Association Research Activities: Putting Research First

July 11, 2013
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The field of CFS research is at a pivotal moment—a defining moment—for CFS, with critical opportunities to propel the field forward in unprecedented ways and to accelerate the rate of progress. The Solve ME/CFS Initiative is actively building the capacity of the scientific community to transform CFS into a condition that is treatable, preventable and curable. Under the guidance of our scientific director, Dr. Suzanne Vernon, the multifaceted research program is:

  • Funding innovative laboratory and clinical studies;
  • Encouraging the use of cutting-edge technology to analyze existing data in new ways;
  • Strengthening collaborations with investigators around the world;
  • Capitalizing on the minds of gifted scientists in other fields of medical research;
  • Recruiting new talent to the CFS field; and,
  • Facilitating proactive communication within the scientific community to share ideas, knowledge and data to advance the field; and
  • Building a respository of blood and tissue samples from well-characterized CFS patients.
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Drs. Alan Light and Kathy Light

In November 2008, the Association announced the funding of six new CFS studies after a rigorous review process to identify the studies with the strongest scientific and strategic merit of the 21 proposals received. Here are links to additional information about those research projects:

Press release about the funding announcement
Abstracts describing the six new studies
Meet Dr. Gordon Broderick of University of Alberta
Meet Dr. Katheen Light of University of Utah
Meet Dr. Marvin Medow of New York Medical College
Meet Dr. Bud Mishra of New York University
Meet Dr. Sanjay Shukla of Marshfield Clinic Research Foundation
Meet Dr. Dikoma Shungu of Weill Cornell Medical School

In January 2009, the Association held its first investigators meeting to gather principal investigators, key collaborators and peer reviewers to exchange ideas, discuss study design, synchronize data collection and begin the process of sharing study data. Read more about this important meeting by clicking here.

Several of the Association’s funded investigators presented data at the 9th International IACFS/ME Research and Clinical Conference held in March 2009 in Reno, Nevada. Dr. Vernon gave a three-hour workshop on CFS research and she received an award from the IACFS/ME for “research excellence.” Find several conference reports and resources here.

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Dr. Gordon Broderick, Dr. Suzanne Vernon and Dr. Sanjay Shukla

On May 3, 2009, the Association hosted a Research Roundtable event in Chicago for research campaign supporters to hear from scientific director Suzanne Vernon, PhD, and two of the Association’s grantees. Dr. Gordon Broderick of University of Alberta and Dr. Sanjay Shukla of Marshfield Clinic foundation impressed attendees with their study plans and some early data.

The Association applied for several NIH grants to support its program and innovative collaborative studies. On June 30, 2009, NIH awarded a $35,000 grant to support a CFS think-tank meeting the Association hosted at Cold Spring Harbor Lab’s Banbury Center. A second Research Roundtable was held in Denver on July 12, 2009. Dr. Marvin Medow of New York Medical College and Dr. Lucinda Bateman of Salt Lake City joined Dr. Vernon to deliver updates on the Association’s research program.

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Banbury participants gather for a group photo.

In September 2009, the CFIDS Association and NIH gathered funded CFS investigators together for an intensive three-day meeting at Banbury Center titled, “From Infection to Neurometabolism: A Nexus for CFS.” The productive session yielded unparalleled collaboration and plans to expand the CFS research network using existing models and networking tools. Read more about the meeting here.

The Association’s funded teams have provided interim updates and four groups have published CFS data. Here are some links to stories about these studies:

Dr. Gordon Broderick
“Recalibrating flight or fight”
“Model-based therapeutic correction of HPA axis dysfunction”

Dr. Kathleen Light
“Blood Biomarkers: A Light at the end of the tunnel”

Dr. Marvin Medow
“Slow Flow”
March 25, 2010 webinar, “Going With The Flow – Blood Flow, That Is”

Dr. Dikoma Shungu
“Researcher Dikoma Shungu Continues Brain Studies with Association Grant”
“Study finds link between CFS and high lactate levels in the brain”

With the publication of a study in the journal Science, on Oct. 8, 2009 linking CFS to the retrovirus XMRV, the Association immediately began coordinating researchers who requested assistance to develop critical validation studies. The first study from another research group in the U.K. reported negative results on Jan. 6, 2010 and two other negative studies quickly followed on Feb. 15 and Feb. 22, 2010. There are many more studies in the literature today and multi-lab collaborations established to better understand this family of retroviruses and disease associations. We’re keeping our XMRV resource page up-to-date, as well as helping make sense of new developments. Make sure you subscribe to our monthly enewsletter, CFIDSLink, to get regular updates..

On March 29, 2010, the Association announced a partnership with Genetic Alliance to form the SolveCFS BioBank, a repository of clinical data and blood and tissue samples collected from CFS patients and controls. The SolveCFS BioBank will make samples and information available for approved research projects to identify biomarkers, explore the causes of and potential treatments for CFS. BioBank participants are protected by the highest standards for maintaining the security and privacy of material contributed to the biobank. We are working with several clinical and academic collaborators and major industry partners on the first collaborative study. As such, the initial enrollment criteria are rather strict. As scientific director Dr. Suzanne Vernon indicates, “The SolveCFS BioBank is an innovative research resource that will be used for validation of promising biomarkers, genetic studies, family studies and genomics research. It will be a resource for discovery, diagnostics and targeted treatments. We hope to have adequate funding soon to expand recruitment beyond the inaugural study requirements. This will truly empower more people affected by CFS to participate in this exciting research, and will ultimately lead to the answers we all seek.”

On April 6, 2011, the Associaion issued a Request for Applications (RFA) that will advance objective diagnosis and effective treatment of CFS. The RFA was posted on several research grant sites and sent to a targeted list of than 500 researchers. Applications will be peer-reviewed for scientific and strategic merit.

The Solve ME/CFS Initiative is intensifying its efforts to build a critical mass of rigorous research that validates the biological basis for CFS and leads to improved methods for diagnosis and treatment. We are putting research first to achieve the vision of a future in which the life-altering disability, stigma and isolation of CFS no longer exist.

More news about our research will be reported in the Association’s publications and its web site. Visit often to stay up-to-date and continue supporting these efforts with your donations.

You might also be interested to read these other articles about the Association’s research program.

Research Campaign Reaches $1 Million Goal!
Association’s Scientific Director Authors Eight Papers in 2008
Accelerating Research: Our Future
Meet Suzanne Vernon (PDF file)
Webinar: The Science of CFS
Looking for a Breakthrough (PDF file)
The Research/Advocacy Connection
10 Discoveries on the Biology of CFS
Fostering Research
A Run for the Money
Looking Back, Looking Ahead
Association-Funded Researchers Making Headway
FAQ about the Association
Recap of 2009 Association Activities
Hallmark of CFS: Post-exertional malaise
Precipitating Pathogens

SolveCFS BioBank Announcement
What Should Come Next?
Expanding Research: Building on Your Investment
Putting Research First
2011 Request for Applications

CFIDS Association Research Program webinars:

Association Research Program Update by Suzanne D. Vernon, PhD
Association Research Program Update: Part 2 by Suzanne D. Vernon, PhD
Association Research Program: Update: Part 3 by Suzanne D. Vernon, PhD
Expanding Research: Building On Your Investment moderated by Suzanne D. Vernon, PhD. Guest speakers include Kathy Light, PhD, Alan Light, PhD, Gordon Broderick, PhD and Dikoma Shungu, PhD.

Last updated on April 5, 2011