Dreambirdie's video is on ireport.cnn.com!

muffin

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http://ireport.cnn.com/docs/DOC-484879

CFS Patients Address the CDC
August 24, 2010 | Santa Cruz, California | Vetting explained Posted by:
all2true




CNN producer note

iReport http://www.youtube.com/watch?v=y7VdXX9P58w
I made this youtube video and have no other way to download it other than to provide a link.

Chronic Fatigue Syndrome (CFS) is a serious debilitating neuro immune disease, that is known to affect 4 million Americans, and 17 million people worldwide. CFS has been ignored and dismissed for decades, by both the medical community, and by the government agencies, that we have entrusted with our health. Because of the widespread ignorance regarding CFS, patients with this condition are often reduced to psychiatric cases, mis-treated by doctors, and not given the appropriate treatments that they need and deserve.

The October 2009 discovery of the XMRV virus, in the blood of 68 of 101 CFS patients tested by researchers at the Whittemore Peterson Institute, is a revolutionary finding. It is giving many CFS patients hope for better treatments for this devastating disease, and possibly even a cure.

The recent confirmation of XMRV in CFS subjects tested by researchers at the NIH and FDA needs to be taken seriously by the CDC, which has had a history of failing those who are ill with CFS far too predictably, and for far too long.
Tags: te, patients, cdc, cfs, address
Posted in Assignment: Health care reform and you
======================
WAY TO GO DREAMBIRDIE FOR THE VIDEO AND TINA FOR THE BIRMINGHAM NEWSPAPER!!!!!!
GREAT JOBS GUYS!!!
 

Sasha

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Well done, Dreambirdie! Your video is brilliant and what a good idea to put it on this spot of the CNN site. Hope it gets lots of views - is there any way to tell how many?
 

Otis

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DB,

Left a comment for ya. Got on a bit of a soapbox. :Retro wink: Freaking tired of stories about "chronic fatigue" and photos of cute little harmless mice. The world needs to know this group of viruses are HUMAN viruses.

Otis
 

Dreambirdie

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Thanks Otis--

Pass that link along to all you know who can leave comments.

Wouldn't it be great to get a story about CFS/XMRV/Annette & Judy on CNN!
 

Dreambirdie

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DB,

Yes, a CNN story would be great.

Also, would you consider submitting your video
to the upcoming CFSAC meeting in October?

Gemini
Sure, I can submit the video, but I thought they wanted personal stories at the CFSAS meeting... Mine doesn't exactly fit that category.
 

Gemini

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Sure, I can submit the video, but I thought they wanted personal stories at the CFSAS meeting... Mine doesn't exactly fit that category.
Your video speaks for so many ME/CFS patients too ill to
travel to DC to testify in person or to sit at a computer and
type up their testimony.

Submit on behalf of a group of patients to get its content
in the official record? Just an idea...it's such an excellent
piece of work!

Gemini
 

Dreambirdie

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Thanks for posting your comment, SB. I really hope more people do this.

The media needs to know there is interest in doing a story about CFS... and they won't know unless we TELL them.

Your comment does not need to be long. Here's a simple one.
SAMPLE NOTE TO CNN:


I have been ill with CFS for ______ years. I feel very ___________ (pleased, relieved, thrilled) to see the PNAS research paper has finally been published, replicating the earlier WPI study. Please do an in depth story about this. Thank you.
 

ballard

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I posted a short comment. Please, let's get lots of comments. The fabulous media coverage that we have been getting is great!!!!
Let's keep it coming.
 
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Go Dreambirdie!!!!! Outstanding job on the video and all of your advocacy efforts!! I left a comment, too!!! Keep em' coming guys!!!!
 

Dreambirdie

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I posted a short comment. Please, let's get lots of comments. The fabulous media coverage that we have been getting is great!!!!
Let's keep it coming.
Hi Ballard--

I'm not sure if your comment got posted...? Take a look and see. Make sure you are registered beforehand, and don't put any links in your post or it will be rejected.
 

dannybex

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I posted a comment and hope others will too. it only took a minute to register. Now if only I could think and write faster...!
 

Finch

Down With the Sickness
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An Excellent Idea!

Thanks once again, Dreambirdie, for another excellent idea. I have registered and submitted a comment and urge anyone else reading this to do so.

Gee, I've never been one to speak out like this before, and I think I'm kind of starting to enjoy it! Hmm...

Gotta love the Internet and email. It gives a voice to those who've never had one before. Now if only someone with some influence will pay attention and respond! C'mon CNN!
 

Dreambirdie

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Thanks once again, Dreambirdie, for another excellent idea. I have registered and submitted a comment and urge anyone else reading this to do so.

Gee, I've never been one to speak out like this before, and I think I'm kind of starting to enjoy it! Hmm...!
I am so glad to hear that you have begun to enjoy speaking out. YAY!

It doesn't take much effort and it adds up when we have many voices joining in.