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Building an ME/CFS Research Initiative at NIH that Works: a Community Approach

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By Courtney Miller

Uniting the ME/CFS community is not easy, but it has never been more important than right now. One thing we all agree on is the urgent need for vastly increased funding at the National Institutes of Health, our nation’s scientific research machine. When two federally funded reports told NIH that there was an “urgent need” to invest in ME/CFS research, a number of advocates seized the opportunity to push even harder for substantive change.

Among the efforts, a recent one was aimed at demonstrating consensus among advocacy groups on a platform of immediate next steps toward full funding at NIH. I worked with many ME/CFS advocacy organizations to fashion a 5-point platform for next steps at NIH and, with endorsement of a broad set of groups, sent it to Secretary of Health Burwell and NIH Director Collins in September.

The 1-page platform [see below] builds on engagement by patients, experts and advocates since the release of the IOM and P2P reports. Last spring, more than 500 patients and caregivers sent emails to Secretary Burwell and Director Collins highlighting the “urgent need for research” validated by both panels, calling on them for equal funding. CFSAC, with significant input from advocates, made recommendations to operationalize the IOM report and much more. SolveMECFS hosted a Congressional Briefing with Morgan Fairchild, among other things, and advocates engaged meaningfully with the Senate Appropriations Committee after it zeroed the minuscule funds earmarked to CFS in the CDC budget. MEAction is a welcome new force in catalyzing patient engagement.

The confluence of the two federal reports, the results of the Lipkin/Hornig immune studies, and numerous powerful media stories have created a demand for change that that has rarely been seen before.

I believe it is important to demonstrate our unity, to show the Secretary and NIH at every turn that we are united in our goal of equal funding for the science that can diagnose, treat and cure our disease. The more we act in concert, the more we will achieve.
____________________

To: Secretary of Health and Human Services Sylvia Burwell; National Institutes of Health Director Francis Collins
 
Building an ME/CFS Research Initiative at NIH that Works: a Community Approach
 
The ME/CFS community is united in its goal of NIH funding commensurate with the burden and costs of our disease, and on par with research funding for diseases like Multiple Sclerosis. The recent reports by the Institute of Medicine and NIH Pathways to Prevention Program validate the “urgent need” to research ME/CFS. They are a call to action.
 
We understand NIH is evaluating next steps in addressing the gaps in ME/CFS science. We believe the following elements are essential and immediate next steps for NIH to build an ME/CFS initiative that catalyzes recent advances and works for the long term to return more than one million Americans to health. They are consistent with the blueprint outlined in the Pathways to Prevention report and recommendations from the Secretary’s Chronic Fatigue Syndrome Advisory Committee.
 
Essential, Immediate Steps for NIH to Build an ME/CFS Research Initiative that Works:
 
1. Assign ME/CFS to a strong, well-funded Institute like NINDS, to enable strategic planning and structural accountability.
 
2. Fund a mix of intramural and extramural research (as NIH does for Multiple Sclerosis and scores of other diseases), including a focus on identifying diagnostic biomarkers.
 
3. Form and fund translational networks and centers of excellence, utilizing clinical experts in the field to build on recent collaborations and findings.
 
4. Design and fund clinical trials for drug development, so ME/CFS patients can have our AZT; government can catalyze private investment by the pharmaceutical industry; and scientists can study the responders.
 
5. Present a plan to ramp up funding to a per-patient level on par with Multiple Sclerosis over the next two to three years.
 
MS is a strong example that embodies the promise of scientific research at NIH. 30 years ago, MS – with similar symptoms – was stigmatized as ME/CFS is now. Today MS is treatable with one of 13 FDA-approved medications because of NIH-led science. This gives us great confidence in the power of the NIH.
 
With a strong investment in NIH research, ME/CFS patients are within reach of diagnostic tests and FDA-approved treatments. In 2012, President Obama asked NIH to elevate ME/CFS research, and the IOM and P2P reports provide the roadmap and scientific imperative. Together, let’s build an ME/CFS research initiative that works for patients' health and scientific advancement.

Signed
 

Courtney and Robert Miller (25-year patient), obtained Pres. Obama’s promise to elevate ME/CFS

Solve ME/CFS Initiative, Los Angeles, CA, national association

Health Rising, online patient community

Simmaron Research, Incline Village, NV

Massachusetts CFIDS/ME & FM Association, Quincy, MA

Open Medicine Foundation, Mountain View, CA

New Jersey ME/CFS Association, Florham, NJ

Chronic Fatigue Syndrome Research Center at Stanford University


ProHealth, online patient community

Myalgic Encephalomyelitis Action Network, online patient community

Workwell Foundation, Ripon, CA

Wisconsin ME and CFS Association, Inc.

ProHealth CBD Store

 

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