Dr oz preview - "simple stretching for xmrv"

[Dreambirdie]

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

Actually, there IS something else I have been working on. Will post about it eventually.

For now, I'm back to bed.

 

[MEKoan]

Please consider that this is very much a developing story. There is absolutely no reason to believe that we can predict the accuracy of the reporting or the take of the reporters. What if they are interested in doing a piece on mass hysteria? What if they are interested in atypical depression? What if they was to explore any number of misconceptions about this illness and accept them as fact?

 

[mezombie]

Next "target"

May I suggest we continue to engage the news editors of major papers, focusing on the scientific evidence we have so far?

The New York Times has been terrific about covering this news, but other influential papers have not. The Washington Post, for example, offered a tiny piece in its Health (lifestyle oriented) section dismissing XMRV as unimportant. I may have missed some articles, but I don't recall hearing about any coverage from the Boston Globe, San Francisco Chronicle, and other heavy hitters.

 

[sosumi]

What if they are interested in doing a piece on mass hysteria? What if they are interested in atypical depression? What if they was to explore any number of misconceptions about this illness and accept them as fact?

John Stossel (sp) is no longer with 20/20 so I don't think there's any worry about hysteria.

Tim Johnson did a good peice on ABC News:

http://abcnews.go.com/video/playerIndex?id=8787363

 

[Wayne]

Patience with Science

I must go now and tell my HIV positive friends that they should stop taking the ARVs and go to the gym. They will be so happy to hear that.

koan

Hi All,

Today is my first visit here in a while. I was getting more than a little distressed about Dr. Oz et al. UNTIL ... I read Koan's above quote (and others with humorous comments) THANK YOU VERY MUCH!. I then started to "lighten up" a bit. After reading Dr. Donnica's comments, I actually became optimistic about the coverage, however imperfect it may be at this time. Thank you Dr. Donnica.

Makes me reflect on how long it's taken (decades) to reach this important juncture. Just the fact that people are gradually learning to associate CFS with a retroviral infection is important. Going forward, I think it will be the rapidly emerging science that will trump any misconceptions (like CFS being chronic fatigue) that Dr. Oz, Dr. Teitelbaum, and others are (sometimes inadvertantly) putting out there.

Wayne

 

[MEKoan]

May I suggest we continue to engage the news editors of major papers, focusing on the scientific evidence we have so far?

The New York Times has been terrific about covering this news, but other influential papers have not. The Washington Post, for example, offered a tiny piece in its Health (lifestyle oriented) section dismissing XMRV as unimportant. I may have missed some articles, but I don't recall hearing about any coverage from the Boston Globe, San Francisco Chronicle, and other heavy hitters.

Excellent point!

Thanks Marie!

 

[dannybex]

May I suggest we continue to engage the news editors of major papers, focusing on the scientific evidence we have so far?

The New York Times has been terrific about covering this news, but other influential papers have not. The Washington Post, for example, offered a tiny piece in its Health (lifestyle oriented) section dismissing XMRV as unimportant. I may have missed some articles, but I don't recall hearing about any coverage from the Boston Globe, San Francisco Chronicle, and other heavy hitters.

Good points Marie...unfortunately -- very unfortunately -- hardly anyone reads newspapers these days, even online.

Maybe "hardly anyone" isn't the proper term, but I would suggest that a large majority of folks have stopped reading the news. On the flip side, most television is sponsored by pharmaceutical ads ("Tell your doctor if you have liver problems!"), so it's unlikely we'd hear about other co-factors, like mold, pesticide exposures, leaky gut, fungal infections, etc.

Pros and cons all over the place.

Still, it can't hurt by contacting any of these organizations. The truth(s) will eventually come out...

Thanks,

d.

 

[MEKoan]

John Stossel (sp) is no longer with 20/20 so I don't think there's any worry about hysteria.

Sosumi,
"Give me a break!"


Thanks for the link.
k

 

[MEKoan]

Pros and cons all over the place.

Yes, Danny, that is the very crux of the conundrum!

Hey Wayne,
Always look on the bright side of life, da dum... me too ,

but nobody expects the Spanish Inquisition

Da dum, da dum da dum da dum

 

[leelaplay]

Oh – good morning all. I’ve been typing away at my post on word and 5 new pages have been added! So many good points made.

My feelings about the preview are that Oz is not at his best when things are unscripted, and that this segment showed his underlying approach of wanting to provide, perhaps overly simplistic, “action steps” to deal with anything. It seemed he started off acknowledging that right now all there is is some level of symptom treatment when talking about sleep, but then dove off the deep end implying that ME/CFS can be cured with exercise.

I guess either his researchers missed that
a)post-exertional malaise/fatigue is the main symptom for ME/CFS, with exercise often exacerbating symptoms and leading to relapse,
b)there is no known cure yet, and research indicates that 0 – 20% of people with ME/CFS recover to about 80% of pre-disease functioning,
or he is unable to remember these.

Yikes though – on relistening he says “there are action steps to overcome the effect of the virus” and then later says “simply stretching to get the immune system going to beat back this virus”

Maybe he needs to hear something like Mithriel’s simple analogy that “exercise for ME/CFS is like pollen for hay fever; It makes things worse”. in order to ‘get it’ and remember it.

However, I choose to remain hopeful until seeing the show.
> He did do another segment very quickly after discrediting himself, his show and other “experts” by the first segment on regular tiredness with Dr Teitelbaum, filled with fantastically fatigued, worn out and down-right false info about ME/CFS and mixing it up with normal tiredness
> He did ask Dr Donnica to be an expert
> One post said he, or I guess his staff, interviewed WPI for an hour
> He did bring in a guest with ME/CFS, who another post said is somewhat media-savvy and who had spoken with WPI

I’m hoping that the scripted segment is more accurate. I have confidence in Dr Donnica (THANK YOU again for all you do for us) and look forward to seeing the guest.

Thank you Marylib for providing the link to give feedback on the Good Day program and the Oz Show.
a)Fantastic that they are providing coverage on the disease and xmrv – look forward to more
b)That announcer, and more importantly her bosses, needs to hear how inappropriate her remark that she had the retrovirus was! There- another reason to remain hopeful – Oz did correct her.
c)Think it’s also a good place to address the inaccuracies of Dr Oz’s statements re exercise and the “ability to beat back the virus”.
d) And their mistakes in the blurb beside the video

Retrovirus Causing Fatigue In Millions
Dr. Mehmet Oz On Good Day NY
MYFOXNY.COM - Ten million Americans have a retrovirus that may be responsible for chronic fatigue.

Dr. Mehmet Oz of the Dr. Oz Show says about five million people have symptoms of the condition.
A retrovirus, says Dr. Oz, installs itself into an individual's DNA. Another type of retrovirus is the AIDS virus.
Dr. Oz will discuss more about the retrovirus on his show airing on Fox 5 at 3 p.m. on Tuesday.

maybe Retrovirus Causing Debilitating Disease in Millions
Chronic Fatigue Syndrome - it's a disease name, not normal tiredness
Show on Thursday, not Tuesday

islandfinn

 

[leelaplay]

I like the idea of getting Michael Moore going on it. Seems like there's enough fodder for his approach. He could go to the doors of the CDC asking to speak with Reeves. He could look at the endless recommendations of the CFSAC committee that have yet to be acted on.................

Anybody know him?

islandfinn

 

[Kati]

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

Dr Donnica, thank you for taking the time to speak with Dr OZ. I would just say that talking with Oprah would likely be a better venue to explain more in details what the disease is all about because Oprah wants to dig deep into the truth, she skypes with her guests if they can't make it to her studio, so could reach bed ridden patients and very likely would offer more than 10 minutes of airtime to explain such a complex disease.

I gree that Dr Oz wants to do mass education- and his message is by doing simple things at home, by improving your habits, you can get better. So his topics of choice will be reducing stress, sleep well, get leaner, aim for normal cholesterol, good nutrition, etc...

I think we all want to go public with this disease, and want our disease recognized by the public, family dr etc. I'd say we would be better trying the governments and the cdc to change their minds than 10 minutes at Dr Oz.

Hopefully I can watch the segment. I am sure you have done your best to explain the disease and I thank you for that.

 

[Martlet]

Okay - calmer today. I had a bad night and I shouldn't write stuff in the middle of a bad night.

 

[Samuel]

Donnica,

Thank you very much for your effort. It must have been wrenching.

I think the public needs to know just how completely unacceptable the following is.

Imagine if they did a show on diabetes, and "didn't have time" to go into the symptoms beyond thirst.

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...

 

[anne]

Koan's point about having a story attached for these shows is a good one. If not, it's going to be general information packaged in a general way--despite the best efforts of the valiant Dr. D. I hate to say this, but there is an absolutely terrific story for Oprah, one that stipulates the disease as very serious and very specific.... Two parents, fighting for a cure for their daughter's mysterious illness, the daughter grows sicker and sicker as her illness is maligned and ignored, until they finally decide if anything's going to be done, they have to do it themselves....

 

[Kati]

Koan's point about having a story attached for these shows is a good one. If not, it's going to be general information packaged in a general way--despite the best efforts of the valiant Dr. D. I hate to say this, but there is an absolutely terrific story for Oprah, one that stipulates the disease as very serious and very specific.... Two parents, fighting for a cure for their daughter's mysterious illness, the daughter grows sicker and sicker as her illness is maligned and ignored, until they finally decide if anything's going to be done, they have to do it themselves....

I like that Anne. And Oprah is fair like I mentioned on my post.

 

[annunziata]

Years ago, Oprah did a show on CFS. There were patients who attempted to describe what the illness had done, I think some of them wept; at the end she wheeled out psychologists who explained it was all essentially depression.

I could be wrong, but I believe she subscribes to the upbeat school of dealing with anything and everything in life.

 

[jenbooks]

Dr. Donnica, just skimmed through this thread. I appreciated all your posts, and I personally don't expect anything much different from daytime tv (I assume he's daytime tv? LOL I never watch tv! Unless it's on the web, and I can play it at my leisure).

He's got an audience--that was determined before they developed his show. And it's as you say, empowering women with nice "tips" they can incorporate into their lives for their health. Consider: You on A Diet series etc.

I personally am more curious if XMRV research pans out--and in what way--as gatekeeper? Causative? Re-activated? Due to a genetic vulnerability? And what about other pathogens? What about the role of environmental toxins and deficient food (I'm not being careless when I say that--we have an extremely poisoned world with really nutrient-deficient food).

I was pleased to see that good, new research has recently come out on borrelia, infection rates in ticks, coinfection rates, the role of microfilarial worms in tickborne illness, and why doxycycline often fails in early infection etc.

There is a long history of psychologizing diseases. Must go back to Descartes. Before that, it was spirit possession...

We tend to acknowledge a disease has biological/infectious roots when we finally can fix it.

To me, Dr. Oz's apparently trivial approach is kind of meaningless--the women watching that show do want to do a yoga stretch and feel better about themselves...he's got an impossible balancing act if he's going to try to report serious scientific research and keep his daily tips...

Thank you for all you've done...

 

[annunziata]

There is a long history of psychologizing diseases. Must go back to Descartes. Before that, it was spirit possession...

We tend to acknowledge a disease has biological/infectious roots when we finally can fix it.

This is so true. In "Illness as Metaphor", Susan Sontag pointed out that there were all kinds of psychologizing/romanticizing notions about TB, which only finally changed with the advent of isoniazid.

 

[DrDonnica]

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!

As I recall, that was the first thing I said. Nearly word for word. I also emphasized the biologic basis of CFS.