Dr oz preview - "simple stretching for xmrv"

[DrDonnica]

Will the XMRV virus show be today? I thought it was going to be on Thursday (Dec. 3). Will he be showing 2 shows on this topic?

Why in the world would he think exercising would get you better? I do not even have CFS/ME but I have relatives that do and it was easily observable that exercise or exertion made them worse.

The Dr. Oz Show will air on
Thurs. Dec. 3. Yes, I wanted to explain post-exertional malaise and the concept of mild exercise when a patient is not in a flare up, but I was told we couldn't go there.

 

[MEKoan]

Thanks much, Dr Donnica, for that illuminating summation. We know you did all that was humanly possible.

Thanks for being such a fine and intelligent spokesperson on behalf of all with ME/CFS. Your efforts are much appreciated!

I wish you and your family the very best!
Koan

 

[DrDonnica]

It's a good thing we have not lost our sense of humour

I think we're going to need it.

Another differentiating fact between CFS & depression! I was so prepared to discuss the differences between CFS & depression on the Dr. Oz Show, but didn't get to cover that topic. I had it down to 3 great sound-bites. Oh well--I'll have to wait for Oprah to call. . .!

 

[DrDonnica]

My jaw is still wide open - I can't believe this guy. Well, I guess I can - but truthfully he sounds like a moron. Are we surprised? I guess not - what GOOD doctor spends his days taping tv shows to appeal to the masses? Clearly, none...

It's just frustrating because this is what family/friends will see and think 'oh yeah, that's what I saw on Oz and it's not a big deal - you can exercise and it will go away." Out of curiosity - is there ANY virus that is helped by stretching?

Moron.

In defense of Dr. Oz, he is a VERY good cardiovascular surgeon, but CFS is not something he treats/knows much about/etc. Much like most other doctors. The Fox interview was clearly unscripted and an upcoming "preview" of several segments designed to get people to tune in. Give him a chance. . .and give him credit for recognizing that this was important enough to preview. We all mis-speak occasionally on tv as well: I even totally spaced out in the middle of one of his questions & "forgot" what the question was! (and I don't have CFS--just "normal" sleep deprivation & fatigue). I didn't acknowlege that though, & just went "off" on a tangent about how medical schools aren't even teaching about CFS & doctors need to take more responsibility for their own Continuing Medical Education. We'll see if they edit that out!

 

[MEKoan]

Oh well--I'll have to wait for Oprah to call. . .!

LOL!

You will be great, I have no doubt!

Koan

 

[Andrew]

I don't know what Dr Donnica told him, but I think any talk show guest who really wants to support us should refuse to get sucked into the fatigue paradigm. And the first thing they should do is give an analogy about how stupid the name is, then give examples of how bad this can be (cancer, not being able to walk, etc.), and then present it as a multi-symptom illness. They should never present it as fatigue plus some miscellaneous symptoms.

 

[MEKoan]

Hi Andrew,

It's easy to overestimate the amount of control the guest has. In actual fact, the guest has no control and very limted influence unless the show is live and Oz is not.

It's really not possible to imagine how little control one has unless one has been there.

There is simply no way to "give" what you wish to give because they take only what they want to take.

peace out,
koan

 

[Dreambirdie]

Thanks for calling this segment to my attention.

I do agree that even on the Fox interview--even though the tone was inappropriately light-hearted--that any increased awareness of CFS as a "real" disease--especially in association with the biologically based viral concept and from "America's favorite doctor"--is helpful overall.

And when these news outlets get letter/emails from patients concerned about incorrect or misleading information, they really do pay attention.

THANK YOU DR DONNICA!

I am SO GLAD you were the chosen "expert" this time around, and I know you did all you could to get the TRUTH across.

I agree with you that getting our foot in the door on this issue is better than no foot at all.

AND

I am now sure that attention is paid to complaints about misleading information. I think that Dr Oz REALLY WAS motivated to do another show, due in part to the pressure he got from us (on the forum), and others who live with CFS, and from the WPI folks bugging him for weeks to do that interview with Judy Mikovits.

In the big picture I think we all DID GOOD!

Don't forget, revolutions do not happen overnight. It took ages for people to change their minds that leprosy was NOT caused by demonic possession.

 

[DrDonnica]

Dr. Oz is unable to understand that this isn't tiredness--or perhaps unwilling to."

All I can ask is that we give Dr. Oz a little more credit until we see the segment on Thurs. In all fairness, he did specifically ask me to address the difference between women who are just tired all the time versus those who have CFS (I said that those who are tired would feel a lot better with a 3 day vacation & a babysitter). And he isn't responsible for misnaming this condition. We don't want to take out all of our frustration on someone who was legitimately trying to raise awareness of this condition and to improve understanding. As far as the patient, she looks terrific. But she did say that she has considered suicide due to her illness. And I did tell her to say explain how it's like having a severe case of the flu that doesn't go away. And to the show's credit: when I explained to them before hand how taxing it would be for a PWC to travel to the show (my son couldn't go because he was bedridden), they offered to put her up for a few days before AND after the show in NYC before she had to travel back to NV. I thought that was very nice.

 

[DrDonnica]

Unfortunately, people may hear, and repeat, more about the Oz show than all the coverage in the NYT.

Remember: the NY Times was the one to name CFS "the yuppie flu" 20 years ago. . .

 

[Dreambirdie]

All I can ask is that we give Dr. Oz a little more credit until we see the segment on Thurs.

Yes, agree.

I think we (including me) have overreacted here a bit. It would be good if we waited to see the show segment, BEFORE we rush in to complain...
about what we don't yet know for sure.

Something about BEING IN MOMENT would be a good idea for now.

 

[MEKoan]

Remember: the NY Times was the one to name CFS "the yuppie flu" 20 years ago. . .

True enough, maybe that wacky upstart NYT has legs after all.

 

[DrDonnica]

Hi Andrew,

It's easy to overestimate the amount of control the guest has. In actual fact, the guest has no control and very limted influence unless the show is live and Oz is not.

It's really not possible to imagine how little control one has unless one has been there.

There is simply no way to "give" what you wish to give because they take only what they want to take.

peace out,
koan

Thanks Koan for explaining that. The other issue when you are a frequent TV doctor-guest is that you have to balance the feeling of frustration with not being in control with the potential benefit you can do with the bit of time/input that you do have. You also have to develop a pretty thick skin because you know that you will be disappointing a number of people most of the time. The nature of the beast (tv) is that time is very limited. . . & you never know when your last comment will be. So the trick/challenge is to get the most important thing in first. We don't have the luxury of building a story from start to finish.

 

[Andrew]

I think, then, the patient community is going to have to give him an earful. Can you imagine if he did a show about flu season and refused to talk about anything but fatigue management.

The "CFS" name is killing us. Even the presence of a retro-virus doesn't persuade.

Thanks for calling this segment to my attention. Dr. Oz's "agenda" is patient empowerment, & he really "wants" to call attention to things patients can do to help themselves. While I appreciate his motivation & his boundless enthusiasm, he sometimes jumps to an untenable conclusion. I was able to influence this A LITTLE on the show. For example, one of the things they wanted to cover was a list of "solutions". I argued that there aren't any known "solutions" currently, so I got them to change that to "tips". I "gave in" on offering some nutritional tips & went with the 3 things he asked me to cover there, but you'll see that I really stumbled. He really wanted to say "do as much exercise as you can" & I got him to couch that as "even if it's only walking to the mailbox". While it is true that many PWC do better with MILD exercise, many can't get to step one. Nor is this a "treatment" or a "cure" (as we know), but something that helps A LITTLE BIT. (I thought it was a major victory yesterday that I got my son on the treadmill for 5 minutes yesterday!). I will warn you that I was specifically told that we didn't have time to go into the symptoms of the case definition beyond fatigue (but I did jump in when the patient talked about cognitive impairment, so I offered up "brain fog"), but that they would post "more info" on their website (I offered to write the article, but wasn't taken up on that yet). This having been said: I do agree that even on the Fox interview--even though the tone was inappropriately light-hearted--that any increased awareness of CFS as a "real" disease--especially in association with the biologically based viral concept and from "America's favorite doctor"--is helpful overall. And when these news outlets get letter/emails from patients concerned about incorrect or misleading information, they really do pay attention.

 

[gracenote]

pithy response

I don't know what Dr Donnica told him, but I think any talk show guest who really wants to support us should refuse to get sucked into the fatigue paradigm. And the first thing they should do is give an analogy about how stupid the name is, then give examples of how bad this can be (cancer, not being able to walk, etc.), and then present it as a multi-symptom illness. They should never present it as fatigue plus some miscellaneous symptoms.

I agree with you Andrew. As soon as the name chronic fatigue syndrome is mentioned there needs to be an instant counter to it. Can anyone come up with a pithy one sentence response that could be repeated over and over by everyone who comes into contact with the media?

Chronic fatigue syndrome is not about fatigue, it's about . . .
Chronic fatigue syndrome is . . .
Chronic fatigue syndrome, a debilitating ___________ disease . . .

Not awake yet. Need help.

 

[MEKoan]

Dr D,

It's your experience and your understanding of the medium that makes you so kick-ass. I don't think anyone can pack as much pertinent and well articulated information into a segment - live or no - as you can.

You absolutely know what you're about and we are very lucky to have you. Make no mistake about it, we know that.

Thanks you!

 

[Dreambirdie]

As soon as the name chronic fatigue syndrome is mentioned there needs to be an instant counter to it. Can anyone come up with a pithy one sentence response that could be repeated over and over by everyone who comes into contact with the media?

Chronic fatigue syndrome is not about fatigue, it's about . . .
Chronic fatigue syndrome is . . .
Chronic fatigue syndrome, a debilitating ___________ disease . . .

Not awake yet. Need help.

Hi Gracenote--

In the Oz Show talking points I came up with with Dr Donnica, the first one was:

CFS is not the same as fatigue. CFS is a DEBILITATING NEURO-IMMUNE DISEASE.

I hope that made it on the air!

 

[dannybex]

I will be curious to see how the final edited version came out & interested to hear your comments, even though I know there are things I coulda, shoulda, & woulda said better, etc.

Dr. Donnica,

You have nothing to apologize for.

With all the input you and others provided them ahead of time, it was still Oz and Company, not you, that limited what could and perhaps should have been at least mentioned, let alone discussed. The show is 40 minutes long (plus commercials) so how they could argue that they didn't have enough time, just doesn't hold water.

All of this may just have a silver lining, as if the show turns out poorly, no doubt he'll be flooded with even more emails.

With great respect,

Dan

 

[Andrew]

Thanks Koan. I posted before I read Dr. Donnica's explanation of how they tied her hands.

Hi Andrew,

It's easy to overestimate the amount of control the guest has. In actual fact, the guest has no control and very limited influence unless the show is live and Oz is not.

It's really not possible to imagine how little control one has unless one has been there.

There is simply no way to "give" what you wish to give because they take only what they want to take.

peace out,
koan

 

[sosumi]

Next Target...

Our next target should be someone like Tim Johnson on 20/20 or Nightline.