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
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.
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.
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.”
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.
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.”
Apr. 7–8: The National Institutes of Health hosted the ME/CFS State of the Knowledge Workshop, its first in 10 years.
May: For the first time, the Department of Defense included CFS as one of the eligible topics for its Congressionally Directed Medical Research Program.
May 10–11: The Department of Health and Human Services CFS Advisory Committee met to make recommendations to Secretary Kathleen Sebelius.
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.
June 29: The Institute of Medicine released its report, “Relieving Pain in America,” documenting that 116 million Americans experience chronic painful conditions (including CFS).
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.
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.
Sept.: Ladies’ Home Journal covered the challenge of diagnosing, managing and living with CFS.
Sept. 5: Joanne Silberner took a look at CFS research on National Public Radio’s “Morning Edition.”
Page 2&3: InnovateCFS
Acceleration to Transformation
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
Scientific Advisory Board
Deepens Association’s Expertise
Pages 6&7: ValidateCFS
Journal Highlights Reflect Multiple
Hypotheses and Body-Wide Dysfunctions
The Promise of the Proteome
Hi-Fi Sci-Di: Dr. Suzanne Vernon Orchestrates High-Fidelity Research
Page 8&9: ValidateCFS
The X Factor
Page 10: ConnectCFS
“XMRV: Trials and Tribulations”
“Exercise Challenge Reveals Potential”
“The Outs and Ins of OI”
“Is it Anxiety or OI?”
“From the CEO’s Desk: What Can We Learn?”
“Oxidative Stress and Mitochondrial Dysfunction: Key Players in CFS?”
“Shedding Light on Biomarkers”
“I Can’t Brain Today: I’ve Got the Dumb”
“Doc Talk: Filling the Information Gap Between CFS Clinicians and Patients”
Federal Agency Updates
NIH Convenes Experts
CFS Advisory Committee Recommendations and Nominations
Department of Defense Recognizes CFS
Page 11: ConnectCFS
Building Awareness and Deepening Understanding
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
This page last updated on Sept. 26, 2011