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!
Brain Cells Making us Sick? The microglia connection in ME/CFS & Fibromyalgia
Simon McGrath looks at theories that microglia, the brain's immune cells, could trigger and perpetuate the symptoms of ME/CFS and fibromyalgia.
Discuss the article on the Forums.

Please WRITE and THANK DR OZ SHOW

Discussion in 'Action Alerts and Advocacy' started by Dreambirdie, Dec 3, 2009.

  1. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,055
    Likes:
    3,224
    N. California
    Dr Oz came through for us.

    He heard our complaints about the last show with Dr T.
    He was WILLING to do ANOTHER show.
    AND... he was sympathetic towards our issue.

    I think it would be a very considerate thing to take a moment to write and thank him, as per Dr Donnica's request.

    "Just a gentle reminder that if you do like the segment tomorrow (or at least mostly like it!), it would be VERY positive reinforcement to thank the producers for revisiting CFS, having us on, etc. http://www.doctoroz.com/contact.
  2. KC22

    KC22 Senior Member

    Messages:
    158
    Likes:
    3
    Ohio
    I agree..

    I sent an e-mail right after the show thanking both he and the producer.

    Thanks Dreambirdie for all of your efforts in mobilizing us!!!:)
  3. Andrew

    Andrew Senior Member

    Messages:
    1,962
    Likes:
    1,229
    Los Angeles, USA
    Here's what I wrote:

    Dear Judy Rybak,

    Thanks to you and Dr. Oz for your special about Chronic Fatigue Syndrome (CFS) and XMRV. I contracted Chronic Fatigue Syndrome in 2005, and by 2006 I could not work anymore. A good day for me feels like I have a horrible case of the flu. A bad day is so scary I wonder how I'll survive.

    As more information comes to light, I hope you consider revisiting this topic. For example, it has been observed that a CFS sufferers are more prone to cancer. Unfortunately, the agencies that would normally take this research further tend to ignore us. I think your show will help turn this around.

    Andrew
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,919
    Likes:
    5,776
    Albuquerque
    I wrote too!

    Sushi
  5. parvofighter

    parvofighter Senior Member

    Messages:
    436
    Likes:
    99
    Canada
    Thanks to Dr Oz show

    Just sent this off to the segment producer, Judy Rybak. Now I'm wiped...

    Hello Judy,

    As a (former) health professional who has been battling Chronic Fatigue Syndrome (ME/CFS) for the past 11 years, I want to thank you and the Dr Oz Show for doing an outstanding job in conveying the science, gravity, and urgency for care for patients with ME/CFS. Patients are losing their careers, their families, lifelong friends (myself included) and even their lives to this devastating, relentless condition. Now we hear that some 20% of XMRV patients who had ME/CFS for 20-30 years, also have lymphoma. All in the face of medical disbelief. I used to be a jock, and a regular keynote speaker and consultant to global medical directors of Fortune 500 companies. We used to hold huge joyous parties for our kids entire classes dunk tanks in the back yard on the last day of school Santa at our house every year. Ive always loved living life BIG, deeply involved in our children, our community, our friends.

    Now I am mostly housebound, and consider it an accomplishment to be able to help my children with homework, or to wash my hair every 4 days. Even having coffee with friends has become a thing of the past Im just too exhausted afterwards, and have nothing left for the family. It is a rare day that I am feeling well enough to make dinner housework is out of the question. My saint of a husband gets it, and is keeping our family afloat. But we are living a mere shadow of our existence pre-ME/CFS our entire family, kids included are paying a dire price for the neglect inflicted upon us by a disinterested and might I venture, intellectually lazy medical community. To an outsider and to many specialists, I look fine. But fashion sense or a dynamic personality is no basis for dismissing a biologically-based medical diagnosis. In a truly sick way we are hoping that I turn out to be XMRV positive, so we can start hoping for more aggressive antiretroviral treatment. Your team with Dr Oz achieved a mainstream breakthrough in conveying a complex, hitherto controversial topic in readily understandable language, and with appropriate tenor for the gravity of this devastating disease. And the video animation of retroviral biology brilliant.

    Kudos to your team for listening to the appropriately irate patient feedback after the initial content-thin segment with Dr Teitelbaum. Todays program is a massive testimony to the nimbleness, responsiveness, and openness of your Dr Oz team to the facts. ME/CFS is a serious neuro-immune disorder with many, abundantly documented spin-off areas of biological dysfunction, including known opportunistic infections and cancers. Many patients are unable fight off common infections such as Epstein-Barr, Human Herpes-6, Cytomegalovirus, Parvovirus B19, Enterovirus, something that it might be helpful to add on your website, as this is often how patients first come to realize that they might have ME/CFS. It is no surprise to me to hear online that the #1 cause of ME/CFS deaths is cardiac. After all, the Germans have identified Parvovirus B19 as the #1 cause of viral heart disease, and our North American cardiac community (who typically dont differentiate active from latent virus) is at least a decade behind. Just do a PubMed search on myocarditis and Parvovirus B19 its almost all German research. I would bet that the vast majority of these viral cardiomyopathy cases prove to also have XMRV as retroviral puppet master in the background. The irony is that these same North American denialist cardiologists evidently trust German science theyre all driving German cars, and using sophisticated German imaging technology.

    Suggesting that a patient with ME/CFS exercise their problems away is as ludicrous as suggesting to a patient with AIDS that they just need a healthy lifestyle to overcome the HIV retrovirus. Again, many thanks to you, Dr Oz, and your team for listening, and getting it! You have done a massive service to our patient community.
  6. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    55
    Parvofighter, your sublime ability with words leaves me almost speechless. Thank you so much for your letter.

    I feel you still "live Big", just in a different way now.

    islandfinn:)
  7. Marylib

    Marylib Senior Member

    Messages:
    428
    Likes:
    11
    New Zealand
    Write to the producer or to Oz website? Both?

    What is the best strategy for our appreciation comments? Judy the producer, Oz webpage?? What do you think, Dreambirdie and others?
  8. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    55
    I did both Marylib. Was tired so just used the same letter.

    islandfinn:)
  9. glenp

    glenp "and this too shall pass"

    Messages:
    753
    Likes:
    16
    Vancouver Canada suburbs
    discussion

    I posted a short blob in the discussion. I think it shows interest. Maybe every bit helps, my cognition is not that great for writing much
  10. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    55
    Hi glenp - every little bit does help. And another place with feedback seems a great idea to me. yay you

    absolutely agree wildaisy

    for you dreambirdie

    a field of flowers

    [​IMG]

    and dream flowers

    [​IMG]

    if:)
  11. caledonia

    caledonia

    Messages:
    2,899
    Likes:
    1,491
    Cincinnati, OH, USA
    I send a message of thanks to Judy, but as I missed the show, I asked her if she could get the segment posted on the video section of the Oz show. Maybe others could do the same.
  12. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    55
    brilliant caledonia!

    if:)
  13. blackbird

    blackbird caged.

    Messages:
    100
    Likes:
    0
    UK
    I'll write once I've seen the show.

    Have to wait for a youtube though, as in the UK.

    Maybe mails over a longer period will help anyway though, keeping the show in mind for longer.
  14. DrDonnica

    DrDonnica

    Messages:
    60
    Likes:
    0
    I asked the producer about posting the Dr. Oz segment on YouTube & she said they don't do that. She also said that the show does air internationally, but interested folks would have to check their local listings for times/topics. Sorry!
  15. Aftermath

    Aftermath Guest

    Excellent Work

    Fantastic idea. I think that hard work of you guys right here on this forum played a large part in them doing this show.

    I moved the thread to the Action Alerts and Advocacy section.

    This will be moved to the top of the forum home page in coming days.
  16. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,055
    Likes:
    3,224
    N. California
    Thanks to EVERYONE for your support and your letters to OZ.

    Special thanks to IF for the beautiful field of flowers! Shucks...:p:p:eek:

    I am feeling under the weather today from a bit of a toxic exposure, but will check in later.

    PLEASE keep those letters coming/going to OZ Show!

    Good job! and A BIG ALMIGHTY HALLELUJAH!
  17. blackbird

    blackbird caged.

    Messages:
    100
    Likes:
    0
    UK
    Just seen on the WPI page on facebook that they have written requesting the segment be added to the Dr. Oz website. (other segments of the show have already apparently)

    So will write now anyway, and ask for the same.
  18. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,055
    Likes:
    3,224
    N. California
  19. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,055
    Likes:
    3,224
    N. California
    From dr donnica

    COuld someone please manage this today. Thanks.


    "All of your notes to the Dr. Oz Show were great, but we should have sent them through the Dr. Oz Show website, not directly to the producer, J. Rybak.
    It was a lapse in judgement on my part to post her email. Can someone please delete that posting + list the link to the show's website feedback instead? Thanks!
    With appreciation
    Donnica"
  20. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    55

See more popular forum discussions.

Share This Page