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Welcome!
For 23 years, the CFIDS Association of America has been at the leading edge of CFS research, policy and education. Through “thick and thin,” this organization has responsibly represented the needs of CFS patients and their loved ones. Inspired by the courage and passion of volunteers and fueled by gifts small and large from supporters committed to a vision of a world without CFS, the Association has adapted to new challenges and opportunities while remaining true to its roots.
A year ago we introduced a new format for our print publication and updated its name, while preserving the tradition of the beloved CFIDS Chronicle. SolveCFS: The Chronicle of the CFIDS Association of America is now distributed three times a year to all Association supporters who make an annual gift of $35 or more. It highlights how the Association is advancing progress in CFS research and policy and shares global news of interest to those who are committed to our cause.
SolveCFS will supplement our monthly electronic newsletter, CFIDSLink. We recognize that even in this internet age, many people still do not have regular access to online publications, and that others find screen-based text difficult to read, retain and/or share with others. SolveCFS is created with this audience in mind, and will also extend our tradition of having a print publication to serve as a tangible touchpoint for our supporters.
We have created this page for SolveCFS readers to easily find expanded or updated information mentioned in the Sprint/Summer 2010 issue, using one web address for all the story references, listed page-by-page, story-by-story. We’ll create a new page for each print issue.
We hope that integrating our print and electronic publications will help meet the information needs of our supporters and will expand the number of people served by our publications. Thank you for your continuing support!
IN THIS ISSUE
Spring/Summer 2010
Page 1: SolveCFS
So Much News To Share!
Join us on Facebook: www.facebook.com/cfidsassn
Join us on Twitter: http://twitter.com/PlzSolveCFS
Visit us on YouTube: http://www.youtube.com/solvecfs
“Precipitating Pathogens”: http://www.cfids.org/cfidslink/2010/010604.asp
“We Are Not Alone”: http://www.cfids.org/cfidslink/2010/060202.asp
“The Hallmark of CFS”: http://www.cfids.org/cfidslink/2010/020302.asp
“Unraveling Post-Exertional Malaise”: http://www.cfids.org/cfidslink/2010/060204.asp
“Litmus Test”: http://www.cfids.org/cfidslink/2010/050303.asp
CDC Announces Leadership Change for CFS Research Program: http://www.cfids.org/cfidslink/2010/020303.asp
Justification for Defense Appropriators: http://www.cfids.org/cfidslink/2010/020301.asp
“The Trouble With M.E.” (from the U.K. Guardian):
http://www.guardian.co.uk/society/2010/may/13/me-chronic-fatigue-syndrome
XMRV Generates New Scientific Interest in CFS
XMRV Resources and Links: http://www.cfids.org/xmrv/default.asp
Page 2: InnovateCFS Research
Embarking on the SolveCFS BioBank
BioBank Announcement: http://www.cfids.org/biobank/announcement.asp
BioBank Enrollment Criteria
Current Enrollment Criteria:
http://www.solvecfs.org/solvecfsbiobank/currentstudycriteria/tabid/117/Default.aspx
Criteria for Healthy Controls: http://www.solvecfs.org/solvecfsbiobank/healthycontrolsubjectsneeded/tabid/114/Default.aspx
Page 3: AccelerateCFS Research
Comparison of Published XMRV Studies in Patients with CFS
XMRV Resources and Links: http://www.cfids.org/xmrv/default.asp
Comparison of Published XMRV Studies in Patients with CFS
June 18, 2010 Statement from AABB: http://www.aabb.org/pressroom/Pages/cfsrecommendation.aspx
June 18, 2010 Press Release from CFIDS Association:
http://www.cfids.org/xmrv/aabb-statement-june10.asp
June 21, 2010 Article in ScienceInsider:
http://news.sciencemag.org/scienceinsider/2010/06/blood-banks-urged-to-discourage.html
Guidance for Persons with CFS for Safe Blood Donation: http://www.cfids.org/blood.asp
Page 4: ValidateCFS
CFS Advisory Committee Makes Five Policy Recommendations
Comprehensive Summary of May 10, 2010 Meeting: http://www.cfids.org/cfidslink/2010/051701.asp
Capitol Hill Meetings Seek to Expand Research
Justification for Health Appropriators: http://www.cfids.org/cfidslink/2010/040704a.pdf
Justification for Defense Appropriators: http://www.cfids.org/cfidslink/2010/040704b.pdf
Virtual Lobby Day message templates: http://www.capwiz.com/cfids/home/
Page 5: ValidateCFS
Webinars Bring World-Class Learning Directly Into Your Home
What to Expect During A Webinar: http://www.cfids.org/webinar/what-is-a-webinar.asp
Past Recordings: http://www.cfids.org/webinar/series2010-past.asp
Clip This Schedule! http://www.cfids.org/cfidslink/2010/040703.asp
Page 6: ValidateCFS
First National Awareness Campaign Comes to A Close
CDC and Press Validate CFS: http://www.cfids.org/cfidslink/2006/press-coverage.asp
Public Awareness Campaign By The Numbers: http://www.cfids.org/cfidslink/2009/030406.asp
Media Coverage: http://www.cfids.org/sparkcfs/media-coverage.asp
New Pain Campaign Gets Off the Ground
Campaign to End Chronic Pain in Women: http://www.endwomenspain.org
Campaign report: http://www.cfids.org/pain-campaign/launch-event.asp
“Through the Maze: Chronic Pain & Women”: http://www.youtube.com/CECPW
Recording of the May 19 Launch Event: http://www.endwomenspain.org/launch
Page 7: ConnectCFS
Conferences Spotlight CFS:
International Society for Biological and Environmental Repositories:
http://www.isber.org/mtgs/2010rotterdam/
2010 Genetic Alliance Annual Conference: http://www.geneticalliance.org/conference2010
First International XMRV Workshop:
http://www.virology-education.com/index.cfm/t/1st_International_Workshop_on_XMRV/vid/1FF
10297-0DC4-5841-64634A68A3EC3EF1
Other News from the CFIDS Association of America
Month-by-Month Recap: http://www.cfids.org/cfidslink/2010/010601.asp
Association FAQ: http://www.cfids.org/cfidslink/2010/010607.asp
Risk Factors Survey: https://www.surveymonkey.com/s/RiskFactors
The Pain Practitioner article on CFS:
http://www.cfids.org/about-cfids/pain-practitioner-spring2010.pdf
Association’s Letter to APA regarding DSM-5 Proposal:
http://www.cfids.org/advocacy/2010/dsm5-statement.pdf
BBB’s link to CFIDS Association:
http://www.bbb.org/charity-reviews/national/health/cfids-association-of-america-in-charlotte-nc-1310
Join us on Facebook: http://www.facebook.com/cfidsassn
SolveCFS Facebook cause: http://www.causes.com/causes/233461?recruiter_id=50267401
24 Hours in the Enchanted Forest website: http://www.24hitef.com/
The Legacy Fund
For more information, email Ashley Comstock at aacomstock@cfids.org
Page 8: ConnectCFS
As We Went to Press
XMRV Resources and Links: http://www.cfids.org/xmrv/default.asp
Blood Supply Issues
June 17, 2010 Statement from AABB: http://www.aabb.org/pressroom/Pages/cfsrecommendation.aspx
June 17, 2010 Press Release from CFIDS Association:
http://www.cfids.org/xmrv/aabb-statement-june10.asp
June 21, 2010 Article in ScienceInsider:
http://news.sciencemag.org/scienceinsider/2010/06/blood-banks-urged-to-discourage.html
Guidance for Persons with CFS for Safe Blood Donation: http://www.cfids.org/blood.asp
Connect With Us Online
Sign up to receive CFIDSLink: http://www.cfids.org/development/checkemail.aspx
Donate to the CFIDS Association of America:
https://secure.cfids.org/PayPalDonation/tabid/100/Default.aspx
Join us on Facebook: www.facebook.com/cfidsassn
Join us on Twitter: http://twitter.com/PlzSolveCFS
Visit us on YouTube: http://www.youtube.com/solvecfs
This page last updated on June 24, 2010
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