Posts Tagged 'mentors'

CFSAC public comment (slightly revised)

The next CFSAC meeting will be on October 3 (Wednesday) and 4 (Thursday), 2012.The meeting will take place at the Department of Health and Human Services, Hubert Humphrey Building, Room 800, 200 Independence Ave., Washington, D.C.

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.”

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 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. (This is a sample:  https://www.federalregister.gov/articles/2012/05/30/2012-13097/meeting-of-the-chronic-fatigue-syndrome-advisory-committee http://www.gpo.gov/fdsys/pkg/FR-2012-05-30/pdf/2012-13097.pdf .)

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 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 may not hear back immediately about whether or not you got a time slot or when it is. (Let us know as you soon you do receive a time slot and then again when you know your 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.

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 – 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. (A timer is used.)

Your public comment can be less than five minutes.

Suggestions

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.

Public comment text 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.

Thank you

Thank you to everyone who has helped and supported Speak Up About ME. We appreciate you!

Thank you to everyone who participated in/watched the June 2012 CFSAC meeting.

Thank you to each of you who make a difference each day in the lives of people with ME/CFS!

 

A friend pointed us in the direction of this video and we hope that you appreciate it as much as we do.

Sincere thanks to the young person* who made it.

 

 

 

 

 

 

 

(*Please be in touch with us. SpeakUpAboutME at gmail dot com)

SPEAK UP ABOUT ME June 13th and 14th, 2012

JOIN US!

Speak Up About ME especially welcomes early onset patients.

Who:    young people with ME/CFS and ME/CFS advocates

What:   Speak Up About ME

Where: Washington DC Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting

Why:    to Speak Up About ME –

to raise awareness about ME/CFS because ME/CFS affects people of all ages/genders/etc.,

to provide public comment to the CFSAC committee,

to be Invisible No More!

When: June 13th and 14th 2012

We are going to YANK the nation’s heartstrings again.

Young People with ME/CFS –

JOIN US

Speak Up About ME, to be

Invisible No More!

Why is my participation important?

Physical presence and providing your public comment in person at the CFSAC has great impact and is an empowering experience.

Providing your public comment via DVD is also very powerful.

Public comment can be provided by phone and in writing by those who are unable to attend in person.

(Read more about public comment here: https://speakupaboutme.wordpress.com/public-comment-at-the-cfsac-meetings/ )

 

We gladly welcome mentors, volunteers, supporters, contributors.

 

Help defray expenses for Speak Up About ME participants!

https://speakupaboutme.wordpress.com/support-speak-up-about-me/ for information on how to contribute.

 

Contact Speak Up About ME at gmail dot com  (all one word, no spaces) for more information.

 

If you are so sick, why are you taking part in Speak Up About ME?

Advocacy and empowerment– we don’t want anyone else to go through what we are going through. By raising awareness, we work to ensure that no one else has to go through this.  This is a personal sacrifice and it takes weeks for us to return to our previous level of functioning.  And yet, participation is empowering, despite the toll it takes on us.

 

What can I tell my school about the event?

Speak Up About ME participants are part of government in action. Participating in the CFSAC and/or meeting with Congressional representatives on Capitol Hill are integrated learning experiences (advocacy, public speaking, science, geography, social studies).

 

Have you started writing your public comment?

There is no need to wait for CFSAC dates to be announced before you start writing. Start now.

 

 

Contact us if you want to work with a mentor to make your public comment.

Mentors help ensure that your public comment clearly says what you want to convey.

More about public comment at the CFSAC

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.”

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 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 (cfsac@hhs.gov) 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.

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 – 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.

Suggestions

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:

ex-officio members,

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.

Support Speak Up About ME

SUPPORT Speak Up About ME

 

We gladly welcome mentors, volunteers, supporters, contributors.

We welcome your help!  SpeakUpAboutME at gmail dot com


Thank you for helping us Speak Up About ME!

We are working to make us all, Invisible No More!