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Shift in NIH Funding Streams Deserves Our Attention

Craig Maupin at the

In a small town close to my home, there is a local diner. Around 9 p.m., the diner temporarily shuts down for the night. The diner’s closing is no cause for alarm. The temporary shutdown is a comfortable fact of life in this small town. Local residents confidently know that a short-order breakfast will still be available when the diner reopens in the morning.

Last winter, when the last of the NIH-sponsored CFS Coordinating Research Centers (CFSCRC) was told its renewal would be discontinued , I just wish I could be certain it was the start of a new commitment, rather than a sign of a lack of current commitment. The centers are now floundering, waiting for the grant approval process to run its course. The closings seemed hasty, leaving some promising CFS research in limbo. It was hardly a soft landing.

According to sources at the NIAID (National Institutes of Allergies and Infectious Diseases), the centers' charter was not renewed because the NIH and the NIAID no longer feel that CFS falls under the NIAID's duties. The Office of Research and Women’s Health (ORWH) will administer the funds previously allocated to the CFSCRC in January 2004. Yet, it would appear more difficult to defend the presupposition that CFS is a women's illness than the closings of the centers were from a lack of multidisciplanary focus. Could it be more likely that the closings of the CFSCRC stem from the lack of any institute willing to fund the centers? Perhaps the NIAID simply got tired of footing the CFS research bill. The ORWH was the only agency within the NIH willing to step up and take the challenge.

Although doubtful what is happening now at the NIH, an adequate justification for closing the CFSCRC could be to attract fresh new talent to the field. With the exception of the Miami center, the CFSCRC was no doubt under-weighted in regards to microbiological research. Even so, the research centers were varied in their views on CFS. However, if the closing of the CFSCRC were to use the funds to attract more technically capable researchers, then wouldn’t a plan to accomplish this be on the table? At the moment, there appears to be no such plan.

The ORWH claims a key goal will be to make sure their distribution of funds is done in a way that is “multidisciplinary”. However, the NIH should emphasize effectiveness, business savvy, progress, and modernization in their funding decisions over trendy buzzwords.

The Effective Sniper or the Political Shotgun?

A marksman’s bullet is more effective than a politically-derived shotgun. Whatever the illness, the goal of the NIH should be to fund research in the most promising areas. If NIH defines success as funding as many disciplines as possible, this simply won't happen. CFS research desperately needs to build on past breakthroughs, and finding a biomarker should be a primary goal. Some distinct findings have surfaced that are exclusive to CFS. Immunological research at Temple University, genetic profiling at the CDC, cardiological output, and red blood cell abnormalities (Miami) have all produced results that are amazingly unique and exclusive to CFS.

Precedence and priority should be given to those research projects that build on these powerfully illuminating discoveries. The NIH simply hasn't done that in the past. In a recent genetic profiling study by the CDC, researchers highlighted “RNA protein processing”, as well as differences in microbial responses, as future study areas that may yield more answers to CFS. Unfortunately, CFS research is not attracting researchers capable of this research. If we spread 12 million dollars in a “multidisciplinary” shotgun, factor in the expense of research needed to uncover “metabolic dysfunction, and the mathematical outcome isn’t pretty.

When it comes to CFS funding, simplistic studies done 15 years ago seem to come through the pipeline again and again. Surveys on PWC attitudes/perceptions, twin comparisons, and never-ending epidemiological counting seem to be the zombies that never die, draining funds from more objective approaches. Sadly, for many years, much of what has passed for CFS research is hardly challenging, modern, or technical. In fact, much CFS research appears more at home at a middle school science fair, riddled with assumptions and speculation. The public perceptions of both CFS research, and those who suffer from the illness, have suffered as a result. While advocates are continually focused on how much is funded, the truth is, CFS research needs more technical approach first. This new approach will take time to build.

At a summer 2003 CFS conference sponsored by the ORWH, the docket was stacked with researchers who seem to view "women’s illnesses" as mood, perception, and "central processing/learning" related. Most of the scheduled researchers seemed to favor predominantly psychiatric topics: HPA axis, autonomic nervous system, neuroactive drugs, sleep, imaging studies (including PET and functional MRI scans). Dedra Buchwald, who has headed an NIH-sponsored Washington University center that has forged a controversial model of CFS that claims misperceptions and deconditioning is a predominant factor in women’s emerging illnesses, chaired the conference. Leslie Crofford, who focuses on a similar "central processing" model was also brought on board. Is this a sneak peek at the future chosen path of CFS research at the NIH? An eve more pertinent questoin would be, is this focus on "central processing and learning" how the NIH defines “multidisciplinary”?

While opinions concerning the effectiveness of the CFSCRC centers vary, at least the establishment of the centers guaranteed a certain level of funding. It is a good time to ask what those guarantees are replaced by? The CFS community should give those who will now be making important funding decisions a chance to answer that question. They deserve that much. But while the opportunity is certainly available to do some exciting things, the truth will be in the details. Although each center had a different model of CFS, the centers together forged a truly multidisciplinary approach. The 2003 conference simply forged a "central processing" approach to CFS research that favored the University of Washington 4P perception-based model.

What is at Stake?

There is a widespread perception that the ORWH is not an agency capable of involvement with highly technical research -- women's brains, hormones, and emotions, rather than microbiology. There is also a perception that the very reason they were given oversight of CFIDS funds is a belief that the NIH could not find anyone else to take a "hot potato" CFS program. I believe the ORWH can prove these perceptions wrong, and build a strong CFS program at the NIH. I also believe the leadership there, while seemingly getting their feet wet in the complexities of CFS, is committed and daring enough to make a difference.

The ORWH can stimulate exciting, modern, microbiological research into CFS. But to do so, they desperately need to formulate a plan and get a grasp on the political complexities an the internal and external CFS research community often affected by commercial and sociological struggles over etiological direction. Offering seed grants -- to attract technically gifted microbiologists to CFS research -- would be a start. The NIH should focus on research that adds to findings that are exclusive to CFS, findings that set the illness apart. CFS research needs researchers who can build on the immune irregularities, hematological/vascular research, and genetic profiling research of the last decade. And admittedly, much of this was funded by the NIH.

Despite widespread skepticism, the current changes at the NIH are an opportunity for both the ORWH and the CFS community. Most CFS advocates long for an improved relationship between the patient community and the goliath medical research agency. Progress demands some tough decisions and an openminded, pioneering vision – a technical direction. As we enter a new era, there is almost as much at stake for the ORWH than there is for those who suffer from CFS. I, for one, believe the ORWH is up to the task.