Preparation for federal US CFSAC May meeting

[leelaplay]

Hi Hope123. I agree completely. I'm not meaning to vent at all. I've been having a hard time trying to write lately (hopefully have started to come out of it - fingers crossed) so have just been copying over things I find that I think are important and hope others will run with.

It would be great if everyone wrote the CFSAC now (sorry - link missing - I'll edit it in if someone finds it for me) and asked for 5 minutes each to speak, and that questions be permitted from the public. Maybe this means asking for another 1/2 day of meetings to accomodate.

 

[jspotila]

I was surprised that the meeting is scheduled for only one day. It's usually 2 days. I am assuming that this is why the comment time has been cut from 5 minutes (last October) to 3 minutes. I also haven't heard anything about the new members of the committee, but I guess we'll find out before May 10th. Dr. Oleske and others had their terms expire in January 2010.

 

[Hope123]

Hi Hope123. I agree completely. I'm not meaning to vent at all. I've been having a hard time trying to write lately (hopefully have started to come out of it - fingers crossed) so have just been copying over things I find that I think are important and hope others will run with.

It would be great if everyone wrote the CFSAC now (sorry - link missing - I'll edit it in if someone finds it for me) and asked for 5 minutes each to speak, and that questions be permitted from the public. Maybe this means asking for another 1/2 day of meetings to accomodate.

My comment wasn't directed at you IF or even Mary S. or anyone in particular. I just wonder if the good ideas/ comments people have are being transmitted to the people who need to hear them. At one point a few years ago, I decided that instead of using my limited energy to convey ideas to the choir (other sufferers) I would instead try to write to the people in charge. I hope others do the same.

 

[Hope123]

I was surprised that the meeting is scheduled for only one day. It's usually 2 days. I am assuming that this is why the comment time has been cut from 5 minutes (last October) to 3 minutes. I also haven't heard anything about the new members of the committee, but I guess we'll find out before May 10th. Dr. Oleske and others had their terms expire in January 2010.

Oooooh, I didn't catch that but your're right......why, at this critical juncture, are they cutting DOWN on the meetings? Just when it seemed like more people were participating? Something else to write them about. I remember a few people had their terms expire and Dr. Christopher Snell at the University of the Pacific (of the repeat exercise studies fame) was voted in as the new chairman.

 

[Hope123]

I wanted to highlight this for anyone who wants to write to CFSAC about these or other issues. Please send in your letters/ e-mails before April 26, 2010. For any thoughts on how the meeting could be conducted better, try to send it in ASAP as this might increase our chances of having changes made.

FOR FURTHER INFORMATION CONTACT: Wanda K. Jones, Dr.P.H.; Executive
Secretary, Chronic Fatigue Syndrome Advisory Committee, Department of
Health and Human Services; 200 Independence Avenue, SW., Hubert
Humphrey Building, Room 712E; Washington, DC 20201. Direct all CFSAC e-
mail inquiries to cfsac@hhs.gov.

 

[leelaplay]

Here's the email I sent - feel free to borrow any ideas (the formatting didn't transfer over, but I think it's clear enough)

Hello Dr. Jones,

Here we are getting ready for another CFSAC meeting. You did such a great job of running the Oct 2009 meeting, I look forward to another one under you and your team. I’m especially pleased that the meeting will again be broadcast over the Internet as a real-time streaming video and also be recorded and archived on the CFSAC Web site for viewers to watch at their convenience.

I hope that you can help me and others in the ME/CFS world prepare by:

a) Emailing me, with permission to share if possible, the list that was mentioned at the Oct 2009 CFSAC meeting of all past committee recommendations and to what extent they have been acted upon. If the list has been updated since then, even better.

b) Amending the agenda to extend the amount of time that people have to speak, especially those of us with ME/CFS, to 5 minutes as was previous practice.

c) Amending the agenda to include 3-5 questions from the public after each ex officio member's and other presentations.

d) Emailing me, with permission to share if possible, and/or posting a list on the CFSAC site http://www.hhs.gov/advcomcfs/ of the current members of the CFSAC, including who will be the Chair if that is known already. I noted on the CFSAC site that several members’ terms expired between the 2 meetings.

Morris Papernik, MD Glastonbury, CT
Term: 01/03/06 to 01/03/10

Kristine Healy, MPH, PA-C Chicago, IL
Term: 01/03/06 to 01/03/10

Rebecca Artman Middleburg, FL
Term: 01/03/06 to 01/03/10

Lucinda Bateman, MD, PC Salt Lake City, UT
Term: 01/03/06 to 01/03/10

And
Chair
James M. Oleske, MD, MPH, CIP Newark, NJ
Term: 01/03/06 TO 01/03/10

e) I noted in the meeting announcement that

i) “The Committee is most interested in receiving public comment on the CFSAC charter, which can be found at http://www.hhs.gov/advcomcfs/charter/index.html.”

Is there anything more that you can tell me about this, any issues in particular that the committee is exploring?

ii) the meeting this year will only be one day long, as opposed to the 2 days last October. There seems to be much more happening in the ME/CFS world, with commensurate steps that need to be taken. Can you tell me why the time available has decreased? If there is a sufficient number of the public who wish to attend and speak, will it be possible to add more time to the meeting?

f) And finally, I wonder if you have any idea of when the agenda will be ready and posted on the CFSAC site?


Thank you for any help you can offer,

Sincerely,

xxx

 

[Hope123]

Thanks for writing IF.

Here's the charter:

http://www.hhs.gov/advcomcfs/charter/index.html

 

[leelaplay]

oh - I see why the Charter is so important for this meeting - it runs out in September (before the next meeting).

Termination Date

Unless renewed by appropriate action prior to its expiration, the charter for the Chronic Fatigue Syndrome Advisory Committee will expire on September 5, 2010.

APPROVED:

August 27, 2008
Date


/s/ Michael O. Leavitt
Secretary of Health and Human Services

 

[*GG*]

I sent an email, thanks for the format Islandfinn.

 

[Stuart]

So with only 35 days to go until the May 2010 CFSAC, after so many important developments, they have cut the meeting to only one day, comments down to 3 minutes and have not posted an Agenda yet?

Who thinks the politics have improved one tiny bit? :worried:


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Date and Title

Agenda Minutes Presentations Recommendations​

May 10, 2010 Meeting
Chronic Fatigue Syndrome Advisory Committee (CFSAC) [BIG BLANK SPACE!]


October 29-30, 2009 Meeting
Chronic Fatigue Syndrome Advisory Committee (CFSAC)
View the videocast of October 29-30, 2009 meeting
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May 27-28, 2009 Meeting
Chronic Fatigue Syndrome Advisory Committee (CFSAC)
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October 28-29, 2008
Chronic Fatigue Syndrome Advisory Committee (CFSAC)

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May 5-6, 2008
Chronic Fatigue Syndrome Advisory Committee (CFSAC)

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November 28-29, 2007
Chronic Fatigue Syndrome Advisory Committee (CFSAC)

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May 16-17, 2007
Chronic Fatigue Syndrome Advisory Committee (CFSAC)

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November 20-21, 2006
Chronic Fatigue Syndrome Advisory Committee (CFSAC)

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July 17, 2006
Chronic Fatigue Syndrome Advisory Committee (CFSAC)

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April 24, 2006
Chronic Fatigue Syndrome Advisory Committee (CFSAC)

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September 12, 2005
Chronic Fatigue Syndrome Advisory Committee (CFSAC)

HTML HTML (August 2005)​

April 4, 2005
Testimony from Patients and Advocacy Groups

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January 10, 2005
Chronic Fatigue Syndrome Advisory Committee (CFSAC)
Sixth Meeting

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September 27, 2004
Chronic Fatigue Syndrome Advisory Committee (CFSAC)

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June 21, 2004
Chronic Fatigue Syndrome Advisory Committee (CFSAC)

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March 22, 2004
Chronic Fatigue Syndrome Advisory Committee (CFSAC)

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December 8, 2003
Chronic Fatigue Syndrome Advisory Committee (CFSAC)

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September 29, 2003
Chronic Fatigue Syndrome Advisory Committee (CFSAC)
Inaugural Meeting

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I say they are full of it!

 

[leelaplay]

So with only 35 days to go until the May 2010 CFSAC, after so many important developments, they have cut the meeting to only one day, comments down to 3 minutes and have not posted an Agenda yet?

Who thinks the politics have improved one tiny bit? :worried:

Hey Stuart - I'm in an optomistic frame of mind today. The CDC has been part of the federal working group on XMRV. Phase One: FDA, CDC, NCI, WPI and 2 more working on a standardized XMRV test - results expected within weeks. Phase 2 already started looking for causality with MECFS.

Maybe the NIH is holding off on the CFSAC agenda until more word on these results are in. Then, the whole meeting may be to dissolve the CFSAC, and start a MECFS Department, equivalent to HIV/AIDS, within Infectious Disease.


ETA - I sent an email in to the CFSAC. Expect to hear this week after the long weekend. Will let you know.

 

[George]

BINGO! What she said. ^^^^^^
IF they establish that XMRV is it and there look to be some major presentations right before the meeting then CFSAC may no longer be needed.
If that comes to pass I think I'll howl.

P.S. Islandfinn hope you don't mind me just trottin along behind ya today. (grins)

 

[leelaplay]

BINGO! What she said. ^^^^^^
IF they establish that XMRV is it and there look to be some major presentations right before the meeting then CFSAC may no longer be needed.
If that comes to pass I think I'll howl.

P.S. Islandfinn hope you don't mind me just trottin along behind ya today. (grins)

Think we'll all be howling!

And thank you so much for my first day taking the lead - it's kinda fun.

 

[Hope123]

I'd like to think that there will be new news regarding blood supply studies, etc. at the meeting but I wouldn't bet on it. It's not over until the fat lady sings. I suggest people continue to question and keep track of CFSAC and the federal gov't until we get a good answer. Most of the the time, the people sitting on CFSAC (PANDORA rep, Dr. Leonard Jason, Dr. Chris Snell e.g.; Dr. Klimas, Dr. Bateman, Staci Stevens in the past) are on our side. It's the guests, federal gov't, and ex-officio members (like the CDC) that we need to keep the pressure. Nevertheless, testifying at CFSAC puts our experiences and questions on the public record.

Be careful what you wish for; CFSAC has been an important means for people to get heard by the gov't even if it hasn't been very effective. (I chalk this up less to CFSAC itself and more to the fact that CFSAC wasn't granted "teeth" to enforce recommendations.) If there is another group established, I hope they have a mechanism put in place to accept public input.

 

[starryeyes]

I don't know if anybody has said this here already or not but if they have it bears repeating.


We need the media to be at the next CFSAC. How do we get the media to be there?

usedtobeperkytina mentioned that we could contact Dr. Donnica Moore about this. Does anyone here know her username here or how to contact her?

 

[Hope123]

OK, I heard from my source that the reason why the meeting was cut to 1 day was because new CFSAC members have not been replaced for the ones whose terms have expired. My source's thought was that appointments were held up due to the battles in DC over healthcare legislation the last several months. Rather than cancel the meeting entirely, the gov't decided to go ahead with a one-day meeting. No agenda has been posted yet.

There are certain rules that CFSAC and all other federal advisory committees have to follow during meetings. These are listed under the FACA - the federal advisory committee act:

http://www.gsa.gov/Portal/gsa/ep/contentView.do?contentType=GSA_OVERVIEW&contentId=9673

Neither I nor my source has read this in detail but I was told that FACA limits a lot what advisory committees can do:

- International speakers can be invited to testify but public testimony from those outside the country are not allowed by FACA. However, one way to get around this is to have a US attendee read statements from people outside the country. IACFS did some of this last year.

- Advisory committee members are not allowed to have discussion outside the committee period. This takes up valuable time as discussion that could have been held before the meeting as preparation are not allowed. Committee members are also required to sign documents limiting what they say or do and can be prosecuted if they don't obey these rules.

The last meeting, which was bolder than prior recs including the call to have CDC change CFS heads, was unusual and certain people in the gov't were unhappy that CFSAC members were as outspoken as they were.

- People have said that in past CFSAC meetings, questions were allowed from the audience. Since this was done before, we could try requesting it again.

- My source encouraged me and others to continue to write to Dr. Jones about ideas for who we want to hear from at the meeting and what we want to hear about. My source says DC acts extremely slowly and what we might think to be conspiracy, etc. is likely more due to bureacratic blundering, errors, and delay.

 

[Hope123]

Tee, I don't know much about media but this idea has been brought up in the past as a good way to attract attention. I believe Dr. Moore can be contacted through the WPI Facebook page by posting on their discussion or wall. Someone might put you in touch with her. Or simply put up your idea there since WPI has media contacts already.

 

[starryeyes]

Thanks Hope. I know she's a member here but I can't PM her without knowing her UserName. I did write to the WPI's 2 email addresses they give at their site. I'm not a member of FB. Perhaps someone who is could ask on the WPI's wall.

 

[Lily]

Teej, her username is DrDonnica

 

[starryeyes]

Thank you lily. I sent her a PM too.