Making NIH and CDC accountable

[Andrew]

I don't know how we would do this, and I'm not sure what I can do. But I thought I'd post a couple ideas.

First, I think we have a window of opportunity here. We are riding high now. But this news coverage could dry up in less than a year. And the the federal agencies that are motivated to cover their asses are not going to throw their arms open and say "We have sinned, here's all the money you need."

So I'm thinking of a couple of things.

1. At the end of the current NIH fiscal year, see how much they have given to CFS per person who suffers with it. Compare this to similarly debilitating illnesses, while making sure not to disparage the other illnesses and their need for help. Then look at how much money NIH had left over in their entire grant budget to see how much they failed to give away. I think we will find that they have given us pennies compared to dollars. I think we will find millions left over that they did not grant.

2. A class action suit against the CDC. My main interest in this is so depositions can be conducted and changes can be made.

Problem is, I don't know how to do this. Maybe we can identify one of our organizations that would be good at this.

PS: I think I saw someone at the prohealth forum several months ago talking to a lawyer about a class action suit. I don't know what came of it.

 

[anne]

Unfortunately, you can't sue the government, except under very special circumstances. We could all go trip and fall on CDC grounds, but I think that's it.

 

[Jerry S]

I think Dr. Grobstein rocks, Wildaisy. She explained the whole mess at the CDC and what to do about it. All in 5 minutes.

And, she got Peter White in there, too.

 

[Roy S]

I wrote this before the XMRV news, but the government still works the same.

http://forums.aboutmecfs.org/showthread.php?t=599

 

[Andrew]

If I remember correctly, Osler's Web reported that the NIH was given money to give to CFS but they were only awarding it at a token level. Not only does this cut off money, but it discourages research in the field.

Anyway, I don't know what the problem is now. It could be the NIH and/or it could be the funding they are getting. But I will say that the system that leads to and involves the NIH is not our friend. And I'm also beginning to see the importance of hitting them with the past, to make them realize they have to be accountable in the future. Otherwise, they will see this as one more instance where they can get away with flim-flam.

 

[Andrew]

I want to add this regarding the NIH. I was flipping random pages in Osler's Web and landed on page 362. On this page the author points out that in the four years leading to 1990, the NIH'S NIAI had rejected all but two research proposals for CFS. Among those rejected was Nancy Kilmas, who had had little difficulty getting grants for other types of research. Klimas is reported as saying "[They are] funding sick dog research at a much higher level than they're funding chronic fatigue syndrome research..."

 

[Wayne]

I think we all need to let Dr. Frieden know how we feel about Bill Reeves.

Hi Wildaisy, Hi All,

I agree with your above. I'm going to try to let him know if I can get around to it. Thanks much for all the contact info.

Wayne