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Family wants more research on Chronic Fatigue Syndrome
Saturday 1 September 2012
Chronic Fatigue Syndrome is a debilitating disease that does not have a universally accepted definition of the disorder, a diagnosis, or treatment and yet roughly 17 million people around the world are believed to have it.
Robert Miller and his family say more research needs to be done.
For over 20 years Miller has been battling a disorder that makes the first task of a day one of the hardest.
"It's very difficult to describe you literally can't get up you can't force yourself to get up," Miller says.
CFS according to the National Institute[s] of Health, causes incapacitating fatigue experienced as profound exhaustion and extremely poor stamina.
Miller needs a minimum of 12 hours of sleep and even then daily activities are difficult.
"If I get up and make myself breakfast that may mean that I can't go outside and throw the ball with my son or if I go outside and throw the ball with my sons I can't get out of bed tomorrow," Miller says.
Robert and his wife Courtney have twin sons.
Both carry some of what dad's burden would be and help out a lot around the house.
Courtney says their family is in this together.
"If it had been me I know he would never have walked away," Courtney Miller says.
According to the NIH between one and four [million] Americans are believed to have CFS.
A wide range because there is not universal diagnosis.
In 2011 president Obama spoke at ElectraTherm Courtney Miller was one of a few and got to ask the President a question so important to her family. [See earlier news article.]
“We spend less than $6 million for NIH research on this illness and I’m asking you for my husband and my kids who want their father to be able to go to their baseball games if there’s a way to make improvements in that," Courtney Miller asked the President.
"Based on the story that you told me what I promise to do when I get back is I will have the National Institute of Health explain to me what they’re currently doing and see if they can do more on this particular ailment," President Obama replied back in 2011.
And that was a promise Courtney says the President kept in a letter he wrote last month.
In the letter Obama says he found the NIH has increased research spending for CFS 31-percent.
The President wrote he also wants to stay updated in the research of the disease.
A small triumph for this Reno family.
“Just the fact the president did that was the best thing he could do for my family," Courtney Miller says.
Robert just hopes more research is done so he can play the role he so desperately wants to for his family.
"Allow me to become a real father and a real husband," Robert Miller says.
Until then they just have to take one day at a time.
Robert says he's been taking a medication called Ampligen which is a part of a clinical trial that has changed his energy dramatically.
He says this is all steps in the right direction.
The above, with comments, originally appeared here.
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