Finally! CFSAC has opened requests for public comment for the June 13-14 meeting. You can provide public testimony in person, by phone, or by video, but if you want to snag a speaking slot, you need to make your request quickly - they usually fill up fast. Just follow the instructions and links below.
(reprinted from CFSAC website)
Registration and Public Comment Sign up Instructions for 2012 CFSAC Spring Meeting
CFSAC Registration
Public attendance is welcome, but due to limited space advance registration is required. Individuals who plan to attend should register at the following link by Friday, June 8, 2012: http://www.blsmeetings.net/CFSACJune2012. Members of the media will also need to register.
All attendees will be required to show government-issued picture identification for entry into the federal building. Attendees will receive a wrist band that must be worn the entire time. Security requires all non-federal employees to be escorted the entire time they are in the building. Upon leaving the building for any reason all persons will be required to follow the security steps mentioned above and receive a new wrist band. Members of the public will have the opportunity to provide public comments at the meeting or via telephone. International calls cannot be accommodated.
Public Comment Sign Up
A separate sign-up process for requesting time for public comment must be completed by Wednesday, June 6, 2012 at the following link: http://www.blsmeetings.net/CFSACPublicComment.
Individuals wishing to provide public comment must also submit an electronic copy of their testimony in advance to: CFSACJUNE2012@seamoncorporation.com by Wednesday, June 6, 2012. We require that you email a document (5 pages or less) in MS WORD format that is single-spaced, 12-point font.
Note: PDF files, hand-written notes and photographs will not be accepted. Requests for public comment and written testimony will not be accepted through the CFSAC mailbox. Also, the CFSAC mailbox will not respond to questions about specific public comment requests.
All public comment becomes part of the public record, available for viewing and posted on the CFSAC website. All testimony and printed material submitted for the meeting are part of the official meeting record and will be uploaded to the CFSAC website and made available for public inspection. Testimony and materials submitted should not include sensitive personal information, such as social security number, birthdates, driver’s license number, state identification or foreign country equivalent, passport number, financial account number, or credit or debit card number. Sensitive health information, or non-public corporate or trade association information, such as trade secrets or other proprietary information should be excluded from any materials submitted. If you wish to remain anonymous the document must specify this.
We will confirm your time for public comment via email by Monday, June 11, 2012. Each speaker will be limited to five minutes per speaker; no exceptions will be made. We will give priority to individuals who have not provided public comment within the previous year.
Persons who wish to distribute printed materials to CFSAC members should submit one copy to Designated Federal Officer at cfsac@hhs.gov, prior to Wednesday, June 6, 2012. Submissions are limited to 5 typewritten pages. http://www.hhs.gov/advcomcfs/2012spring_mtng_signup_instr.html
https://www.blsmeetings.net/4165/4165_public_comment.cfm
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
2 comments:
Although I don't have Chronic Fatigue Syndrome, a relative does, and because I have a mold sensitivity as well as Lyme Disease, I have read 1,000 pages related to the association of Chronic Fatigue Syndrome, Lyme Disease, and mold allergies. If you want a reference book: "Mold Warriors" is written by Dr. Ritchie C. Shoemaker, a doc here in Md. who has been researching this condtion as well as successfully treating others. He has the condition himself, and knows that mold has made him hemmorhage. It is quite serious. When people go to their local asthma and allergy testing site, as I did a number of yr. ago, they can find out if they are sensitive to mold as well as other environmental toxins. I went because I was diagnosed with asthma. Those of us born with allergies are highly susceptible to these toxins. Please tell people to go to their Yellow Pages, look under Naturopath, and ask that doc for referrals.
If you want a second book, one that initially helped me, I read,"Chronic Fatigue Syndrome Fibromyalgia, & Lyme Disease", by Goldberg, and Trivieri, Jr. I read this book first. You can probably get both of these books on Amazon.com.
First get a doc to take a blood test to test for Lyme Disease. It should be treated with an antibiotic. Many of my symptoms went away, but my first Lyme specialist didn't know about the mold connection. The second Lyme Disease specialist did. He had trained under Dr. Shoemaker.
I remember last year you highlighted pediatric CFS at this meeting. I just noticed this article:
http://bmjopen.bmj.com/content/1/2/e000252.full
It concludes that in the UK, about 1% of children ages 11-16 have ME/CFS, and many are undiagnosed!
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