Dr. Oz Looking for CFS Patients...

[dannybex]

Someone mentioned this over on Prohealth...

Apparently good ol' Dr. Oz must've felt the heat, as he's now looking for people who have been diagnosed with CFS to tell their story on his show.

Here's the link:

http://doctoroz.com/plugger?tid=1465

Dan


p.s In an ironic twist, they're also doing a show entitled "Is Your Doctor Killing You?"

http://doctoroz.com/plugger?tid=1455

 

[zoe.a.m.]

Ha!

I couldn't help it: that was my immediate response when I saw this thread!

p.s In an ironic twist, they're also doing a show entitled "Is Your Doctor Killing You?"

Is this going to be on the same show? I read the descriptions for his shows a few times a week and the combinations are unintentionally hilarious. Always something like "Top 10 killers, stretching and ice cream taste test!" (I made that combo up of course.)

In another ironic twist, I actually stopped watching his show after the Teitelbaum episode; just never went back! I will make an effort to see this show when it's aired though. Thanks Dan!

 

[Dreambirdie]

Well what do you know! Looks like we may have had an impact after all.

Look what he says on the info collecting page:

"Dr. Oz is doing a segment on Chronic Fatigue Syndrome and the discovery of a new virus that may be causing it.
If you or someone you know have been diagnosed with Chronic Fatigue and are willing to appear on The Dr. Oz Show,
please write and tell us your story."

 

[zoe.a.m.]

"Dr. Oz is doing a segment on Chronic Fatigue Syndrome and the discovery of a new virus that may be causing it.
If you or someone you know have been diagnosed with Chronic Fatigue and are willing to appear on The Dr. Oz Show,
please write and tell us your story."

And yet, there he goes again calling it "Chronic Fatigue" just as Dr. T's site does! I'm really interested to see if/who will apply to be on. There is certainly great potential here! How about Laura Hillenbrand's story? Not that she would necessarily want it broadcast in that venue--or that she could personally appear--but it would be a nice example in that she is somewhat famous and represents those severely afflicted.

I've been thinking about the name thing for, well, 10 years, but a lot more lately. I decided after my last 3 MD interactions that anything with 3 words isn't going to ever be used. Everyone stops after 2 words unless it's an acronym (for something scary sounding like peripheral artery disease or others like that). I was just running names through my head and couldn't hit any conditions that were 3 words long (and with the last word being "syndrome"). Well, there's Multiple Chemical Sensitivity which pretty much gets called MCS or chemical sensitivity--and therefore--isn't too serious.

Sorry for the tangent!

 

[Dreambirdie]

Mikovits in OZ

NEWS UPDATE FROM W.P.I. RE: DR OZ SHOW:

I just spoke with Frankie Vigil, the media coordinator at the WPI. She received an email from the Dr Oz show yesterday. She has spoken with the medical unit director of the Oz show, and is going to connect him with Judy Mikovits.

She will email me any further news that comes up about this, and I will post it.

 

[misskoji]

How awesome!

I wonder how many of us wrote in? I sent off a long rant myself, hehehe.

Thanks Dreambirdie for the update! Dr. Mikovits on the Dr. OZ show? How awesome is that!!!!!

 

[SeaShel]

A Thought

Maybe use the "Poll" function for us to keep track of who writes in? It can be anonymous, would strictly be to give us all an idea of numbers.

The other interesting thing will be to see if any of us get a call from a Dr. Oz producer. Several years ago I responded to an Oprah future show posting and got called about 15 minutes after I hit the "send" button (wasn't an me/cfs subject of course). I had to email more info and some pix. We weren't chosen to be on the show and it was interesting to see the show when it aired and see who they did pick.

If Dr Mikovits does appear, at least we can be assured of it not being another Teitelbaum fiasco (in theory anyway!)

 

[leelaplay]

Dr. Oz is doing a segment on Chronic Fatigue Syndrome and the discovery of a new virus that may be causing it.

If you or someone you know have been diagnosed with Chronic Fatigue and are willing to appear on The Dr. Oz Show, please write and tell us your story."

And yet, there he goes again calling it "Chronic Fatigue" just as Dr. T's site does!

Good catch zoe.a.m.!

I'm impressed actually that he is responding so quickly and trying to do a good job it seems, but this just shows you how far they have to go! But since "they" are probably even more aware than the general public, and will reach a large segment of the public and medical profession, I'm all for spending energy trying to help them do a good job and get it right!

Thanks for finding this danny!

dreambirdie - great savvy throughout connecting them with WPI.

Now, 1st reaction, without thinking it through and not being familiar with the whole field of ME/CFS and who's who etc, my dream team would include:

Patients: Cort, Laura Hillenbrand, some of the extemely articulate patient participants at the recent CFSAC meeting +?

Patient Advocates: Mrs. Whittemore, Dr Friedman +?

Drs who have been treating it: Dr Bell, Dr Peterson +?

Canadian Definition authors: Dr Carruthers

XMRV: Drs Mikovits, Klimas, Coffin, Donica Moore

People with theories: Dr Freitas +???

Advocacy: Tom Kindlon

Government: Mike ? from CDC, +??


islandfinn

 

[margib]

Anybody ever attempt to get on that show "The Doctors?" sorry if there has already been a thread. Dr. Travis is dreamy.

 

[KC22]

Dreambirdie

I have to give you a shout out for all of your work in mobilizing us to write Dr. Oz.... I sent him an e-mail after his show and in a large part due to your organizing and keeping us posted.

Thanks for your determination!!!!

 

[Dreambirdie]

I.F--Just to let you know the producers did express some interest in Dr Peterson, but for now it is ALL STILL UP IN THE AIR.

It took them three weeks to get back to Frankie at WPI, and she put in MANY calls. But I do think it is a good thing that they are showing some genuinine interest now IN THE RESEARCH. That is actually really really good.

Over and out ... and OFF OFF OFF the dag-nam computer.
I really mean it. ~DB

 

[leelaplay]

I.F--Just to let you know the producers did express some interest in Dr Peterson, but for now it is ALL STILL UP IN THE AIR.

It took them three weeks to get back to Frankie at WPI, and she put in MANY calls. But I do think it is a good thing that they are showing some genuinine interest now IN THE RESEARCH. That is actually really really good.

Over and out ... and OFF OFF OFF the dag-nam computer.
I really mean it. ~DB

thanks dreambirdie - get off the computer - do - do - and take me with you!

FYI - I just emailed Dr Donnica Moore to thank her for the Good Marning AMerica segment and to ask her to see about being on Dr Oz.

OK OK I'm gooooooooooooooooiiiiiiiiiiiiiiiiiiiiiiiiinnnnnnnnnnnnnnnnngggggggg

if

 

[dannybex]

Paging Dr. Moore...

I also nominate Dr. Donnica Moore to be the guest expert -- she lives in New York where the show I believe the show is taped, her child has CFS/ME, and she seems to be able to get out the most information in the least amount of time -- something that is important on a show like Oz's.

She'll also no doubt be able to mention the XMRV findings while being objective about them at the same time. Besides, Mikovitz is probably waaaay too busy to appear on any show, let alone the Wonderful Wizard of Oz's.

I also want to thank Dreambirdie for her passionate efforts to get everyone to write the show or post on his website. It had to have made the difference.

We'll see what happens.

Dan

 

[_Kim_]

Yay dreambirdie

I have to give you a shout out for all of your work in mobilizing us to write Dr. Oz.... I sent him an e-mail after his show and in a large part due to your organizing and keeping us posted.

Thanks for your determination!!!!

Ditto on the shout out to dreambirdie. I would never have written to Dr. Oz. I don't have a TV and had never seen the show (still haven't). But you have a way of recruiting that was so persuasive. Great work db!!

I hope the producers choose good patient representatives. I sort of considered responding as I am nearby in NJ, but I have only recently been diagnosed. As a result, I'm not that that informed. Everything I know about CFS, I learned here

 

[Dreambirdie]

Thanks Kim and Dan--

I think Dan's and IF's idea about contacting Donnica Moore is a really good one.
I have dropped her a note, and encourage you all to do the same.

For your convenience, Donnica Moore's email is below, along with a copy of my letter to her.

drdonnica@aol.com

Dear Dr. Moore--

I am a PWC with long term CFS (32 years). I am also a very active member of a large online CFS forum. Recent discovery of the XMRV virus has mobilized some of us to be more active regarding the media's response to CFS, and particularly lately to Dr Oz, regarding his recent (10/23/09) show on CFS. During this show, CFS was basically reduced to a symptom, clumped together with the general theme of EXHAUSTION, described as a "new" disease, and concluded by his guest expert (Dr. Jacob Teitelbaum) to be "very treatable" by supplements, and by dietary and lifestyle changes.

These simple conclusions, as you know, are COMPLETELY INACCURATE, highly misrepresentative of CFS, and stood to be in serious need of correction. Many PWC's wrote to Dr. Oz regarding this issue, and he has responded favorably, by planning to do another show on CFS. His producers have already contacted the WPI folks, regarding the new XMRV research, and are planning to possibly include Judy Mikovits as a guest expert.
See this link: http://doctoroz.com/plugger?tid=1465

I am writing to you to request that you also please CONTACT DR. OZ regarding the new XMRV discovery and its implications for those of us for CFS. I have seen you speak twice about CFS on GMA, and was very impressed with your understanding and delivery on this topic. We PWC's need doctors like you, to help us get the word out to the popular media regarding this condition. If you could be on the Oz Show, this would be a dream come true.

Thank you, and keep up the great work.

 

[leelaplay]

Thanks Kim and Dan--

I think Dan's And IF's idea about contacting Donnica Moore is a really good one. I have dropped her a note, and encourage you all to do the same.

For your convenience, Donnica Moore's email is below.

drdonnica@aol.com

duh - I knew there was something I had forgotten - her email - even had it copied, ready to paste..............

thank you dreambirdie!

if

 

[Sing]

Thank you, Dreambirdie--fantastic letter!

Cecelia

 

[Andrew]

I don't know if I jumped the gun, but I just sent the following to the Dr. Oz show via their interface for finding pwc:

I have been suffering from Chronic Fatigue Syndrome (CFS) since 2005. If you air a show about CFS that includes a doctor, I suggest that the doctor be a genuine expert. I suggest Dr. Peterson from the Whittemore-Peterson Institute (http://www.wpinstitute.org/). Not only has he been working with CFS since the 80's, his new institute recently made news by identifying a new strain of a retrovirus that had previously been thought to occur only in a subset of men with prostate cancer. He found the new strain of this retrovirus and/or antibodies in the blood samples of people with Chronic Fatigue Syndrome. But if he is not available, I trust whoever his institute would recommend.

I also hope the producers of your show and Dr. Oz realize that the name for Chronic Fatigue Syndrome doesn't describe the illness, and that this name has caused endless confusion and a dismissive attitude about our illness. I also hope you understand that one doesn't have to look sick to be sick. We suffer the same range of disability as people with Multiple Sclerosis, and like them, we can look like we are completely healthy.

 

[Marylib]

Dr Donnica

Oz will probably not have Dr Donnica on -- she is competition most likely, as she is on tv too.
Keep in mind -- it's all showbiz folks! It sure isn't science, though the two lines of endeavor may occasionally intersect at certain points.

 

[caledonia]

If Oz was smart, he would bring in some patients via Skype and explain how they are too sick to travel. Laura Hillenbrand would be a good candidate for this.