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Welcome!
For 22 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.
We are excited to introduce a new format for our print publication, and to update its name, while preserving the tradition of the beloved CFIDS Chronicle. SolveCFS: The Chronicle of the CFIDS Association of America will be distributed three times a year to all Association supporters who make an annual gift of $35 or more. It will highlight how the Association is advancing progress in CFS research and policy and it will share 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 also made the publication available in an online format; you can read it here.
We have created this page for SolveCFS readers to easily find expanded or updated information mentioned in the Spring/Summer 2009 issue, using one web address for all the story references, listed page-by-page, story-by-story. We’ve flagged recent additions to the links below with “new!” so you can find them quickly. 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
Page 1: SolveCFS
Welcome!
Dr. Suzanne Vernon Honored by IACFS/ME
Dr. Vernon’s acceptance speech: http://www.cfids.org/cfidslink/2009/040103f.asp
Advancing Policy: A New Partnership for Progress
B&D Consulting web site: http://bakerdconsulting.com/
Page 2: AccelerateCFS Research
Reno Wrap-Up: A Report on the 2009 IACFS/ME Conference
Daily reports and other resources: http://www.cfids.org/cfidslink/2009/040103.asp
Page 3: InnovateCFS
A Run for the Money
NIH & ARRA: http://www.nih.gov/recovery/index.htm
A Coordinated Response
More information about the Association’s research program: http://www.cfids.org/about/acceleratecfsresearch.asp
Page 4: ManageCFS
More Hope for People with Fibromyalgia Pain
Lyrica: www.lyrica.com
Cymbalta: www.cymbalta.com
Savella: www.savella.com
Drug prices: www. PharmacyChecker.com
Partnership for Prescription Assistance: www.PPARx.com
Treatments Further Explored
Ampligen updates: http://www.cfids.org/about/whats-new.asp
Page 5: ConnectCFS
Association Debuts On Facebook
Facebook page: http://www.facebook.com/pages/The-CFIDS-Association-of-America/47921632107
Survey Series Reveals Reader Interests
https://www.surveymonkey.com/s.aspx?sm=pvjQeneeargHHDiKsXojjQ_3d_3d
1200 respondents share their beliefs about how they got sick and what keeps them sick
Association Offers Free Educational Materials:
To make a request, send an email to: cfids@cfids.org
Alliance Formed to Represent Overlapping Conditions
Overlapping Conditions Alliance: www.OverlappingConditions.org
Page 6: ValidateCFS
CDC Solicits Input and Gets Plenty
Full text version of story, with other links: http://www.cfids.org/cfidslink/2009/050607.asp
CDC’s draft 5-year research plan: http://www.cdc.gov/cfs/draft_5yr_research_plan.htm
Send CDC a message about its plan: CFSResearchPlan@cdc.gov
Association’s 7-page letter to Acting Director Besser: http://www.cfids.org/cfidslink/2009/050607d.pdf
Association’s 9-page letter in response to research plan:
http://www.cfids.org/temp/research-plan-response.pdf
Page 7: ValidateCFS
Public Awareness By the Numbers
Spark! awareness campaign site: http://www.cfids.org/sparkcfs/default.asp
Have You Seen the Face of CFS?
“The Faces of CFS” exhibit schedule: http://www.cfids.org/sparkcfs/photo.asp
New venues scheduled for fall 2009: http://www.cfids.org/cfidslink/2009/080510.asp
Media Isn’t Tired of CFS
Media coverage: http://www.cfids.org/sparkcfs/media-coverage.asp
Medscape Course Makes An Impact
Free online CME course: http://cme.medscape.com/viewprogram/17442
Virtual Lobby Day: Five Years Strong
Participate by responding to five alerts: http://capwiz.com/cfids/home/
Page 8: EliminateCFS
Extending the Lifeline
Tell us how you like the new format; send a message to: cfids@cfids.org
Hear what we've heard so far, and where to find content you might miss: http://www.cfids.org/cfidslink/2009/080501.asp
As We Went to Press
CFS Advisory Committee meeting report: http://www.cfids.org/cfidslink/2009/060309.asp
CFS Advisory Committee editorial: http://www.cfids.org/cfidslink/2009/060301.asp
Association responds to CDC’s research plan: http://www.cfids.org/cfidslink/2009/070108.asp
Archived video/audiocast of meeting: http://videocast.nih.gov/PastEvents.asp?c=39
New! NIH approves CFS think-tank grant!: http://www.cfids.org/cfidslink/2009/070103.asp
Other news: http://www.cfids.org/about/whats-new.asp
June edition of CFIDSLink: http://www.cfids.org/archives/2006-2010-cfidslink/june-2009.asp
July edition of CFIDSLink: http://www.cfids.org/archives/2006-2010-cfidslink/july-2009.asp
August edition of CFIDSLink: http://www.cfids.org/archives/2006-2010-cfidslink/august-2009.asp
Sign up to receive CFIDSLink: http://visitor.constantcontact.com/email.jsp?m=1102157695492&p=oi
Donate to the CFIDS Association of America: https://secure.cfids.org/PayPalDonation/tabid/100/Default.aspx
Read SolveCFS online!
This page last updated on August 5, 2009
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