Friday, May 8, 2009

CFSAC Meeting May 27-28 in DC - Get your testimony in now!

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


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