Friday, May 8, 2015

Unite for Equal Funding at NIH!

By Robert and Courtney Miller

Two scientific reports in two months by experts independent of the ME/CFS field say the same thing: "The committee stresses that more research is urgently needed." To change our disease, we must work together to push the National Institutes of Health to increase funding for research. Join us by emailing the Secretary of Health and Director of NIH for equal funding for ME/CFS research!

The Institute of Medicine, an arm of the widely-respected National Academy of Sciences, and National Institute of Health's own Pathways to Prevention Program have issued urgent calls to federal health agencies and the NIH to conduct more medical research into the causes and treatments for ME/CFS, also known as Systemic Exertion Intolerance Disease.
"Remarkably little research funding has been made available to study the cause of ME/CFS, mechanisms associated with the development and progression of the disease, or effective treatment, especially given the number of people affected." Institute of Medicine
"Unfortunately, ME/CFS is an area where the research and medical community has frustrated its constituents, by failing to assess and treat the disease and by allowing patients to be stigmatized....Over the last 20 years, minimal progress has been made to improve the state of the science for patients with ME/CFS.... Innovative biomedical research is urgently needed to identify risk and therapeutic targets, and for translation efforts." NIH Pathways to Prevention Report

The power of the P2P report and the IOM report is in the common conclusions that the need for evidence-based research is urgent and that ME/CFS is a complex, serious physiological disease. And the P2P and IOM recommendations are more powerful because they came from independent scientists.

Best Opportunity in Decades to UNITE for Equal Funding!

We have powerful ammunition from prestigious institutions to press for equal research funding from the NIH. The need isn't new, but having demands from well-respected institutions outside of our illness is.

Please take positive action to raise the pressure for #EqualFunding for ME/CFS. We can make this opportunity bigger by organizing our community to speak with one voice on the need for more research funding.

EMAIL CAMPAIGN

Help us reach a goal of 1,000 emails to Secretary of Health Burwell and NIH Director Collins!

Copy and paste the email addresses below into the “To” section of your email. Then copy and paste the template email text. Feel free to add your own personal story. Family members or supporters may have to change a few phrases, since we drafted the letter from the perspective of patients.

We ask you to cc the White House and Courtney, so that we can know how many emails are sent.

Thank you!!

Robert and Courtney Miller

___________________________

TEMPLATE

Email addresses:

To: sylvia.burwell@hhs.gov, scheduling@hhs.gov, francis.collins@nih.gov, collinsf@od.nih.gov, brewera@od.nih.gov

Cc: jarrettpublic@who.eop.gov, courtneymiller999@gmail.com

Subject Line: Equal Funding for Chronic Fatigue Syndrome (ME/CFS) Research

Dear Secretary Burwell and Dr. Collins:

I am disabled with ME/CFS, and I am writing to ask you to raise research funding for my disease to a level of $100 million annually, equal to illnesses like Multiple Sclerosis and Systemic Lupus.

I want to highlight two scientific reports commissioned by HHS that were released in the last two months by independent experts. They say the same thing: "The committee stresses that more research is urgently needed."

The Institute of Medicine, an arm of the widely respected National Academy of Sciences, and National Institutes of Health's own Pathways to Prevention Program have issued urgent calls to federal health agencies and the NIH to conduct more medical research into the causes of and treatments for ME/CFS.

"Remarkably little research funding has been made available to study the cause of ME/CFS, mechanisms associated with the development and progression of the disease, or effective treatment, especially given the number of people affected." Institute of Medicine

"Unfortunately, ME/CFS is an area where the research and medical community has frustrated its constituents, by failing to assess and treat the disease and by allowing patients to be stigmatized....Over the last 20 years, minimal progress has been made to improve the state of the science for patients with ME/CFS.... Innovative biomedical research is urgently needed to identify risk and therapeutic targets, and for translation efforts." NIH Pathways to Prevention Report

NIH currently funds only $5 million annually for CFS research, despite the fact that 1-2.5 million Americans suffer with the disease. That is not enough funding to spur breakthrough science, much less FDA-approved treatments. By contrast, illnesses such as Multiple Sclerosis and Systemic Lupus receive more than $100 million annually in NIH research funding, although fewer patients are ill. Those diseases now boast diagnostic tests and many FDA-approved treatments because of the high quality research NIH has funded in those fields. That is what patients like me so desperately need, and I believe that is what it takes to fulfill President Obama’s 2012 commitment to elevate CFS at the NIH.

I have no treatments and I am very ill. The FDA has rejected the only medication that has undergone clinical trials. Please help me by funding medical research into ME/CFS equally and urgently, so I can get well and return to work and live my life.

Patient Name:

Years Ill:

State:

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