• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Please WRITE and THANK DR OZ SHOW

Dreambirdie

work in progress
Messages
5,569
Location
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.
 

KC22

Senior Member
Messages
161
Location
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!!!:)
 

Andrew

Senior Member
Messages
2,513
Location
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
 

parvofighter

Senior Member
Messages
440
Location
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.
 

leelaplay

member
Messages
1,576
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:)
 

Marylib

Senior Member
Messages
1,155
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?
 

glenp

"and this too shall pass"
Messages
776
Location
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
 

leelaplay

member
Messages
1,576
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

Hi glenp - every little bit does help. And another place with feedback seems a great idea to me. yay you

Wildaisy said:
Dreambirdie, I just want to thank you for starting this thread. When someone does something right like this, I think we need to show our appreciation.

absolutely agree wildaisy

for you dreambirdie

a field of flowers

Field_of_Flowers.preview.jpg


and dream flowers

purple-flowers.jpg


if:)
 

blackbird

caged.
Messages
100
Location
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.
 
Messages
60
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!
 
A

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.
 

Dreambirdie

work in progress
Messages
5,569
Location
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!
 

blackbird

caged.
Messages
100
Location
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.
 

Dreambirdie

work in progress
Messages
5,569
Location
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"