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Welcome
to the summer - fall 2011 issue!

Since its founding in 1987, the CFIDS Association of America has supported important research into the biological basis of CFS through direct grants to investigators, sponsorship of scientific symposia and meetings, fostering collaborations and, most recently, establishing the SolveCFS BioBank. As announced in the fall 2009 issue of SolveCFS, we have narrowed our focus to stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment. We are transforming from a patient support and advocacy organization to one laser-focused on stimulating and supporting research. We are putting research first.

In this issue of SolveCFS, you’ll read more about some of the early products of our last round of research grants (see pages 2–3). You’ll also learn more about these activities:

We have formed a Scientific Advisory Board of top experts from many disciplines to advise our Board of Directors and staff on strategic research opportunities.
We issued a new funding opportunity for projects that build on the most promising science to advance objective diagnosis and effective treatment for CFS. By September 30, we anticipate receiving 27 full proposals from researchers in six countries.
We are expanding the SolveCFS BioBank and our collaborations with other research institutions to make the BioBank an even more valuable research resource.

We apologize for the long lapse since our last issue of this publication and hope you have been able to access our monthly enewsletter, CFIDSLink, and daily updates on Facebook and Twitter. We have recapped the most important news in this issue. On May 24, 2011, we expanded our web-based resources with the launch of a new website called Research1st, described on page 10.

The Association is fully committed to ending the life-altering disability, stigma and isolation of CFS. We are grateful for your loyal support and hope we can count on your continued generosity to make this vision a reality.

IN THIS ISSUE
Fall 2010

Page 1: Newsworthy Highlights of 2011 (so far)
Two papers associating CFS with a family of gammaretroviruses (including XMRV) have generated lots of headlines and ample controversy over the past two years (see pages 8–9). Other events have also raised general and scientific awareness about CFS this year; here are several:

Jan. 26: The Food and Drug Administration announced that new applications for CFS treatments will be assigned to a single division. Previously, CFS applications were scattered to six different review divisions.
http://www.hhs.gov/news/press/2010pres/12/20101214a.html

Feb. 4: Author Laura Hillenbrand educated New York Times readers about her 23-year battle with CFS and the resilience she shares with Louis Zamperini, hero of her latest bestseller, Unbroken.
http://well.blogs.nytimes.com/2011/02/04/an-author-escapes-from-chronic-fatigue-syndrome/?hp

Feb. 23: Researchers at the University of Medicine and Dentistry of NJ and Pacific Northwest National Laboratory reported on spinal fluid markers that distinguish CFS, non-recovered post-treatment Lyme disease and healthy controls. Katie Couric introduced the story that night on “The CBS Evening News.”
http://www.research1st.com/2011/02/23/spinal-markers-research-attracts-cbs-evening-news-coverage/

Mar. 5: CFS was the subject of a major feature in the Wall Street Journal, “The Puzzle of CFS.” It spotlighted Dr. David Bell, some of his long-time patients in Lyndonville, NY, and the lengthy search for better diagnostics and treatment.
http://online.wsj.com/article/SB10001424052748704005404576176823580854478.html?mod=WSJ_newsreel_lifeStyle

Mar. 12: The front page of the Wall Street Journal explored tensions between CFS patients and researchers in “Amid War on Mystery Disease, Patients Clash With Scientists.”
http://online.wsj.com/article/SB10001424052748704008704575639193973468402.html?mod=ITP_pageone_0

Apr. 7–8: The National Institutes of Health hosted the ME/CFS State of the Knowledge Workshop, its first in 10 years.
http://www.research1st.com/2011/06/28/meeting-summary-mecfs-state-of-the-knowledge-workshop/

May: For the first time, the Department of Defense included CFS as one of the eligible topics for its Congressionally Directed Medical Research Program.
http://cdmrp.army.mil/funding/pa/11prmrpiira_pa.pdf

May 10–11: The Department of Health and Human Services CFS Advisory Committee met to make recommendations to Secretary Kathleen Sebelius.
http://nih.granicus.com/ViewPublisher.php?view_id=26

May 26: Researchers at the University of Utah reported results from an Association-funded study that shows potential biomarkers for CFS following a modest exercise challenge.
http://www.research1st.com/2011/06/02/exercise-challenge-reveals-potential-cfs-biomarkers/

June 29: The Institute of Medicine released its report, “Relieving Pain in America,” documenting that 116 million Americans experience chronic painful conditions (including CFS).
http://www.research1st.com/2011/06/29/iom-report-provides-roadmap/

July 20: An independent panel of 26 experts from 13 countries published new criteria for myalgic encephalomyelitis (M.E.) and recommended this term replace CFS.
http://www.research1st.com/2011/07/25/me-case-definition/

July 26: Nature Reviews Neuroscience published a six page Q&A with four CFS researchers about their views on CFS, its causes and the future of research.
http://www.research1st.com/2011/08/11/complex-illness/

Sept.: Ladies’ Home Journal covered the challenge of diagnosing, managing and living with CFS.
http://www.lhj.com/health/news/chronic-fatigue-syndrome/?page=1

Sept. 5: Joanne Silberner took a look at CFS research on National Public Radio’s “Morning Edition.”
http://www.npr.org/player/v2/mediaPlayer.html?action=1&t=1&islist=false&id=140150429&m=140191096

Page 2&3: InnovateCFS
Acceleration to Transformation
http://www.cfids.org/research/transformation.pdf

Returning On Your Investment
     Gordon Broderick, PhD of University of Alberta
     Kathleen Light, PhD of University of Utah
     Marvin Medow, MD of New York Medical College
     Bud Mishra, PhD of New York University School of Medicine
     Sanjay Shukla, PhD of Marshfield Clinic Research Foundation
     Dikoma Shungu, PhD of Weill Medical College of Cornell University

Page 4&5: InnovateCFS
Expanding Research: Looking to the Future
http://www.cfids.org/research/expanding-research.pdf

Scientific Advisory Board Deepens Association’s Expertise
http://www.research1st.com/2011/06/10/scientific-advisory-board-announced/

Pages 6&7: ValidateCFS
Journal Highlights Reflect Multiple Hypotheses and Body-Wide Dysfunctions
http://www.research1st.com/promising-cfs-research-findings/

The Promise of the Proteome
http://www.cfids.org/research/proteome-analysis.pdf

Hi-Fi Sci-Di: Dr. Suzanne Vernon Orchestrates High-Fidelity Research
http://www.cfids.org/research/hi-fi-sci-di.pdf

Page 8&9: ValidateCFS
The X Factor
http://www.research1st.com/2011/09/13/the-x-factor/

Federal Agency Updates

     NIH Convenes Experts
     http://www.research1st.com/2011/06/28/meeting-summary-mecfs-state-of-the-knowledge-workshop/

     CFS Advisory Committee Recommendations and Nominations
     http://www.research1st.com/2011/07/27/cfsac-updates/

     Department of Defense Recognizes CFS
     http://www.cfids.org/cfidslink/2010/040704b.pdf

Page 11: ConnectCFS
News Briefs
     Building Awareness and Deepening Understanding
      patientINFORM http://www.research1st.com/2011/09/13/patientinform-2/

     Supporting the Cause
      "24 Hours in the Enchanted Forest: A Race to SolveCFS" http://www.24hitef.com/?q=content/home

Page 12: TransformCFS
The Catalyst Fund
http://www.cfids.org/about/catalyst-fund.pdf

This page last updated on Sept. 26, 2011