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Testimony to the Chronic Fatigue Syndrome Advisory Committee (May 2007): Disconnect At the National Institutes of Health by Cort Johnson

Watching the progress of CFS research is a bewildering experience. There is a sense right now that researchers are on the cusp of something big; there is talk of ‘coherence’ and ‘synthesis’. Japan has mounted a major effort on CFS that is bearing fruit. The CAA and CDC’s press campaign appears to have garnered CFS real legitimacy not only in the public’s eye but with physicians and researchers as well. It seems that in many arenas CFS has finally ‘arrived’.

But not in all of them. Unfortunately that air of promise is not reflected in the current course of the DHHS. We are not seeing funding that matches the increasingly promising research findings.  In fact in parts of the DHHS we are seeing the opposite.

Seven years ago the NIH was funding three research centers and a research grant program. At their peak the research centers were producing about 14 studies a year. Now the NIH has trouble funding more than a few  studies a year and Dr. Hanna recently said that the institutes would support a research grants program or a Center of Excellence but not both. As the legitimacy of CFS becomes every more apparent outside the NIH it’s it’s legitimacy within the NIH appears to have declined.

A good case in point concerns the ORWH’s single big effort of the past six years the Neuroimmune RFA. This RFA had the potential to double NIH funding on CFS and for a time it appeared that it would. The response of the research community was good enough that Dr. Hanna speculated at a CFSAC meeting that $4,000,000 might end up being the floor not the ceiling of the RFA.

In fact only about $1,000,000 or a fourth of the funds available went to projects specifically focused on CFS. It was remarkable that after a four year effort specifically designed to bring new researchers into the field the NIH could not bring itself to fund even one.

It certainly had the opportunity to do so. Dr. Andrew Lloyd has over the past 10 years co-authored approximately forty papers on CFS, hepatitis C, fatigue states in cancer, HIV and others. He is the leader of the groundbreaking Dubbo project examining the physiological changes that occur as people come down with CFS following an infection. These studies  have a chance to revolutionize our understanding of this disease. The Dubbo project results to date have suggested that immune and nervous system abnormalities play a key role in the disease process in this set of CFS patients.

The Dubbo’s projects next course was an examination of the neuro-immune interface in CFS. Despite Dr. Lloyd’s resume, the success of the past Dubbo projects, the innovative nature of these projects, and the fact that they fit the parameters of the Neuroimmune RFA perfectly neither of two grants he submitted to the RFA were funded. Another grant attempt at the CFS SEP failed.

The CDC to its credit was the major sponsor of Dr. Lloyds efforts but with funding woes of its own it withdrew its sponsorship. If the Dubbo project does not receive more funding this year it will shut down. That the DHHS could not find the funds somewhere to support this researcher and this project indicates that it has not gotten the message about CFS.

In the July 06 CFSAC meeting Dr. Hanna said that “The major task of the CFS working group will be to plan for the next meeting (of the RFA grant awardees)”This remarkable statement – that once a month 20 some representatives from the institutes, some of which hold high level positions – are going to meet largely in order to plan for a meeting of seven grant rewardees, indicates that the Trans-NIH Working Group is moribund and that its reason for being has passed. This group is not involved in creating a cohesive, multi-disciplinary program to attack a fairly common and often disabling disease.

CFS patients have waited for five years for the program at the ORWH to get underway. They are unbelievably frustrated at what, wrongly or not, appears to be dawdling and inattention. During that time they have seen research efforts not only not increase but decline dramatically from already low levels.

 The poor performance of the Neuroimmune RFA and the continuing decline in support from the NIH suggests that the CFS research program has failed and needs to be revamped. Instead of administrators determining the focus of CFS research researchers need to do so. The NIH needs to do for CFS what it does for numerous other diseases; fund CFS research centers run by CFS researchers committed to exploring the multi-systemic nature of the disease. It needs to give CFS the legitimacy its own studies have demonstrated it should have.