1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
AVIVA Semi-Finals: National ME/FM Action Network is competing for $100,000
The National ME/FM Action Network in Canada is competing for $100,000 for biomedical research of ME and FM in the Aviva Community Fund contest. With thanks to all who helped, they made it through the first round of voting into the Semi-Finals.
Discuss the article on the Forums.

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

Discussion in 'Action Alerts and Advocacy' started by Dreambirdie, Oct 19, 2009.

  1. Frickly

    Frickly Senior Member

    Messages:
    1,046
    Likes:
    35
    Texas
    klutzo

    Did you know that after that show he did an interview where he said he was getting the H1N1 vaccination but his wife and children will not? That was a very interesting interview. The interviewer seemed to be waiting for Dr. Oz to convince her to get the shot but he continued to talk about the possible side effects and that it is and individual decision. I will see if I can find it.
     
  2. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    Hey All,

    Well, I've seen it twice. I had to watch it again because it made so little sense the first time.

    I'm not all that bothered by it, actually. Basically, what Dannybex said covers my reaction. I think I may be less aroused.

    And...

    I stand corrected. Thank you.

    Today's show was all pretty bewildering, if you ask me. I found myself thinking that Dr T should maybe help Dr Oz chill a wee bit.

    Surgeons are very direct and swift which is what enables them to cut into your beating heart. Doesn't make them good communicators.

    Teitelbaum was rather endearing. I'm still not crazy about his public reaction to WPI, or his choice of titles, but never mind.

    All the stuff about the tens of millions of people who are suffering from exhaustion has nothing to do with me. I have a neuroimmune illness. Actually, I'm pretty sure I have a XAND neuroimmune illness.

    But, mostly, I just thought: wha......? :confused:

    I think they may have changed the show after the WPI news broke but before we broke :p Teitelbaum said they had been going to include patients but didn't, the second half of the show bore no relationship to the first and, interestingly, two of their in house doc.s are associated with Cleveland Clinic.

    I must admit I can barely think today but, as far as I could tell, it was so superficial, so rushed and so confused that I don't think most people would take away anything at all from that except that there is some connection between CFS and anemia and thyroid function and that millions and millions of women either have it or could get it :eek:

    Whoever (please forgive me!) said that he would not have trivialized men suffering from prostate cancer said something very smart!

    He wears me out, that Oz guy.

    Let's breathe :p

    Peace out,
    Koan
     
  3. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,128
    Likes:
    3,398
    N. California
    The wha...? part :confused: applies to me too.

    Dr Oz pretty much ditched Dr T on the sidelines to be a stage prop, which was utterly weird, while Oz dominated the scene with his ignorant conclusions about what makes 200,000,000 women exhausted. :confused: I think Dr T said two sentences, in between smiling uncomfortably most of the rest of the time.

    I do have a feeling that they changed the show, because the focus was mostly on EXHAUSTION, and had almost nothing to do with CFS. It bothers me a little that they even mentioned CFS. They should have just stayed on their topic, :confused::confused::confused: whatever that was.

    I agree with Dannybex about Dr. Oz being the one who needs the education. Wow. :eek: He didn't bother doing any research at all.
     
  4. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    'xactly

    :cool:

    ETA I'm still ready to stink as called upon.
     
  5. zoe.a.m.

    zoe.a.m. Senior Member

    Messages:
    361
    Likes:
    17
    Olympic Peninsula, Washington
    Haven't even seen it yet...

    But I was one of those who was outraged about Dr. T being on the program and now I find that I should have been outraged at Dr. Oz from the start. I watch a few times a week and am often put off by how he speaks over someone else or spews some nonsense.

    Yesterday (I think it was), he said some ridiculous thing about how eggs can't increase cholesterol because "the yolk is protein, and fat is what makes cholesterol." Now, I have no issue with people eating eggs and I personally doubt they've put anyone into a high-risk category (just eggs), but it's a huge piece of misinformation to state that eggs don't affect cholesterol and make it sound as though they have a vegetable fat--as all animal fats are on the cholesterol list. Pretty stupid for a heart doctor too.

    I am sure I will share the feelings of the last 5 pages when I do go ahead and watch. Now I feel badly that I got in a fix about Dr. T since it sounds like he was treated so badly.

    ITA with the poster who said he should have stuck with heart surgery (at which he's brilliant). I, for one, am tired of Oprah's "great things" approach to medicine and psychologically, whom she eventually appoints to her 'cabinet' and then each gets a show or millions of $ in profit, etc. She's the one who should go live a day in the life of a CFS/ME patient, then we'd get press.

    Well, hope I didn't bring anyone down any further and thanks for giving me a place to vent. Maybe I'll boycott Oz from now on; I don't think it'd be much of a sacrifice. I'm curious to hear if anyone from the WPI ever hears back...

    ETA: I forgot to mention that I find Dr. Oz to be condescending in general when it comes to women. A few weeks ago I heard that, for the first time in history, more men were at home during the day than women. Women now work the bulk of the full-time, 9-5+ jobs. I don't think the great Oz has gotten the memo. And hey, since women are expected to work, raise kids, take care of their families and go the extra mile: maybe that explains the 'mystery' of their exhaustion!
     
  6. jam338

    jam338

    Messages:
    17
    Likes:
    1
    Help Educate Dr. Oz--Contact Links Enclosed

    Suffice it to say the show segment was bitterly disappointing. It misinforms the public, family members, and employers. It hurts and has created lots of distress in the CFS community. I have been stressing over this for the past 4 hours trying to figure out what we can do. I am too sick to deal with this, but researched where to write and plan to follow through. I hope others will write as well. We owe it to ourselves and each other. Dr. Oz owes the CFS/ME community an apology and a legitmately well researched and properly presented show on CFS/ME. A full show and not just a misinformed "drive by" segment like that presented today.

    Here is how to contact him to let him know your concerns:

    Mehmet Oz, M.D.
    New York Presbyterian Hospital
    Cardiovascular Institute & Complementary Medicine Program
    622 W 168th St
    New York, NY 10032
    (212) 305-2500


    http://twitter.com/DROZ

    http://www.facebook.com/droz?v=app_4949752878


    Wed Oct 28 Dr Oz will be an in person guest throughout the day on KCRA Channel 3 in Sacramento, CA. The station is asking viewers to send in email questions for Dr. Oz:
    http://www.kcra.com/station/21352725/detail.html
     
  7. zoe.a.m.

    zoe.a.m. Senior Member

    Messages:
    361
    Likes:
    17
    Olympic Peninsula, Washington
    Whoah!

    So after watching a chunk of this show, I'm even more confused. As badly as the CDC has done with "CFS," it does state that to be diagnosed with CFS, it's at the exclusion of known causes of fatigue--right?

    About 2 minutes in, he began to explain anemia, hypothyroidism, etc. (all diagnoses that can be easily treated). I know some CFS/ME patients do have these problems as well, but they do not CFS make.

    As irritating as this is, it helps me to understand why doctors downplay CFS and why, when doctors do see true CFS/ME patients, they're alarmed b/c it doesn't "sound/look like" CFS. And the CDC would be responsible for the total lack of information.

    If anything, this points out that there are at least 2 distinctly different problems: one a syndrome and one a disease.

    Yeah, Dr. T practically got yanked off the stage with a hook like he was in some vaudevillian production!
     
  8. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    The Doc.s behind Dr. Oz, two of whom are from Cleveland Clinic which was involved in the research.

    Mike Roizen, MD
    Chief Medical Consultant, The Dr. Oz Show

    Tanya Edwards, MD, M.Ed.
    Dir. Center for Integrative Med, Cleveland Clinic


    Harry Fisch, MD
    Dir, Male Reproductive Center, NY Presbyterian Hospital

    Katherine Lee, MD
    Breast Specialist, Cleveland Clinic

    Arthur Perry, MD
    Clin. Assoc. Prof of Plastic Surgery, RWJ Medical School

    Jacob Teitelbaum, MD
    Author of Fatigued to Fantastic! & Pain Free 1-2-3

    I wonder if WPI and the Cleveland Clinic participant in the XMRV research should lead the effort to have this covered by Oz when the time is right.

    I am really struggling to think - last weeks really catching up with me - and may find the Oz show more troubling when I can think.

    Will stink if necessary.

    koan
     
  9. klutzo

    klutzo Senior Member

    Messages:
    544
    Likes:
    10
    Florida
    Hypocrisy?

    Hi Frickly,
    I did not know he said his wife and kids would not get the shot.

    Interesting that he told the audience made up almost entirely of women his wife's age that they were going to get one before they left, but his own wife is not. Interesting that his kids are not getting it when they belong to one of the highest risk groups. Hmmmm.....

    I suppose he would say he got it because he is a health care worker. I've read some states are mandating that all health care workers get it, poor chumps.

    klutzo
     
  10. dannybex

    dannybex Senior Member

    Messages:
    2,279
    Likes:
    581
    Seattle
    Thanks everyone for your replies.

    I'm so sorry that this turned out the way it did, especially for you Dreambirdie, as you went to all effort and hard work trying to get people to email Dr. Oz in the first place. I wrote too, but wasn't holding my breath. I hope you weren't either! :)

    I think the problem, as others have alluded to, is that egos can get waaay out of control when people suddenly become celebrities. Oz always has struck me as typical of these overnight celebs -- especially with his "Real Age" gimmick, where he offers (almost) one-size-fits-all answers to complicated health issues. I filled out his 'real age' questionnaire a couple years ago and then was deluged with emails telling me I should take more aspirin or make sure to walk at least 20 minutes a day...

    And speaking of "Real Age", with all due respect, Dr. Oz looks five years older than 49, even with his latest dye job. (MEOW!!! I know, that's not fair...so much jealousy in show business!)

    I will definitely give him credit -- his 'real age' is probably close to that of a 35 year old, as I saw one show where he dropped to the floor and did 25 solid pushups. Most 'healthy' men his age can't do 5-10, and I can't even do one.

    Thanks for all your efforts Dreambirdie, and thanks Jam338 (Hello!) for the address and other contacts. It's important he and his staff hear our feedback, especially after today...

    Dan
     
  11. anne

    anne Guest

    I would not think you will have any luck with the Cleveland Clinic, alas. Yes, a researcher there is involved with this study and WPI, but it's a huge sprawling entity, and their official treatment of CFS is (I kid you not, check the website) 1) handouts 2) search for underlying mood disorder 3) CBT. We have not had any luck getting a treatment plan designed by Dr. Peterson implemented at the Clinic. And the researcher is--well, a researcher. He's just doing the science. I think there would be better luck with an entity with a PR arm and experience--WPI or CFIDS Association. Though I'm wondering if they would ever come down on Dr. T.--have they?
     
  12. dannybex

    dannybex Senior Member

    Messages:
    2,279
    Likes:
    581
    Seattle
    I'm late on this 'stink' joke...I've seen it before but I too am really struggling to think. Or to stink? I stink/think I know what you mean...

    Anyway, that's a great idea to perhaps write to the others at the CC...to have them lean on him, if they haven't already. ???
     
  13. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,128
    Likes:
    3,398
    N. California
    I need to sleep on this. It's late for me. My brain says goodnight.

    Thanks everyone for your efforts.
    We will stink/think our way through it, of that I am sure. ;):)
    WE are fatigued, but mighty fantastic.
     
  14. Marylib

    Marylib Senior Member

    Messages:
    428
    Likes:
    11
    New Zealand
    Thoughts after cooling down my temper...

    Hi all,

    I want to say that I feel a bit sheepish going off on Dr. T. without actually watching the program....And I do so much appreciate (was it Dan? -- sorry my memory) and the rest of you who wrote thoughtfully about this.

    I still doubtful that there is any point making another point to Dr. Oz....but I want to acknowledge everyone's efforts, everyone's passion in this whole matter.

    More power to us all and I am happy to bow to cooler heads.

    Marylib
     
  15. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    55
    stinky finn

    dan thx for your cool head and info on Dr T. Well done. The stinky joke is being willing to raise a stink.

    jam338 thx for the dr oz contact info! I'm still a dinosaur and don't use facebook or twitter - facebook for security reasons & isn't twitter restricted to 144 characters? Maybe I should try that - as you'll see below, I can go on a bit:p

    dreambirdie, koan, and all other stinkers - I think feedback to Oz is good - still would like to get a good show out of him.

    Anyways - below is the letter I spent the day trying to craft. Anyone is welcome to take any parts of it. Might try to be smart like dreambirdie and sleep on it before sending it off


    FIRE THAT PRODUCER!The lack of research into ME/CFS that resulted in the Oct 23 ’09 Dr Oz segment is appalling.


    Hi Dr Oz

    On Oct 23 09 you broke your Hippocraticoath. “I will …..never do harm to anyone …….keeping myself far from all intentional ill-doing

    When I first heard that you were doing a segment on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS), I was thrilled. I’ve been a huge fan since your 1st days on Oprah and have had high regard for the information you disseminate and the “experts” you bring in. I looked forward to you educating the public on what ME/CFS is.

    When I heard that you were bring in Dr Teilebaum as your expert, I grew gravely concerned as he is not a recognized expert in the field. Instead he deals with tiredness. I sent you an email with some of my concerns and suggestions as to how to avoid harming your own credibility and the good work you do and the over 17 million people who have ME/CFS, such as canceling the show, or trying to balance the disinformation with real information by bringing in accredited scientists. I understand the WPI team tried to reach you all week and that you did not respond. I also understand that you received numerous emails eloquently pleading with you not to make this mistake.

    Below are some of the reactions I and my family and friends had on watching the show.

    “CFS” references mixed with talking about normal-life, non-medical tiredness was erroneous and misleading
    The lack of definition of what ME/CFS is, or any factual information on the disease, was non-professional
    Saying that ME/CFS can be cured with supplements is false.
    This has definitely harmed your credibility and that of any of “the best” that you bring on your show as experts – if you can be so off base here, what have you been like on other topics?
    your fan base has been diminished
    most importantly, your disinformation has potentially harmed the 17,000,000 people who have this devastating debilitating disease. You reach a large audience. You affect how society, the medical profession, colleagues and bosses (for the approximately 40 % of those who have it who are lucky enough to be able to work), and disability companies all see people with ME/CFS. In implying that ME/CFS is similar to normal fatigue, or to something like anemia that has a simple cure, you have led people to think that this disease is not significant or debilitating– or really even real. (sorry - I have no words, nor the emotional fortitude, right now to describe all the negative impacts this will have)
    not bringing an expert on the disease onto the show is puzzling – especially in light of the 1st class scientific research on xmrv done by the WPI , NIC and Cleveland Institute, announced on Oct 13 by Science, and since covered internationally by sources such as Reuters, the Wall St Journal, The New York Times, Good Morning America ….

    All day Friday I received phone calls and emails from friends and family about your show. All comments were negative about what you had done and everyone was concerned about the impact on the already difficult lives of those stricken by this illness.

    I close with a quote from Dr. Nancy G. Klimas, who serves on the board of directors of the International Association for Chronic Fatigue Syndrome, and is a director of the department of immunology of the University of Miami School of Medicine and director of research for clinical AIDS/H.I.V. research at the Miami Veterans Affairs Medical Center.

    “I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

    I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it. “
    http://consults.blogs.nytimes.com/2...onic-fatigue-syndrome/?scp=1&sq=Klimas&st=cse

    I believe you are a man of integrity. I haven’t given up on you yet. You have the opportunity now to do a segment on ME/CFS that will show the facts and true face of this nightmarish disease.



    Sincerely
    xxxxxxx


    Cc to Harpo Productions
    Real Age
    Rock 30
     
  16. Karena

    Karena Guest

    Great letter!

    Regarding some earlier posts, I can't understand anyone wanting to give Dr. Oz and Dr. Teitelbaum the benefit of the doubt. Their intentions don't matter. You can't understate the amount of damage people like this do to us.

    The medical community and society at large want to believe this syndrome is all in our heads (i.e. it's our fault--we caused it by doing too much and we stubbornly refuse to cure ourselves with simple self-help techniques). Dr. Oz's show feeds into that desire and reinforces those stereotypes.

    I've had CFS since 12/6/90. Despite advances in research, I haven't noticed any appreciable change in attitude toward my illness. I hope that changes, but I'm not holding my breath.
     
  17. Jerry S

    Jerry S Senior Member

    Messages:
    422
    Likes:
    13
    Chicago
    Wonderful letter, Finn! It stinks goood.

    PS: Welcome Karena!
     
  18. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    Morning All,

    As a long time veteran of the ME/CFIDS/CFS wars (1979 = 30 yrs) I can attest that the recent work and media awareness is unprecedented in this illness.

    I remember being thrilled when Hilary Johnson got a piece in Rolling Stone - not exactly mainstream media.

    In the past couple of weeks we have been all over the New York Times and the Wall Street Journal which are only the two most surprising venues. The XMRV research, accompanied by the message that this is a physical illness and not a psychological one, has been everywhere that actually matters: the Journal Science... and, there was a fantastic piece on GMA.

    All of this following just the first volley by WPI. Just the first round of research got all of this ink and tape. Given the history of this illness and the fate of at least one fine researcher, WPI cannot be unaware of the need to have an unassailable second volley ready to go. They know what probable tactics will be used to discredit them. They were smart enough to nail down the connection to XMRV. They were smart enough to release it in such a way that almost every major outlet carried the news that we were not imagining we were ill, we were ill.

    I don't believe that 15 minutes on Dr Oz can unring that great big bell.

    Personally, I sent them a couple of emails in an attempt to convince them to pull the show from their schedule. In the clear light of morning, I'm thinking that I should leave it at that for now. I don't want to create a climate in their production offices where anything coming in from an ME/CFS patient is presumed to be angry. I think it's great that others have said: what were you thinking? But, I think a short burst of that is probably enough.

    I feel the need to say here, that I frequently, maybe mostly, don't know and could always be wrong. I was totally wrong about Dr T's connection with FFC, for instance. I could be wrong now, but I don't think so.

    Now that they have heard that the audience thinks they missed the mark - thank you Finn & others, should we not be friendly again and let them be on our side. I don't think there is any point in pushing this to the point where they will not be willing to do a follow-up on CFS without needing to feel defensive.

    Someone here, wisely, commented that Dr Oz would not backtrack. Ok, that's fine, we don't want anyone to have to say they have been wrong. We just want them to be right next time. :) We, being nice and reasonable people, will help them :D

    We can be very helpful ;)

    I'm sure there are other places where we can be stinky :p

    Again, I could always be wrong. Wouldn't be the first time!

    Peace out,
    Koan

    ETA Simon Wessley, and his acolytes, will take a lot of our energy. There are those already suffering and those who will suffer if they manage to leap the pond.

    Prof. Wessley makes "it" up as he goes along. Prof. Wessley is a law unto himself.

    An example of his creative thinking unfettered by common sense: Prof. Wessley teaches that the major difference between shell shocked soldiers in the first world war and soldiers with PTSD today is that shell shocked soldiers did not have flashbacks. I don't know why he thinks that. Anyway, he teaches that people only started having flashbacks after it became a technique in movies!

    He lectures that traumatized people only became haunted by their horrific memories when they started watching movies! Prof. Wessley, clearly, has no knowledge of literature!

    I think we will be quite busy dealing with the desperation of those who are truly dangerous and not simply uninformed.
     
  19. Jerry S

    Jerry S Senior Member

    Messages:
    422
    Likes:
    13
    Chicago
    From Koan:

    :eek: :eek: :eek: Aaaaaargh!
     
  20. dannybex

    dannybex Senior Member

    Messages:
    2,279
    Likes:
    581
    Seattle
    Hi IslandFinn,

    Great letter...I admire your passion and am so sorry the show made you so understandably upset, but I'm glad you slept on it as well.

    I think Koan has an excellent point. Perhaps it's time to just step back from the Great and Wonderful Oz (who IS that man behind the curtain?) for a bit, and spend your time taking care of YOURSELF.

    No doubt he's been flooded and is maybe still being flooded with emails from patients and family members, not to mention jabs from folks inside the business -- and has probably heard what you've written above from many others. ???

    Yes, he does have a devoted audience, but with the greatest of respect, I think perhaps you may be giving him too much power (which I'm sure he would enjoy reading about!). His average audience is approximately 3.2 million viewers a day, and I would guess that might be lower on Fridays when a lot of healthy folks are planning their weekends.

    However, in a week or two, after this has died down a bit, the one thing that would definitely get his shows attention is emphasizing how he has lost you (and your family, friends) as loyal viewers because of his erroneous information. Ratings are the name of the game, and I would think they would definitely not want to hear they're losing their fan base.

    Even worse, you could tell him from now on you're switching to Dr. Phil! :)

    Take care IslandFinn!

    Dan

    p.s. I'm curious...where did you get your 17,000,000 figure? It was my understanding that the US estimate is 0.5-1% of the population...closer to 1,700,000 :confused:
     

See more popular forum discussions.

Share This Page