help get XMRV on Oprah

[fresh_eyes]

Hi everybody. Inspired by dreambirdie and her success getting XMRV on Dr Oz, and the fact that he did a good job with the topic, I'm going to write to Oprah asking her to do a show on it.

I'm going to offer suggestions for guests who will emphasize the heroic stories that surround the topic: the Whittemores forming their own Institute to find a cure for their daughter; Dr Peterson who has devoted his life to CFS in spite of the opposition; Dr Mikovits who took a risk with potentially "career killing" research; and Chris Hempel, mom of the "childhood alzheimer's" twins (which also shows that XMRV is about more than just CFS).

Anyway, I invite you all to join in the lobbying effort. The online form for show suggestions is here:

https://www.oprah.com/ord/plugform.jsp?plugId=216

 

[misskoji]

Thank you

Fresheyes, thanks for starting this up. Hopefully this will work out! I'll write in when I have a little more cognition.

 

[Recovery Soon]

Hi everybody. Inspired by dreambirdie and her success getting XMRV on Dr Oz, and the fact that he did a good job with the topic, I'm going to write to Oprah asking her to do a show on it.

I'm going to offer suggestions for guests who will emphasize the heroic stories that surround the topic: the Whittemores forming their own Institute to find a cure for their daughter; Dr Peterson who has devoted his life to CFS in spite of the opposition; Dr Mikovits who took a risk with potentially "career killing" research; Dr Donnica whose husband and son have the disease; and Chris Hempel, mom of the "childhood alzheimer's" twins (which also shows that XMRV is about more than just CFS).

Anyway, I invite you all to join in the lobbying effort. The online form for show suggestions is here:

https://www.oprah.com/ord/plugform.jsp?plugId=216

YES...YES...YES!!!!

Keep the steam up...Everyone please write a letter!!!

I will today!

There is so much momentum right now...this could tip the issue over.

(In your letters please clarify how the condition has been misunderstood- make sure the "neuro-immune" talking points are included so we don't get another hack piece, that confuses fatigue with CFS.)

 

[Dreambirdie]

Great idea fresh eyes!

I want to make contact with Anne Whittemore somehow, and pitch this idea directly to her. If she could send in a video testimony of her story, including shots of, and a few statements from her sick daughter, and tell how the Whittemores crated an Institute to find a cure for their daughter, it would be VERY powerful!

Oprah's focus is always on THE STORY, not so much on THE ISSUE. So that's where it seems the angle should be.

 

[Lily]

And we are off!!!!!!!

Yahoo!!!!!!!! Kudos to you........I want to help as much as my brain and bod will allow! And Dreambirdie I think you are right about the approach....ummm teambrain will get this done!

 

[fresh_eyes]

I want to make contact with Anne Whittemore somehow, and pitch this idea directly to her. If she could send in a video testimony of her story, including shots of, and a few statements from her sick daughter, and tell how the Whittemores crated an Institute to find a cure for their daughter, it would be VERY powerful!

Wonderful idea, dreambirdie, that would be amazing. You could probably reach them easily through the WPI Facebook page - I think both Annette and Andrea post there.

 

[fresh_eyes]

Perhaps we should lay out our basic talking points here, for reference.

Suggestions so far:

1. Story of the Whittemore family: the establishment couldn't do anything for their daughter, so they founded their own institute - and succeeded in finding a huge medical breakthrough.

2. CFS is a "neuro-immune disease", nothing to do with regular fatigue.

3. XMRV is more than just CFS, it's implicated in other conditions like prostate cancer and Neimann Pick C

All of those seem very important to me. Other thoughts? How CFS has been mishandled by the CDC? Name and definition problems? Drs and scientists who didn't accept the "psychosomatic" explanation, and have been vindicated? Danger to the blood supply?

 

[kristin]

This is such a great idea. I have just FB and tweeted so hopefully she will be receiving many, many requests.

 

[Recovery Soon]

Oprah's focus is always on THE STORY, not so much on THE ISSUE. So that's where it seems the angle should be.

Very astute observation.

 

[kristin]

Hi everybody. Inspired by dreambirdie and her success getting XMRV on Dr Oz, and the fact that he did a good job with the topic, I'm going to write to Oprah asking her to do a show on it.

I'm going to offer suggestions for guests who will emphasize the heroic stories that surround the topic: the Whittemores forming their own Institute to find a cure for their daughter; Dr Peterson who has devoted his life to CFS in spite of the opposition; Dr Mikovits who took a risk with potentially "career killing" research; and Chris Hempel, mom of the "childhood alzheimer's" twins (which also shows that XMRV is about more than just CFS).

Anyway, I invite you all to join in the lobbying effort. The online form for show suggestions is here:

https://www.oprah.com/ord/plugform.jsp?plugId=216

Great idea fresh eyes!

I want to make contact with Anne Whittemore somehow, and pitch this idea directly to her. If she could send in a video testimony of her story, including shots of, and a few statements from her sick daughter, and tell how the Whittemores crated an Institute to find a cure for their daughter, it would be VERY powerful!

Oprah's focus is always on THE STORY, not so much on THE ISSUE. So that's where it seems the angle should be.

I am working very closely with a woman from WPI for my daughters fundraiser. If you think that type of contact is a good place to start to pitch your idea let me know.

 

[Recovery Soon]

I am working very closely with a woman from WPI for my daughters fundraiser. If you think that type of contact is a good place to start to pitch your idea let me know.

That's a Great place to start!

(I know this is putting the cart before the horse, but if we can manage to get OPRAH, the next step is 60 Minutes, with the CDC misappropriations and patient mislabeling as the hook.)

 

[Martlet]

Another person who might be a good bet is Rachel Maddow. I would think she would be more interested in the way patients have been maligned by the CDC. I have fed stories to her and Keith Olbermann in the past, but feel ill-equipped to tackle this one as I've been out of the loop for so many years. But these two have a large following of politically active people. It is one thing to reach housewives (not maligning them - I am one) and quite another to reach those who take up causes and advocacy.

 

[Dreambirdie]

but if we can manage to get OPRAH, the next step is 60 Minutes, with the CDC misappropriations and patient mislabeling as the hook.)

Actually I have already written 60 MINUTES, as they requested it from me when I sent them an email. So have the WPI folks--several times. I asked Dr Donnica to do so as well. She hasn't gotten back to me yet about it. She's a busy lady... so maybe soon.

I will post my 60 MINUTES letter on a separate thread some time in the next few days. That way it will be easy to find.

Right now I really need a break from the computer. It makes my nerves very jittery and wiggy to be on it too much. Tho it is HARD to resist.

 

[kristin]

If my contact would help, maybe we should take this offline to discuss? She won't be back in the office until Tuesday so let me know

 

[anne]

If you are emailing Oprah people, you might send them the NYTimes article about the Whittemores, with a summary of it up top.

 

[Recovery Soon]

If you are emailing Oprah people, you might send them the NYTimes article about the Whittemores, with a summary of it up top.

Great idea.

I personally think, Oprah only bets on winners. That's why she has ignored this for so long . If she thinks this is en vogue, she'll lead the charge.

WPI findings, NY Times coverage, and Oz could be enough of a signal.

 

[cold_taste_of_tears]

Hopefully Oprah would be less dominating than Doctor OZ, he did insist on saying EXERCISE at the end, which was rather uninformed of him to do so as exercise makes the inflammatory/cognitive/sensory/cardiac symptoms worse.

It's a pity Donnica was rail-roaded by his direct and quite loud and commanding speech, but she gave her best shot and it was amazing to see the CFS patient say she tested positive, which removed some of the doubt.

To me that was the most important thing, that any bad advice although annoying, is less damaging now there is a test brewing in the lab.

It did make me ponder that the patients worst experience was experiencing a rude comment by a disbeliving doctor, and the camera panned to the audience who looked shocked. (Little do they know what can happen - e.g. get your door kicked in by Police and locked in a Psych ward). Also children being taken by the state, and parents accused of Munchausen's by Proxy. That could/should have been mentioned.

I wonder why they didn't chose someone who had been ill for 10, 20 years? Could have had a guest in a wheelchair, or even done the interview by Ambulance.
I guess severe people remain invisible - and people on stretchers can't fit in with the EXERCISE advice!

Lets hope if Oprah did do XMRV, she does allow the reality of the disease to be shown, visually and discussed and talked about.
I think her style of show is much more appropriate (Ironically) for XMRV than the Dr Oz Show.

 

[kristin]

Hopefully Oprah would be less dominating than Doctor OZ, he did insist on saying EXERCISE at the end, which was rather uninformed of him to do so as exercise makes the inflammatory/cognitive/sensory/cardiac symptoms worse.

It's a pity Donnica was rail-roaded by his direct and quite loud and commanding speech, but she gave her best shot and it was amazing to see the CFS patient say she tested positive, which removed some of the doubt.

To me that was the most important thing, that any bad advice although annoying, is less damaging now there is a test brewing in the lab.

It did make me ponder that the patients worst experience was experiencing a rude comment by a disbeliving doctor, and the camera panned to the audience who looked shocked. (Little do they know what can happen - e.g. get your door kicked in by Police and locked in a Psych ward). Also children being taken by the state, and parents accused of Munchausen's by Proxy. That could/should have been mentioned.

I wonder why they didn't chose someone who had been ill for 10, 20 years? Could have had a guest in a wheelchair, or even done the interview by Ambulance.
I guess severe people remain invisible - and people on stretchers can't fit in with the EXERCISE advice!

Lets hope if Oprah did do XMRV, she does allow the reality of the disease to be shown, visually and discussed and talked about.
I think her style of show is much more appropriate (Ironically) for XMRV than the Dr Oz Show.

But Oprah loves to Skype. She can interview someone in bed as long as they are able to talk.

 

[Recovery Soon]

Eventually everything will come out in the wash.

ALthough there were missteps, OZ shined a light on a DISEASE, which is what we want- IT's a Huge Victory.

Some people were upset that he said 95% instead of 67%- No one will ever be fully satisfied with any of the coverage- but as long as it is being taken serious, we are on the right track.

Oprah would be huge.

 

[fresh_eyes]

Thanks everybody for all your enthusiasm and great ideas!!!! It makes me happy to be part of this community of lovely, thoughtful people.

I agree with Recovery Soon that, in spite of some flaws, the Dr Oz show was a great victory. Everybody who watched that show is going to at least remember that CFS is caused by some kind of retrovirus and not "all in your head" - yay!

Also I agree that Oprah loves a winner, and will love the Whittemores - that's probably the angle for her, with just a tiny bit of background on other facets of the issue. The NYT article that focuses most on the Whittemores' story is here:

http://www.nytimes.com/2009/11/12/giving/12SICK.html?scp=1&sq=whittemore&st=cse

Other facets of the story (political, medical, scientific) are probably best addressed by other media outlets. Here are contacts for some y'all have mentioned:

Rachel Maddow:

rachel@msnbc.com

Keith Olbermann:

countdown@msnbc.com

60 Minutes:

60m@cbsnews.com

Frontline:

http://www.pbs.org/wgbh/pages/frontline/contact/

Also, I'm a big New Yorker reader and have wondered if we could get one of their wonderfully smart, articulate, and thorough writers to do a piece on the entire situation. I've got my eye on Jerome Groopman or Atul Gawande - anybody else have thoughts on this?