Research Campaign: Questions & Answers

By Kim McCleary

In the winter 2008 issue of the CFIDS Chronicle and subsequent editions of the CFIDSLink, the CFIDS Association of America announced its Campaign to Accelerate CFS Research—an effort to raise $1 million this year to fuel the most ambitious expansion of our research program in the Association’s 22-year history. To help break down the details and plans behind the program, Association president and CEO Kim McCleary answers some of the questions we’ve been asked most often.

Why do you think the time is right to push to accelerate research?
Kim McCleary: The CFIDS Association has been closely involved in the CFS research field from the very beginning. We’ve witnessed (and participated in many of) the discoveries made over the last two decades, seeing key elements of this illness revealed bit by bit. A vast amount of data and information has been accumulated already, and studies are converging on biological pathways involved in causing and perpetuating CFS. Other important factors are coming together, too—like greater public awareness of CFS and more sophisticated technologies to collect and analyze scientific data. All of these advances help to position the field to make faster progress.

It’s a pivotal time, and we are well-positioned to apply the leverage needed to move CFS discovery to the next level.

Wouldn’t it be better if a federal health agency or a large university led the effort?
KM: No institution, public or private, has stronger motivation for leading the charge toward a cure than the CFIDS Association. We represent CFS patients and they need—they warrant—stronger action toward finding better diagnostics, more effective treatment and a cure. Waiting for a government agency or an academic center to accept that mission isn’t reasonable.

We’re inspired by the Japanese government’s commitment to making CFS and the larger “bio-alarm” of fatigue a national priority (described in the summer 2008 CFIDS Chronicle), and we will continue pushing United States health agencies to follow suit.

Leading this effort is entirely consistent with the Association’s mission to conquer CFS. It’s the reason we’ve used the popular quotation, “If not us, then who?” in conjunction with this campaign.

How will you use the money raised through this campaign?
KM: All of the money raised through the Campaign to Accelerate CFS Research is restricted for use in our research program. To strengthen our capacity to make sound decisions about the best ways to expand our program, we’ve hired an experienced and highly respected full-time scientific director, Suzanne Vernon, PhD, a microbiologist who has spent the past 10 years studying CFS.

Suzanne helped shape the Request for Applications we circulated to the research community in March. This generated 35 letters of intent, requesting a total of $3.3 million in support for a wide array of very promising studies. Those that met initial review criteria have been invited for full applications. We expect to receive 24 proposals in August that will be peer-reviewed by a multidisciplinary group of experts. This fall, our Executive Committee will make funding decisions based on scientific merit and strategic factors.

Funds raised through the campaign will support the best six to eight of these studies, all of which are focused on discovering biomarkers, diagnostics and treatment for CFS.

Once the grantees are selected, Suzanne will closely monitor progress according to performance milestones, helping the principal investigators overcome obstacles and maximize potential findings.

Another program expenditure goes toward supporting scientific conferences where investigators can share findings and challenge one another’s observations. For example, we cosponsored the recent symposium on viruses in CFS (see page 6) and will cosponsor the upcoming meeting on fatigue science in Okinawa, Japan, in September.

Over the past six months, we’ve also dedicated resources to fostering data-sharing and linking investigators with one another. So far Suzanne has delivered presentations at six scientific gatherings and has facilitated meetings of potential collaborators in Japan, Australia, Sweden, Canada and across the United States. She has also shared her perspective on research opportunities with policymakers in Congress and the federal health agencies, an important adjunct to our research effort.

Before Suzanne joined our staff in November 2007, the CFS community didn’t have a scientist whose sole focus was to help harness existing data in new ways, connect CFS researchers and reach out to people working in other fields and institutions who might catapult progress. That dedicated position is a tremendous asset, not only to our organization, but to the entire field of CFS research.

I agree that research is important, but is the CFIDS Association still paying attention to other priorities like educating the medical establishment?
KM: Ultimately, every physician should recognize that CFS is a real, biological illness and should be able to diagnose and provide care to CFS patients. We’ve established some important partnerships to build toward that goal, like the online course we’re developing with Medscape (described in the summer 2008 CFIDS Chronicle), and the public awareness campaign conducted with the U.S. Centers for Disease Control and Prevention (CDC).  

But to make meaningful advances in patient care, we need to identify better tools for diagnosing CFS and more effective treatments for it. The research program’s focus on the discovery of biomarkers, objective diagnostics and better therapies will directly impact clinical care in the future.

If I give to the Campaign to Accelerate CFS Research, will you ask me to give to other aspects of the CFIDS Association’s work?
KM: The short answer is “yes.” And here’s why.

All of the money we raise through the Campaign to Accelerate CFS Research will go directly to that program. But that’s not all the CFIDS Association does. We provide support to people with CFS; we inform the public; we educate medical professionals; we advocate for better CFS public policy; and we publish the CFIDS Chronicle, the CFIDSLink and other educational materials. These services are paid for through contributions to the Association’s annual fund, general donations made throughout the year and (previous) membership dues. Without that support (in addition to funds restricted to the research program) the Association would cease to exist, and so would all the work we do.

One million dollars doesn’t seem like a lot of money for this ambitious an effort. How will you measure success?
KM: Raising $1 million in one year for research into biomarkers, diagnostics and treatments for CFS is the largest development initiative ever undertaken by the CFIDS Association or any other nongovernmental entity. You’re right that $1 million isn’t likely to solve all the scientific challenges we face. What it can do is push the process forward in new ways. That itself would be a success over the status quo.

But there’s more at stake here. This campaign and its $1 million goal for 2008 is a bold step that sends the signal we’re in this together and ready to make change. The community has responded enthusiastically to that idea, and the goal is within reach, with nearly $900,000 raised or pledged through mid-July. That’s a major accomplishment, aimed at key leverage points to move us forward.

Achieving ultimate success—a cure for CFS—will likely require setting even more ambitious goals in the future. But getting on that path with this campaign will be a success we can all share. We need your help to make it happen!

Learn more about the Campaign to Accelerate CFS Research.

Read some other people’s stories and perspectives about this campaign:
Dr. Charles Lapp, who treats patients with CFS
Pam Nadeau, a mother of three children with CFS
Brian Smith, a young professional with CFS

Help the Association propel CFS research forward by raising $1 million this year to accelerate discovery of biomarkers and better treatments. Donate now to the Campaign to Accelerate CFS Research. Give now and your gift will be matched by the WWW Foundation.