Update on Association’s Research Activities

Since 1987 the Association has provided nearly $5 million in direct support of CFS studies, has hosted scientific symposia and has cosponsored meetings to identify promising areas of investigation. Here’s an update on our grant-making program and on the recent activities of our scientific director, Dr. Suzanne Vernon.

Association research grants program

In March 2008 the Association issued a Request for Applications (RFA) soliciting research proposals that will advance the discovery of biomarkers and methods for early detection, objective diagnosis and effective treatment of CFS. The response was robust, signifying the overwhelming need for CFS research funding:

  • 35 letters of intent were received, requesting $3.3 million in support.
  • 33 investigators at 28 institutions submitted proposals.
  • 9 countries were represented among the letters of intent.

In additional promising news, 24 of the 35 research grant proposals met all the initial review criteria outlined in the RFA, and those researchers were all invited to submit full applications by the deadline of August 18, 2008. To institute stronger compliance and performance measures for successful grantees in the upcoming funding cycle, the Association also issued a new set of policies governing the award of research grants.

The Association hopes to announce 2008-2009 funding awards by October.

During the last funding cycle in 2006-2007, five CFS research projects totaling $288,900 were funded. By launching the Campaign to Accelerate CFS Research, we hope to generate the funding to award even more in research grants in the current cycle.

Grants we made during the last cycle funded studies investigating etiology, virus genomics, cellular dysfunction, neurometabolites and exercise in CFS. Here’s a rundown of the research we were able to fund through the generosity of your donations:

  • Studies on the Etiology of Chronic Fatigue Syndrome
    Investigator: Ronald Glaser, PhD, Ohio State University, Columbus, OH
    Budget: $48,950
  • HERV-K18 env as a Risk Factor for CFS
    Investigator: Brigitte T. Huber, PhD, Tufts University School of Medicine, Boston, MA
    Budget: $60,000
  • Mechanisms of Cytotoxic Cell Dysfunction in CFS
    Investigator: Nancy Klimas, MD, University of Miami, Miami, FL
    Budget: $60,000
  • 1H MRS Neurometabolites as Diagnostic Markers for Chronic Fatigue Syndrome: Comparison with Major Depressive Disorder and Healthy Volunteers
    Investigator: Dikoma C. Shungu, PhD, Weill Medical College of Cornell University, New York, NY
    Budget: $59,950
  • Using an Exercise Challenge to Investigate the Pathophysiology of CFS
    Investigators: J. Mark VanNess, PhD, and Christopher Snell, PhD, University of the Pacific, Stockton, CA
    Budget: $60,000

With support from the Solve ME/CFS Initiative, VanNess and Snell were able to establish the Pacific Fatigue Lab at University of Pacific and have established collaborations with Stanford University and the Whittemore-Peterson Institute. They’re currently writing manuscripts based on data from their work and plan to present findings at a fatigue meeting in Alberta, Canada, in November and at the March 2009 IACFS/ME conference.

Results from Huber’s study of the human endogenous retrovirus K18 (HERV-K18)—indicating genetic evidence for the unique etiology of at least one subtype of CFS—laid the groundwork for her to receive a much larger grant from the National Institutes for Health (NIH) to continue investigating the subject.

These are just two examples of the ongoing progress that Associated-funded grants can generate. With the addition of a full-time scientific director to our staff, we look forward to building even more scientific momentum.

Scientific director roadshow

The Association’s new scientific director, Suzanne Vernon, PhD, continues to travel—attending scientific meetings, visiting with researchers and sharing CFS science with public policymakers. Here’s a sampling of where she’s been recently and where she’s heading in the near future:

  • Vernon gave a presentationon micorarray studies at a CFS and infections symposium at the Sixth International Conference on HHV-6 and HHV-7 on June 22-23 in Baltimore, Maryland. The Association was a co-sponsor for this satellite meeting. Among the highlights was a presentation from Jose Montoya, MD, of Stanford University on the clinical trial of Valcyte. You can read Vernon’s thoughts on the conference and trial in “View from HHV-6 and Virus Meetings.”
  • Vernon gave a presentation titled “Understanding the Biology of Chronic Fatigue Syndrome to Improve Objective Diagnosis and Intervention” at the Fifth Annual Scientific Meeting of the TMJ Association on June 2 in Bethesda, Maryland. She also represented CFS on a panel of representatives of conditions with overlapping symptoms.
  • A third research webinar was held on May 28, 2008. This event attracted 366 registrants and 192 participants. Participants enjoyed the content of the presentation, the online format and the details about the research campaign.
  • At the CDC’s invitation, on May 16 the Association submitted a list of recommended reviewers for a planned peer review of the agency’s CFS research program, set for fall 2008.
  • On May 8 the Association hosted a congressional briefing on CFS with assistance from Senator Tom Harkin. The purpose of the event was to deepen congressional health staffers’ appreciation for the scientific opportunity in the field of CFS research and to impress upon them the burden of illness CFS imposes. Several weeks prior to the briefing and again the afternoon of the event, Vernon was one of the people making personal visits to lawmakers to share the science.
  • On May 7 Vernon and Association president & CEO Kim McCleary met with representatives of the NIH and the Foundation for NIH to explore public-private partnerships that might be used to facilitate expanded research by NIH’s intramural scientists.
  • Also on May 7, Vernon met with Cheryl Kitt, PhD, deputy director of the NIH Center for Scientific Review to better understand their review process, transition plans following the retirement of the CFS Special Emphasis Panel’s program officer (Dr. Terry Hoffeld), and ways in which the Association might help boost the number of applications submitted to the NIH for CFS research.
  • Vernon and McCleary attended the Department of Health and Human Services CFS Advisory Committee meeting in Washington, D.C., on May 5-6. Agency updates on research programs at the CDC and NIH were presented, providing the opportunity to gather information and question officials about ongoing and planned activities.
  • On April 18 Vernon sent Japanese research leader Yasuyoshi Watanabe, PhD, MD, a proposal for a CFS session and several keynote addresses at the International Conference on Fatigue Science to be held in Okinawa September 4-6. Watanabe accepted many of these recommendations and is extending invitations to the speakers. The Association will be a conference sponsor and Vernon will present introductory remarks to the 300 scientists expected to attend.
  • Vernon and McCleary met with a group of 25 researchers in Japan on April 10-11. The Japanese team’s integrated approach to clinical, imaging, genomics and genetics studies of CFS and fatiguing illness was impressive, as was the leadership of Watanabe and clinical expertise of Hirohiko Kuratsune, MD. Katherine Rowe, MD, of Children’s Hospital in Melbourne also joined Vernon and McCleary for the meetings at the Center of Excellence for Fatigue Science in Osaka City and the RIKEN Institute in Kobe.
  • On March 24 Vernon facilitated a half-day meeting in Manhattan with 10 investigators and clinicians from seven area institutions in an effort to form new research collaborations and mini-network(s) among researchers.

Looking ahead

  • In preparation for the receipt of full grant applications, Vernon is assembling a large multidisciplinary team of reviewers with appropriate expertise to evaluate the scientific merit of the diverse proposals.
  • Vernon will give a presentation at the Karolinska Instituet in Stockholm, Sweden, in August.
July 1, 2008