Article: Altered Realities: The XMRV Paper Disappearing Trick

You can view the page at http://www.forums.aboutmecfs.org/content.php?179-Altered-Realities-How-to

 

.....what an up and down road this has been...

When is CFS anything other than an up and down illness..

 

is it that hard to figure out that sweeping a contagious virus under the rug will just result in more money loss in the long run??? who ARE these morons?

 

is everyone at the CDC a complete retard? is it that hard to figure out that sweeping a contagious virus under the rug will just result in more money loss in the long run??? who ARE these morons?

Daffodil, I'd like to ask that you consider modifying the use of the word 'retarded' in your post. Developmentally challenged is a more appropriate term (there may be others that are even more so). Secondly, I'm concerned that comparing the scientists at the CDC to the developmentally challenged is a very low blow for those who are developmentally challenged.

I worked a number of years with severely affected autistic adults and not once did I detect anything self-serving, cowardly or intellectually dishonest in their motives or actions. Please, the developmentally challenged deserve better treatment than to be compared to the buffoons (sorry buffoons) at the CDC.

 

Our continued pain and suffering should be clocked!

Good Idea CBS,

Just like the National Debt clock or our unfunded liabilities, it's in the Trillions, perhaps we should break it down to the milliseconds! Yeah, 8 months and still "mayhem" I guess some of this stuff is new frontiers, but please let's get on with substantial and cosequential studies that will lead to greater knowledge and TREATMENTS. We need a standard of care within the next DECADE, not the next CENTURY!

I am so tired of dealing with government hacks!!

Cort,

I'd like to throw this out to the community with the hope of getting the attention of some people with the skills to make a project like this happen. Earlier today, someone suggested a clock on the PR Home page to track the time that the delayed publications are costing us.

I want to suggest a clock with a few additions. I want a tally, beginning at zero for an estimated day / time of when the FDA paper would have been released (say Thursday - 7/1/201 at 9 am est). Then, using that time as a base, we use CDC figures to estimate the number of sick days that were lost because of the delay. We estimate economic impacts such as lost wages/missed work hours, lost taxes, etc. Estimated medical expenses,and perhaps even the number of premature deaths (using data such as the study showing that the average age of death from a heart attack vitim with CFS is 58 and the average in the population is in the mid-70s) that occurred during the delay, and the WE"LL NEVER GET BACK.

Given that we're talking about 1-4 million people in the US alone, I strongly suspect that the numbers will become staggering quite quickly.

I'm looking for anyone with ideas/experience that wants to help. We need to make the costs of this delay tangible to the public as well as the DHHS. The human and economic costs of their delay as a tactic to manage the "situation" politically would may on its own cover a significant portion of our future medical expenses.

Let me know.

Thanks

 

What Alisa and Snickers said.