+100%-

The Power of the P2P and IOM: Pressure Builds for NIH To Increase Research Funding for ME/CFS

resource pie for ME/CFS

It’s time ME/CFS got its share of the resource pie!

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.” A window of opportunity has opened. Now 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 the 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.

“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 and IOM reports lie in their remarkably similar conclusion: that ME/CFS is a complex and serious physiological disease that urgently requires greatly increased levels of rigorous, evidence-based research. The fact that many of the authors were independent scientists with no connection to ME/CFS gives the reports that much more weight.

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

Courtney Miller gets President Obama's Promise

Courtney Miller gets President Obama’s Promise

Email Secretary of Health Burwell and NIH Director Collins with this draft email. Help us reach a goal of 1,000 emails to the Secretary of Health and NIH Director. We ask you to cc the White House and Courtney, so that we can know how many emails are sent.

INSTRUCTIONS:

  1. Click the PDF button at the bottom of this blog to make copying easier!
  2. Then copy and paste the email addresses and the email text into your own email message, and feel free to add your own personal story.
  3. Please ask friends or family members to also send an email. They may have to change a few phrases, since we drafted it from patients.

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

Re: 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 experts independent of the ME/CFS field. 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 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.

“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 1-2.5 million Americans suffering with the disease. That is not enough funding to spur breakthrough science, and I suffer without any FDA-approved treatments.

By contrast, illnesses  with fewer patients such as Multiple Sclerosis and Systemic Lupus receive more than $100 million annually in NIH research funding. 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 rejected the only medication produced for ME/CFS in clinical trials in 2013. Please help me by funding medical research into ME/CFS equally and urgently, so I can get well and return to work and my life.

Patient Name:

Years Ill:

State:

thermometer 160Here’s where we are in our effort to get a 1,000 emails sent:

 

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