Saturday, October 3, 2009

October is Disability Awareness Month

This is a good opportunity to write letters to the editor at your local publications, and contact the health reporters at your local TV/radio stations to make them aware of (a) Disability Awareness Month, (b) how disabling something with the silly name of Chronic Fatigue Syndrome can be.
 
I generally equate it to MS in terms of symptoms/severity and mention that "in every other English-speaking country, CFS is known as Myalgic Encephalomyelitis" -- those two factors tend to get us more respect.
 
 
 
 







Wednesday, September 30, 2009

Deadline for Web submission of testimony is Sunday

 
For members of the public who cannot attend the October 29-20 2009 meeting
of the Chronic Fatigue Syndrome Advisory Committee you may send in printed
materials. Printed materials to be distributed to
CFSAC members for discussion at the October 29-20 2009 meeting
should submit,
at a minimum, one copy of the material to the Executive Secretary, CFSAC,
prior to close of business on
*October 15, 2009.*

Submissions are limited to five typewritten pages.

Printed materials should be sent to:

Wanda K. Jones, Dr.P.H.; Executive Secretary,
Chronic Fatigue Syndrome Advisory Committee,
Department of Health and Human Services;
200 Independence Avenue, SW., Room 712E;
Hubert Humphrey Building
Washington, DC 20201;

(202) 690–7650

The CFSAC was established on September 5, 2002. The Committee was
established to advise, consult with, and make recommendations to the
Secretary, through the Assistant Secretary for Health, on a broad range of
topics including:

(1) The current state of the knowledge and research about the epidemiology
and risk factors relating to
chronic fatigue syndrome, and identifying potential opportunities in these
areas;

(2) current and proposed diagnosis and treatment methods for chronic fatigue
syndrome; and

(3) development and implementation of programs to inform the public,
health care professionals, and the biomedical, academic, and research
communities about advances in chronic fatigue syndrome.


It should be noted that the CDC does not do basic biomedical research. That
government funded research is done through the NIH.

The National Institutes of Health and its Office of Research in Women's
Health have been holding a series of conferences at which health care
providers and members of the public offer testimony about what they think
are the key issues that biomedical scientists should be exploring.

The ideas and recommendations emerging from these conferences will help
inform future women's health research priorities at the NIH.  Written
testimony will be incorporated into the catalog that all attendees will
receive.

Those unable to attend, but wishing to present written testimony at the
final conference in Chicago are asked to submit a written form of their
testimony that is limited to a maximum of 10 pages, double spaced, 12 point
font, and should include a brief description of the organization you
represent if you are not submitting personal testimony.

Your testimony will be included in a catalog prepared for distribution at
the meeting. Please submit your testimony at http://www.orwhmeetings.com/movingintothefuture/northwestern/testimony.aspx

Please submit your testimony on this web page by midnight *October 4, 2009*(EST)

As there are many people submitting written testimony and sometimes
paperwork may be lost, you may wish to retain copies and make note of the
date and time submitted. Printed materials sent using the US Postal Service
can be sent certified mail or require confirmation of receipt by the
Secretary.