Dr oz preview - "simple stretching for xmrv"

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Well, guys, I had no problem with it. Stretching is good, when compared to laying in bed for weeks and not doing anything. He didn't say aerobics, he said "even stretching" as though.... If that's all you can do, then that might help some.

I think his term of "get body going again" was referring to getting the body systems going again. Part of CFS for many of us is that the limbic system isn't working to take toxins out, so a massage or stretching may help with that. He said "some things you can do" He didn't say cure.

I do think the anchor's comment is unfortunate and reflects ignorance. But Oz corrected her, telling her she is energetic and she likely doesn't have it.

I hope they show the range of sickness. While I hope someone severely ill is on there to show people how truly debilitating it can be, I also hope they show someone not so severely ill so people will think, "Hey, that's me" and go get help before they do more damage by pushing themselves.

Most of us on this board are so sick we can't work. But some are working and just notice they have to rest every day when they come home, spend the weekend around the house, in and out of bed, and occasionally miss a work day. Many of those moderately ill people have been told they have depression.

In my view, the best result that could come from Dr. Oz's show is not for the severely ill, only research and a cure will help us (and funding for such). So the show is for the rest of the people.

Maybe it will validate the illness and educate our family and friends who just can't believe we are sick because of the way we look on the occasion that we leave the house. I understand they will have a patient on there who has tested positive to the virus. This is likely someone who was severely ill since they have already had the test. So that will be good.

I like the way he mentioned that 10 million may have the virus but only 5 million (est.) are sick. I think that shows it is more of a public health concern than just us CFS folks. Maybe that will mean more government money. (don't hold your breath)

Tina
 

Dreambirdie

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Hi Tina,

You made some good points.

Maybe it's a good idea to wait and see what happens on the show this Thursday.

It's not over til it's over.
 

fresh_eyes

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Seems like this is what Dr Hairdo (love that!) does with most topics - starts off with some actual science, then shifts gears use it as a pretext to offering some basically unrelated general health advice. ("New retrovirus. Don't forget to eat those veggies!") His take on epigenetics:

http://www.huffingtonpost.com/dr-mehmet-oz/flicking-the-switch-the-p_b_373026.html

"Genes turn off and on. Don't overeat!"

Good advice in general - just not relevant to the topic at hand.
 

MEKoan

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Are we surprised? I guess not ...

-edit-

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."
It's very frustrating. This is not good for us. Unfortunately, people may hear, and repeat, more about the Oz show than all the coverage in the NYT. I predict a huge upsurge in exercise advice and advice from people who believe if we just do X, we will be fine.

We really have to understand that those who don't get it really don't get it and cannot be trusted to speak about it.
 

MEKoan

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I like the way he mentioned that 10 million may have the virus but only 5 million (est.) are sick. I think that shows it is more of a public health concern than just us CFS folks. Maybe that will mean more government money. (don't hold your breath)
Tina
I don't know, Tina. This could also be understood thusly: 10 million people have it but only 5 million people are complaining about it. So, it's not such a big deal if you stretch and eat right and only those people who have done something wrong have a problem with it.

We'll see when it airs, I guess. I really hope my expectations are not met!

peace out,
Koan
 

Dreambirdie

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I really hope my expectations are not met!
Me too.

Don't forget, Dr Donnica WAS the "expert" chosen for the show, and they also have an XMRV positive patient (Gina) on the show, who was prepped by the WPI folks prior to the taping... and Dr Donnican did tell me Gina was "REALLY GOOD."

So the jury is still out on this one.
 
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SDD1244

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I hate to say this, but I'm not too surprised. Isn't Dr. Oz friends with Dr. Teitelbaum ?
 

mezombie

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Why am I not surprised?

Dr. Oz (and Oprah) pander to their audience, and their audience wants to hear about things they can do -- exercise, diet -- to stave of or mitigate illness. They don't want to hear about anti-retroviral drugs, severely ill people or other matters that are "scary".

Several attempts have been made over the past 20 years I've been ill to get our disease covered by Oprah, and now Dr. Oz. Both shows have covered it. None of the segments broadcast has helped us one bit.

I know many people watch these shows. I'm just not sure they are at all interested in the XMRV and ME/CFS connection.

This is not a great venue for serious medical conditions that leave people debilitated. Dr. Oz's audience does not want to see us.

Consider AIDS. Has Oprah or Dr. Oz ever trotted out an HIV/AIDS patient? Even now, when HIV/AIDS has become a chronic illness due to drug therapy?
 
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anne

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Dr. Oz is unable to understand that this isn't tiredness--or perhaps unwilling to. Everyone is tired, and he's speaking to that everyone, he's speaking to his audience, not actual sick people. It's medical self-help, at the expense of people who are really ill. But this is what the name allows--it gives some permission to sneer at CFS patients. (After all, they're tired, too, and you don't hear them whining about it.) And it lets others feel their tiredness is validated (I have trouble getting going! I have a syndrome! there's a retrovirus!) and perhaps treatable. (Supplements! Stretching!)

It's the CDC Smoke and Mirrors--naming and defining the disease into something ordinary, something meaningless, and then--presto!--it no longer exists. There's no unsolvable chronic illness that doctors can't treat and can ruin someone's life. Medical science knows all. Everyone's tired, see? That's all it is. Doctors like Dr. Hairdo are willing participants in this grand deception. No, don't look at the sick people, they say, look over here! You're tired, right? Here, I can help you! Look at the SHINE-y object!...

So Dr. Donnica and the patient will be working within these parameters. But it's going to be hard when the people framing the interview don't accept the basic premise that people are really sick.

{EDIT} I think Marie is right. These people don't do shows on MS or Lupus (I'm guessing.) Look at the website..Lose the baby weight! Do you suffer from panic attacks? Relationship stress! Unsightly warts! This is self-help, spectacle, pathology for popular consumption and ratings. We should not look to these people to help us, because the very nature of the shows is antithetical to the seriousness of this illness. (And I'm not saying that to criticize the people who worked so hard to get him to do a real show on CFS. I wanted one, too. It's not until viewing this segment that I realize that it's simply impossible.)
 

MEKoan

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Why am I not surprised?

Dr. Oz (and Oprah) pander to their audience, and their audience wants to hear about things they can do -- exercise, diet -- to stave of or mitigate illness. They don't want to hear about anti-retroviral drugs, severely ill people or other matters that are "scary".

Several attempts have been made over the past 20 years I've been ill to get our disease covered by Oprah, and now Dr. Oz. Both shows have covered it. None of the segments broadcast has helped us one bit.

I know many people watch these shows. I'm just not sure they are at all interested in the XMRV and ME/CFS connection.

This is not a great venue for serious medical conditions that leave people debilitated. Dr. Oz's audience does not want to see us.

Consider AIDS. Has Oprah or Dr. Oz ever trotted out an HIV/AIDS patient? Even now, when HIV/AIDS has become a chronic illness due to drug therapy?
What you said, Marie.

I have long been very concerned, as you know, about any effort to get this illness covered by anyone in the Oprah network. It just isn't the kind of thing they do.

If someone were to write a roman a clef (roughly: fictionalized reality) about their experience with ME which made plain the sometimes devastating nature of this illness, Oprah might be a good venue for that.

She had Manette Ansay on years ago when she wrote Limbo, about her experience with a mysterious, disabling illness which could well have been ME. (I reviewed the book for our biggest national newspaper.) She took Ansay's experience seriously and showed her all due respect. There was a hook upon which the Oprah producers could hang a show. Unfortunately, Ansay has never, to my knowledge, identified her illness as ME.

The message must fit the medium in order to be accurately reflected.

As Marshall McLuhan so famously said, "The medium is the message." This particular arm of this particular medium IS the message that your health and well being are totally in your control.

When ME has gone through the necessary awareness process and people have finally understood what a huge problem it is, and we have a handle on how to address it, we can begin to do good news stories. There is no good news right now. None.

We'll see.

Koan

ETA Anne, we were posting at the same time and I want to thank you for providing such a great lead-in to my post.

What you said!
 
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Koan

Koan, you also made a good point.

We'll have to wait and see.

But folks, he will be advising what to do, that's the whole point of the show. And we all advise each other of what to do, and to be honest, some of the things patients suggest to each other are out there, really out there. So don't be offended if he tells us to eat veggies. (as said, good advice anyway.)

What would be the point of airing this if he couldn't offer advice of what to do. That's his shtick. It's not a documentary. It's a show on what you can do to feel better. And, most of his advice centers on everyday things, such as eating whole grain bread with olive oil once a day. That's not bad. And we all have everyday things we talk about to each other of what to do. Now, if he presents it as a cure, we have a problem. But if he presents his advice as "help" then ok.

You have to also realize that he is a doctor, if he can't offer any advice of what to do, then in his mind, what good is he. That's why so many clinicians don't want us as patients. There's very little they can do for us. They can't make us better. We just come in every few months complaining. It's not the doctors' fault.

Imagine this. ...

"I am exhausted every day when I come home from work. And I can't think straight. I keep losing things. I have new headaches and I have hot flashes. I also notice my muscles twitching."

Doc says, "Well, Mrs. Illy, we'll run some tests."

A week later. Doc calls. "Mrs. Illy, your tests came back negative for all the illnesses that could be causing your sickness. I think you have chronic fatigue syndrome. I have written you a prescription for Ambien. There is nothing else I can do, so don't bother coming back to my office. You should quit your job and look on the Internet. Have a good life."

That goes against the grain. Doctors want to "do" something. Most are men and men need to fix things.

Tina
 
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anne

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It's not the "what you can do" aspect, but the "YOUR TIREDNESS IS CAUSED BY A RETROVIRUS" aspect that bothers me. It somehow manages to work in the retrovirus and diminish the disease at the same time, an act of contortion that I didn't think was possible previously.
 
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Well

Well, maybe fatigue would have been a better word. But most people when they get sick at first will describe themselves as "tired all the time," or "so tired I have to go to bed in the middle of the day."

We don't like the words "fatigue" and "tired" and "exhausted" but they are there aren't words for what we experience. So they use the words the public knows.

We need a better word.

Tina
 
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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.
 

MEKoan

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It's not the "what you can do" aspect, but the "YOUR TIREDNESS IS CAUSED BY A RETROVIRUS" aspect that bothers me. It somehow manages to work in the retrovirus and diminish the disease at the same time, an act of contortion that I didn't think was possible previously.
Bold mine.

Yes, Anne, I could not agree more, it seems as though this is exactly what they have managed to do!

Well said!

Koan

PS I used to be married to a lovely family in Shaker Heights.
 
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Koan:

I was writing my post at the same time you were. Yes, I agree with everything you pointed out. In the spirit of Thanksgiving, I also have to reemphasize what a hugely positive thing this is that the Dr. Oz show covered this topic & while I know there are even things that I said may make people cringe, on balance, I think the segment will come out as very helpful and educational for people at large. Obviously, everyone on this forum knows much more about CFS than we could ever cover in a 10 minute segment! And given that Dr. Oz didn't know much about it before we did the segment, I thought he got up to speed pretty quickly. 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. I thought that their animation on XMRV was excellent and that the patient was terrific. And overall, I think that good things will come from his having given CFS the exposure that he did.