Speaking at CFSAC: A Primer

By Denise-Lopez Majano 

Patients, and advocates have the opportunity to speak at the CFSAC during public comment time IF they register in time.

As soon as the notice is posted, each person who wants to provide public comment has to IMMEDIATELY send an email (cfsac@hhs.gov) requesting a time slot (for live or remote comment).

(Time slots fill up FAST when they become available – usually filled the same day the CFSAC meeting dates are announced. Don’t despair though, usually a number of people who are wait-listed for public comment, get time slots at the last minute.)

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 and to meet, in person, who you have been in contact with for “forever”.

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 via the Assistant Secretary for Health of the U.S. Department 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.” http://www.hhs.gov/advcomcfs/index.html

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 various government agencies. Initially many of the ex-officios have little/no direct experience with ME/CFS.

Meeting announcements are posted in the Federal Register. (This is a 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 (cfsac@hhs.gov) requesting a time slot (if they want to provide 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. (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.

Being at these meetings enables patients to meet and interact with other patients, parents, advocates, researchers, clinicians, etc. The meetings are an opportunity to make friends also.

Public comment

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 – usually done sitting at the table (with a microphone) and reading your presentation (unless you have it memorized).
  • Public comment can also be a written submission.
  • Public comment can be presented using a 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.)
  • 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.
  • 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.

Time - 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.

Suggestion - Practice reading aloud what you have written and time yourself. 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. (This is really important.)

Every person who presents public comment should submit the text ahead of time so that it can be printed and put in the binders for each committee member.

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. SOOOO, 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 the CFSAC should, help you/us.

2 comments

{ 2 comments… read them below or add one }

Janelle January 8, 2013 at 7:01 pm

Great article, thanks.
A couple of updates:
DVDs have not been accepted recently.
It’s my understanding that some of the current ex-officios may have family members with ME/CFS.
Public comments are currently being accepted as Word documents with 12-point font (the font requirement could be my fault; I once submitted a document with 10- or 9-point font references, very tightly spaced, in order to get everything to fit on 5 pages–the font requirement showed up the very next time).

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Molly February 20, 2013 at 9:50 am

Great Primer Denise. This is a great motivator for new Public Testimonies. I do recall Dr. Lee making a statement at one of the recent past hearings, that they would like Testimony from people who have not presented in the past. Does CFSAC Staff screen the testimonies for approval to speak at the hearings based on this or on how they want the tone of the Public Testimony portion to be set? Four-minutes-and-counting is a challenge for individuals with breathing problems and cognitive delays under pressure. How was the 5-minute Time limit established? When Registering or submitting the written testimony, should you advise them of needs for accommodation if these issues are a concern and one would like to speak publicly? Do the comments have to meet the per-established agenda set by the Board? We usually don’t know what that agenda is very early?

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