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Join with #MEAction, and tell the NIH Institute Director, Dr. Walter Koroshetz, that his “plan” for Myalgic Encephalomyelitis (ME) is NOT ENOUGH.

 

This plan is not funded enough, not outcomes-focused enough and not urgent enough for a disease that has been neglected, stigmatized, and misdirected for over 30 years! We cannot wait several more decades to start the work. The NIH must allocate resources NOW to accelerate research! 

 

#MEAction has sent the following letter to Dr. Koroshetz calling on him to take these five actions now:

 

  1. Provide set-aside funding for ME to accelerate research

  2. Organize meeting of ME experts to reach consensus on patient selection methods and criteria

  3. Fund the identification and validation of biomarkers

  4. Fund a clinical trials network and treatment trials

  5. Address disease stigma and lack of clinicians impeding research

Sign the petition, tell Dr. Koroshetz his plan is #NotEnough4ME

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. 

Our Community is in Crisis 

ME has been neglected, stigmatized, and mischaracterized for decades driving away both the medical and research communities. The stigma around the disease has destroyed the research and clinical care ecosystem that drives progress in every other disease, leaving patients with no treatments and dismissive, disbelieving and helpless medical providers.

Meanwhile, ME causes more functional impairment and a lower quality-of-life than many other chronic diseases, and it can strike anyone at any time.

More than 1 million Americans have ME. Each year, thousands more Americans will contract ME without any better access to treatment or care than those who became ill in the 1980s. There continues to be no FDA-approved treatments for ME.

We face a crisis in research funding and clinical care: 

Research funding for ME is absurdly deficient. If you add up all the funding that the NIH has allocated to ME research over the past two decades, it wouldn't even reach the total amount that the NIH should be spending in one year on ME! For the past few decades, the NIH has funded ME at an average $5 million per year. Two years ago, NIH funding for ME increased to $13 million but research shows that NIH funding for ME should be at $188 million based on the disease burden, which is how NIH largely allocates funding. It is near impossible to make reasonable progress on $13 million per year.
 

There is a crisis in clinical care. It is extremely difficult to find a doctor who can diagnose or treat ME. Currently, there are only 15 practicing ME specialists in the country - many of them nearing retirement age. At the same time, less than one third of medical schools teach about the disease. 

NIH has stated that clinical issues are outside its remit. However, acquiring enough research subjects is already one of the most fundamental barriers to ME research. Without knowledgeable clinicians to help design studies, properly diagnose ME and identify study participants, research cannot move forward.

Read our full letter to Dr. Koroshetz here.

 

 

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