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FDA/NIH PAPER IN LIMBO; PATIENTS UNITE, by Mindy Kitei

Lynn

Senior Member
Messages
366
Thanks Mindy. Another great article. Thank you very much for staying on top of this. It worries me that there is a possibility that the NIH paper won't be published. What could that possibly do but gain the government some time to come up with a test and a plan?

Lynn
 
Messages
87
I've just posted an article on CFS Central about the embargoed FDA/NIH XMRV study and the published CDC XMRV study. I interviewed Judy Mikovits, the editor of PNAS, patients and insiders.

Mindy Kitei
CFS Central
http://www.cfscentral.com

Mindy is walking point on CFS. Great straight reporting. She will be in the running for a Pulitzer if this keeps up.

CFS CENTRALS STORY NEEDS TO BE DISSEMINATED AS WIDELY AS POSSIBLE.... It speaks for itself.....
 

V99

Senior Member
Messages
1,471
Location
UK
I'm going to say it. This is a cover up. Every day, minute, second that this paper is 'held back' or not published is a cover up!!!!

We should get every single forum and blogger to write those words as the heading of as many threads and blogs as possible. Lets heat up the internet.
 

usedtobeperkytina

Senior Member
Messages
1,479
Location
Clay, Alabama
Don't worry, other labs will step in. Notice Mindy's sources say the WPI samples were confirmed by two other labs. Notice that another lab sent CDC positive samples.

So that's three other labs that know how to find it.

If these three get with WPI and FDA and NIH, then the CDC will have no power to stop the avalanche.

This hit front page of two science journals. This is shocking. So, basically, even if the FDA / NIH paper never gets published, the results are well known. And, the researchers' view of CDC study will be negative, just in the way it was handled.

So don't fret. CDC may be the biggest kid on the playground, but if the many other children unite, the CDC will not be able to stop the others from playing with the ball.

Tina
 

V99

Senior Member
Messages
1,471
Location
UK
I realise this is out of the bag, but we cannot afford to let this go if it could be the cause.
 
Messages
20
Location
upstate New York
I agree - never underestimate the ability of government agencies to sweep things under the rug (spoken as a former government employee....) And they are somewhat sensitive to political pressure.
 

pollycbr125

Senior Member
Messages
353
Location
yorkshire
Mindy do your inside sources actually say what they are going to do or what they are willing to do should the worst come to the worst. Are they going to help us by sticking their necks out or help bury all this in the sand ? We cannot allow another cover up by the CDC . Not only that but it will be the death of true science as we know it . Any honourable scientist infact anybody with any morals whatsoever should be horrified by all this .
 
Messages
49
Thank you for this new article Mindy!!! Keep those sources talking! It's not surprising that CDC made the initial request to pull the NIH paper, but it's dismaying to realize that they have enough clout to not only get DHHS to go along with their wishes, but also allow them to publish their own flawed study.

I was already sick with CFS when Elaine Defreitas published her paper on the CFS retroviral link, and I remember the VERY deep disappointment when retroviral research was abandoned and forgotten. I never thought I'd live to see history potentially repeat itself (not to mention STILL being just as sick or sicker after another 20 years). I fervently hope that DHHS officials aren't thinking that the CDC study is the "correct" one and the NIH/FDA studies are possibly "contaminated" or something similar. Also it's very disturbing to think that NIH can legally sit on this information indefinitely.
 

usedtobeperkytina

Senior Member
Messages
1,479
Location
Clay, Alabama
As for the handing out of info, I think that is a good idea. As long as, the information is exactly correct.

Has any study confirmed it is in blood supply? Closest we have is Jerry Holmberg's statement, unless I have forgotten.

And by the way, people going in to donate blood may not be as affected. Another idea.... how 'bout handing out this info outside the cardiology department of your local hospital? Hey, it can even be presented as "We care about you and want you to be aware of the dangers."

Put in October 2009 study, say FDA has no policy banning donations from CFS patients, even though AABB recommends not donate. Then quote CDC that less than 20% have been diagnosed. (tee hee). Have some patients with no makeup, in their PJ's on loungers, looking bad, to give real life visual. Include a picture of a young person with CFS on oxygen in the pamphlet.

Can you imagine some heart by-pass patients telling their doctors they don't want to have blood transfusions. Then the blood banks will put pressure on FDA and other government agencies to get it right.

Tina
 

Jerry S

Senior Member
Messages
422
Location
Chicago
Brilliant article, Mindy! You're doing the best XMRV/CFS reporting on the Web -- bar none. If only the NY Times and the Washington Post had someone as good.

Thank you!!!
 

SOC

Senior Member
Messages
7,849
Excellent work, Mindy! We need to get this kind of straight reporting needs to reach bigger outlets.
 

bullybeef

Senior Member
Messages
488
Location
North West, England, UK
Thanks Mindy, for another great article, great to see you got the blood letter link. I must have missed Joan committing suicide, another life lost thanks to lies and money!

Can I ask you Mindy, are you in conversation with Amy Marcus at the Wall St Journal? Would she be interested with the blood letters? I think the national media being privy to the fact this situation has happened before would be very important.
 

Eric Johnson from I&I

Senior Member
Messages
337
Tina,
That method is potentially quite powerful. Especially because there is a clear alternative for those with scheduled surgeries which is already practiced commonly: they can have their own blood taken out in advance and stored, so that they don't have to receive another person's.

I think we should wait, and closely coordinate anything we do. That we we can

1. assemble high-quality info and presentation
2. instead of actually acting, potentially reach an accommodation with HHS about whether this paper is going to eventually be released
 

LaurelW

Senior Member
Messages
645
Location
Utah
Very well done, Mindy! Thank you so much for being our advocate. When the time comes to take action, I'm in! Especially if it's stuff I can do without leaving home.
 

Recovery Soon

Senior Member
Messages
380
As for the handing out of info, I think that is a good idea. As long as, the information is exactly correct.

Has any study confirmed it is in blood supply? Closest we have is Jerry Holmberg's statement, unless I have forgotten.

And by the way, people going in to donate blood may not be as affected. Another idea.... how 'bout handing out this info outside the cardiology department of your local hospital? Hey, it can even be presented as "We care about you and want you to be aware of the dangers."

Put in October 2009 study, say FDA has no policy banning donations from CFS patients, even though AABB recommends not donate. Then quote CDC that less than 20% have been diagnosed. (tee hee). Have some patients with no makeup, in their PJ's on loungers, looking bad, to give real life visual. Include a picture of a young person with CFS on oxygen in the pamphlet.

Can you imagine some heart by-pass patients telling their doctors they don't want to have blood transfusions. Then the blood banks will put pressure on FDA and other government agencies to get it right.

Tina

This is exactly what is needed- NOISE. Demonstrations like this will scare the sh.. out of the public, and rightfully so.

That's how we get on Front Page and 6 O'clock News.
 
Messages
33
Has anyone started a thread? So that we can organise a world wide demonstration? If so can someone pls advise- where is it? We are in the UK and more than happy to do anything we can from this end.... I agree a worldwide demonstration is in order - the FDA study has implications for us all. And timing is critical.....