Article: The Times They Are a Changing - CAA Nominates Distinguished Researchers To F

You can view the page at http://www.forums.aboutmecfs.org/content.php?230-Distinguished-Researchers-Fill-Slate-for-CFSAC-Nominations-From-CAA-CFS

 

Wow! Great information here - I'm blown away with the names

Great find Cort: What is the process by which these nominees are selected? Who votes on them? Do they all show up at the CFSAC this year and then get voted on? Do the previous people vote them in?
Ideas on how this process works?

Ian Lipkin, PhD is leading the NIH study. Is that any sort of "conflict of interest" that you can think of? He doesn't "work" for NIH, but is helping them. More curious than accusatory.

It all sounds great to me. I am quite surprised by the line up of heavy-hitters. MAYBE, just maybe, NIH knows they have some very serious issues and it is time to deal with them. I hope so. This Retrovirus family scares me because we still know so little about it and the numbers of "still healthy, not yet sick" are at 7% (or 20 million Americans, just waiting for their infection/disease(s)/cancer(s).)

Great catch! Thanks Cort - M.

 

Sounds promising, hopefully cats too far out of the bag for coverup. I still haven't been able to ascertain what the concerns though about CAA being an uncle tom over the years is about, if that is true then I have reservations about SV.....

 

I am hoping that with this very senior line-up

that Secretary Sebelius will FINALLY read and sign-off on those darn CFSAC recommendatons.
Something has to get the DHHS Secretaries to at least LOOK at them.

I still do believe we all need to email sebelius and tell her to read and sign-off on the recommendations and oh yea, PAY ATTENTION to what is now going on with the new possibly deadly retrovirus, the blood supply, and us CFS/ME folks. We need to set a fire off under her tukas to get her to pay attention...

 

Amazing quality of candidates - there have been some great people already on that committee but it takes political clout to achieve things no matter how good the arguments. This is really good news that such high-profile people are stepping up. Thanks for reporting on this, Cort.

 

Great find Cort: What is the process by which these nominees are selected? Who votes on them? Do they all show up at the CFSAC this year and then get voted on? Do the previous people vote them in?
Ideas on how this process works?


Great catch! Thanks Cort - M.

That is a great question and I don't know. I was nominated for patient representative and for some reason they decided not to chose me- why I don't know, they never contacted me. I believe Dr. Peterson has been nominated before and he's never been chosen.....On the other hand we've had lots of great people over there from Dr. Friedberg, to Dr. Jason to Dr. Klimas, etc.

How do they choose these people? I don't know.

 

From the charter of the CFSAC:

"The Committee shall consist of eleven members, including the Chair, who are appointed by the Secretary or the Secretary's designee. Of the eleven members, seven shall be biomedical research scientists with demonstrated expertise in biomedical research applicable to CFS; four shall be individuals with expertise in health care delivery, private health care services or insurers, or voluntary organizations concerned with the problems of individuals with CFS."

So the members are appointed, not elected, and there is no guarantee that any of these nominees will be selected. I assume that lots of other individuals and organizations have also submitted nominees.

 

I wish

they had nominated at least one of the Authors of the Science Paper. It would be nice to have one person on the committee who has published finding Mulv's in CFS.

An Alter or Lo would have been nice too. None of these nominees are on board with Mulv's definately being in CFS patients. Although Singh may be close hopefully.

Mikovitz would have been my first choice. Ruscetti, Silverman, Alter or Lo also . They have all published the biggest most earthshattering couple of studies on CFS ever! Why not nominate at least one of them?

Lo has even looked into Mycoplasma in CFS previously so you really know where he stands as far as it possible involving pathogens.

Didn't one of the CAA nominees imply that we could have gotten infected with MULV's from all the treatments we've tried. Am I wrong or was that somebody else? Brain' forgetfull today.:worried:

 

Thanks Mina: I should have known to go to the Charter first

But I still don't really understand what I just read. I don't know how these strong people would fit into those categories.

I'm pretty sick today and the brain is gone but I still don't "get it". Why wasn't Cort put in as a CFS sick person? They have a slot for us sick people.

I guess we will have to see how this works and WHO the CFSAC people pick?

Anyone else?? Ideas on how this all really works? Ideas on who the CFSAC people would really want in there? Would they want very strong people in there or less strong people in there?
Some of the previous people were good and very strong while others seemed to just "be there".

Insights into the real process behind this please???

 

Yes Bakercape, Mellors implied that. I have no idea why he is being nominated.

The same goes for Dodd who had the following to say on blood safety:

From the transcript covering the meeting of FDA EMERGING INFECTIOUS DISEASES CONFERENCE held earlier this year.

DODD: "In the context of XMRV, I think that there is an emergency, but it's a perceptual emergency. And I'm not as well versed in the tools of managing that, but I think that what we need to do is to manage people's reactions rather than people's safety at this point. "

 

Didn't one of the CAA nominees imply that we could have gotten infected with MULV's from all the treatments we've tried. Am I wrong or was that somebody else? Brain' forgetfull today.:worried:

Yes, Dr. Mellors implied that during the Q&A after the XMRV conference. There is a thread discussing it. http://www.forums.aboutmecfs.org/sh...lors-Expert-in-Infecious-disease-amp-HIV-AIDS

 

Might be time for us to go person by person and see what they "really" think about CFS and the new retrovirus family. The comment made by Dodd is NOT good. His credentials look good on paper, but we need to know more about comments like that ONE.
Ditto for the others. What's the real dirt on them?

Guess that means we have to go through papers, meetings, hearings, etc. and see what they have said. Having said that, if we do find out that one or some of thse people are NOT want WE want, then what do we do? What say do WE have in any of this???

On paper they look impressive. But the real dirt is what we need. Someone in another post made a comment about Lipkin and why he has done little to nothing about CFS even though he was aware of it going back to the 1980s. True? If true, then why didn't he step in? Fear for his career?

I hate digging for dirt on people but we must have the right people in the right places. Let's start the dirt-digging before CFSAC. Or who knows what we may be stuck with at one of our most crucial times in our disease.

 

But these people are only one set of nominees. Every one of us could have sent in nominees. These appointments, like all other government appointments, are done within the government. It's quite likely that none of these people will be chosen. I would be very surprised if WPI did not send in a slate of nominees. There have been years when none of the CAA nominees were chosen. The CAA nominated Mikovitz last year, but she wasn't chosen. All of their nominees for past years are on their website. There have been many great nominees in the past who were not chosen, and HHS doesn't say why they made the decisions they did.

 

Thank you for that info Mina. Maybe all that needs to change.

It's been too long since I've been aware of how the Federal government goes about picking people and this CFSAC group is quite a bit different than regular Fedreral government hiring. I am most aware that they can write job descriptions, etc. so that their favorite is the only one that fits, but past that, I just can not remember a single thing of Federal government empolyment rules/laws, etc. Again, this CFSAC thing is a whole different situation and we don't really know how it works, who picks, what the criteria are, what's going on inside, etc. etc. But then we do have the Transparency thing going on in the Government now. Might be time to pull that one and force the CFSAC to make OPEN how they choose the members.

Guess I will have to call Dr. Jones again. I left her alone for about 18 months, but guess it's time to bother her again. She just SO loves when I keep up the emailing. Poor Wanda. I think she means well...

 

We might email CFSAC and find out what the process really is

It's time WE play in this game. We need to know what they are doing and why they pick the people they do. And why don't we have say in this? Taxpayers and all that.

Time to hit CFSAC with emails asking them to explain the process and what the CFS sick input WILL be.

Push on your government. If you don't push, email, scream, make yourself a "gracious" problem, then NOTHING gets done. On one RFP, I called the contract officer no less than about 60 times. She would NOT answer the phone. I emailed her over and over. I was mad as hell since I needed that info and had a right to it. So I found out who her boss was and called that person. It was a dice-roll since I could have made my company look bad and then no matter how good our proposal was, we didn't stand a chance, but, she was not doing her job and I and other contractors needed that info to do our jobs to support the government.

I got the answers I needed and also an apology from her boss. Can't recall if we won or lost, but the apology meant that that part of the Federal government KNEW they had to respond to contractors and the public. Things had changed in the government and they knew they had to be far more responsive to those that they worked for and paid their salaries. So, never forget that - the Feds work for you.

 

....except for the patient

There's a fair amount of attention to a virus or family of such, but almost none about healing the patients.

There is a risk that this could be taken up as the n-MRV mission producing research and pharmaceuticals and not a mission to cure and prevent illness in people. Bureaucracies like things which they can claim credit for such as finding a molecule and producing an "medicine". Actual people are incidental, and are an obstacle if they don't feed an agency's needs. Anyone remember the "I am sick!!" letter taped up outside the CDC lab ostensibly researching CFID?

 

Ok, what activism mode do we go into, mellors and dodd sound concerning if not a few of the others

 

It's time WE play in this game. We need to know what they are doing and why they pick the people they do. And why don't we have say in this? Taxpayers and all that.

Time to hit CFSAC with emails asking them to explain the process and what the CFS sick input WILL be.

Push on your government. If you don't push, email, scream, make yourself a "gracious" problem, then NOTHING gets done. On one RFP, I called the contract officer no less than about 60 times. She would NOT answer the phone. I emailed her over and over. I was mad as hell since I needed that info and had a right to it. So I found out who her boss was and called that person. It was a dice-roll since I could have made my company look bad and then no matter how good our proposal was, we didn't stand a chance, but, she was not doing her job and I and other contractors needed that info to do our jobs to support the government.

I got the answers I needed and also an apology from her boss. Can't recall if we won or lost, but the apology meant that that part of the Federal government KNEW they had to respond to contractors and the public. Things had changed in the government and they knew they had to be far more responsive to those that they worked for and paid their salaries. So, never forget that - the Feds work for you.

we need to do this!! muffin is right. everyone, please email wanda. what is her email address, muffin?

 

they had nominated at least one of the Authors of the Science Paper. It would be nice to have one person on the committee who has published finding Mulv's in CFS.

An Alter or Lo would have been nice too. None of these nominees are on board with Mulv's definately being in CFS patients. Although Singh may be close hopefully.

Mikovitz would have been my first choice. Ruscetti, Silverman, Alter or Lo also . They have all published the biggest most earthshattering couple of studies on CFS ever! Why not nominate at least one of them?

Lo has even looked into Mycoplasma in CFS previously so you really know where he stands as far as it possible involving pathogens.

Didn't one of the CAA nominees imply that we could have gotten infected with MULV's from all the treatments we've tried. Am I wrong or was that somebody else? Brain' forgetfull today.:worried:

You can only nominate people who agree to be nominated. Judging from the people they DID nominate I imagine they asked either Dr. Alter or Dr. Lo to be on the committee. The WPI certainly has the opportunity to nominate Dr. Ruscetti or Dr. Silverman or Dr. Mikovits if any of those people wish to serve.

 

Might be time for us to go person by person and see what they "really" think about CFS and the new retrovirus family. The comment made by Dodd is NOT good. His credentials look good on paper, but we need to know more about comments like that ONE.
Ditto for the others. What's the real dirt on them?

Guess that means we have to go through papers, meetings, hearings, etc. and see what they have said. Having said that, if we do find out that one or some of thse people are NOT want WE want, then what do we do? What say do WE have in any of this???

On paper they look impressive. But the real dirt is what we need. Someone in another post made a comment about Lipkin and why he has done little to nothing about CFS even though he was aware of it going back to the 1980s. True? If true, then why didn't he step in? Fear for his career?

I hate digging for dirt on people but we must have the right people in the right places. Let's start the dirt-digging before CFSAC. Or who knows what we may be stuck with at one of our most crucial times in our disease.

Lipkin did do a study on ME/CFS and bornaviruses and he is now participating in two important studies. Its possible that even though he's believed a pathogen is involved he hasn't seen a pathogen he felt could account for CFS.

The question is in what kind of context do you want to place him and other prominent researchers that enter the field now? Is your glass going to be half empty or half full? Do you want to focus on what they haven't done (not many researchers have worked on CFS!) or do you want to applaud the fact that major researchers are finally stepping into the field, or, in this case, that one of the top pathogen detectives is now engaged in two studies on CFS?

Some of these people are definitely not jumping on the XMRV bandwagon and they have real questions about it and they are not alone. Read the latest article in Science - the field is described as being in a 'zone of chaos'. They may very well have some opinions that do not accord with ones you or I hold. They may bring even MORE questions and sharper questions than we've seen in the past but they are pathologists and infectious disease specialists - they are not CBT practitioners - and they clearly believe infections and pathogens play a key role in this disorder or they wouldn't be there.

Of course if they get selected they'll bring more heft to the Committee - something that's definitely needed. Do you think they going to vote against increased funding for ME/CFS? Or against funding Centers of Excellence? Their role is to help guide the govts response to CFS - to prod it to do the right thing. Whatever they think of XMRV they are certainly going to advocate for more funding into the pathophysiology of this disorder.