Last week’s long-awaited briefing on the National Institutes of Health’s Pathways to Prevention (P2P) report on ME/CFS failed miserably at continuing the momentum created earlier this year by the Feb. 10 Institute of Medicine publication on the disease.
The P2P report was published three long years after the NIH launched the process of including ME/CFS in the P2P program. With so much time allotted to the process, expectations were bound to build. And build they did, even as the process was found to be riddled with errors. A number of public comments were omitted from the draft report, and as we learned June 16, also from the final report itself, despite the fact that their omission was openly and repeatedly documented.
ME/CFS sufferers and their families are used to being ignored. We have suffered for decades, losing our health, our work, our loved ones and, even, tragically our lives. We have endured the dismissal, disbelief and outright disdain of our social circles, the medical community and the public at large. Many have come to accept the fact that we are just as invisible as our illness.
To finally receive attention at the federal government level for the P2P after languishing for decades in oblivion caused many in the ME/CFS community to have our hopes raised that, yes, maybe we have reached a turning point. Maybe we have finally entered the Age of Enlightenment in the history of this dread disease. Maybe federal officials have at long last opened their eyes to the physical, social and economic desolation and devastation that ME/CFS causes and the desperate need to increase research funding to rectify that.
As many times as we have been let down before, ME/CFS patients and their families allowed themselves to be cautiously optimistic about the outcome of the P2P process. Encouraged by the forthright IOM report and its champion, Dr. Ellen Wright Clayton, who urged us to “Act Up,” we felt we may be on the verge of finally being seen. And heard. And, most important, helped. We were ready for a bang and instead got a whimper.
The final report itself varied little from the original draft. Key comments are still omitted, notably those related to the dearth of research funding. The economic burden was diminished as well; the final P2P report placed it at $2 to $7 billion, compared with the much more substantial—and arguably more accurate—sum of $17 to $24 billion estimated by the IOM. Further, the explanation for this disparity was not adequately explained or justified on the very brief telebriefing, which wrapped up three years of research on a lifetime of suffering, leaving patients in that same painful place where they started.
As disappointing as the P2P report was, we will not let it derail our own efforts to make ME/CFS understood, diagnosable and treatable. We must realize that while the Pathways to Prevention process was woefully inadequate in identifying research gaps and needs, it will not stop the good work of research organizations like ours that are funded through the generosity of patients and their families. We will continue to execute on our ambitious multiyear research plan and persist in our demands for an equitable level of federal research funding to bring help to those whose lives have been stolen by this insidious illness. Anything less is inhumane.