Taking Back the CFSAC

View attachment 877 We saw the power of the Federal Advisory Committee on CFS (CFSAC) last October when Annette Whittemore, Dr. Peterson, Dr. Coffin and others presented live testimony on video on XMRV. The Committee is one of the only places where federal officials can compelled to give public testimony on the government's response to CFS. Simply as an information source and a platform for action it's been invaluable.

It was at the CFSAC in October 2008 that the CFID's Association of America brought to light the stunning overspending that's characterized the CDC's CFS program over the last few years. (Remember the Platinum Patient Registry?). It was there in May that both the IACFS/ME and CFSAC joined the CFIDS Association in calling for Dr. Reeves dismissal. It was there last November that we learned that the NIH CFS program wasn't responding at all to the XMRV finding.

Despite its recent prominence in the CFS community the CFSAC is in trouble. The CFIDS Association fought off attempts to remove it completely a couple of years ago. Now the federal governments agenda simply seems to be to sideline ever more and more. Not long ago the number of meetings were shifted from four times a year to twice a year - making it effective difficult to provide continuity for the committee and for it to respond to events in a timely fashion.

Now the Committee seems to be slipping further away. The federal government has never exactly been 'on top' of the Committees affairs. Meetings are often announced not long before they take place and agenda's seem to take forever to set. With the meeting 3 weeks away replacements for the four members that with left the Committee at the last session have still not been announced and the normal two day session is now down to 1 day. The federal advisory committee on CFS - one of the few federal advisory panels for a single illness - is steadily getting chipped away at. With the charter lapsing in September we need to take action.

Wanda Jones, the federal government's liason to the CFSAC Committee, has done a wonderful job. She brought the last meeting from the little room at the top of the building down to the main floor at the bottom complete with three television cameras. She has devoted a significant effort to getting the committee better organized and more efficient. One gets the feeling, however, that she's not getting backed up by the powers that be.

The Committee is is accepting written testimony that will be placed in the public record until April 26th. For the first time they are asking that testimony be specifically directed to issue of the CFSAC's charter. It's very possible, indeed likely, that they're relying on a strong show of support to keep the committee proceeding in a functional state.

You can request to speak at the meeting or to post your written testimony to the CFSAC at this address - cfsac@hhs.gov - prior to 5pm, April 26th. If you do this your testimony will be placed in the public record and it will be counted.

Some bullet points you might want to use include

  • request that the Committee's charter be renewed
  • request that the committee meet four times a year rather than just two
  • request that replacements for outgoing committee members be filled in a timely fashion
  • request that the agendas be posted in a timely fashion
  • request that video live-streaming of the meetings be embedded in the charter
  • request that the status of the CFSAC''s recommendations be posted

We know very well from outgoing patient representative, Rebecca Artman, that numbers count to the federal government. A strong response will help us build a strong federal advisory committee.

Comments

In one breath, you say the gov't does not pay attention; in the second you say numbers mean something. I don't think anything but a Congressional Inquiry will mean anything at all.
 
A Congressional Inquiry would be great altho its very hard to get one going. With regards the CFSAC the govt does count the numbers and they do mean something to them but with regards the statistics on CFS it doesn't appear that they take them into account at all. So much for consistency.....
 
CFSAC has been a visible and useful forum. We had a Congressional investigation back in 1999 or thereabouts. Some funding was restored. But we have no John Porter now & no single pressing question of malfeasance. The staff person who turned into a block to progress was moved out of his job -- so someone is listening. The CFSAC records are public, and saved. With XMRV discovered, some parts of the government are responding on their own, who would have ever guessed that? CFSAC is one visible forum. Letting it slip away now seems foolish to me. Just as we are amid the serious scientists who work on XMRV. I say, thanks again Cort for seeing an item that merits action for our own benefit.
 
Cort, good information. Do you know what the CFIDS Association is doing to stop this move to neuter the CFSAC? Can we pool resources to aid their efforts?
 
I will be asking for all you have recommended, Cort, PLUS:

1. As the nation's blood supply is now at risk, with the XMRV findings, it is imperative the CFSAC be allowed to follow the science, not the psychobabble, to it's conclusion. The CFSAC can do that.

2. Do not downgrade the CFSAC in any way, in time or frequency, as this would be gross negligence on the part of Congress in light of the seriousness of this disease called CFS.

3. Fully recharter the CFSAC so that all the unanswered recommendations made thus far to the Sec, DHHS, can be addressed; to not do so would be tantamount to admission of a governmental coverup of a disease of paramount importance to the nation, both medically and financially, as in the early days of the HIV epidemic.

4. That, instead of being allowed to languish, that the CFSAC be rechartered with renewed vigor and with additional power to appeal to the Senate HELP committee regarding the lack of responsiveness and accountability by the DHHS, in direct defiance of the CFSAC's Congressional mandate.

I may think of a few more...
 
Cort;bt1777 said:
A Congressional Inquiry would be great altho its very hard to get one going. With regards the CFSAC the govt does count the numbers and they do mean something to them but with regards the statistics on CFS it doesn't appear that they take them into account at all. So much for consistency.....
Can we get the name changed to ME/CFSAC?

The XMRV Fact Sheet from the AABB states: "CFS (also called, more descriptively, myalgic encephalomyelitis)....."

gemini
 
Done. Thanks for the reminder, Cort. The CFSAC may not be perfect, but it's what we've got and I don't want to lose it. Besides, I think many of the members have worked hard on our behalt; it's not their fault if the Secretary of HHS hasn't listened or acted on their recommendations.
 

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