Choose priority recommendations for Spring CFSAC meeting

[Sasha]

This on Jennie Spotila's blog (always good value):

As I’ve reviewed elsewhere in great detail, the CFS Advisory Committee will be discussing which recommendations should be designated “high priority” at their meeting on May 22-23rd. We now have the opportunity to voice our own views about which recommendations are most important. I’ve saved you the trouble of reviewing all 77 recommendations yourself, and have selected the recommendations that are incomplete and still relevant. The full text of those 17 recommendations are listed below for your convenience. [...]

Read the whole thing here:
http://www.occupycfs.com/2013/05/07/full-text-cfsac-recommendations/#comment-14395
I'm not familiar with how these things work and I don't know what people should do to get their recommendations in. I've posted a question on Jennie's post which is currently held in moderation. Quite possibly she already discussed it - I can't remember!

 

[jspotila]

I strongly recommend that people sign up for public comment, or at least send written comments in. I suggest identifying your personal top 3 from among that list of recommendations, and ask CFSAC to make those the high priority recommendations.

PR is publishing an article from me this week about the upcoming meeting and how to participate. Hopefully Mark won't mind if I copy the participation instructions here:

How to Participate
If you want to provide public comment in person or by phone, you must register by May 15th: http://www.blsmeetings.net/CFSACPublicCommentMay2013Unlike previous meetings, you are not required to submit your written testimony in advance unless you want it to be part of the public record of the meeting. You are limited to 5 minutes (or 5 typed pages), and your comments are due by May 15th to this email address: CFSACMay2013@seamoncorporation.com You will receive confirmation of your speaking slot for comment by May 17th.

More details about the meeting, including how to register to attend in person, can be found in the Federal Register notice. You will be able to watch the meeting live at www.HHS.gov/Liveand information about listening by phone will be posted to the CFSAC website.

I know some people feel the CFS Advisory Committee is a bureaucratic exercise in futility, but these meetings give us an opportunity to be heard. It’s worth the time and energy to publicly express your views. Maybe they don’t always listen to us or follow through on what is most important to patients, but if we remain silent then we guarantee that our opinions will be ignored.