Article: Where's the Beef? The WPI and the NIH

You can view the page at http://www.forums.aboutmecfs.org/content.php?196-Where-s-the-Beef-The-WPI-and-the-NIH

 

I completely agree Frickly.
Most companies would want to proudly say they are sponsoring this conference, so why hide it? Are they about to bring out their own blood test? If they did, and the WPI test was pushed to one side, then most of the money will not go back into ME research.

 

I notice that Ellen E. Sparger has now confirmed her place as a speaker. Only Chow, Singh and Ruscetti left to confirm.

I assume that when it says she works at the School of Veterinary Medicine, we humans should not be concerned.

http://www.virology-education.com/index.cfm/t/Program/vid/1FFCB7B8-FB88-C1D2-92C420E3BCEB0FB0

 

This is all so wrong. i wounder how the WPI feels about not be included the last two conferences. Whats going to happen when the next XMRV conference comes along. Wrong Wrong Wrong.

 

If the Alter study is published, we (the patients) will suddenly have a voice. How do they expect to shut us up on this,

 

The only group with the incentive to find CFS, the ORWH, doesn't have any money.

Check out NIH's 2010 funding for "Women's Health", $3.9 billion compared to "Infectious Diseases" $3.7billion, "HIV/AIDS" $3.1 billion. Perhaps Pinn wants to spend money on her area of expertise--sex & gender in science and medicine instead of on ME/CFS?

http://report.nih.gov/rcdc/categories/

Gemini

 

If the Alter study is published, we (the patients) will suddenly have a voice. How do they expect to shut us up on this,

The talking seems to have moved from "when" the Alter study is published to "if". Is it likely to be now?:sad:

 

I will say that when I told one dental assistant that XMRV is a retorivirus like HIV she sort of pulled back from me. So I realize we are going to be getting treated like lepers who may spread that horrible virus to everyone. But too bad. I've been treated so horribly for having a "fake" disease for so long that actually scaring people with a contagious virus is sort of "cool" in an admittedly immature and nasty sort of way. Or maybe because it's more real and I'm no longer a lazy flake but a sick person with a virus.

I agree. Much rather be a social outcast with a real disease, than a social outcast with a 'fake' one. It would be a step or three up from our current status.

 

Ignore the 'when' and 'if', it's where the information is coming from that's important. We can't trust the DHHS. Who knows which way it will go. However, It's such a big story they are unlikely to stop it.