CFSAC meeting May 27-28 - people can give a submission over the phone

Discussion in 'Fibromyalgia Main Forum' started by QuayMan, May 3, 2009.

  1. QuayMan

    QuayMan Member

    Just as with the recent meeting at the CDC, people can give a 5-minute presentation over the phone. Unfortunately I think at present people can't listen in over the phone but perhaps this might change if enough people asked?

    "TheCFIDSAssociationofAmerica" <>........................via Co-Cure Moderator

    The Department of Health and Human Services Chronic Fatigue Syndrome
    Advisory Committee (CFSAC) will meet next on May 27-28, 2009, in
    Washington, DC The official announcement of the meeting from the
    Federal Register is copied below. Please note that the Centers for
    Disease Control and Prevention will release its draft of the 5-year
    strategic plan for CFS research at this meeting. The draft will be
    posted at and public comment is invited until June 30,
    2009. See more information at

    For more information about the CFSAC, visit The CFIDS Association's
    meeting reports, dating back to 2003, are available at The Association has
    set up an Action Alert about the CDC research plan. You can access it

    [Federal Register: April 6, 2009 (Volume 74, Number 64)]
    [Page 15495-15496]
    From the Federal Register Online via GPO Access []



    Meeting of the Chronic Fatigue Syndrome Advisory Committee

    AGENCY: Department of Health and Human Services, Office of the
    Secretary, Office of Public Health and Science.

    ACTION: Notice.


    SUMMARY: As stipulated by the Federal Advisory Committee Act, the U.S.
    Department of Health and Human Services is hereby giving notice that
    the Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold a
    meeting. The meeting will be open to the public.

    DATES: The meeting will be held on Wednesday, May 27, 2009, and
    Thursday, May 28, 2009. The meeting will be held from 9 a.m. until 5
    p.m. on both days.

    ADDRESSES: Department of Health and Human Services; Room 800 Hubert H.
    Humphrey Building; 200 Independence Avenue, SW.; Washington, DC 20201.

    Assistant Secretary for Health (Women's Health); Department of Health
    and Human Services; 200 Independence Avenue, SW.; Hubert Humphrey
    Building Room 712E; Washington, DC 20201; (202) 690-7650.

    SUPPLEMENTARY INFORMATION: CFSAC was established on September 5, 2002.
    The Committee was established to advise, consult with, and make
    recommendations to the Secretary, through the Assistant Secretary for
    Health, on a broad range of topics including (1) The current state of
    the knowledge and research about the epidemiology and risk factors
    relating to chronic fatigue syndrome, and identifying potential
    opportunities in these areas; (2) current and proposed diagnosis and
    treatment methods for chronic fatigue syndrome; and (3) development and
    implementation of programs to inform the public, health care
    professionals, and the biomedical, academic, and research communities
    about chronic fatigue syndrome advances.

    The agenda for this meeting is being developed. The agenda will be
    posted on the CFSAC Web site,, when it is

    Public attendance at the meeting is limited to space available.
    Individuals must provide a photo ID for entry into the building where
    the meeting is scheduled to be held. Individuals who plan to attend and
    need special assistance, such as sign language interpretation or other
    reasonable accommodations, should notify the designated contact person.
    Members of the public will have the opportunity to provide comments at
    the meeting. Individuals who wish to address the Committee during the
    public comment session must pre-register by May 22, 2009. Any
    individual who wishes to participate in the public comment session
    should call the telephone number listed in the contact information to
    register. Public comment will be limited to five minutes per speaker.

    Members of the public who wish to have printed material distributed
    to CFSAC members for discussion should submit, at a minimum, one copy
    of the materials to the Executive Secretary CFSAC, prior to close of
    business on May 22, 2009. Contact information for the Executive
    Secretary, CFSAC is listed above.

    Dated: March 24, 2009.
    Wanda K. Jones,
    Deputy Assistant Secretary for Health, (Women's Health) and Executive
    Secretary CFSAC.
    [FR Doc. E9-7549 Filed 4-3-09; 8:45 am]
  2. QuayMan

    QuayMan Member

    I am just wondering can anybody from outside US speak?

    Or if people don't know the answer to that, has anyone from outside the US - remember Canada is also - ever spoken?

  3. QuayMan

    QuayMan Member

    I'm thinking I might do something over the phone?
    I'm interested to hear more.
    Do you just say your piece for five minutes and then that's it.
    Or do you interact in anyway with the committee?
    Do you have to show your script in advance?
    Can you give out about individuals and their research? For example, I'm not too happy that in pre-publication comments on the Georgia prevalence study Peter White wasn't happy with the empirical definition yet he was part of the four-man (person?) external review that praised the empirical definition.

    I don't expect anyone to answer all of these but comments welcomed.
  4. mezombie

    mezombie Member

    I've attended several CFSAC meetings and testified once.

    There's a period of time set aside specifically for testimonies. People speak, one after another. Unfortunately, there is no interaction with the Committee during that time; no questions are asked nor is anyone asked to elaborate on their comments.

    You don't have to show your script in advance, and you are free to comment on anything. There is no censorship.

    The CFSAC likes to have a copy of your testimony mainly to make sure their transcription matches what you said.

    For those who are able to attend, it is possible to interact with individuals on the Committee during breaks and after adjournment.

  5. skeptik2

    skeptik2 Member

    The first item to be addressed is the fact that this disease is under the "Women's Health" division of the NIH.

    The second is the fact that their is NO input regarding cause and treatment; never has been.

    Third, the research that has been conducted is never presented unless it is to stress the unfailing wrong demographics based on the unfailing wrong research criteria.

    The fourth fact is that even the minutes of these meetings take an inordinate amount of time to be disseminated.

    The International Association of CFS/ME has taken a few steps forward, but the CFSAC is stuck in a rut.

    Maybe, just maybe, if everyone who spoke to the CDC in their conference spoke again, saying exactly the same things, we can get some action going.

    They have heard the numerous personal stories over and over again since their inception; they need to hear the facts of all the studies that have shown how abnormal our physiology is, and all the valid research studies should be thrown in their faces, over and over again.

    If we could get just one interested Senator to attend, someone on the Health and Human Services Committee, that may help...anyone have any ideas how to do this?

    p.s. If the witnesses who spoke today do not get heard, maybe some of us could print out their comments and re-submit them, with proper accreditation, of course. They could be printed out now, and rehearsed reading in order to get the inflection right. Or, they could be used for researching the studies cited and reiterating them to the committee.[This Message was Edited on 05/03/2009]
  6. QuayMan

    QuayMan Member

    Thanks mezombie. Useful to know.

    The fact that notes are taken is very useful - it really puts things on a public record.
  7. QuayMan

    QuayMan Member

    skeptik2, I hope you will consider make a presentation as I think you make some good points.

    We are all likely to concentrate on different things so it's good if a few people made submissions.

    If there's no feedback, it doesn't sound the most stressful thing talking into one's phone in your own environment for five minutes. There are a lot of restrictions with what people with this illness can do but this seems the sort of thing many people could do.
  8. outofstep

    outofstep Member

    Are you sure re: the telephone for this one? So far all I've read about are written comments and in-person presentations. Just want to make sure before writing a spiel. Thanks!
  9. skeptik2

    skeptik2 Member

    Quayman, thank you, I have written it all down. Will schedule a presentation if can do it by telephone. Will write if can't do it by phone.

    outofstep, I agree; there's nothing here about telephone presentations, yet.

    Is everyone calling Wanda Jones and asking for the "open" (or whatever it's called) telephone conference option like we had at the CDC meeting?

    HER NUMBER IS: (202) 690-7650 in D.C.
  10. outofstep

    outofstep Member

    will definitely give ol' Wanda a call
  11. skeptik2

    skeptik2 Member

    LOL, wonder if she minds being called ol' Wanda?

    If she's reading this, I assure you we mean it in good way!

  12. Spinetti

    Spinetti New Member

    Expecting people with severe ME/CFS to appear in person or comment by phone at a given time seems unrealistic. It effectively excludes a large population.

    Time could be provided at the meeting to read emailed comments into the record, or they could be added later if time does not permit.

    Perhaps someone with better phone skills than myself could point this out to Dr. Jones. Politely LOL.

    Best wishes!
    [This Message was Edited on 05/07/2009]
  13. Forebearance

    Forebearance Member

    Hi QuayMan,

    If you want to see what speaking at these meetings is like, you can look at the video Brian Smith made of his testimony at the last two CFSAC meetings. It's on YouTube, and somewhere on this board in one of Brian's threads he gives the links to it.

    My understanding was that he insisted on video taping his presentation, and the CDC people weren't too thrilled about it. Even though it was at public meetings.

    To me, the meetings look like they are incredibly dull. Our government at work!

  14. skeptik2

    skeptik2 Member

    You see, that is usually the whole point, as you have so eloquently shown: the CDC and CFSAC do not WANT 1M of us to show up at a meeting. Therefore, they schedule them to come up quickly and give patients very little time to make coherent :) responses!

    Is Wanda Jones a "Dr."?, PhD or otherwise?
    Didn't know that.

    The comments can be made from 9-5 so we who don't become functional before 1 or so can jam the phonelines then, but then even more will be excluded, all according to plan probably IMO.

    Let's all call and ask that emails be added to the record; however, we'll never know if they are truthful about how many they receive or what they say.

    Does it sound as if I've lost faith in the CFSAC and strange.

  15. Spinetti

    Spinetti New Member

    Wanda Jones is a Dr.P.H. (Doctor of Public Health). Her pic and bio can be found at

    Seems she used to work for the CDC. Hmm.

    Her email address is

    I see in the announcement that printed material can be submitted by snail mail to the committee "for discussion" - whatever that means - by May 22. Perhaps that is best. Less likely to get "lost."

    I share your lack of faith in the CDC and the CFSAC. It's a bit like asking Mr. Fox to look into the trouble down at henhouse.

    Best wishes!

    [This Message was Edited on 05/08/2009]
  16. QuayMan

    QuayMan Member

    -----Original Message-----
    From: ME/CFS and Fibromyalgia Information Exchange Forum [mailto:CO-CURE@LISTSERV.NODAK.EDU] On Behalf Of Mary Schweitzer
    Sent: 08 May 2009 20:16
    Subject: [CO-CURE] ACT: CFSAC meeting May 27-28 - Important!

    I'd like to remind everybody again that the Chronic Fatigue Syndrome Advisory Committee (CFSAC) of the Department of Health and Human Services (HHS) will be having meetings Wednesday and Thursday, May 27-28, 9 am to 5 pm, at HHS headquarters in the Hubert Humphrey Building, 200 Independence Avenue, SW.; Washington, DC 20201.

    The CFSAC includes representatives from CDC, NIH, HRSA (public health information), and FDA - all of which are agencies within HHS so you're talking to their bosses - and the Social Security Administration. There are also first-rate public members. Here's the whole roster of members:

    THIS IS THE FIRST CFSAC MEETING OF THE OBAMA ADMINISTRATION. We have a new CFSAC head, Dr. Wanda Jones, who is sympathetic to our plight, and DHHS finally has a new head, too.

    We REALLY NEED as many patients, advocates, family members, and friends as possible to show up at this meeting, because we need to make a statement to HHS that this is IMPORTANT. I'd really like this meeting to be bursting at the seams. You don't have to testify; you don't even have to sit up! Just show up. There will be people lying in the back (including me from time to time ...)

    There are five-minute slots available for testifying by phone or in person. There is, as yet, no equipment to have the committee meeting broadcast via conference call, so if you wish to give testimony by telephone, you must give them a phone number to call, because THEY will call YOU in the middle of the meeting.

    If you want to testify either in person or by phone, call or email as soon as possible:

    Telephone: (202) 690-7650
    FAX: (202) 401-4005

    Technically the deadline to call to testify is May 22, but I'd call immediately to make sure you get a space.

    They will distribute a written copy of your statement, roughly 5 double-spaced pages. You can email your written copy by May 22 (preferably by May 20) as a WORD attachment to or FAX testimony to (202) 401-4005.

    YOU MAY ALSO SEND TESTIMONY even if you cannot attend or get a slot to testify by phone. Send a WORD document to: or FAX testimony to (202) 401-4005.

    Technically, there is no limit on written evidence or testimony. Practically speaking, it is doubtful anybody will read more than five pages, and keep in mind that someone who works there has to do the copying and distribution.

    However, if you wish to submit more, there is no law or rule limiting how much you can submit. If there is something very important that needs to be submitted, go ahead.

    I usually submit more (for example, I have handed out the Canadian Consensus Document) but that is when I am testifying in person, and I make the copies myself and bring them with me so as not to tax the system. Just a suggestion. And I know you all don't read everything I write - which is a good argument for not writing as much as I do.

    Briefer gets read.

    We have important issues to get on the table. The CDC is bringing their five-year plan to Washington. And anybody who has been involved with the plight of young Ryan Baldwin in North Carolina knows that issue needs airing, too.

    If you live outside the U.S., share what works (or what doesn't work) in your country, remind them that what happens at CDC or NIH has global implications; or just tell them how bad it is and remind them this is a global health crisis.

    There will be people there who don't know how bad this can get: teach them. Tell them how bad this disease really is. Tell them how poorly treated you are. Talk about the inequitable treatment this disease and its targets have received from the government and the medical community. Tell them how that has hurt you or a loved one. Tell them what you need. Tell them your fears.

    So - here are the ways to participate:

    1. Send in written testimony by May 22 at the latest;
    2. Attend and give testimony;
    3. Attend and just bring written testimony;
    4. Attend!
    5. Give testimony over the phone during the meeting;
    6. Send in written testimony even if you are not orally presenting it.

    Deadline for written testimony: May 22, preferably May 20
    Deadline to apply to testify orally: May 22 - the sooner the better.

    Contact CFSAC via DHHS:

    Telephone: (202) 690-7650
    FAX: (202) 401-4005

    Mary Schweitzer
  17. quanked

    quanked Member

  18. jasminetee

    jasminetee Member

    Send a WORD document to: or FAX testimony to (202) 401-4005.

    You mean just a regular email? Or something else that has to be WORD?
  19. QuayMan

    QuayMan Member

    Sounds good, Caledonia.
  20. QuayMan

    QuayMan Member

    Somebody (a patient) has sent me the following:
    "I called Wanda Jones and she said that they couldn't take calls from intl. callers as the CFSAC reports to the Sec. of Health and Human Services, so it's more of a govt. specific thing than the CDC was.

    The procedure for the CFSAC is people have to register with Dr. Jones and then they get called back on the day of the meeting and that's how people are going to speak on the phone, it's not a call in like the CDC meeting was. She did say though if you sent in written comments for the committee members to read then she would make sure that they were entered into the record."

    So people from outside the US could make some sort of written submission.

    Best of luck to anybody who makes a written or oral submission.