Dr. Lipkin on Dr. Oz show Thurs 5 March about ME/CFS

[PeterPositive]

So I just watched the show, it was less than 8 minutes. Dr.Caudle is clueless- she really needs to shut it. Dr.Lipkin talked about the infectious aspect and "biomarkers". The women guest with CFS says everyone thinks she's crazy. So basically, if I didn't know anything about this illness I would come away with- it's a women's disorder, possibly with an underlying infectious cause. Oh, and dont' stand too long or you will feel worse. The following segment was about mood and anxiety disorders.

Seriously? Women disorder? Again?!

 

[Sasha]

Sounds as though Dr Lipkin did his best, at any rate!

Given the size of Dr Oz's audience, maybe some people will google on Dr Lipkin and CFS and we'll have grown our donor base.

 

[Mij]

@Sasha do you believe that the type of audience that watches the Dr.Oz show is of any significance to our cause? The 8 minute segment was not something anyone would take seriously and donate to. sorry.

 

[beaker]

I just saw it in Canada. Here are my notes:



He finally asks Lipkin about his work. {snip} He (Lipkin ) refers to the illness as CFS, myalgic encephalomyelitis or "the new acronym we have now."

TNAWHN or maybe take off the "the" and have NAWHN. I like it ! I think that's a name we can all get behind. : )

 

[SpecialK82]

Actually, I was pleasantly surprised that they did an over-all good job, and I think our disease is better off for it. We had much needed exposure that was taken in a very serious way. It wasn't perfect, but word is out to millions about our suffering. I do wish they would have described the extent the suffering can go - wheelchair/bedbound/housebound, etc.

 

[Sasha]

@Sasha do you believe that the type of audience that watches the Dr.Oz show is of any significance to our cause? The 8 minute segment was not something anyone would take seriously and donate to. sorry.

I think any large audience has the potential to steer people towards our community and good information. I wouldn't expect people to watch that 8 minutes of Dr Oz and donate, but to maybe seek out more information because of it. And if they end up somewhere good on the net (like here!) and get clued in, then our community has grown - and so has our donor base.

 

[SpecialK82]

I do agree that is was awkward the way they said "it's not Chronic Fatigue Syndrome", (because it's now SEID). But I do think our point was made in spite of it.

 

[SpecialK82]

Seriously? Women disorder? Again?!

Couldn't agree more!

 

[snowathlete]

I think with a show like this you have to look at it as damage limitation. Had Lipkin not been there it would have been really bad. Happily he was there to raise the standard. So good result. And maybe other better shows will be willing to talk to Lipkin in more depth now.

 

[shannah]

Don't understand why Dr. Lipkin kept referring to it as a disorder rather than a disease. So many mixed signals!

 

[acer2000]

Ugh the preview clip they have where they do like "5 things" is the worst. If that is really the IOM criteria it is *more* vague than the previous definition. I haven't had a chance to watch the whole segment yet.

 

[Kati]

I will not bother giving Dr Oz an audience.

 

[Valentijn]

That sounds pretty decent. At least, it wasn't particularly bad, despite getting some of the basics wrong. And not-bad publicity is better than no publicity

 

[Bob]

I will not bother giving Dr Oz an audience.

lol That reads like: "I will not dignify the show by giving it an audience." Made me chuckle.

 

[Bob]

@meadowlark, thanks for your comprehensive notes.

 

[SDSue]

And away we go!

 

[Antares in NYC]

While the entire segment is not online yet, you can get a glimpse in Dr. Oz's website. They have the first 4 minutes of this show already online:

http://www.doctoroz.com/episode/it-...ausing-your-exhaustion?video_id=4093379831001

 

[charlie1]

RE: the Sneak Preview:

"standing seems to make things a little bit worse' and "you can have a little bit of brain fog" Really???.. OMG...

and I agree with those of you that said it's very confusing when the sign on the stage calls it a disease but the woman doctor is calling it a disorder.

 

[Bob]

Looking at the three minute clip, they've got some essential details wrong in the second half of the clip, relating to a diagnosis.
But I thought the first half was helpful - it entirely validated the illness in strong positive terms, confirming that it's a biomedical illness.
Overall, I think the clip is probably helpful from this point of view: If someone without a diagnosis was watching this, I think it might help them seek further help, which is all we can expect from a program like this. It's not aimed at scientists, researchers, clinicians or expert patients. It's aimed at a general audience.

 

[SDSue]

While they all at least did say that it was "real" and people are going undiagnosed for years, it seems like such a wasted opportunity to mention at LEAST the following three points:

1. Many people are so debilitated that they are bed bound for decades
2. There have been tests available for years that document abnormalities
3. Patients are having to fund research

I could add so many more. It seems we need a campaign of talking points.

Perhaps we'll never be satisfied with media coverage, but at least the "real" word is getting out.