The CFS Advisory Committee meeting is less than a month away (October 3 and 4), and sign ups for public comment opened last night. At every CFSAC meeting, the public is given the opportunity to offer comments, but you have to register and submit your testimony in advance. I thought it might be helpful to share a few tips that I’ve learned over the last several years of testifying at these meetings. These work for me; your mileage may vary.
Know your audience – You are talking to several groups of people: the voting members of the CFSAC, the ex officio representatives from a number of agencies (such as CDC, NIH and Social Security), and the general public (chiefly patients and advocates). Tailor your comments to one or more of those audiences. I always try to address the voting members of the Committee as my primary target, with the ex officios as a close second. It’s the voting members who have the power to act in the meetings by issuing recommendations to the Secretary; that is their role.
Say something new – The Committee has heard many many illness narratives in which patients talk about their struggles. I believe it is important to keep these stories in the collective face of the CFSAC. But I also think it is important to say something new. Is there a topic that you think has not gotten enough attention? Do you have a unique perspective? For example, we never heard much from young people with the disease until a few meetings ago. Those comments were very effective and grabbed the Committee’s attention, in part because it was something new.
Ask for something concrete – Specificity is much more effective than generalizations, if for no other reason than you can measure progress towards a goal. For example, asking that the government help people with CFS is non specific. Asking that Social Security add CFS to the list of disabling conditions is specific and concrete, and it is easy to assess whether the request has been fulfilled. In the past, I’ve asked that the Committee brief the Secretary of Health and Human Services, that they recommend NIH issue an RFA with $10 million, and that they keep closer track of the Department’s responses to their recommendations. As I said previously, I usually address my comments to the voting members of the Committee since they are the ones who can act in the meetings.
Use emotion strategically – Talking publicly about our experiences with this disease is emotional, and sometimes anger or sadness comes out in testimony. In almost every case, I think this increases our credibility. But I also think it is important to harness our emotions and see them as a strategic element of testimony. If our grief or anger becomes distracting to the audience, it lessens the effectiveness of the message. Think about the point in your comments that are the most emotional for you, and let your emotions show at that point only. Giving public testimony is not just about having our say; it’s about communicating effectively to an audience. Use your emotions to help get your point across.
Protect your privacy – Whether you give comments in person or on the phone, your name and comments become part of the public record unless you specifically request to speak anonymously. The meetings are recorded and video posted online. Your written comments will also be posted to the CFSAC website. Think about what you are saying: are you comfortable with the public knowing details about your medical history? what if your insurance company found your remarks? Make sure you think about this in advance, and tailor your comments to your level of comfort. Alternatively, ask that your comments be kept anonymous.
Follow the rules – The CFSAC has procedures and rules for public testimony. You have to sign up in advance, and your comments are limited to five minutes. There are a number of legitimate complaints about these rules, including the requirement that written comments be submitted prior to confirmation that you have a slot and the disallowing of video comments. But in preparing your own remarks, follow the rules. Otherwise, you risk not being heard at all. The biggest pitfall is the five minute limit. Make sure your comments are five minutes long – you will be cut off if you run over time, and the rest of what you want to say will be lost. In my experience, it takes about five minutes to read 700 words.
Practice practice practice – Do your comments fit within the time limit? Can you read them smoothly? Are you speaking clearly and slowly? Practice. Read your comments aloud, as many times as possible. Even better is to read them to a friend or family member. The more you practice, the better you will sound.
Written comments for this meeting are due September 24th, so I’ll be drafting my remarks this week. I hope you will join me in testifying at a future meeting. Our voices must be heard!
Another helpful post. Thanks, Jennie.
I seem to remember talk in the past that Dr. Jones was willing to allow recorded video of testimony to be sent on DVD and presented. They don’t allow that any more? That’s really too bad since it limits the voice of the very sick, as you know.
Personally, I think it helps our advocacy to use our real names. Therefor, I would encourage anyone who is testifying or doing any advocacy in general to use their full real name if they are not revealing details of their own illness (but instead making policy recommendations); and also if they are talking about their own illness and they have thought about any implications, as you mention in your post, and still feel comfortable using their name.
You’re right, Justin. Video testimony was permitted at a previous meeting under Dr. Jones. Dr. Lee has said that video is not permitted. It’s not clear to me why, because submitted video could be formatted to be ADA compliant and posted on YouTube, just like the video of the meeting itself.
Very informative Jennie – thank you!