My New CFS Video--CFS Patients Address the CDC

Sunday

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DB, I've been down for the count, but just wanted to add my thanks and congrats. Writing is good, but it seems as if video is much more approachable to many people. Thanks for doing a great job with this - as others have said, succinct and atmospheric.
 

CBS

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Thank You

Hi DB,

Just wanted to add my voice to those expressing their appreciation.

The quality of your video is excellent and the tone is perfect.

Thank you!
 

ixchelkali

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Well done! I like the way the music creates a mood without detracting from the images. I hope lots of people see it. Thank you for speaking up for us.

Now go take a well-deserved rest.
 

ixchelkali

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Thanks Danny.

I wish everyone felt that way. Unfortunately, I am being attacked on the "other forum" for providing a link to this site instead of theirs.

The message Wild Daisy sent you was:

You don't think for a minute anyone is buying your BS do you?

Of course, now that all the Good Science people have left PR and come to this forum, no one on Cort's forum knows how to interpret all the articles in their vast library (which Kim assembled, before Cort chased her away).


I am so exhausted from this kind of nasty. It really sucks.
I'm very sorry to hear you've had to contend with that kind of snarkiness. It's so uncalled for, and you deserve better.

"...no one on Cort's forum knows how to interpret all the articles in their vast library" Um, thanks, but I've been chugging along reading scientific articles for nearly forty years, I expect I'll get by somehow. And for those who don't have that background, I think Cort has a gift for translating the articles into plain, layman's English.

What a shame someone had to try to spoil your enjoyment of a real accomplishment. I hope you shake it off, like a labrador retriever shaking off water, and get back to celebrating (in a quiet, CFS kind of way).
 

Dreambirdie

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I'm very sorry to hear you've had to contend with that kind of snarkiness. It's so uncalled for, and you deserve better.

"...no one on Cort's forum knows how to interpret all the articles in their vast library" Um, thanks, but I've been chugging along reading scientific articles for nearly forty years, I expect I'll get by somehow. And for those who don't have that background, I think Cort has a gift for translating the articles into plain, layman's English.

What a shame someone had to try to spoil your enjoyment of a real accomplishment. I hope you shake it off, like a labrador retriever shaking off water, and get back to celebrating (in a quiet, CFS kind of way).
Thanks ixchelkali--

I quit the other forum yesterday and am definitely moving on.

With the help of all who have posted and PM'd me to give me such kind feedback and appreciation about my video, I am feeling much better today... just really tired.

I love the black lab image, btw, and will keep it in mind as I go off to nap. thanks again.
 

aruschima

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‎"CFS Patients Address the CDC" , You Tube, July 24, 2010

excellent work on you tube, a message to the CDC and the world !

http://www.forums.aboutmecfs.org/newthread.php?do=newthread&f=14


"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."
 

muffin

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Good job on the CFIDS/XMRV Videos, now they must go VIRAL out into the public

Now we must ensure that they go "viral" and are heard by everyone - not just the CFIDS sick. How to spread this video and all the other valuable related videos out into the world?

You can send this video link to the heads of the HHS, NIH, CDC, FDA, etc. Maybe someone might look. Maybe. But, we need the public to be aware of the dangers in our blood supply AND BLOOD PRODUCTS that we all get and don't realize that they do contain blood from thousands of other people - including those with XMRV in their blood but who have never heard the term and have no idea what it is all about. BLOOD products - not just the transfusions. But all the different blood products that we have all received but did not realize what we were getting at the time.
 

muffin

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Just an aside: but did you all see that the CDC has GET and CBT on their worthless website (21 July 2010) as treatments? Was that there before 21 July?
Was this Reeves last shot to really kill us all off?
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---- SUPER WELL DONE VIDEO!!! We need to get it out to everyone. Really outstanding job! The music is haunting and works for this video. Music leads you to believe that every single person is a target for this disease.
 

Dreambirdie

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---- SUPER WELL DONE VIDEO!!! We need to get it out to everyone. Really outstanding job! The music is haunting and works for this video. Music leads you to believe that every single person is a target for this disease.
Thanks Muffin. I was lucky to find the perfect PD music--something rhythmical enough to help move the words along, but also with a slightly creepy aching tone, to ad to the suspense. Using black and white images, most of which I solarized in Photoshop, combined with that music, helped to portray the bleakness of life with CFS. The ONLY photos I kept in color are the fireworks that come after the news of the XMRV discovery. I really like the way the electronmicrograph of the virus seem to morph, from one panel to the next, into those fireworks. That worked well!

Making video is like putting together a jigsaw puzzle. All the pieces have to fit together just right in order for the whole picture to be seen. It takes a lot of finagling, and time, to make it work and flow, but when it does, it can make a powerful statement.

I hope others, who have the means to do so, will give video production a try. Starry has made 2 already, and they turned out very well.
 

shannah

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Dreambirdie,

I'll just echo everyone else's acolades. Terrific job!!!

Can we upload it to our facebook page? (If that's even possible - I don't know much about fb at all. I mainly keep it to get announcements from WPI etc., but thought I'd ask before I even tried.)
 

Dreambirdie

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Dreambirdie,

I'll just echo everyone else's acolades. Terrific job!!!

Can we upload it to our facebook page? (If that's even possible - I don't know much about fb at all. I mainly keep it to get announcements from WPI etc., but thought I'd ask before I even tried.)
Thanks. Yes, please do upload it to FB, the more places the better.