
This is the most up to date information:
Hello -
Thank you for your email and we understand the confusion surrounding this. Please know that your comments in this part of the Oprah site are crucial to us getting the attention of Oprah. Please read this note below from our PR person - Kathleen Fowler and it will explain everything. Also, please feel free to forward it to your community. Thanks again for your hard work!!!!
> First of all, thanks to everyone for emailing Oprah. You've done an amazing job!!! > > We keep getting questions about where to post -- in order to reach Oprah.... please spread the word and explain to people "why" we are asking people to do it the way we have instructed. I understand it is not the normal protocol. But there is a method to the madness -- hopefully this email will straighten up the confusion. > > The reason we want to post all these messages on the message board at this link: http://www.oprah.com/community/thread/101903 is because we want to be able to gauge the response! We CAN SEE WITH OUR OWN EYES, how many people are posting messages. Dr. Oz and Oprah's top producer and researcher will see it. > > Yes, the Harpo people are right -- typically people give show ideas at another area of the web site but we need to be able to gauge the response. If you do it the other way, we can't tell Dr. Oz and Oprah's producers that we know, that 1000 people have written to them, because we will have no idea how many people have written him. This is the only way, we can see for ourselves how many people are posting messages. This is why we are asking people to do it this way. > > If people want to send an additional message to the "show idea" link or if they want to email the producers (below) along with the other things they are doing ---- then we welcome it! But we are asking people to spend most of their free time and energy getting friends, family members, doctors, church members, co-workers, Lyme organizations from every country in the world, to post to the above link because we need that number to be BIG! Lyme is now on the front page of Oprah's community page because of all their hard work. Thanks by the way! It's a very big deal! > > So below are 2 possible links. Please the FIRST is the most important. > > *****MOST IMPORTANT --- MESSAGE BOARD LINK (PLEASE MOST IMPORTANTLY POST HERE - THIS IS WHERE WE NEED TO SEE BIG NUMBERS) > http://www.oprah.com/community/thread/101903 > > > Optional EMAIL producers - (optional - email the producers) > https://www.oprah.com/ord/plugform.jsp?plugId!6 > > If you have any questions please contact me at [email protected] > > Kathleen ______________ Eve Morgenstern Producer Open Eye Pictures ________________________________________ Posts: 93 | From NY | Registered: Jan 2009 | IP: Logged |
lakes592 Member Member # 18905 posted 03-03-2009 07:27 PM03-03-2009 07:27 PM ________________________________________ Hi all, As some of you know I have relapsed after 4 years with Lyme disease and have been very sick. My mom is flying out from California tomorrow to help me. I am making a call to action to family and friends.We are trying in the Lyme community to get a show on Oprah discussing Lyme disease and the Lyme disease documentary " Under our skin." We are very close to acheiving this and talks are in the works. We are up to over 700 posts but are shooting for 1,000 on her web site discussion page under Lyme disease. If anyone can help it would be greatly appreciated. Please forward to others who may know someone affected my Lyme disease as well.
Love, Ann ________________________________________ Posts: 55 | From NH | Registered: Jan 2009 | IP: Logged |
jam338 LymeNet Contributor Member # 14002 posted 03-03-2009 07:49 PM03-03-2009 07:49 PM ________________________________________ The Oprah/Oz UNDER OUR SKIN thread count is now 824....keep posting!!!! ________________________________________ Posts: 186 | From SF Bay area, CA | Registered: Dec 2007 | IP: Logged |
[ 03-03-2009, 08:41 PM: Message edited by: Abxnomore ]
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
There are SIX topics on this page for this!!! Yikes! People probably get overwhelmed just by looking at all the subject lines!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
We are up to 844 posts. Keep them coming. This is
really inspiring.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
Yep. I've tried to delete mine, since it is outdated but I just can't go through.
The function to delete it is not working UUGGHHH. Jenifer said it is closed though. But I really want it to be deleted NOW!!!
Posts: 983 | From The sky | Registered: Feb 2005
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bettyg
Unregistered
posted
.... 858 now; almost 1000; then 1500 is the goal!
she deleted mine which i started here letting all know about kris krafts post in activism...
i clicked on link; it was gone.
YES, WE NEED TO LIMIT TO ONE POST ONLY! taken me forever updating those here and then going to mdjunction.org and update that lyme board too!
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
so once we reach 1000 or 1500 then will we email in the show idea? i did both; posted on the message boards and plugged the show idea directly to oprah's staff. i'm still a little confused, as the harpo staff states clearly that the message board is for oprah.com members only, and will not reach oprah directly. ??
this is their exact message on the boards:
Hello, the Online Community is for Oprah.com members to share with other members, to find support, to form friendships etc. If members wish to submit show ideas or share their story with the Producers, then the 'Be on the Show' link from the Oprah.com Homepage is the way to go. Here is a link for your convenience: https://www.oprah.com/ord/plugform.jsp?plugId=216 Thank you for participating in our message boards. I'm sure other members also suffering from this dibilitating disease appreciate that you've shared your story with them. Have a great day and please let me know if I can help answer any other community questions. -HarpoBear, Oprah.com Community Producer
3. Re: Oprah, Dr. Oz and Lyme disease film UNDER OUR SKIN Mar 3, 2009 9:57 AM | In response to: onthemarcm Hello, the Online Community is for Oprah.com members to share with other members, to find support, to form friendships etc. If members wish to submit show ideas or share their story with the Producers, then the 'Be on the Show' link from the Oprah.com Homepage is the way to go. Here is a link for your convenience: https://www.oprah.com/ord/plugform.jsp?plugId=216 Thank you for participating in our message boards. I'm sure other members also suffering from this dibilitating disease appreciate that you've shared your story with them. Have a great day and please let me know if I can help answer any other community questions.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
I suggest that at least one patient soul--with an intact brain-- SAVE to their own computer all the messages currently being posted about Lyme in Oprah's community forum.
There is such a huge outpouring of stories and effort and hope in that one place.... it would be a shame to lose that record, no matter what it is Oprah Winfrey decides to do.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
There are 906 posts now!! Go team!! We can do it!
Dilly, you are right, hopefully someone can save these post stories. I am on slow dial up and bedridden so I can't.
It is obvious that lyme patients and their family members have spent a lot of time and effort to chronicle their story with lyme.
It is a very impressive and intellectually well written thread. Lots of good information on it that is patchwork quilt of stories/experiences/education that should be a real eye-opener for anyone.
Surely, this thread will not go unresponded to. But, no matter what Oprah Winfrey does or doesn't do, hopefully someone can use the stories to advance the ball forward whether it is on this court or another one.
There is content on that thread for anyone doing research for a book, newsletter, newspaper opinion piece.
In fact, after it reaches over 1,000 posts (which should be soon at the rate it is growing) it would be great if those who are capable, could use this foundation as a catalyst reason to fax letters advising about this current thread. It is newsworthy because it is something that is happening NOW.
Send emails with the thread link and/or fax letters with the thread information to:
-"leters to the editor" of your local newspaper and major city newspapers
-local and national TV
-send the link to competitor TV shows....if Oprah doesn't do it maybe someone else will if they see there is such a huge interest. We have to think outside the box!
While many lyme doctors may not be comfortable with posting publicly, they may want to be in the loop to know this is even happening.
Nearly a 1,000 posts no small thing. We will soon cross the threshold of the most posts Oprah has ever received on any subject!
When she did the recent show(s)on bio-identical hormones, she said she knew the subject was controversial, but she had received over 1,000 posts on her website and that many public pleas could not go ignored.
There is a message there for us. They are monitoring, and if we top the number of posts that brought the bio-identical hormone subject show forward.......there is hope she or someone will respond to this outpouring of human tragedy stories.
We should not put all our eggs all in one basket with Oprah though. There is no guarantee she take on this controversial issue just because she did so with the bio-identical hormone show.
We need to use this event and timing opportunity as a new reason to write letters to all the other sources about this outpouring of human stories that is occurring NOW on Oprah.com.
Somewhere someone....the right person....will read it and get the information made public.
At the bottom right of the page click on the highest page number and it will take you to the most recent post page. Each post is numbered, so you can see how many posts have been made.
We can hopefully top a 1,000 soon.....and then keep going.....please tell your family's story.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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bettyg
Unregistered
posted
all i can ever read are 10-15 posts; can't see any of past, etc.
can you? i'd love to read more of these, an no way for me to copy them!!
BUT I AGREE WITH DILLY; SOMEONE OR 2 FOLKS, please copy these.
they deleted before ALL the posts we had over 200 on our previous attempt and redid their board or something similar to that!!!
***
they could also be used in a CLASS ACTION LAWSUIT, and PLEASE GO TO ACTIVISM to read the latest on their by a CHRONIC LYME LAWYER!!!
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Betty, there is a drop down on the site that says
"sort by" right across from replies 920. Click
"newest first" and then next to that "items per
page" click "50" and you should be able to see
every post on the site. When you get to the end
of the page hit next.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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bettyg
Unregistered
posted
abx, i've tried that! i do get current and even if i show 50; i still get only 15-20 and then it cuts off what they are saying!!
also when i posted my 1st 2 posts, it posted computer programming codes vs. my text!!
i don't have any viruses/worms.
it's disgusting!! but thanks for suggestions! i was doing that
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
ok. i'm in the process of doing my best to save all the posts.
the word doc i'm saving them into is now over 550 pages long and i am only on the 700th or so post to Oprah.
Hopefully there will be an intact word document at the end of this process, tho my compujter keeps telling me that i have exceeded Word's memory (heh).
Have no idea where to post the thing if i can capture it all, but anyone who is interested, let me know and I'll try.
PS-- It is WAY too long to post here at LN....
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Wow, it's great that you are doing this. Thank
you so much. I thought about printing it out but
figured it would take a week! I have no clue as to
how to go about saving it. I really think it's
an excellent idea for someone to have all of this
information saved. One never knows when we might
need it. Thanks again.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
Dilly well bless your heart for doing that for us all!!! wow, what wonderful thing to do!! Thank you!!
We are now at 987 posts everyone...good job!!! By tomorrow morning it will be over 1,000 for sure....but, we need to keep going.
The multitude of stories on that thread is just incredible. It is obvious that people have put lots of thought and heart into their posts, especially the ones from parents about their children. Just heartbreaking.
If nothing else gets their attention the parents/children posts should touch a compassionate part of anyone's heart. Let's hope so.
posted
.... 997; 3 more and i just left another post i'm posting below!! 1500 here we come!
tracy, HEARTFELT THANKS FOR DOING THIS on behalf of all of us!
Oprah and Dr. Oz,
HOT OFF THE PRESS last week!!
The latest book, 3 of 3 series IT'S ALL IN YOUR HEAD by PJ LANGHOFF titled:
THE BAKER'S DOZEN & THE LUNATIC FRIDGE!
Has junk science shifted thru the Lyme disease paradigm?
526 pages discussing the IDSA's lyme guidelines, etc. and including OVER 1000 LINKS of info galore on what the IDSA infectius drs. on the panel have done for work: patents, grants, you name it!!
PJ discusses too UNDER OUR SKIN, Pam Weinbaugh's CURE UNKNOWN recent book, and many other things.
I have just started it, and it takes me 5 minutes per page to read the small print for someone like me with LOW vision and try to read/comprehend it after 39 years of CHRONIC LYME DISEASE!
Yes, I've had chronic lyme for 39 years; 34.5 years MISDIAGNOSED by 40-50 drs. with every illness/symptom you can imagine!
Please do a show on UNDER OUR SKIN lyme documentary by Andy Wilson and then have at least TWO follow-up shows because you can NOT begin to discuss the lyme war controversy in 45 minutes only allowing for your commercials!!
Under our Skin deals it like it is and finally the things UNDER THE RUG are brought out into the open and laid into the public's lap.
Oprah, if Stedman or Gale were to be diagnosed with lyme and/or co-infections, you'd be there promptly calling the best drs. in USA and internationally who know the most about lyme disease.
You can afford to help Stedman and Gale and still have many millions and perhaps billions of $$ to help other lyme folks with
EDITED ... with a malaria-like coinfection--- babesia.
note: i can't edit oprah's ONLINE but i can correct my oversight; i get this wrong every time betweens babs and bart; i can't remember. thanks pam!!
But we with chronic lyme, the MAJORITY, can not afford the HUGE OUT OF POCKET $$ for our LLMD, lyme literate MD appts., treatments, driving out of state to llmds where they do NOT exist in our states, lodging/food, labs, and the costs go on and on especially those with IV antibiotics.
* Majority have lost: * their jobs; * their health insurance on what they might pay for NOT lyme related; * their marriages/divorce; * custody of their kids; * homes; * bankruptcy; * homeless; * and the ultimate ... SUICIDE since they can no longer go on due to 24/7 pain, have nothing to live for anymore since it's all gone, and deep depression!
We want our voices heard and shown the RESPECT we deserve instead of the ignorant drs. mentality of, "IT'S ALL IN YOUR HEAD"!!
We want empathy, understanding, a shoulder to cry on or a friend to talk to when we have bottomed out; we don't want anyone's sympathy!
Please do the world a favor and have shows on chronic lyme/co-infections diseases starting with a show on UNDER OUR SKIN lyme documentary.
My heartfelt thanks for doing this Oprah and Dr. Oz!! We so enjoy his shows with you!!
posted
I think the idea of saving the comments from Oprah board is very smart. Before posting them somewhere else however, you need to look into whether there are copyright issues - do all posts become the property of Oprah.com. Just a thought.
I am saving PDF files of all the comment pages. I might be able to provide a home for them on my local support group's website. But would want to look into the legal issue first. Good to have backup copies in case they disappear off Oprah.com.
Thanks for the heads up, I'll be looking forward to the weekend!
All best Dancer
Posts: 227 | From South of the North Pole | Registered: Jan 2007
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Hi Dancer! Good question about the copyright. for myself, had no thought of posting the comments anywhere, just didn't want all that effort to vanish without a trace.
i'm glad you're saving the comments too. PDF file, eh? never occurred to me....
And Betty... we don't even get to ASK about that "whoopie ding!!" ????
Hmm.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
Checked this morning and it is over 1,000. People I have written to are posting this on school websites ect. They have students with Lyme, so it should get even bigger!
Ann
-------------------- If you keep doing nothing...nothing changes!
posted
dilly, sorry, i missed the earlier posts, and my whoopie ding! this explains a LITTLE more about the surprise1!
FLASH UPDATE!! IMPORTANT!!
03/05/2009 11:58 Canuck Lime Green Ribbon Posts: 787 Group Leader
TODAY IS THE DAY GUYS AND GALS!THEY ARE LOOKING TODAY AND TOMORROW AT THIS BOARD- RIGHT NOW THEY ARE LOOKING!!!!! ****************************
IF ANY DAY WERE IMPORTANT IT IS THIS ONE>> POST WHAT YOU CAN NOW!
In the next four hours--DO IT! *********************************
I am so please with the responses but will say again- we almost have that many in this group alone..
So pass it on, beg your family and friends if you have to- send some guilt, whatever it TAKES! I am not ashamed of guilting someone into something at this point...
1057 is the count for now
----------
... 1060 now !! POST, POST, POST!! ***************************************
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Up! Has every one written a post on Oprah's site?
posted
Hi, I noticed it is dying down over there we switched from the first hot topic to the third.
Wanted to say let's keep it going. I made an announcement at the end of the screening Thursday night for " under our skin." Telling everyone the goal and asking them to write in and ask family and friends too as well.
Perhaps this weekend all of us can update family and friends via e-mail on the numbers and ask once again if everyone has done it?
This what I sent out:Hi all, Just an update I have been very sick but my mom is now here from California to help out. I also wanted to update on the status of a possible show in the works on Oprah. The count is now up to 1,128 and the goal is 1,500 so if anyone hasn't posted as of yet, if you could log in and post under the hot topic of Dr. Oz and Lyme or go in under discussion then Lyme disease it would be greatly appreciated! Here is a link to the documentary that is being discussed: http://www.snagfilms.com/films/title/under_our_skin/ reminder to please join in and post to the Oprah show.
Thanks so much, Ann
-------------------- If you keep doing nothing...nothing changes!
you need to register and they send confirmation; you need to click to be signed up and you're ready to go! let's hit 1500; then my next goal of 2000 !!! it's all possible; we got around almost 1000 posts in 1.5 DAYS!!
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
whoa!!!!! Betty...thanks for keeping us focussed!
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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bettyg
Unregistered
posted
...1173 ... now
my guess why we're not on HOT TOPICS is because a few people met in NY last thursday to discuss an under our skin/dr. oz/oprah tv show. NO decision so far, and being strongly considered.
so my guess it is in connection with last week's meeting, and them telling us constantly ... DON'T post there; post on show area!
KEEP YOUR FINGERS/TOES/and anything else you can think of for YES for our lyme tv show!! xox
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Any chance this could backfire and Oprah could make us look like idiots and support the IDSA?
As wealthy as Oprah is, does she have stake in any insurance companies? Just wondering.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Whew..that's good news!@ I'd hate to see this make things worse.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Whew..that's good news!@ I'd hate to see this make things worse.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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bettyg
Unregistered
posted
... 1189 now; almost 1200 and 300 more to go to my next goal!! yippee!
please think POSITIVE THOUGHTS ONLY; 2009 is finally going to be our LYME DISEASE PROGRESS YEAR ...
oprah tv show our 2 legislative bills being put on SCHEDULES of house and senate;
PASSED by both, and signed off by PRES. OBAMA !!
it is possible, and none of us are giving up right! I'M NOT!
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
it's really slowing down to a trickle.. we need more posts!
posted
now 1251; slowing down folks; can we post another 249 to make it 1500 even?? YES, WE CAN; YES, WE CAN xox
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bettyg
Unregistered
posted
Replies: 1,259
folks, we are running out of gas; can we get another 241 to make 1500 posts there? i bet we can since it's the LONG WEEKEND; ok, it's a regular weekend for you. lol
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