Why We Need ACTION Now!

While Dr. Koroshetz's plan outlines many of the critical issues facing the disease, his strategies for allocating resources and addressing critical barriers are far too weak and inadequate to address the ME crisis.

NIH’s lack of urgency in its response is reinforced by how little in this report is new. While more detailed, the report reiterates the same problems that have been highlighted in many previous reports. We have spent years outlining the same issues and yet we find ourselves in much the same position as before: we see our problems restated again in a formal report with no concrete, comprehensive plans to tackle them.

Community-funded organizations are outpacing NIH in research support and are delivering solutions today. These efforts are being funded and supported largely by an impoverished patient community with little support from NIH, whose funds should always eclipse community efforts.

The ME community needs far more than a few programmatic tweaks from the NIH. We desperately need bold leadership and allocated resources to tackle this crisis. We cannot wait several more decades to see results. Stop kicking the can down the road, Dr. Koroshetz! Start allocating resources now for ME research!

#MEAction has sent the following letter to Dr. Koroshetz calling on him to take these immediate steps.

1. Provide multiple, multi-year ME/CFS-specific program announcements, including those with set-aside funding, to fund researchers and accelerate research in both adult and pediatric populations. These must be consistently available year-over-year with growth-trajectory increases in order to effectively build up the field.

2. Effectively and rapidly address the critical barriers impeding research. In particular, NIH must fund and support a meeting of ME researchers and clinicians to reach consensus on patient selection methods and criteria for research.

3. Provide RFAs to accelerate identification and validation of biomarkers.

4. Fund establishment of a clinical trials network and clinical treatment trials, a recommendation broadly supported by the US ME/CFS Clinician Coalition.

5. Use NIH’s political leadership and partnership with other federal agencies to proactively and boldly address the stigma and clinical crisis that are impeding progress in research.

Read our full letter to Dr. Koroshetz here.

Read more about our #NotEnough campaign.