ALERT: Teitelbaum to be on DR OZ SHOW this FRIDAY!

[Cloud]

Like most of you, I began emailing Dr Oz soon after his show began a few months back asking him for a show on ME/CFS. I put mega emphasis on the need for utilizing qualified researchers and doctors for the project because of the huge amount of propaganda associated with this disease (I'm no stranger to the "media attention gone bad" experience). I never mentioned Dr T, but did mention others sources we all know and respect greatly. I knew my own plea's wouldn't amount to much, but we have power in numbers and I obviously wasn't alone.

I get riled up about what I perceive as injustices, but I'm an optimist and easy going person by nature (no snickering). I believe that our efforts are yet to bear fruit. If not, at least we get to feel empowered being such determined advocates for one another. Regardless, we still have an ace in the hole that's much bigger than Dr Oz.....The WPI work is front and center stage now!

 

[Dreambirdie]

I don't know about CFS, but several years ago, we FMS sufferers had a national effort and sent 40,000 letters to Oprah to get her to do a show on Fibromyalgia. She did not respond, and we later learned that was because Dr. Phil told her that FMS is a psychiatric illness.

I got the distinct impression, from watching things unfold, that the only reason Dr. Oz was not polluted by Dr. Phil's viewpoint was because Dr. T contacted him and got to him first.

Now that is REALLY disappointing! Dr Phil can be such big moron sometimes. But I'm surprised Oprah bought into this. Of course, she does tend to go for the "victory over adversity" and success stories. So it shouldn't be too big a surprise.

At least Dr Oz was open to the idea of talking about CFS... though he still has a LONG way to go to getting what it really means to be sick with it.

 

[MEKoan]

There is a French expression which translates, roughly, to: Beware your heart's desire for it shall be yours.

Much nicer than the English: Be careful what you wish for!

My point is that I think we have to be very, very careful what we ask for and cannot assume any level of understanding or awareness from anyone.

Peace out,
Koan

 

[jackie]

So right, Koan! I would have thought that the "evidence/facts" put forth in Hilary Johnson's article in the New York Times were pretty irrefutable (is that the word I want?) at this point.

And yet, I STILL got a few "Yeah, and your point is.....?" from "well educated" folks who should know better.

Maddening. Absolutely MADDENING!

(used to have a tee-shirt that said "ASSUME NOTHING" - wish I had it now)

jackie

 

[Finch]

Saw it ...

I saw the show on Friday. Made a point of it on my lunch hour. Wow. I walked out of the room for a minute and completely missed what Dr. Teitelbaum had to say! Luckily, I was taping it. I replayed it after it was over, as I still had plenty of time since it was so short. When I tried to tell my husband about it later, I couldn't even remember what they said! It was so short and so fast, even knowing everything I know and what I wanted to be listening for, I couldn't catch it! I played it again for my husband. As soon as Dr. T said whatever it was he said, Dr. Oz started walking away and talking about anemia. I told my husband, "That's it. That's all there is." He was amazed.

I actually did feel sorry for Dr. Teitelbaum but had to laugh when they showed him for one second while Dr. Oz was talking about thyroid problems, and he was just sitting there smiling. It was so funny! Then he got to talk about d-ribose for a few seconds. I've read a couple of Dr. T's replies to blog posts regarding the show (thanks for the links, guys), and I'm sure he believes ME/CFS (and fibromyalgia) have a root cause in the lack of quality sleep. He said it in one of his posts. So maybe it was best he didn't get to expound.

What caught my ear during the minute of discussion on Chronic Fatigue Syndrome? That people who have it gain weight, have reduced productivity, and are depressed. Those were Dr. Oz's words. Well, I've had ME/CFS for more than 18 years, and I haven't gained any weight. Sure, I've felt depressed now and then, but for the most part I'd describe myself as a happy person. Reduced productivity? Big time. Duh. Dr. T also included intolerance to cold. I do have that problem. Would I have identified with this description if I was in the early stages of ME/CFS but had not yet been diagnosed? Not at all. They didn't describe anything like what I was going through prior to diagnosis, nor anything much that I've been through since.

Dr. Oz's statement that CFS is newly discovered was indeed laughable. I don't know when it was "discovered," but it's had its stupid name for more than 20 years, I'm sure. I don't think that's exactly new!

Especially nice was that Dr. Teitelbaum ended his brief statement by saying that the good news is that it's very treatable. That was all. Dr. Oz trotted off to talk about anemia, hypothyroidism, and diet. He spent more time on each of those subjects than he had on CFS. He showed us nice little test tubes of healthy blood compared to anemic blood, and he had the audience pulling down their lower eyelids to see if they were pink enough. He also had them feeling their throats to try to find their thyroids. By the way, if you have anemia, you should borrow your grandmother's cast iron skillet and not give it back. Ha ha, very funny, Dr. Oz. I didn't think the diet segment was being shown as a treament for ME/CFS, but as an approach to general exhaustion.

I don't think any of us are out of line to expect more. If Dr. Oz had done the entire segment on ME/CFS rather than on causes of "women's exhaustion," we certainly would have had more to go on. As it is, it flew by so fast that anyone not looking for it probably didn't even notice it. If I had to listen to it a couple of times just to catch it, I doubt the average viewer got much information that could do much damage. Probably the only people who may have been damaged would be those who are still wondering if they have ME/CFS, because it certainly wasn't represented appropriately.

All this being said, I may still write to Dr. Oz once I get my thoughts straightened out. I'm not in a hurry at this point. I'm also concerned that if he does do an actual segment, he'll do it wrong. With all the feedback I see him getting from people here and elsewhere, though, I'd think he'd have to try harder the next time. I think all thoughtful letters with suggestions of appropriate points to discuss and the right experts to invite can be helpful.

 

[Dreambirdie]

Hi Finch--

You made MUCH BETTER sense of it than I did! I found it SO incredibly confusing, that I couldn't figure out where he was going with it. Thanks for filling me in.

I did find it sort of comical to see the whole audience pulling their lower eyelids down for the camera. They didn't realize they were supposed to be checking each other for anemia.

 

[Finch]

Hi Dreambirdie

Dreambirdie - It's funny that it probably took me twice as long to write that review as it took me to watch the segment three times.

 

[MEKoan]

I did find it sort of comical to see the whole audience pulling their lower eyelids down for the camera. They didn't realize they were supposed to be checking each other for anemia.

I slapped myself on the forehead when they did that. It was like watching the Stepford audience.

Finch,
What you said.

Koan

ETA Jackie,
you wrote: "ASSUME NOTHING". I'll take that tshirt.

 

[Marylib]

There is a French expression which translates, roughly, to: Beware your heart's desire for it shall be yours.

Much nicer than the English: Be careful what you wish for!

My point is that I think we have to be very, very careful what we ask for and cannot assume any level of understanding or awareness from anyone.

Peace out,
Koan

Well put, Koan.

If there is one thing that we have learned from this charade, is that we cannot make assumptions about anyone's awareness.
If only "Nevada Newsmakers" had the kind of audience that Oprah's doctors do.
Marylib

 

[cfs since 1998]

dr. oz, weight

Funny, I've lost weight since getting CFS. I'm often too tired to eat. And I'm not women...

Also who knows if Dr. Oz even wrote this segment. I'm sure staff members of the show did all the work and planning as well as trying to market it toward the target demographic.

 

[MEKoan]

Marylib, and everyone,

I think one of the lessons that is hardest won is that just because we tell them, and we have research, and we are empassioned, and we explain it carefully, and we are on firm footing does not ensure that we will be heard, believed or understood.

The recent findings by WPI makes that clear. Even as everyone with a brain and without a vested interest says, "wow, that's amazing", everyone with a vested interest keeps saying some version of same old/same old.

There is a term for that in psychology but I can't remember what it is.

We have all seen it in action in many spheres of society. People can continue to believe really cockamamie crap in the face of contrary evidence.

We would be smart to ask only those who's opinions we know and with whom we concur to speak about this and on our behalf. IMO, Asking for the opinion of those who may be influential but who's beliefs we do not know is asking for trouble.

Peace out,
Koan

ETA I have not forgotten that this show was taped before the research was released. Many people asked Oz to do a show on "CFS" over the past several weeks. (I don't think this show was a response to recent requests.) Many before that have asked Oprah to do so. We got what he thought; I can't imagine what she thinks. I don't want to find out on TV.

 

[Dreambirdie]

Even as everyone with a brain and without a vested interest says, "wow, that's amazing", everyone with a vested interest keeps saying some version of same old/same old.

There is a term for that in psychology but I can't remember what it is.

DENIAL is not just a river in OZ.

 

[MEKoan]

DENIAL is not just a river in OZ.

 

[klutzo]

Denial

Koan,
It could be denial, or it could also be cognitive dissonance.

klutzo

 

[MEKoan]

That's it: cognitive dissonance.

Cognitive dissonance is really hard on people with a strong need for consistency, predictability and certainty. Scientists and doctors often have a high need for consistency and are very disturbed when it is absent. Paradigm shifts are threatening.

Personally, I enjoy cognitive dissonance. It's very trippy. Take you fun where you find it, I say.

Thanks much Klutzo!

Peace out,
Koan

 

[zoe.a.m.]

Cognitive dissonance sure does cover a spectrum of the bad and confounding behavior anyone outside of the norm deals with on a daily basis. I'm really glad you brought it up Koan, and really glad you were able to place the term Klutzo; my brain was churning trying to recall what it was!

Frickly, your point about 5 minutes being absolutely enough time to affect change should be heard by Dr. T. If it can happen on GMA with an anchorperson (not sure since I don't watch it if the interviewer is normally "good" or not) who was seemingly uninformed, it sure could be expected of two doctors on a show devoted to medicine!

The ability to make a strong, but not necessarily alarming or "scare-tactic-y" statement by Dr. Moore, Judy Whittemore and Dr. Klimas tell me that there is a real understanding for what this illness is. While Dr. T and others appear sincere and compassionate, they do not resonate like the aforementioned--and it makes sense that we should question their understanding of CFS/ME.

Thanks Ken for posting the link to the thread. I think I've started out here a bit backwards with not having a clear understanding of the rules (and thank you to Cort as well for clearing this up); somehow I have the impression that linking and naming other sites is a no-no.

It's funny to see the same posters over at Prohealth, myself included, because sometimes the names are the same and sometimes they aren't! I had no idea you're Rafiki, Koan! I'm zeowa who posted right above you on that thread!

I really appreciated the conversation--hope it was on this thread--about how even cancer evokes only a passing sympathy. I wish, in my town, CFS/ME patients were allowed to be a part of another support group. It's true that we have a lot in common with so many other sufferers.

SueJackson, I thought your response to Dr. T's post on your blog was excellent. You really illustrated that this show will make an impression on millions and may be their only source of info on this topic!!

I, personally, wish I'd paid better attention to what was happening with HIV/AIDS when it was still an unknown and still masked in ignorance. I was only a child, but I'm reasonably sure that when something as large as a heretofore-unknown retrovirus was found and began to break through the indignant prejudice about its existence, a lot of time went by before it was "real." It also took a lot of private funding and celebrity concern to kick that movement into action.

It's also a big leap for people to appreciate the difference between a retrovirus and a virus. I've been schooled somewhat on this stuff but still had to pull a Bio text out when I read about XMRV. An understanding of secondary-level science is not something most Americans have--our schools have created a population of people who can understand "psychosomatic" and who may never understand "retrovirus." We've (as a nation) become more comfortable throwing psych terms around and unhinged in the face of high brow genetics, cancer and other scientific research because one is generally on tv and in magazines and one is not. I don't mean people here shouldn't be using psych terms (esp. since so many CFS/ME patients who are really schooled in this department); the problem is when people who haven't experienced therapy or illness themselves feel confident to label and judge because they saw Oprah's take on something.

 

[Marylib]

This whole line of thought..

You guys are brilliant.
Marylib

 

[klutzo]

holding two ideas at once....

Koan,
"They" say that maturity is being able to hold opposing ideas and/or beliefs simultaneously without being uncomfortable. I wonder where this crosses the line into just being illogical or even stupid. Don't mind me, I used to be a psychiatric social woker before CFS knocked me out of the work force. That's why cognitive dissonnance was so easy to pull out of what's left of my mind. The professional buzzwords never leave, but I not only can't remember what I ate for lunch, I can't even remember whether I ate lunch at all.
= = = == = = = = == == = = = == =

Zoe a.m.,
I remember early AIDS, because I got this illness in 1986. It took a long time before people understood it, and some still don't. I live in the south, where many regarded it as God's punishment for the sin of homosexuality. Nuf said, ugh. Most people get all their info on the boob tube and do not read at all. The IQs on this forum are way above the American average, which is an embarrassing 98. Without ad exposure on TV, I don't expect much from the public. As long as scientists get it right and doctors get info from them to treat us, I will be happy. Sadly, I read a study recently saying that new research now takes an average of seventeen years to trickle down to the level of the practicing clinician, so we need to keep up and take it to our docs, esp. those of us who can't see specialists in CFS.

= = = = = = = = = = = = = = = ==

MaryLib,
I like the way you think! You can be our official self-esteem cheerleader if you'd like, at least you've certainly got my vote.

klutzo

 

[MEKoan]

Remembering AIDS

It was so much worse for people infected with HIV/AIDS in the early days. Here in the north, people who got sick were thought, whether it was spoken or not, to be experienceing the wrath of God.

Science mused, as I suppose it had to, about every aspect of thier lifestyle. But, even after the virus was discovered, the musing about lifestyle didn't stop. Ok, there was a virus but the felt need to blame the victim was very strong: it was the virus and this, it was the virus and that. It was the virus, stupid.

Young people watched their young friends sicken, with nightmarish conditions, and die. Once beautiful young people were emaciated, covered with lesions, often blind and sometimes demented. It was terrible.

People who had only recently had gained some measure of acceptance from society became pariahs. Other people, including care givers and family, didn't want to touch them, or kiss them, or care for them, or even drink from a clean glass in their house. It was awful.

And, beautiful young people died and died and died.

As it began to very slowly change here in NA, as treatments were developed, it ramped up at an alarming rate in other places. Entire families were wiped out by HIV leaving millions of small children orphaned, abandoned, alone and, often HIV positive. War, drought and famine followed HIV in many places. Even without the violence and chaos, there is usually no money for the drugs that save lives here.

I hope this isn't totally OT but Zoe mentioned she was too young to remember AIDS and it got me remembering those dark times and thinking about how they are still with us even if not always in our own back yard.

Peace out,
Koan

 

[MEKoan]

Koan,
"They" say that maturity is being able to hold opposing ideas and/or beliefs simultaneously without being uncomfortable. I wonder where this crosses the line into just being illogical or even stupid.

Hey Klutzo,

I don't know that it need ever cross the line.

I actually do enjoy the feeling of cognitive dissonance. I like that cut loose feeling... the freedom of not knowing.

The core concept of Korean Zen is: don't know mind. I love that concept. We think we should stuff ourselves full of concepts and paradigms and facts but, really, should we? We all know that so many of these facts will be proven to be something entirely other in time.

I was having a conversation with a pain specialist on my local dog beach one day. He was insisting that people who have Fibromyalgia (I don't happen to, thank goodness!) or other mysterious pain conditions really needed counseling and should not be going to see him.

I was insisting that the rock upon which he sat was comprised of more space than matter... that he could be sure of nothing at all, certainly not the evidence of his eyes or his senses. I won.

Ooops, winning isn't the point! Ah well, whatcha gonna do.

Peace out,
Koan