Interesting blog on CAA an CDC

[Cort]

And what about this strange comment

Vernon, who told someone I trust that during the decade she worked alongside Bill Reeves manufacturing abnormal science that the remarks, the activities, the jokes, the attitudes about you and your disease among her colleagues was so appalling that she could not discuss that history in any detail, she was just so ashamed to have been part of it?

Doesn't this suggest that Dr. Vernon should be trusted? That she was not part of the CDC cabal? Apparently not - still Hillary states that CAA DNA is merged with CDC DNA. The woman had just said she was appalled at all that! No mercy from Hillary Johnson.

And of course no mention of all the good science the CAA is funding - the science that could only go to lock in this diseases legitimacy.

I did like this

To which I would say, Stop refining already!

That rang true!

I think this is true too

But we need some uncomfortable voices now.

I'm not saying the CAA is perfect; we need more aggressive voices - we need more radical actions. I've been saying that for a long time but this is unfair

time for an organization that refuses to become party to the government for millions of dollars in remuneration, selling out patients in the process.

We have a difference in strategy - not a group selling out patients. I don't know why she doesn't get that. Why she has to go the demonization route - the sellout theme. The CAA didn;t get rich from the CDC; they did a job for them and while they made compromises they also got access to millions of dollars of govt funds for the media campaign. They could have shrieked and stayed poor or compromised to some extent and got the word out that CFS is a serious illness.

Time for an organization with an effective media strategy, one that includes pushing stories about the government's history of scientific fraud and corruption in the realm of this disease instead of weepy human interest stories that promote poster children instead of scientific understanding.

It sounds good - we'll see how far that goes; the govts history of scientific fraud and corruption.....we should have both actually - weepy human interest stories and organizations that dig into the underbelly of the government (which I will mention one last time - the CAA actually did recently).

Here is pure Hillary - an interesting and debatable point

point here is that every one with this disease has been on the receiving end of the CAA's passive aggressive representation

followed by

, everyone has been sold out, again and again.

in which she goes way too far once again.

And the whole thing about Suzanne Vernon. Suzanne Vernon IS working hard. She IS funding good research. She IS trying to create an International Network that should speed up CFS research. But since she's from the CDC she's dirt in Hilary Johnson's world.....Does that do any of us good? Really?

 

[alice1]

Cort,do you know when this grant process is to take place again and if so how long before they make an announcement?
I would hope that the CAA would be thrilled to grant funds to WPI.

 

[Cort]

I think with the recession and all they're probably struggling with money. I really don't know. They usually post it in scientific journals and I usually don't know anyway.

 

[charityfundraiser]

Did the CAA turn down any funding requests from the WPI? I'm uncomfortable with the fact that every time this issue gets brought up, there is denial that 'no XMRV funding requests were turned down". However, at the time of request, it most likely would not have been referred to as an "XMRV" study...since that's what they were kinda keeping secret?

So, did the WPI requests for funding of any kind get turned down?

Thanks

Think about this for a second. How easy do you think it is to get a grant for research on a secret? If they didn't identify it as XMRV, they couldn't have disclosed one of the main impetus for studying XMRV, the RNase-L connection with existing prostate cancer/XMRV research.

Is this like applying for a job with a resume with secret job titles, or for venture capital for a secret start-up idea?

I'd guess that they knew they could fund $100,000 themselves to get to the point of getting the big government grants.

In any case, the CAA delineated their grant review process, the majority of the selection process is out of their hands and in the hands of several dozen scientist reviewers in the field, as it should be.

 

[Khalyal]

Funny!

But lets not obfuscate the point.

Question - did the CAA turn down any funding requests made by the WPI?

Simple question, all joking aside.

 

[jspotila]

As Cort already said, the Association has policies that govern the review and making of grants. Those policies are available here: http://www.cfids.org/profresources/grant-policies.asp

Consistent with other grant makers, including NIH, the Association does not release information about a grant application unless it is selected for funding. This is standard practice in medical research because it preserves the ability of an applicant to apply to another funding source without word of a previous denial being out there.

This is why the Association can only say that it received no applications for XMRV research. It is against the grant policies (which were approved by the Board in 2008) to say anything about any application that was not funded.

On the other hand, the grant applicant can certainly make public comment about the success or failure of a particular application. Has anyone posed the question to WPI?

 

[alice1]

Can the CAA visitors respond to Khalyals question since you would be the only
ones who'd know.
Thankyou.

 

[fresh_eyes]

Question - did the CAA turn down any funding requests made by the WPI?

Johnson states that 6 funding requests from the WPI were turned down by the CAA. I haven't heard anyone say that this is incorrect, so I would assume that it is correct.

 

[valia]

Johnson states that 6 funding requests from the WPI were turned down by the CAA. I haven't heard anyone say that this is incorrect, so I would assume that it is correct.

Spot on fresh-eyes, this would have been very quickly refuted if not true.

 

[Khalyal]

Wpi

As Cort already said, the Association has policies that govern the review and making of grants. Those policies are available here: http://www.cfids.org/profresources/grant-policies.asp

Consistent with other grant makers, including NIH, the Association does not release information about a grant application unless it is selected for funding. This is standard practice in medical research because it preserves the ability of an applicant to apply to another funding source without word of a previous denial being out there.

This is why the Association can only say that it received no applications for XMRV research. It is against the grant policies (which were approved by the Board in 2008) to say anything about any application that was not funded.

On the other hand, the grant applicant can certainly make public comment about the success or failure of a particular application. Has anyone posed the question to WPI?

Andrea Whittemore Goad posted something to the effect of the WPI being turned down by CAA for grant requests, on the CAA Facebook page.

On some FB post, someone asked Andrea why they didn't apply for a grant from the CAA) and she said they were turned down for more research into XMRV.

(posted by Anne) @
http://forums.aboutmecfs.org/showpost.php?p=17227&postcount=179

I saw it too, at the time.

 

[alice1]

Thankyou fresh eyes and Khalyal.
All orgs should be questioned and held responsible.
I too believe one gets more with honey than vinegar but after so many years the pot becomes empty.

 

[jspotila]

I don't think a post on Facebook can be considered a sufficient waiver of confidentiality for the Association to be able to release information on any applications submitted by WPI. Without such a waiver, the Association is bound by its confidentiality policies. Those policies protect all applicants from unwanted disclosure of confidential information.

As charityfundraiser pointed out several posts above, there is a distinct advantage to WPI (or anyone else) relying on private, direct funding. The Association's grant policies require quarterly progress reports from all funded investigators, as well as published reports through SolveCFS, CFIDS Link, and the Association's website. The WPI was able to avoid the oversight required by the Association, NIH or other funders. As a result, the circle of people who knew that XMRV was under investigation in CFS (let alone the remarkable results WPI achieved) was pretty small, and that contributed to the terrific splash and attention following the publication in Science.

 

[starryeyes]

I don't know how this rumor got started, but the fact is that the Association has not received ANY applications for research funding on XMRV. Zero. Therefore, the Association never denied such a request for funding from WPI or anyone else. No such applications were submitted.

What the WPI submitted were for grants to work on finding biological problems in CFS. They couldn't have submitted a grant to find XMRV because they hadn't found it yet. However, they were denied grant money from the CAA and had to use private funding which led to the discovery of XMRV. The bottom line is, the CAA could have funded that research but refused to.

 

[alice1]

The question I asked wasn't to stir up bad feelings between anyone on this board.
I simply believe that when there are people who are to speak and act on one's behalf
everything needs to be examined.
And I start to lose hope when at this point it still appears that baby steps are what we have.

 

[PoetInSF]

You think what he wrote was neutral or is that your way of saying he's a liar.

It's known that different people can come up with different versions of history. Hillary Johnson's version was written assuming it is an infection and it is a retrovirus from beginning to end, and anybody who disagrees is a part of the conspiracy. (And here we are, 25 years later, repeating the history). Given that her version contains so many unverified or now discredited claims in the hindsight of 2009, I'd read it with a grain of salt.

 

[fresh_eyes]

For my part, I'm not trying to hold CAA's feet to the fire - I just want to know the facts, because I'm new to the CFS community and am trying to comprehend it. Though it's dawning on me that you can't ask questions about these topics without it becoming political very quickly.

 

[alice1]

I agree fresh eyes.
I thought it was just a simple question but apparently not.
PoetInSF the salt never leaves me.

 

[MEKoan]

Though it's dawning on me that you can't ask questions about these topics without it becoming political very quickly.

This is a really political illness. I know you are not saying this but, it would be impossible to ask people to ignore the politics. The politics play a big role in all of the individual issues and problems we face.

It's a really political illness.

 

[Marylib]

44 reviewers

CAA facebook says they are not able to divulge the names of the reviewers, so I guess we cannot contact them.

 

[fresh_eyes]

This is a really political illness. I know you are not saying this but, it would be impossible to ask people to ignore the politics. The politics play a big role in all of the individual issues and problems we face.

Yeah, I'm getting that. I don't mean that people *make* all the questions political - rather that even (seemingly) simple questions turn out to have political dimensions I wasn't aware of.