This article by HealthCentral ME/CFS Health Guide Karen Lee Richards is reproduced with kind permission from HealthCentral.com ©2012, all rights reserved. It was first published Mar 8, 2012.
Woman Asked President Obama for More Chronic Syndrome Research (One Year Ago)
By Karen Lee Richards
It’s been… a year since Courtney Miller, wife of ME/CFS patient Bob Miller, stood up at at Town Hall meeting in Reno, Nevada and asked President Obama to help her family by asking the National Institutes of Health (NIH) to increase funding for chronic fatigue syndrome (ME/CFS).
At the time, the president said, “…what I promise I will do when I get back is I will have the National Institute of Health explain to me what they’re currently doing and start seeing if they can do more on this particular ailment.”
According to Cort Johnson’s post on Phoenix Rising, the Millers were able to talk with the president after the town hall meeting and he said he would be on top of the NIH for ME/CFS. That was in April 2011. I don’t know whether President Obama has kept his promise or not. I sincerely hope he has, or is in the process of doing so.
Here is a video of Courtney Miller’s interaction with President Obama, recently posted on YouTube by Simmaron Research. (Dr. Daniel Peterson’s organization.)
Although there were no increases for ME/CFS research in the NIH’s 2012 budget, I know budget increases take time and have to have Congressional approval, which is a long and time-consuming process. So I’m still holding out hope that we’ll see an increase in the 2013 budget for ME/CFS research.
Here are a few facts* that will give you an idea of just how poorly ME/CFS is funded:
• The estimated cost of ME/CFS to the U.S. from Medicare, disability, lost tax revenue, medical expenses and lost productivity ranges from $23 billion to $70 billion annually. Yet the NIH has only allotted a paltry $6 million to ME/CFS research in 2012.
• To look at this from another perspective, although multiple sclerosis is estimated to affect only 500,000 Americans, the NIH has devoted $135 million to MS research this year. And Lyme disease, which affects just 150,000 Americans, has been allotted $25 million. Yet ME/CFS, estimated by the CDC to affect between 1-4 million Americans, is getting only $6 million. And ME/CFS can be every bit as debilitating as MS and Lyme disease, if not more so.
• NIH funding for ME/CFS has remained at roughly the same level for the past 10 years.
• On a per capita basis, the NIH spends between $1.50 and $6.00 per person with ME/CFS on research.
I don’t begrudge other illnesses their research dollars. I just want to know why ME/CFS doesn’t deserve similar levels of funding. There’s just no excuse for an illness that affects so many people and is so debilitating to be treated so poorly when it comes to funding for research.
* Source: ME/CFS Worldwide Patient Alliance. “Government Research Funding.” Retrieved March 8, 2012.