Dr. Oz Show Part 1

Here is Dr. Oz Show on the XMRV virus and CFS - Part 1. His show has generated intense buzz (before and after the show being broadcasted), within the NEI patient community. For me one of the best quotes of the show was made by Dr. Moore when in conversation with Dr. Oz on the issue of memory loss - she mentioned that patients call it brain fog and she elaborated that is not like not knowing where you placed your car keys...it is you don't know what to do with them, when you find them.

This show is a great educational snippet for the public in general. Some have pointed out that Dr. Oz did not give time for the fact that men are severely affected by CFS-ME too, but he did mention it briefly on the show. Also, he did not point out that children can be affected too, but I suppose it was implied since it is a virus and the public is at risk because of the blood supply becoming tainted. He clearly discussed the fact that millions of Americans based on the percentage being extrapolated to the general population - 10 million - have tested positive for the XMRV virus and don't know that they might be at risk.

Leave a comment on PANDORA's page and let's keep up with the momentum and with the debate. We cannot let our government health agencies off the hook. I believe the NIH is now on board and will try to validate the XMRV virus findings.

But we need to continue the grass roots pressure and as patients we need to take ownership of our future. We need to enhance our political and social level of influence now more than ever.
One Voice, One Community, One Cause(tm)

P.S.: Thank you Dr. Oz!

Dr. Oz Show on CFS This Thursday: Hoping it will be another holiday season gift to our community

Tomorrow, Thursday December 3, 2009, the topic on Dr. Oz television show will be on chronic fatigue syndrome (CFS). This is a much waited show as it is post XMRV virus related findings by the Whittemore Peterson Institute. I am hoping that they will interview Annette Whittemore, her daughter Andrea and of course Dr. Judy Mikovits and Dr. Vincent C. Lombardi. The CFIDS Association released today that Dr. Danica Moore will be interviewed. Dr. Moore has a child with CFS, and that gives her also an unique perspective.

This is actually a follow-up on previous interview with Dr. Jacob Teitelbaum a few weeks ago that also touched briefly on CFS-ME and other related illnesses. I am grateful to Dr. Teitelbaum for his appearance and for his desire to created much needed awareness for CFS-ME. I know that some will disagree with me, as he has taken some flack on how the interview was conducted. In his defense, I should mention that time constraint is always an issue when being interviewed by a television or radio talk show host. I have often joked that by the time I spell out the name of P.A.N.D.O.R.A. and describe the list of illnesses we embrace, I am going to hear those famous words..."Sorry we are out of time" or "You have 30 seconds." Time is finite in the media world. It is quite contrary in my world. To me time is all that I have, time to get better and time to find a cure. But I am digressing...

The important question I am posing tonight is will CFS-ME be given and be discussed with the scientific approach that it is necessary for the sake of millions of CFS-ME patients or will just get the fluffy approach or disconcerting attitude of "Hey Hon, I am tired too"? Like many stricken with a neuroendocrineimmune illness, I want to see a serious debate on the quality of life issues that affect us. I will be watching the show tomorrow with great anticipation, and with great hope that patients will no longer have to hide from family, friends and in many cases from themselves the fact that CFS-ME (as well as other neuroendocrineimmune illnesses) is the main reason why they languish alone and are so often abandoned by family, friends and employers.

I am hoping that they will discuss the need for the establishment of regional research centers by the Department of Health and Human Services (DHHS) as it is part of the CFS Advisory Committee number one recommendation among many others including ensuring the Centers for Disease Control and Prevention (CDC). I say no more excuses from our government!

I hope that these opportunities will continue to lead to a greater debate on the health care issues that are unique to individuals with neuroendocrineimmune illnesses. I am ready to join in the conversation. I know that many others around the country are too. Patient empowerment, taking ownership, standing up for patient's rights, embracing the same issues as a community are all signs being reported by thousands across our country and abroad. This amazing growth is an awesome result of great scale and greater results. I know I want to remain part of the solution. I know I am already in this patient revolution. How about you?
One Voice, One Community, One Cause™

Dr. Nancy Klimas Interview on November 13, 2009

Dear Friends,
Here is Dr. Nancy Klimas November 13, 2009 interview with Bob Mayer from South Florida Today, on NBC 6. Many of you are not aware that Bob's wife has endured CFS for many years and he makes the disclaimer during this educational interview.

I hope this link goes viral. (Punt intended!)

Stay tuned for the video of her XMRV virus presentation on November 7, 2009, sponsored by P.A.N.D.O.R.A., at the University of Miami Medical School auditorium. Soon to come on me-cfscommunity.com and on PANDORA's site.

CFSAC: Marly Silverman Patient Testimony 5

The trip to Washington DC to attend the CFS Advisory Committee meeting was amazing. The first day of the CFSAC meeting the room was packed with patients, researchers and family members. The meeting was held inside the main lobby of the Dept of Health and Human Services. It was an elaborate set up. A main video screen was up towards the ceiling surrounded by dark blue curtains. When the presentation were being made the audience faced the U-Shaped tables covered with dark blue tablecloths, where the CFSAC members were sitting surrounded by microphones, AV equipment and 3 video cameras.
More comments and some personal take on the 2-day meeting as soon as I am able to recoup from the trip.
1 Voice, 1 Community, 1 Cause!

'Click the Share button to create links to this email on popular social networking and bookmarking size like Facebook, Twitter, and Digg.'

Here is PANDORA's latest newsletter. It is good reading!

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We are now 7 days before the next CFSAC Meeting in DC - This video should get you fired up to attend! "Does a Virus Cause Chronic Fatigue"

We are just about 7 days before the next CFSAC Meeting in Washington DC on October 29-30, 2009. This video should get you fired up to attend such an important meeting. We, patients need to show up in great numbers. We need to carry signs, t-shirts, bring pictures for the Empty Chair Project and if you are going to speak during the assigned public testimony periods, please send me an e-mail at msilverman@pandoranet.info with your prepared text. I am attempting to publish and publicize every poignant testimony, even if it is barely a whisper like in the case of Laurel Bertrand let me know, so we can share your story as well before, during and after the meeting.

IT IS TIME FOR CHANGE!


Does a Virus Cause Chronic Fatigue?

AMERICA'S GIVING CHALLENGE - The Neuroendocrineimmune (NEI) Center

P.A.N.D.O.R.A.'s cause on Facebook is The NeuroEndocrineImmune (NEI) Center -

Our cause is in America's Giving Challenge—Let's win $50,000!
Hi everyone,

Our cause just entered in America's Giving Challenge, which gives us a chance to win $50,000! To win, between now and November 7th we have to get the most donations to our cause (every person can donate once per day and have it count as a unique donation). We can also win daily awards of $1,000 and $500 if we can get the most people to donate in any 24-hour period. The great thing about this Challenge is that it doesn't matter how much you give, but instead how much you do to encourage friends and family to get involved in our cause. We all need to come together and start promoting the cause if we want to win.

A $10 donation is what I am asking to all of PANDORA's members, my family, my friends, my colleagues and our corporate supporters. Please do it NOW, because competition is fierce and we need to have what they call "unique donations", which means donations made by different individuals every day. The challenge will run from Oct 7 to November 6. The clock is ticking.

Each of us has tons of friends on Facebook who we can ask to donate to our cause. But let's think big too—can you put our cause in your email signature, can you throw a party and get people to donate through the cause when they enter, can you organize other people to go out and fundraise from all of their friends? As you reach out to your friends be sure to tell them why this cause matters to you. The possibilities are endless so let's talk about what we can do to win on the Wall of the cause or by replying to this bulletin.

I think we can do it! But it's going to take all of us. Check out the Giving Challenge ( www.causes.com ), then visit our cause to see how we're doing so far and get involved.

Let's win $50,000 for our cause!