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.

DR OZ TODAY (12/3) on CFS/XMRV

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Dreambirdie, Dec 3, 2009.

  1. DrDonnica

    DrDonnica

    Messages:
    60
    Likes:
    0
    Well, I finally got a chance to watch the Dr. Oz segment & to read all of your comments! Overall, I thought they did a terrific job although I was a little disappointed that some of my comments were edited out. The editing was masterful in a way--because if I hadn't been there I wouldn't have known that things I said were no longer there--but it did seem odd, particularly in the section where he asked me a whole bunch of questions at once & they edited out my answers to all but the first one (about the XMRV test). Overall, though, I think they did a very good job & I am very pleased. Re: the exercise comments. I see where many of you are coming from. But remember that there are also many PWC who are not housebound & not completely debilitated. Those people do benefit by some gradual MILD exercise, when they are not in a flare/relapse. The reason I was nodding, however, when Dr. Oz said the comment about the mailbox is because before the show, he was planning to say "do as much exercise as you can" and I asked him to add "even if it's just walking to the mailbox". Of course, most city dwellers don't have to walk to the mailbox, but it was the best thing I could think of at the time (as a suburbanite whose mailbox is at the end of my driverway)! Thanks to all for the positive feedback, particularly about the article and again, to Dreambirdie for organizing this!
     
  2. Frickly

    Frickly Senior Member

    Messages:
    1,046
    Likes:
    35
    Texas
    Dr. Donnica

    This is the part that I remember the most. I kept thinking why did he ask all those questions and only let you answer one. I was a little disappointing as I wanted to hear what you had to say. You did an excellent job. :D:D:D:D
     
  3. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,395
    Likes:
    222
    Clay, Alabama
    We

    We all know that the guests do not have control, they can only hope to influence. Obviously, despite Oz's lack of expertise in the area, he was willing to be influenced by Dr. Donnica, Gina and Mikovitz.

    He should receive credit for being willing to do this segment after hearing the complaints about the previous one on fatigue. He should be credited for being willing to listen and wanting to learn. And, he should be credited for standing up on behalf of women whose doctors don't listen but assume a woman is just neurotic. I think the last point is one of the reasons he is so popular. ( and his haircut likely doesn't hurt )

    Tina
     
  4. KC22

    KC22 Senior Member

    Messages:
    158
    Likes:
    3
    Ohio
    Dr. Donnica..

    I just watched the video of the Dr. Oz show with my husband. He, too, was very impressed. You did an outstanding job!!!

    Yes, there was some editing and you could see where you didn't get to finish all the questions he asked, but you are so precise in whatever time you get to speak.

    I related very much to try to walk slowly to the mailbox. My mailbox is at the end of a long driveway and that is a huge accomplishment for me if I get the mail. I am glad you gave him that example. It was a visual as to how difficult it is for us to exercise.

    I think you should be proud of the job you did today!!! We all give you a big THANK YOU!!!
     
  5. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,395
    Likes:
    222
    Clay, Alabama
    ok

    Ok, I can't find the video. I wanted to show my husband. Can't find it on the Oz Web site or Youtube.

    Tina
     
  6. Martlet

    Martlet Senior Member

    Messages:
    1,837
    Likes:
    3
    Near St Louis, MO
    Tina - I know the feeling. I had planned to watch it but was not too perturbed at having missed it until I started reading all these good reviews.

    Dr Donnica - thank you so much for all you do for PWcs.
     
  7. Andrew

    Andrew Senior Member

    Messages:
    1,981
    Likes:
    1,275
    Los Angeles, USA
    I think the mailbox comment helped. It sent the message that there are CFS sufferers who are so disabled that walking to the mailbox is a struggle.

    OTOH, his opening was pretty strong. The framework he gave was "There is a new retrovirus out there. You might already have it, but don't even know it. And once you have it, you cannot get rid of it."
     
  8. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,395
    Likes:
    222
    Clay, Alabama
    Something

    Please, although I saw the show, will someone post the video link so I can show my husband?

    And, something has been gnawing at me. The exercise comment I haven't let go of yet. I guess my concern is that the people his message was likely targeted at, women who have it and are just barely hanging on to their life by a thread, are not likely in the bed unable to move. As Dr. Donnica said here, some people have CFS to a lesser degree and some mild exercise will be good. But those people are likely doing too much, work, supper, laundry, etc.

    I remember right after I plummeted, I talked to a woman who used to run a support group in our area. I had two main questions for her. She happened to be a nurse and a CFS patient, by the way. I can't remember one of my questions, but I do remember the other one: When I feel fatigued, should I push myself. Her answer was no. I made a change, realizing I had real limitations and that I needed to let go of some of the things I was trying to do. Within three weeks, I saw a little bit of improvement after months of trying to push through it. I wish I had known earlier.

    I think the most pressing danger is not that an ill person doesn't do enough body movement (exercise if you will) but they may be trying to do too much. So if anything needed to be said, it was the tip to not push yourself to exercise or try to keep up with what you used to be able to do. Your body needs rest periods, and the amount in time and how often will be based on the severity of the illness.

    Tina
     
  9. jam338

    jam338

    Messages:
    17
    Likes:
    1
    Thank you Dr. Donnica---Great Job!!!

    Dr. Donnica you handled this wondefully, especially given the short segment and editing. Good job at enlightening Dr. Oz and the public, thank you.

    Hopefully Dr. Oz will have interest in continuing shows presenting further information showing how debilitating this horrid disease can get.

    I have been bedridden the better part of 5 yrs. and would have had to be on there through special flight arrangements and in a hospital bed or reclining wheelchair. Patients at my level of disability need to be shown at some point. Not saying me as there many of you who are just as disabled. We need to be shown to the world so they can see the importance of finding answers before others newly diagnosed reach this level of disability.

    My husband probably knows more than most hubbies do and is more supportive than most. He drives me to every doctor appt as I can no longer drive...can no longer stand or sit for more than a few minutes. Even with his level of awareness and understanding about the devastating effect of this illness, this show brought him to tears. He is 6'4" former construction worker who can no longer work. His job is being my caretaker.

    We all have our stories of how this illness has wrecked our lives and the impact on us and our loved ones. Those stories need to be shown as well.

    Apart from Dr. Donnica, Dr. Oz will have other connections about XMRV. The WPI study included participation by The Cleveland Clinic. Dr. Oz's book co-author, Dr. Michael Roizen, has a prominent position at The Cleveland Clinic so I am sure Dr. Oz has access to information beyond what we even know. If not, he should.

    Dr. Donnica, has Dr. Oz or his staff mentioned plans for followup shows regarding XMRV/CFS? It would be nice to see the possible cancer connection discussed at some point (precipated by low natural killer cell counts).

    My doctor's clinic is participating in the next testing phase with WPI where I was asked to do a blood draw for testing given my low NK count and outrageously high IL 8 count (over 4,000). Both were key findings in the original study findings.

    I'll let y'all know when I get my test results back, but in all honesty I am expecting it to be positive.

    Thanks again Dr. Donnica, you restored my faith in a medical doctor's ability to create meaningful awaress in a media time restricted venue. A huge applause for you!!!!
     
  10. Andrew

    Andrew Senior Member

    Messages:
    1,981
    Likes:
    1,275
    Los Angeles, USA
    You make a very good point. I guess I was trying to look at the good side, when I simply should have been looking at the content. Exercise should never be addressed in terms of "just try to do what you can," because this ignores the big picture. A person with CFS needs guidance about how to balance rest with activity, not advice to increase. Because the rules that usually apply regarding exercise, don't apply to CFS.

    Anyway, I hope that whatever the next TV show is covers this. And I think it would help a lot to cover how disabling this can be. And also the higher incidence of cancer, heart problems, etc. This is a serious illness, not just an energy problem.
     
  11. Martlet

    Martlet Senior Member

    Messages:
    1,837
    Likes:
    3
    Near St Louis, MO
    I believe it was precisely doing everything I could physically manage that eventually made me so ill. I eventually drew up a graph so I could track how much I could do without repercussions. If I had followed the "as much as you can manage" advice all the way through, the Good Lord alone knows how I would be today.
     
  12. kristin

    kristin Guest

    Unfortunately, I missed the show and I really wanted to see it. If anyone knows if it will be re-broadcast or if I can watch online, please let me know. Thank you.
     
  13. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    Where is the video for that thing? Andrew I love your hat!
     
  14. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    44
    Santa Rosa, CA
    Teitelbaum

    Here is Dr. Teitelbaum's take on The Dr. Oz show.

    http://www.endfatigue.com/health_articles_c/Cfs_fm-dr_oz_tackles_xmrv.html

    ----------
    I just started a new thread, "Dr. Oz and Dr. Teitelbaum (continued)."
     
  15. George

    George Guest

    Gag Me

    While Dr. T is not evil sometimes, I'd like to take a pin to his ego. Me, me, me, me, me and look it's me again. Whatever!
     
  16. BEG

    BEG Senior Member

    Messages:
    942
    Likes:
    163
    Southeast US
    Let's get up and carry on.

    Koan, These are my sentiments exactly, so I won't bother to repeat them. It is my feeling that the words "carry-on" were very damaging. If one patient can carry on, what is wrong with the rest of us? I imagine it's difficult to find one patient representative of us all. At the very least, someone should have mentioned the variety of functional levels among the patient community. If it was mentioned, I missed it, and I watched it twice.
     
  17. Martlet

    Martlet Senior Member

    Messages:
    1,837
    Likes:
    3
    Near St Louis, MO
    I didn't see Koan's message or would have responded to it, but IMHO, you are both right on the mark. When I fell sick with "the flu" I couldn't lift my head off my pillow!
     
  18. Recovery Soon

    Recovery Soon Senior Member

    Messages:
    380
    Likes:
    37

    Teitelbaum is so despicable.

    Let's follow his trail-

    1) Downplays importance of XMRV in Psychology today when it first hits the airwaves. (because he knows it could put him out of business)

    2) Intentionally Distorts CFS as "Fatigue" on Dr. Oz (in order to broaden the target market for his products/services)

    3) Takes Credit for the show that was done to undo all the damage that he created in the first place.

    Dr. T- You're a JOKE.
     

  19. That's a very valid point Recovery Soon.

    I realised this anyway, but today I realised it a little more.
    Let me quickly tell you, without telling people who this person is.

    I got an email from someone today rather well known in the UK for being pro -ME, as in supportive and understanding. They've helped me to defend my disease and even proven it biologically through various tests.

    So I asked if they can be a doctor so I can send some blood off to the WPI in America. Now a spokesperson (on their behalf) wrote back and told me, that there's no point in having the XMRV test as you probably have it anyway. I was like huh? Fair enough, they know my medical history, and maybe they're correct. But I want to know if I have it or not. Why would I not bother? So I kept reading........

    Then the next line (this person is similar to Dr T in UK, but better) they said what we can offer you (supplements) should kill the virus off anyway.
    Again I was like, did I read that correctly?

    Supplements can probably kill off an incurable XMRV infection, and you have it most likely do don't come asking for the WPI blood test!!!!

    I am in total agreement with you that many people out there (no matter how nice and supportive they are, and how ethically and morally upstanding they are as decent human beings) are set to lose money from XMRV. So their disinterest shows, because patients will stop seeing them, or paying them if they realise they have XMRV.

    I'm quite miffed actually, very dissapointing after all this time on our side defending patients against psychiatrists accusations of somatizaion disorder - some decent upstanding supportive doctor's STILL protect their heard from thinning out and trotting off into anothers farmers field.... (not that we are cows), although we could be as they have beautiful eyelashes. :cool:
     
  20. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    Yes, I didn't hear it either but could have missed it. I think that we should look at the written material to make sure that this information is contained therein.

    I think, since many of us would be thrilled to be at a level of illness where we can carry on with difficulty -I considered that remission- it's easy for us to forget that others are not aware of the sometimes catastrophic nature of the illness.

    We heard a lot about the virus but we saw a patient who was functioning and saw a lot of images of people yawning at their desks. If the virus does not pan out, what are we left with?

    I think the written material really must accurately represent the range of illness and ability/disability.
     

See more popular forum discussions.

Share This Page