Patients and advocates have the opportunity to speak at the CFSAC during public comment time IF they register in time.
(Time slots fill up FAST when they become available – they are usually filled the same day registration opens. Don’t despair though, usually a number of people who are wait-listed for public comment, get time slots at the last minute.)
About the Chronic Fatigue Syndrome Advisory Committee (CFSAC)
“The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services … on issues related to chronic fatigue syndrome (CFS). These include:
- factors affecting access and care for persons with CFS;
- the science and definition of CFS; and
- broader public health, clinical, research and educational issues related to CFS.”
The committee is made up of clinicians and researchers who treat people with ME/CFS and study ME/CFS (and overlapping illnesses), at least one attorney (who deals with disability cases), a patient advocate (the current advocate is a person with ME/CFS). These people serve on the committee in addition to their full-time positions. This is not a paid position (they do receive a per diem).
The committee members have been selected by the Department of Health and Human Services (DHHS) as the DHHS designated experts on ME/CFS. (DHHS oversees the CDC, NIH, FDA, etc. http://www.hhs.gov/open/contacts/index.html#sd)
The committee is also comprised of a number of ex-officio members from the NIH,CDC, FDA and other government agencies. Initially many of the ex-officios have little or no direct experience with ME/CFS.
Meeting announcements are posted in the Federal Register. (Sample: http://edocket.access.gpo.gov/2011/2011-6702.htm.)
Announcements are usually made about 4 weeks before the meeting and that is when we find out the dates of the meeting. The meetings (held twice a year – usually spring and fall) are usually two days long.
This is VERY important –
As soon as the notice is posted in the Federal Register, each person who wants to provide public comment has to IMMEDIATELY send an email (firstname.lastname@example.org) requesting a time slot (for live or remote comment).
There are usually about 35 five-minute time slots.
You will probably receive an automated reply saying that your email was received. (Suggestion – save copies of your emails.) You will not hear back immediately (or even for a few weeks) about whether or not you got a time slot. (Let us know as you soon you do receive a time slot.)
Being at these meetings enables patients to meet and interact with other patients, parents, advocates, researchers, clinicians, etc. The meetings are also an opportunity to make friends.
Anyone can request public comment time. Family members, friends, etc can request time. From time to time only one person from a family gets a time slot because there are so many requests and so few slots.
Public comment can be done in a variety of ways. (Among them – in person, via DVD, via phone, in writing…)
In person – is usually done sitting at the table (with a microphone), reading your presentation (unless you have it memorized).
Creativity is welcome. You can do a skit. You can read a poem, etc.
You are welcome to have other people at the table with you (you do not have to sit there alone).
In some meetings, patients and advocates have stood beside the person presenting as a show of solidarity.
Each person who gets a public comment time slot is limited to five minutes. (The Designated Federal Official uses a timer and will tell you when you have one minute remaining.)
Your public comment can be less than five minutes.
Reading aloud (Most people read their public comment aloud at the meeting) – Practice reading aloud (using a timer) what you have written. If possible, have someone listen to you reading your public comment aloud to make sure that you can be heard and that you are speaking clearly.
Every person presenting public comment should submit the text ahead of time so that it can be printed and put in the binders for each committee member.
DVD – Public comment can be presented via DVD. (The DVDs must be sent in ahead of time. If you use this format, try to make sure that a backup copy is on site with someone attending the CFSAC in DC – just in case.)
Phone – Public comment can be given by phone (for those who are too sick to attend, do not have a travel companion, cannot afford to attend, etc.). The committee calls you, so you don’t incur long-distance charges.
Written submission – Public comment can also be done as a written submission.
ALL public comment text should be submitted as a pdf (there is a date in the Federal Register notice as to when the public comments should be in) and can be NO more than five pages in length. Keep in mind that five written pages, is much more than five minutes of speaking. So, your written comments can be longer than your oral comments.
Some things to think about as you draft your public comment:
Assume the committee members are on our side.
Be assertive and passionate about how the CFSAC can, and why they should, help you/us.
Remember that Speak Up About ME has mentors who can work with you to craft your public comment.
Why it is so difficult to find out when the CFSAC meetings will be?
It seems that much of it has to do with scheduling.
(Not the huge amounts of scheduling that needs to be done by interested parties in order to be at the CFSAC, but the committee members, etc.)
Some of the schedules that have to be taken into account are:
CFSAC committee members,
Designated Federal Officer (Dr. Lee),
Assistant Secretary of Health (Dr. Koh),
And a meeting space that must be in a Federal building (per directives issued in Jan. 2012 by the White House and by the Department of Health and Human Services).
All of these have to align for the CFSAC to be scheduled.